We are aiming for transition to out-patient on Sunday.
Counts:
Tuesday, July 28: Platelets ~ 138, Hematocrit ~ 25, ANC ~ 1608, Weight ~ 12.8K
Highlights with the OffSpring (or OddSpring, Freudian texting?):
Sunday, arrival and overwhelming, OMG I have three kids and they are all here! It was challenging enough parenting three kids before..... I am so grateful for the support that I have. It's going to be tough transitioning back to HomeHome, but Larry's pretty awesome and we will get through it.
Monday, We hung out at the unit. The knitting group was here and AnnMarie and I spent some time sitting, chatting, learning. AnnMarie has officially been taught how to knit. So thankful that someone else did it. She is now the proud owner of a pair of yellow needles, whose tips light up and a skein of bulky yarn to practice with. She carries it with her everywhere. (Wonder where she could have learned THAT?) She is so terribly proud of herself. When we get HomeHome, she and I will have to refine her skills and get her started on a project.
Curtis found the X-Box 360 and was happily occupied for quite some time. We then got out of the hospital to run a few errands and be together. While I'm sure that they have been washing hands at home, while they were here we had a crash course in keeping germ free.
Opening the bathroom door with a paper towel, if it's a push door use your elbow or hip, do not use railings on stairs, ask for wrapped straws, if you do touch stuff don't rub your face or eat, hand sanitizer gel, hand sanitizer gel, hand sanitizer gel............ I think they are going to get sick of me asking "Did you wash/gel your hands?" They are also quickly learning what Gregory can/cannot eat.
Tuesday~ Movie and a Pass. Why oh why, did no one tell me how sad the beginning of UP is? Curtis, AnnMarie and I decided we needed to catch a flick, together. We went to see UP. The first ten minutes of the film were heart breakingly sad. I was full on bawling. AnnMarie would stroke my arm, from time to time, and tell me, "Mommy. It's ony a movie." She said it with all the comforting that I would use with her. Facial expression and all. Priceless. All in all, we enjoyed it. When we got back, we were able to take Gregory out of the hospital for a four hour pass. We went to the apartment and hung out together. After Gregory checked out the apartment he dive bombed the fridge. He had some mini-pancakes with Syrup, some string cheese and some cheese pizza. Huge improvement. It's amazing how a change of environment can do that.
Curtis and AnnMarie, with Nana, left Wednesday morning. They pulled through the entrance to the hospital and we said our Goodbye's. It was a rough one, on me. I wound up bawling, again. While my spirits regarding Gregory are lifted, the exhaustion is huge. New baby sleep deprivation doesn't even compare. I've noticed that my heart is much lighter. Not completely free. I don't think it ever will be. There is a part of it that will be sequestered away. Guarded. Kept under lock and key. This heart breakingly beautiful child has/is going through something so unimaginable. While the rest of us wait and watch. Silently holding our breath, waiting to exhale. I'm giving myself the next two years. One for recovery, one for safety. Provided we don't have any glitches along the way. I'm hoping my sense of safety will begin to return. It will be different, of course. Quietly watching and waiting.
I have yet to mention the crazy weather we have been having. I haven't seen a single news report in weeks, but it has been agonizingly unseasonably warm. Triple digits, too. The power grid that contains Seattle Children's went out last night. Thankfully they have generators for back-up power. It did get a little warm, air conditioning wasn't on reserve power. I'm just grateful that we weren't out-patient. I don't think Ronnie Donnie has back-up power.
Gregory has been receiving Bennedryl at 22:00 & 4:00. Every night. Last night, it was not communicated that he needed a 4:00 dose. At about 5:30 this morning, he started crying, itching and was in pain. It was a good challenge. He certainly still needs his nightly medication. We will be managing his symptoms out-patient. Which includes extra fluids, but not IV fluids. We are giving water through his nG tube. He seems to be tolerating it well.
Thursday Counts: Platelets ~ 157, Hematocrit ~ 26, ANC ~ 2482, Weight ~ 13.1K
His counts seems to have stalled. Which is totally normal. The items that make up his ANC are all over the place. High were they should not be and low where they should not be. Which wacks out his "actual" ANC. His hematocrit has been bouncing between 25 & 26 for about a week. We will be receiving red cells before discharge. That way we can get them while still in the hospital and not have to deal with the whole waiting game.
Gregory tossed his cookies, this morning. About 30 minutes after receiving his AM meds. Which meant that we had to re-dose him. He has been transitioned off of the Morphine drip and onto oral Methadone. He receives an AM dose and a PM dose. I think he processed more of his meds than we thoght. It's nearly 2:00 and he is STILL sacked out. Which is totally OK with me. I'm sure he can use the sleep. It just means that we will be night owls, together, tonight. When we started him on the Methadone, boy was he stoned. It took a few days for him to adjust to it. They started him out with a fairly healthy dose the first 24 hours. Simply to jump start the level, before turning off the Morphine drip. We also switched all of his itch/pain meds to oral. The pharmacy team gave me a list of all the meds that we will be going out-patient with. Yikes! It's long. He receives meds at 6:00, 8:00, 12:00, 16:00, 20:00 & 24:00. Along with his 16 hour nG feeds and his 10 hour Magnesium via IV. Once a week dressing changes and daily Hickman flush. We are going to be busy. We will be going to clinic two days/week. At least to begin with. Monday's and Thursday's. We will see how it goes and we might need to add an additional day, depending on how it all goes.
I feel like I'm tempting fate, by putting all this out there. Sunday will be smooth, as will next weeks clinic appointments. I'm going to miss these people, like crazy. I'm preparing myself for the world of non-pediatric focused care. While our team at SCCA is pediatric, the clinic is not. I'm stealing myself for the stares and comments. The stolen glances, questioning eyes and faces filled with sorrow. What they won't realize is that he has already been through the ring of fire. This Phoenix is activiely rising from the ashes. Rebuiling himself. We are currently at day 49. Day 60 is August 9. They will be doing another Chimerism test. Checking to verify that his cells from perhipherial blood is still 100% donor. I'll be requesting positive energy, as we get closer. Heck, send it now. We can use all we can get.
This has been a large and disjointed entry. Thank you for following along and I hope it made some kind of sense. Hopefully, I'll be in a better position to post regularly again, soon. I'm not in a funk, just extremely guarded and protective. 'til later, gotta jet.
Thursday, July 30, 2009
Monday, July 27, 2009
Fly by. We are doing well.
Counts:
Sunday July 26, Platelets ~ 148, Hematocrit ~ 27, ANC ~ 1493, Weight ~ 13.1
I've been hesitant to post. We have had a few really rough nights, followed by better and better nights. Whenever I talk about Gregory's current state of BK'edness I am frantically looking for the nearest thing made of wood. Needless to say, he is making progress and we are planning for discharge. When? I'm not going to place an expectation out there. It will happen, when it happens.
Curtis and AnnMarie arrived yesterday. It's been a far easier visit than last time. Still incredibly tiring, though. Curtis has been exceptionally challenging, as well.
Just a quick note. We are doing great, busy. Super busy. Time to veg out to Weird Science. (Thanks, Mom!!)
Sunday July 26, Platelets ~ 148, Hematocrit ~ 27, ANC ~ 1493, Weight ~ 13.1
I've been hesitant to post. We have had a few really rough nights, followed by better and better nights. Whenever I talk about Gregory's current state of BK'edness I am frantically looking for the nearest thing made of wood. Needless to say, he is making progress and we are planning for discharge. When? I'm not going to place an expectation out there. It will happen, when it happens.
Curtis and AnnMarie arrived yesterday. It's been a far easier visit than last time. Still incredibly tiring, though. Curtis has been exceptionally challenging, as well.
Just a quick note. We are doing great, busy. Super busy. Time to veg out to Weird Science. (Thanks, Mom!!)
Friday, July 24, 2009
Happily ever after? Certainly.
Counts:
Thursday, July 23: Platelets ~ 100, Hematocrit ~ 25, ANC ~ 1709, Weight ~ 13.2
Friday, July 24: Platelets ~ 123, Hematocrit ~ 26, ANC ~ 1307, Weight ~ 13.1
I have attempted to make this entry several times, today. Meanwhile, every time I have a moment, I am composing more. Journaling in my brain. The best words are still in there. I wish I could transcribe my random/quiet brain diatribes.
We have a good nightime sleep routine in place. I hate drugging him like we are, but he is resting. This mornings 3:00am bladder spasms/pain/itching episode was not as intense and we acted quickly enough to get it under control within like 45 minutes. He had an absolutely great day today. Papa showed up with real tools aplenty, a table top wind up clock and a car stereo. Why the clock and stereo? If you have tools, you need somehting to take apart and reassemble! Brilliant. How many four year olds have a ratchet set, screw driver set, pliers......? He is in seventh heaven. Engineer? Surgeon? Wrench Monkey?
Gregory is still eating next to nothing. Same with fluids. Not unexpected. Due to his chemo regemine, his body is wasting Magnesium. Something we all need. This is also expected and easily remedied. You cannot give it orally, it causes diarhea. Hence, Milk of Magnesia. He has been receiving his Magnesium via IV, as a bolus, over a two hour period, beginning at 8:00 at night. Labs are drawn at 4:00 in the morning. Well, his levels have been good. Until we switched to oral Tacrolimus. Twice a week we check his Tacro levels. There is a targeted level for Tacro. You cannot have too much or not enough. It needs to be just right. In order to do this his level needs to be check at the "Trough". Which is the lowest level of Tacro in his system. Which means that his labs need to be drawn right before a dose. His dosage is at 8:00am, 4:00pm and 12:00pm. Labs are routinely drawn at 4:00am. On his Tacro level days we draw labs right before his 8:00 dose. Four hours later than normal. Now the point of all this explanation........... His magnesium levels at the 8:00 draw are low. The 4:00am draw is too close to his dose to get an accurate level of Magnesium. Thankfully it was caught. They raised his Magnesium bolus. He is now receiving a bag of Magnesium, IV, 10ml/hour for 10 hours. Crazy. I have no idea how long this will go on. Which means another IV med for out-patient. Well, a longer dosage. Potentially.
We are on a Prednisone taper. Gregory's temp has been fluctuating by a good degree. He is usually around 36.2C (97F). Which may seem low, but it is where he likes to be. He has been going to around 37.3 C (99.2F). Not much a fluctuation. Except..... The prednisone masks fevers. He also has been having stomach cramps. His hematocrit took a four point drop in two days. His stools are getting looser and more frequent. Add this all up and my gut (ha, ha) is telling me he has Gut Graft Versus Host (GVH). I could also be totally off base and just hoping that that is what it means. Gregory needs a litlle bit of GVH. Why? He needs some Graft Versus Leukemia (GVL)
*from WIKI JMML entry*
- Graft versus leukemia: Graft versus leukemia has been shown many times to play an important role in curing JMML, and it is usually evidenced in a child after bone marrow transplant through some amount of acute or chronic Graft Versus Host Disease (GVHD). Evidence of either acute or chronic GVHD is linked to a lower relapse rate in JMML. Careful management of immunosuppressant drugs for control of GVHD is essential in JMML; importantly, children who receive less of this prophylaxis have a lower relapse rate. After bone marrow transplant, reducing ongoing immunosuppressive therapy has worked successfully to reverse the course of a bone marrow with a dropping donor percentage and to prevent a relapse.
So. While it would totally suck to have to deal with GVH, I am still hoping for SOME. Just a little bit. Just enough to get the GVL effect. Please.
My very tired, exhausted, sleep deprived brain did receive a small reprieve, today. A fellow caretaker and I (*waves madly to Chuck*) went off campus for Fermented Beverages and Happy Hour priced grub. It was so great to have decent food. So yummy. Thanks, my friend!!
Huge request for tonight........ A friend needs blessing, prayer, karma, juju..... Mighty Maddy had a transplant for AML. At their 80 day work-up they discovered "residual disease" and she will very likely need another transplant. Mom, Dad, Maddy and the sibs need some positive energy. If you can spare some, please send it their way. *Susan! I think of you guys EVERY DAY. Several times a day. My heart is heavy for you, but filled with love and hope.*
********************************************************************************************************************
Thursday, July 23: Platelets ~ 100, Hematocrit ~ 25, ANC ~ 1709, Weight ~ 13.2
Friday, July 24: Platelets ~ 123, Hematocrit ~ 26, ANC ~ 1307, Weight ~ 13.1
I have attempted to make this entry several times, today. Meanwhile, every time I have a moment, I am composing more. Journaling in my brain. The best words are still in there. I wish I could transcribe my random/quiet brain diatribes.
We have a good nightime sleep routine in place. I hate drugging him like we are, but he is resting. This mornings 3:00am bladder spasms/pain/itching episode was not as intense and we acted quickly enough to get it under control within like 45 minutes. He had an absolutely great day today. Papa showed up with real tools aplenty, a table top wind up clock and a car stereo. Why the clock and stereo? If you have tools, you need somehting to take apart and reassemble! Brilliant. How many four year olds have a ratchet set, screw driver set, pliers......? He is in seventh heaven. Engineer? Surgeon? Wrench Monkey?
Gregory is still eating next to nothing. Same with fluids. Not unexpected. Due to his chemo regemine, his body is wasting Magnesium. Something we all need. This is also expected and easily remedied. You cannot give it orally, it causes diarhea. Hence, Milk of Magnesia. He has been receiving his Magnesium via IV, as a bolus, over a two hour period, beginning at 8:00 at night. Labs are drawn at 4:00 in the morning. Well, his levels have been good. Until we switched to oral Tacrolimus. Twice a week we check his Tacro levels. There is a targeted level for Tacro. You cannot have too much or not enough. It needs to be just right. In order to do this his level needs to be check at the "Trough". Which is the lowest level of Tacro in his system. Which means that his labs need to be drawn right before a dose. His dosage is at 8:00am, 4:00pm and 12:00pm. Labs are routinely drawn at 4:00am. On his Tacro level days we draw labs right before his 8:00 dose. Four hours later than normal. Now the point of all this explanation........... His magnesium levels at the 8:00 draw are low. The 4:00am draw is too close to his dose to get an accurate level of Magnesium. Thankfully it was caught. They raised his Magnesium bolus. He is now receiving a bag of Magnesium, IV, 10ml/hour for 10 hours. Crazy. I have no idea how long this will go on. Which means another IV med for out-patient. Well, a longer dosage. Potentially.
We are on a Prednisone taper. Gregory's temp has been fluctuating by a good degree. He is usually around 36.2C (97F). Which may seem low, but it is where he likes to be. He has been going to around 37.3 C (99.2F). Not much a fluctuation. Except..... The prednisone masks fevers. He also has been having stomach cramps. His hematocrit took a four point drop in two days. His stools are getting looser and more frequent. Add this all up and my gut (ha, ha) is telling me he has Gut Graft Versus Host (GVH). I could also be totally off base and just hoping that that is what it means. Gregory needs a litlle bit of GVH. Why? He needs some Graft Versus Leukemia (GVL)
*from WIKI JMML entry*
- Graft versus leukemia: Graft versus leukemia has been shown many times to play an important role in curing JMML, and it is usually evidenced in a child after bone marrow transplant through some amount of acute or chronic Graft Versus Host Disease (GVHD). Evidence of either acute or chronic GVHD is linked to a lower relapse rate in JMML. Careful management of immunosuppressant drugs for control of GVHD is essential in JMML; importantly, children who receive less of this prophylaxis have a lower relapse rate. After bone marrow transplant, reducing ongoing immunosuppressive therapy has worked successfully to reverse the course of a bone marrow with a dropping donor percentage and to prevent a relapse.
So. While it would totally suck to have to deal with GVH, I am still hoping for SOME. Just a little bit. Just enough to get the GVL effect. Please.
My very tired, exhausted, sleep deprived brain did receive a small reprieve, today. A fellow caretaker and I (*waves madly to Chuck*) went off campus for Fermented Beverages and Happy Hour priced grub. It was so great to have decent food. So yummy. Thanks, my friend!!
Huge request for tonight........ A friend needs blessing, prayer, karma, juju..... Mighty Maddy had a transplant for AML. At their 80 day work-up they discovered "residual disease" and she will very likely need another transplant. Mom, Dad, Maddy and the sibs need some positive energy. If you can spare some, please send it their way. *Susan! I think of you guys EVERY DAY. Several times a day. My heart is heavy for you, but filled with love and hope.*
********************************************************************************************************************
Here's the deal. These thoughts have been racing through my brain. Another parent and I discussed it, too. I've been thinking about the idea of "Endings". When will this end? My emotions on this topic change from moment to moment. Gregory's Odyssey with Juvenile Myelomonocytic Leukemia will never have a clean little "The End". We will never be able to "put this behind us". While this is possibly the biggest thing we will ever face, (I sure hope so.) it is just one of many struggles that we all face. His just happens to be so extremely, flippin' GINORMOUS. We are so obsessed with "Happily Ever After" that it's the endings that we, usually, only care about. Yes, this is HARD. I have to constanly remind myself that no matter HOW hard it gets, it could be harder. Yes, there are families that have lesser conditions/treatment plans. I find myself wishing things were different. Not all the time. Just in those deep, dark moments. I feel like I need to allow myself to BE in those moments. From time to time. More often than not, they are quickly followed by rays of sunshine. Bright moments when Gregory's spirit comes shining through. I don't rally at the sky and scream for justice. I don't believe in that. I don't think we have been "done wrong". I don't wonder "Why us?". If i did, I would have to follow it with "Why them?". This is just a really freaky thing that we are going through. Will we live with it forever? Yes. Will it get better? Yes. Can it get worse? Hell yes, it could. It's about taking it one moment at a time and living IN that moment. Allowing myself to BE there but not to STAY there. Things Can Only Get Better. Right? Eventually, they usually do. At least THAT is what I'm hanging my hat on.
An old Notes From The Universe:
Mindi, isn't it nice to know that you haven't yet laughed, all that you'll laugh? That you haven't yet met, some of your very best friends? And that you haven't yet dreamed, all that you'll manifest?
That all bridges will be mended? That all sadness will be healed? And that life never ends?
That all of your challenges will be won? That all of your triumphs will be shared? And that the difference you'll make, has already begun?
Well, it is for me, because I also know that if you don't see these things yet, you will.
An old Notes From The Universe:
Mindi, isn't it nice to know that you haven't yet laughed, all that you'll laugh? That you haven't yet met, some of your very best friends? And that you haven't yet dreamed, all that you'll manifest?
That all bridges will be mended? That all sadness will be healed? And that life never ends?
That all of your challenges will be won? That all of your triumphs will be shared? And that the difference you'll make, has already begun?
Well, it is for me, because I also know that if you don't see these things yet, you will.
Could it get any better?
The Universe
The Universe
Thursday, July 23, 2009
Wash, Rinse, Repeat
Tuesday's Counts, July 21: Platelets ~ 93, Hematocrit ~ 29, ANC ~ 1265, Weight ~ 12.9
Honestly? It's more of the same, around here. We did a trial run, the other night, of Bennedryl every three hours and Hydroxizine, each one alternating every three hours. The orders were written as "All the time", meaning if I wasn't here, ,they would have given him these doses all day long. It was only intended for night time. The only way to write this is round the clock or PRN (as needed). Which means you have to have stellar communication between provider, nursing staff and caretaker. There was a break down in communication. He received so much, including a last dose at 8:00 in the morning, that he was groggy and out of it for most of the day. Greogry does not need these drugs during the day. He does awesome during the day. Nightime is the bitch. Wednesday and today we were up at 3:30. Yesterday he stayed up, this moring we drugged him back to sleep. He's been waking up around 3:00 in the morning in absolute misery. Itching, pain and bladder spasms. This morning he was struggling for over an hour before we could get it under control. The Pyridium and Oxybutinin (numbs the urinary tract, eases bladder spasms, respectively) was only written for daytime. So for the last thirteen nights, he was not receiving them. I was really hoping that last night would have been different, since he was not receiving them at night. I know he received them, 'cause I gave them to him. It didn't make any difference. I also don't know if they need to build up in his system. I'm hopeful. Tonight we are going to try the every three hour thing, again. With a last dose no later than 6:00am. I'm hoping that he will be comfortable at night and not in an anithistimine hangover haze. The only way to know is to try it out. I keep hoping we will come up with a magic formula of meds. Hasn't happened, yet. Maybe tonight? *crosses fingers*
In the grand scheme of things, if Gregory was going to have a complication at this stage, this is an OK complication to have. It just really sucks. During the day he is so awesome. (can I repeat myself?) Nightimes are so rough.
The OffSpring will be here on Sunday. We are hoping to get Gregory out on pass, while they are here, and have a meal/hang time all together, under one roof. Being goofy and just chillin' together. Mom and I also talked about doing a trial run with her staying one night at the hospital with Gregory. While I hunker down with Curtis and AnnMarie for an evening of cuddles and merry making.
I've not been so great about getting my thank you's out.......
Ryan & Amy ~ I don't know how you did it. Thank you. Gregory is going to have the greatest sweater collection!!
A Grand Yarn, Mary in particular ~ Huge Thank You's. I'm actually speechless. Beautiful colors. My favorite yarn, too. I call it my comfort yarn.
Erica ~ Yes, yes, yes. Please use whatever you want. The photoshoot pictures are availbe to be used at your discretion. Or anything else that strikes your fancy. Quote? Don't have one, yet. Workin' on it, though. What's your deaddline?
Niki D~ Welcome home.
Tammy B ~ Thank you so much for stopping by. It was great to see a face from home.
Cheri ~ Your choice of flicks was spot on. Much comfort watching to be had. Also? Gregory is now a Jim Carey fanatic. He calls him "The Funny Guy". Cute, huh?
Huge thank you's to every single family that I have met, receiving treatment side-by-side us in Seattle. Each and every one of you are amazing. While I'd be more than happy to say that I'd never met you (know what I mean?), I'm awfully grateful for your presence.
Alright. Time for meds and labs. 'til later, gotta jet!
Honestly? It's more of the same, around here. We did a trial run, the other night, of Bennedryl every three hours and Hydroxizine, each one alternating every three hours. The orders were written as "All the time", meaning if I wasn't here, ,they would have given him these doses all day long. It was only intended for night time. The only way to write this is round the clock or PRN (as needed). Which means you have to have stellar communication between provider, nursing staff and caretaker. There was a break down in communication. He received so much, including a last dose at 8:00 in the morning, that he was groggy and out of it for most of the day. Greogry does not need these drugs during the day. He does awesome during the day. Nightime is the bitch. Wednesday and today we were up at 3:30. Yesterday he stayed up, this moring we drugged him back to sleep. He's been waking up around 3:00 in the morning in absolute misery. Itching, pain and bladder spasms. This morning he was struggling for over an hour before we could get it under control. The Pyridium and Oxybutinin (numbs the urinary tract, eases bladder spasms, respectively) was only written for daytime. So for the last thirteen nights, he was not receiving them. I was really hoping that last night would have been different, since he was not receiving them at night. I know he received them, 'cause I gave them to him. It didn't make any difference. I also don't know if they need to build up in his system. I'm hopeful. Tonight we are going to try the every three hour thing, again. With a last dose no later than 6:00am. I'm hoping that he will be comfortable at night and not in an anithistimine hangover haze. The only way to know is to try it out. I keep hoping we will come up with a magic formula of meds. Hasn't happened, yet. Maybe tonight? *crosses fingers*
In the grand scheme of things, if Gregory was going to have a complication at this stage, this is an OK complication to have. It just really sucks. During the day he is so awesome. (can I repeat myself?) Nightimes are so rough.
The OffSpring will be here on Sunday. We are hoping to get Gregory out on pass, while they are here, and have a meal/hang time all together, under one roof. Being goofy and just chillin' together. Mom and I also talked about doing a trial run with her staying one night at the hospital with Gregory. While I hunker down with Curtis and AnnMarie for an evening of cuddles and merry making.
I've not been so great about getting my thank you's out.......
Ryan & Amy ~ I don't know how you did it. Thank you. Gregory is going to have the greatest sweater collection!!
A Grand Yarn, Mary in particular ~ Huge Thank You's. I'm actually speechless. Beautiful colors. My favorite yarn, too. I call it my comfort yarn.
Erica ~ Yes, yes, yes. Please use whatever you want. The photoshoot pictures are availbe to be used at your discretion. Or anything else that strikes your fancy. Quote? Don't have one, yet. Workin' on it, though. What's your deaddline?
Niki D~ Welcome home.
Tammy B ~ Thank you so much for stopping by. It was great to see a face from home.
Cheri ~ Your choice of flicks was spot on. Much comfort watching to be had. Also? Gregory is now a Jim Carey fanatic. He calls him "The Funny Guy". Cute, huh?
Huge thank you's to every single family that I have met, receiving treatment side-by-side us in Seattle. Each and every one of you are amazing. While I'd be more than happy to say that I'd never met you (know what I mean?), I'm awfully grateful for your presence.
Alright. Time for meds and labs. 'til later, gotta jet!
Tuesday, July 21, 2009
Note to self: Let It Be
I have been fighting with myself, lately. Having a day of being OK with the prospect of still being in-patient. Having a day of being frustrated with STILL being in-patient. I've been trying to make myself decide which state of being we are going to be in. Last night (Sunday) was pretty rough. It was one of those nights where I was making care decisions for Gregory and I was not present. He was waking up every 15-20 minutes. Really restless sleep in between. The last 10 days or so have started to catch up. We've been playing this nightly game of making sure he is comfortable and can sleep. I've been hesitant with his meds. My thoughts have been, how can we know he is still showing symptoms if they are masked by medication. 'Cause his symptoms are the only thing keeping us here.
Last night he had two Morphine bolus'. When I met with the team, this morning, they asked me how the night was. I told him Gregory had two bolus' and could have used a third. The attending stopped what he was doing, looked right in my eyes and with the greatest sense of care told me "Use them. Do what you need to keep him comfortable. That is what is important." I've been afraid of over medicating him. The word MORPHINE carries an awful lot of baggage.
It all of a sudden clicked, today. I HAVE NO POWER OVER WHEN WE ARE RELEASED. Gregory will clear this virus, when he clears it. It is our job to keep him comfortable, well rested and happy. I had a fantastic conversation with our nigh time PA, too. I ran into her on the first floor. She asked how our night was. I have a habit of answering honestly. I won't sugar coat an answer, just because that's what I think you want to hear. I told her it was a rough night and we chatted about his symptoms. She immediately suggested that we start him on an anti-itch medication schedule that would be dosed every three hours. That combined with the new Morphine plan will hopefully provide him a night of great rest. We have upped his PM morphine drip, at the time of a Morphine bolus and an Bennedryl. Three hours later he gets a different anti-itch medication. Hydroxyzine. He seems to be doing well so far, tonight.
We have started to do counts only three days a week. Cool, huh! After all, if we were out-patient our frequency would probably be only twice a week. They are still drawing blood to monitor kidney function, CMV, Magnesium, Calcium, liver function and his Tacrolimus levels. I also spoke with our nurse today and she was suprised that we were no longer having weekly x-rays. Their confidence in his over-all health is high. Guess what else? TOMORROW IS OUR LAST DOSE OF FOSCARNET! He has done outstanding on it. His kidneys have been very happy.
Tonight we took our tule around the hospital around 7:00pm. It was quiet enough in the halls that I suggested he ride his tricycle. He hopped on his trike, secured his helmet and we were off. Our departure coincided with the end of a Hem/Onc staff meeting and shift change. He was cruising around the first floor with such confidence. Several of the staff that we have gotten to know were either leaving form their meeting or just arriving for their shifts. The looks on their faces to see him cruising around was priceless. Seeing him as they do on the floor, but out of the unit was a surprise. You could see the sudden look of recognition cross their face as they realized who they were seeing. We ran into one of my favorite night nurses, outside by the hippo. She was flabbergasted to see how he is during the day. Several people commented that seeing himrunning cycling around was a perfect way to end their day. Man, this kid brings such joy to everyone he touches.
A few words about me. Over the years I have tried to "blog" publicly. Tried different sites. Different angles. Nothing has felt quite right. I only know that this writing that I do means something. Dont' know what, yet. I had heard of salon.com and never spent much time over there. (crap. The website is being wonkly. I'll have to add links, later. Resolved and added.) They have a portion of salon.com called open.salon.com. It's for folks like me who like to write and like to be read. On a whim I created an account. Eventually I will not be writing strickly about Gregory. I will need a place that is mine. Those were the seeds I planted. I just didn't expect them to be ready to grow this soon. I'm not sure how it all works, but my entry from the other day was featured on the home page of opensalon as an editor's pick. One of many, mind you, but it was listed quite near the top. Like the second one. I'm not a fan of how they tweaked the contents to create a catchy title, but meh. The greatest part is that there is an option in opensalon to automatically import entries from another website. So everytime I post here, it gets cross posted to my open.salon.com. I now have comments from random people that I have no connection to and a few are following my writing. You may have noticed that I don't like to use the word blog. The word blog, in my mind carries the feeling of a cause to be rallied for or opinions to be shared. I do not have near enough knowledge or experience to stand on a virtual soap box and tell you what/how to think. Nor will I rant and rave ABOUT other people. The only thing I do posses: I am an expert when it comes to MY experiences. That is what I want to share. A little exhibitionistic? Yeah. Actually alot. I like it. I've always wanted to be an Actor or............. a politician. A good one. Pipe dreams again.
Today's take home? Let it go. It's constantly a battle of knowing how/when to let it go. Here's the thing, I may have let it go, but I may decide to grab it again as soon as tomorrow. If you see me reaching for it, please slap my wrists. I need a check, too.
Time to go try the night shift cafeteria. Fresh omlet, anyone? 'til later, gotta jet.
Last night he had two Morphine bolus'. When I met with the team, this morning, they asked me how the night was. I told him Gregory had two bolus' and could have used a third. The attending stopped what he was doing, looked right in my eyes and with the greatest sense of care told me "Use them. Do what you need to keep him comfortable. That is what is important." I've been afraid of over medicating him. The word MORPHINE carries an awful lot of baggage.
It all of a sudden clicked, today. I HAVE NO POWER OVER WHEN WE ARE RELEASED. Gregory will clear this virus, when he clears it. It is our job to keep him comfortable, well rested and happy. I had a fantastic conversation with our nigh time PA, too. I ran into her on the first floor. She asked how our night was. I have a habit of answering honestly. I won't sugar coat an answer, just because that's what I think you want to hear. I told her it was a rough night and we chatted about his symptoms. She immediately suggested that we start him on an anti-itch medication schedule that would be dosed every three hours. That combined with the new Morphine plan will hopefully provide him a night of great rest. We have upped his PM morphine drip, at the time of a Morphine bolus and an Bennedryl. Three hours later he gets a different anti-itch medication. Hydroxyzine. He seems to be doing well so far, tonight.
We have started to do counts only three days a week. Cool, huh! After all, if we were out-patient our frequency would probably be only twice a week. They are still drawing blood to monitor kidney function, CMV, Magnesium, Calcium, liver function and his Tacrolimus levels. I also spoke with our nurse today and she was suprised that we were no longer having weekly x-rays. Their confidence in his over-all health is high. Guess what else? TOMORROW IS OUR LAST DOSE OF FOSCARNET! He has done outstanding on it. His kidneys have been very happy.
Tonight we took our tule around the hospital around 7:00pm. It was quiet enough in the halls that I suggested he ride his tricycle. He hopped on his trike, secured his helmet and we were off. Our departure coincided with the end of a Hem/Onc staff meeting and shift change. He was cruising around the first floor with such confidence. Several of the staff that we have gotten to know were either leaving form their meeting or just arriving for their shifts. The looks on their faces to see him cruising around was priceless. Seeing him as they do on the floor, but out of the unit was a surprise. You could see the sudden look of recognition cross their face as they realized who they were seeing. We ran into one of my favorite night nurses, outside by the hippo. She was flabbergasted to see how he is during the day. Several people commented that seeing him
A few words about me. Over the years I have tried to "blog" publicly. Tried different sites. Different angles. Nothing has felt quite right. I only know that this writing that I do means something. Dont' know what, yet. I had heard of salon.com and never spent much time over there. (
Today's take home? Let it go. It's constantly a battle of knowing how/when to let it go. Here's the thing, I may have let it go, but I may decide to grab it again as soon as tomorrow. If you see me reaching for it, please slap my wrists. I need a check, too.
Time to go try the night shift cafeteria. Fresh omlet, anyone? 'til later, gotta jet.
Sunday, July 19, 2009
Day 69 in Seattle, Day 48 In-Patient, Day 38 Post-Transplant, Day 10 of BK Virus
Today's counts: Platelets ~ 86, Hematocrit ~ 29, ANC ~ 1863, Weight ~ 13.5
Holy cow, you guys! After a very difficult night, we had an awesome day today! For the last few days, Gregory's symptoms seemed to be getting worse. Except he wasn't throwing anymore blood in his urine (more than usual). I had also noticed that his urine was "normal" color. One of the drugs turns his urine a really funky orange color. I had mentioned it a few times, the last couple of days. No one took much note of it. Until this morning. (Thank you Kolleen!) The drug that helps to numb his urinary tract is called Pryidium. For some reason, they medication system here only allows it to be authorized for three days. Then it needs to be re-approved. Manually. 48 hours ago, this morning, someone dropped the ball and didn't renew the orders. He had not recieved Pyridium for 48 hours. No wonder the symptoms were worse and getting worser (nice word, huh.). Last night was really rough. He just could not find relief. A couple Morphine/Benedryl cocktails with some Nalbuphine this morning. Once we had a couple doses of the pyridium on board he dramatically improved. We have started to get the benedryl in him at the first signs of itching and it has dramatically helped his "episodes". He is peacefully sleeping and rebuilding his reserves.
We have a tentative plan. If we have a few days of no acute needs for meds, we are going to do a trial run of out-patient management of his symptoms. Which means we change the morphine drip to oral Methadone. Trippy, huh? My four year old will be taking methadone. He would still be on the pyridium and the oxybutinin. He would still be on constant IV fluids. This is the crux. They do a trial run and see how we manage it. Typically it's so much work for families that they end up back as in-patient. I'm not saying that we are RockStars (well, maybe) but I think the payoff is so worth the effort.
The only thing I am really going to miss is the community that I have found here. Transitioning to the apartment will be a drastic drop in our social life. We will still be going to clinic, but it will take effort and timing to get there. Between a pump for feeds and a pump for IV fluids........ It could be a very delicate dance. Also, the clinic serves adults, as well. Our link with families with Childhood Cancer is going to drop. Thankfully his counts have been steady, solid and fruitful. The only things that could effect his counts, at this point, would be an infection or injury. I'm hopeful that an increased play time, being busier, will not bring a drop to his counts. I honestly cannot believe how long we have been without a transfusion of any kind. His platelets are even high enough for a Bone Marrow Aspirate, if he needed one. No need to a pre-surgical platelet transfusion. His next BMA will be at his 80 day workup. I feel like I am really tempting fate, talking about how well he is doing. I guess I'm in a little bit of shock and a little guarded. Here within this setting, there is so much comfort and a sense of supreme safety. Despite the fact that the last week has brought very sobering news, from time to time, being here immersed in the world of "those that get it" is so comfortable. Even at Ronnie Donnie, there are few of us. Added to that the fact that we all will be at different places of our transplant Odyssey. The other night I was chatting with a few of the staff regarding the high number of Transplants that are currently in the works. There are 33 beds on this unit. The other day, 16 of them were transplant patients. Mind boggling. I think there are at least four actualy transplant days this week. I feel so fortunate that we secured our room when we did. there are really only six big transplant rooms. We are lucky, right now, to have one.
I promised discussion regarding his ANC. Here's the gist of it. It takes a very long time for the marrow to normalize. 6-12 months. While he has a significant ANC, it is rather deceiving. He has parts of his white cells that are elevated and parts of his ANC that simply are not there and parts of his ANC that are not nearly enough. Which means his ANC is wacky and not quite functioning correctly. Well, as correctly as a "normal" ANC of 1800 would be. This is totally normal. His ANC will continue to jump (jump, jump around).
Alright then. It's time for me to enjoy a plethora of "newish" comfort music. 'til later, gotta jet.
This song always gets me. One of my favorites. Despite the attachment to Jerry McGuire.
http://new.music.yahoo.com/videos/--208579887
Holy cow, you guys! After a very difficult night, we had an awesome day today! For the last few days, Gregory's symptoms seemed to be getting worse. Except he wasn't throwing anymore blood in his urine (more than usual). I had also noticed that his urine was "normal" color. One of the drugs turns his urine a really funky orange color. I had mentioned it a few times, the last couple of days. No one took much note of it. Until this morning. (Thank you Kolleen!) The drug that helps to numb his urinary tract is called Pryidium. For some reason, they medication system here only allows it to be authorized for three days. Then it needs to be re-approved. Manually. 48 hours ago, this morning, someone dropped the ball and didn't renew the orders. He had not recieved Pyridium for 48 hours. No wonder the symptoms were worse and getting worser (nice word, huh.). Last night was really rough. He just could not find relief. A couple Morphine/Benedryl cocktails with some Nalbuphine this morning. Once we had a couple doses of the pyridium on board he dramatically improved. We have started to get the benedryl in him at the first signs of itching and it has dramatically helped his "episodes". He is peacefully sleeping and rebuilding his reserves.
We have a tentative plan. If we have a few days of no acute needs for meds, we are going to do a trial run of out-patient management of his symptoms. Which means we change the morphine drip to oral Methadone. Trippy, huh? My four year old will be taking methadone. He would still be on the pyridium and the oxybutinin. He would still be on constant IV fluids. This is the crux. They do a trial run and see how we manage it. Typically it's so much work for families that they end up back as in-patient. I'm not saying that we are RockStars (well, maybe) but I think the payoff is so worth the effort.
The only thing I am really going to miss is the community that I have found here. Transitioning to the apartment will be a drastic drop in our social life. We will still be going to clinic, but it will take effort and timing to get there. Between a pump for feeds and a pump for IV fluids........ It could be a very delicate dance. Also, the clinic serves adults, as well. Our link with families with Childhood Cancer is going to drop. Thankfully his counts have been steady, solid and fruitful. The only things that could effect his counts, at this point, would be an infection or injury. I'm hopeful that an increased play time, being busier, will not bring a drop to his counts. I honestly cannot believe how long we have been without a transfusion of any kind. His platelets are even high enough for a Bone Marrow Aspirate, if he needed one. No need to a pre-surgical platelet transfusion. His next BMA will be at his 80 day workup. I feel like I am really tempting fate, talking about how well he is doing. I guess I'm in a little bit of shock and a little guarded. Here within this setting, there is so much comfort and a sense of supreme safety. Despite the fact that the last week has brought very sobering news, from time to time, being here immersed in the world of "those that get it" is so comfortable. Even at Ronnie Donnie, there are few of us. Added to that the fact that we all will be at different places of our transplant Odyssey. The other night I was chatting with a few of the staff regarding the high number of Transplants that are currently in the works. There are 33 beds on this unit. The other day, 16 of them were transplant patients. Mind boggling. I think there are at least four actualy transplant days this week. I feel so fortunate that we secured our room when we did. there are really only six big transplant rooms. We are lucky, right now, to have one.
I promised discussion regarding his ANC. Here's the gist of it. It takes a very long time for the marrow to normalize. 6-12 months. While he has a significant ANC, it is rather deceiving. He has parts of his white cells that are elevated and parts of his ANC that simply are not there and parts of his ANC that are not nearly enough. Which means his ANC is wacky and not quite functioning correctly. Well, as correctly as a "normal" ANC of 1800 would be. This is totally normal. His ANC will continue to jump (jump, jump around).
Alright then. It's time for me to enjoy a plethora of "newish" comfort music. 'til later, gotta jet.
This song always gets me. One of my favorites. Despite the attachment to Jerry McGuire.
http://new.music.yahoo.com/videos/--208579887
Saturday, July 18, 2009
I don't wanna.
I don't wanna. Counts, shmounts. I don't wanna write about anc's, platelets and hematocrit. Blood pressure, temperatures, respiratory rates, beats per minute. Nausea, urine output, number of stools, hem positive, coag negative. Logging every little bite and slurp that passes his lips. nG placement, nG volume, IV volume, total out volume. I's and O's. Condition of the mouth, skin and bottom. Scheduling a bath. Meals that are so flippin' limited. Oral medications, IV medications. Vitals and blood draws. Requesting meds for acute needs. Not tonight.
Tonight is our families 11th anniversary. I would love to say that we began 11 years ago, today. We did, but we didn't. We began 13 years and 45 days ago. At least since our first "date". I could wax all sentimental about it, but if you know me, you know it's not my style. I would, sometimes, like to be the kind of person that can get swept away by all that and be satisfied. Problem is, I don't think I will ever be satisfied. Which is by no means a bad thing. It just means that I need to know myself well enough to know that I am GOOD where I am at. I have a habit of living my life out loud. Really loud. Which means I eat alot of crow.
Once upon a time my main directive was to get married and have kids. Period. Didn't matter how I did it. It just needed to get done. Well, I did it. One day, several years ago, a friend asked me: "What's your new dream?" Took me a while to figure out what that question even meant. You mean I can have another dream? There is more to be had? It ultimately came down to self worth. You know who helped me the most with this? Larry. Yep. There truly is no other man like him on this planet. I get worked up about so much other stuff, life just sometimes bull dozes the heck out of you. I lose sight of what's right in front of me. I did not enter this relationship with a whole "me". Who ever does? The "me" that I am is so different from the "me" that met Larry 13 years ago. I feel like I am finally finding my stride and becoming comfortable in my own skin. Yet trying to keep this relationship thogether has been the hardest thing I have ever done. Harder, even, than what we are going through with Gregory. Why? 'Cause I second guess myself and my choices every step of the way. With Gregory there is no "Monday Night Quaterbacking". It is what it is. I know I should leave well enough alone and just be. But I have this need to be constanly improving things. Or at least seenng if there is room for imporvement. Examing. Over analyzing. While not being present for what is happening, in the moment. Which is, probably, my greatest lesson from this whole experience. To be in the moment. To be present. To live consciously. Things do have a way of working out, eventually. Life is never really as bad as you convince yourself it is. I'm sure our inner monologues have screwed up more of our lives than we would like to admit.
I have several things that I am passionate about. Things that I feel so strongly about that they keep me up at night. When it all boils down, though, it is the belief that if we all lived consciously, in the moment and with a sense of presence, we all would be happier and so would our planet and societies. I know, I know. Pollyanna, huh? I think we are on our way to this. Hopefully. I have a belief in the human spirit, that we all posses this ability and we will accomplish it. This body of mine won't witness it, but I sure hope I'm around, somehow, when it does happen.
So. As we begin our 12th year together. Yet not together. I have no idea what the future holds. The thing to remember is, I didn't know six months ago, either. Sitting here, in the dark, in the middle of the night, by the light of a laptop, puking my guarded heart out to hundreds of people. While anxiously waiting for our youngest OffSpring to recover enough to go HomeHome.
Just so you know, Gregory is doing well. The BK Virus is still hanging on and we added blood pressure medication, today. Once a day. He has had consistently high blood pressures. We are still venturing off the floor everyday and I am hoping to take him across the street to see the apartment, this next week. He continues to charm the pants off eveyone he touches and takes each day as it comes. I have yet to experience a moment when he truly will not do something. He is easy going, compliant, even helpful and anticipatory through every step. His spirit is stong and unbroken.
I've gotten advice and the go ahead to take him to a Matinee when we are outpatient. I asked him today if he wanted to go see a movie, when we got out of the hospital. His little four year old response? "Aren't there germs in the movie theater?" It was said very matter of fact. No sadness at the prospect of not going, due to germs. He somehow understands that germs are bad for him, for now, and they won't always be. He accepts it with a grace that is far beyond his years on this Earth. THAT is a lesson to be learned.
We will eventually be out-patient. Here's to getting there sooner, rather than later. 'til later, gotta jet.
Tonight is our families 11th anniversary. I would love to say that we began 11 years ago, today. We did, but we didn't. We began 13 years and 45 days ago. At least since our first "date". I could wax all sentimental about it, but if you know me, you know it's not my style. I would, sometimes, like to be the kind of person that can get swept away by all that and be satisfied. Problem is, I don't think I will ever be satisfied. Which is by no means a bad thing. It just means that I need to know myself well enough to know that I am GOOD where I am at. I have a habit of living my life out loud. Really loud. Which means I eat alot of crow.
Once upon a time my main directive was to get married and have kids. Period. Didn't matter how I did it. It just needed to get done. Well, I did it. One day, several years ago, a friend asked me: "What's your new dream?" Took me a while to figure out what that question even meant. You mean I can have another dream? There is more to be had? It ultimately came down to self worth. You know who helped me the most with this? Larry. Yep. There truly is no other man like him on this planet. I get worked up about so much other stuff, life just sometimes bull dozes the heck out of you. I lose sight of what's right in front of me. I did not enter this relationship with a whole "me". Who ever does? The "me" that I am is so different from the "me" that met Larry 13 years ago. I feel like I am finally finding my stride and becoming comfortable in my own skin. Yet trying to keep this relationship thogether has been the hardest thing I have ever done. Harder, even, than what we are going through with Gregory. Why? 'Cause I second guess myself and my choices every step of the way. With Gregory there is no "Monday Night Quaterbacking". It is what it is. I know I should leave well enough alone and just be. But I have this need to be constanly improving things. Or at least seenng if there is room for imporvement. Examing. Over analyzing. While not being present for what is happening, in the moment. Which is, probably, my greatest lesson from this whole experience. To be in the moment. To be present. To live consciously. Things do have a way of working out, eventually. Life is never really as bad as you convince yourself it is. I'm sure our inner monologues have screwed up more of our lives than we would like to admit.
I have several things that I am passionate about. Things that I feel so strongly about that they keep me up at night. When it all boils down, though, it is the belief that if we all lived consciously, in the moment and with a sense of presence, we all would be happier and so would our planet and societies. I know, I know. Pollyanna, huh? I think we are on our way to this. Hopefully. I have a belief in the human spirit, that we all posses this ability and we will accomplish it. This body of mine won't witness it, but I sure hope I'm around, somehow, when it does happen.
So. As we begin our 12th year together. Yet not together. I have no idea what the future holds. The thing to remember is, I didn't know six months ago, either. Sitting here, in the dark, in the middle of the night, by the light of a laptop, puking my guarded heart out to hundreds of people. While anxiously waiting for our youngest OffSpring to recover enough to go HomeHome.
Just so you know, Gregory is doing well. The BK Virus is still hanging on and we added blood pressure medication, today. Once a day. He has had consistently high blood pressures. We are still venturing off the floor everyday and I am hoping to take him across the street to see the apartment, this next week. He continues to charm the pants off eveyone he touches and takes each day as it comes. I have yet to experience a moment when he truly will not do something. He is easy going, compliant, even helpful and anticipatory through every step. His spirit is stong and unbroken.
I've gotten advice and the go ahead to take him to a Matinee when we are outpatient. I asked him today if he wanted to go see a movie, when we got out of the hospital. His little four year old response? "Aren't there germs in the movie theater?" It was said very matter of fact. No sadness at the prospect of not going, due to germs. He somehow understands that germs are bad for him, for now, and they won't always be. He accepts it with a grace that is far beyond his years on this Earth. THAT is a lesson to be learned.
We will eventually be out-patient. Here's to getting there sooner, rather than later. 'til later, gotta jet.
Friday, July 17, 2009
Why couldn't I get that day over and over and over?
Gregory and I are sitting here tonight, diligently watching Polar Express for the upteenth million time and I glance at the clock. It's 10:00. At night. I realize that I have not spoken to anyone today. Not Mom, not dad, not Larry, not the OffSpring. Gregory had reached that point where, when he is not feeling pain, is needing extra distracting. Being between these four walls must seem like one heck of a limbo-land for him.
Today's Counts: Platelets ~ 63, Hematocrit ~ 28, ANC ~ 1978, Weight ~ 13.4
(Quick note on his ANC. I will explain in further detail later but....... Don't let this big number fool you. He still has an ANC that DOES NOT function at full capacity. He still has too many of some components and not nearly enough of others. I spent a ton of time today , trying to learn more about the composition of White cells and how they relate to the ANC. I'll fill you all in, soon.)
We've actually been pretty busy. I've been frantically trying to find things that he will eat. I've pretty much given up on coaxing him into eating. I had forgotten that he does not eat much when he is in-patient. I am hopeful that once we are in the apartment, his appetite will pick up. We are currently on 60ml/hour for 14 hours, on his feeds. The goal is to get it to where we can run it when he is sleeping, only. I really don't think we will get there. He is still heaving once a day. We have also moved EVERY medication, that we can, to oral. Along with reasonable dosage times. I won't need to set my alarm for an early morning medication. His tempermant has been outstanding. Except for right before bed and right after waking up. He has these super acute bladder attacks. Major bladder spasams and intense itching. From onset to the drugs kicking in, it takes at least 45 minutes. Forty-Five minutes of writhing in pain, trying to dig into his groin (thankfully through a diaper, nice cushion) with tears running down his face. Then once the drugs kick in, he calms down and it's like nothing happened. His face is quite puffy, afterward, from all the tears. Talk about feeling helpless. There is absolutely nothing I can do to help him. This is the reason we are in-patient. He gets a Morphine bolus and benedryl. I could not have anything handy that would act quick enough. Even in the hospital it takes 45 minutes. Ugh!
We got outside again, today!! He is really enjoying our outings. The only downside is that since he is more physically active, his blood pressures are consistently elevated, after we have been out. Even at midnight. He has received his blood pressure med, every evening that we have been out. How much longer until we are through with prednisone???
The only routine IV meds we have left is fluids and Magnesium. Which he will continue to receive via IV, once we are outpatient.
I cannot seem to write a coherent entry, lately. Constant interruptions will do that to you. There's been some pretty crummy news around here, lately. Along with some amazing moments. Right now I just DO NOT have the energy to go into it all. I do NEED to give a shout out to Mighty Maddy and her family. I'm sending all I've got to you, girl.
I've been up since 3:30 this morning. If I fall asleep with Gregory, before 12:00, I have a habbit of waking up for 4:00 vitals/labs and not being able to go back to sleep. I've reached my threshold. Time to hunker down. Love to you all. I know there are a ton of you that I have not responded to. Know that I have not forgotten and I do receive all your communications. I appreciate every last one. Someday I'll have time/energy to devote to each one. 'til later, gotta jet.
Today's Counts: Platelets ~ 63, Hematocrit ~ 28, ANC ~ 1978, Weight ~ 13.4
(Quick note on his ANC. I will explain in further detail later but....... Don't let this big number fool you. He still has an ANC that DOES NOT function at full capacity. He still has too many of some components and not nearly enough of others. I spent a ton of time today , trying to learn more about the composition of White cells and how they relate to the ANC. I'll fill you all in, soon.)
We've actually been pretty busy. I've been frantically trying to find things that he will eat. I've pretty much given up on coaxing him into eating. I had forgotten that he does not eat much when he is in-patient. I am hopeful that once we are in the apartment, his appetite will pick up. We are currently on 60ml/hour for 14 hours, on his feeds. The goal is to get it to where we can run it when he is sleeping, only. I really don't think we will get there. He is still heaving once a day. We have also moved EVERY medication, that we can, to oral. Along with reasonable dosage times. I won't need to set my alarm for an early morning medication. His tempermant has been outstanding. Except for right before bed and right after waking up. He has these super acute bladder attacks. Major bladder spasams and intense itching. From onset to the drugs kicking in, it takes at least 45 minutes. Forty-Five minutes of writhing in pain, trying to dig into his groin (thankfully through a diaper, nice cushion) with tears running down his face. Then once the drugs kick in, he calms down and it's like nothing happened. His face is quite puffy, afterward, from all the tears. Talk about feeling helpless. There is absolutely nothing I can do to help him. This is the reason we are in-patient. He gets a Morphine bolus and benedryl. I could not have anything handy that would act quick enough. Even in the hospital it takes 45 minutes. Ugh!
We got outside again, today!! He is really enjoying our outings. The only downside is that since he is more physically active, his blood pressures are consistently elevated, after we have been out. Even at midnight. He has received his blood pressure med, every evening that we have been out. How much longer until we are through with prednisone???
The only routine IV meds we have left is fluids and Magnesium. Which he will continue to receive via IV, once we are outpatient.
I cannot seem to write a coherent entry, lately. Constant interruptions will do that to you. There's been some pretty crummy news around here, lately. Along with some amazing moments. Right now I just DO NOT have the energy to go into it all. I do NEED to give a shout out to Mighty Maddy and her family. I'm sending all I've got to you, girl.
I've been up since 3:30 this morning. If I fall asleep with Gregory, before 12:00, I have a habbit of waking up for 4:00 vitals/labs and not being able to go back to sleep. I've reached my threshold. Time to hunker down. Love to you all. I know there are a ton of you that I have not responded to. Know that I have not forgotten and I do receive all your communications. I appreciate every last one. Someday I'll have time/energy to devote to each one. 'til later, gotta jet.
Thursday, July 16, 2009
Grace ~ elegance or beauty of form, manner, motion, or action
ETA: Gregory officially is considered Engrafted. Day 33, Tuesday July 14, 2009. Engraftment!!!!!!!!!
The last few days...... pee, scratch, potty dance, play. Rinse and repeat. Until Yesterday. *frantically knocks wood*
Counts:
Tuesday: Platelets ~ 53, Hematocrit ~ 32, ANC ~ 660
Wednesday: Platelets ~ 57, Hematocrit ~ 30, ANC ~ 806
Thursday: Platelets ~ 65, Hematocrit ~ 29, ANC ~ 1330, Weight ~ 13.4
His ANC is steadily increasing, his platelets are holding and took a slight jump and Hematocrit is dropping, only slowly. His activity level has been pretty low. Kinda hard to start/finish anything when you are peeing every 5 minutes.
Yesterday we received permission to leave the unit. This was a big event. Yesterday we reached the six week point. We were admitted on June 1. I've had a chance to get out now and then. I can't imagine what it must be like for Gregory, who has been cooped up in this room. These four walls. Especially with his age. Developmentally he lives in the moment. Moment to moment.
He must wear sunscreen everyday and they sent some up for him. We got all prepared to go OUTSIDE. Sunhat, camera, portable urinal, portable hand gel, puke basin, sunscreen and IV pole. Since he is on a Morphine drip for the BK pain, he is not able to be disconnected for great deals of time. We have to save his disconnect time for baths. We headed out of the unit and to the elevator. He did not want to sit on the lilly pad (on the bottom of his IV pole), instead he wanted to go in the Hip Hammock. Nice and close to me for this big adventure. Once we navagated the elevator and the bumpy stone flooring, (oh yeah, and the automatic sliding doors and floor mats) he was outside. There is a little water feature with a purple hippo. He hung out with the hippo for a few. We then headed back inside, hit the gift shop and got a Root Beer form Tully's. All this with several stops to pee, too. My long-time friend, Lena, stopped by to see us and found us in the gift shop. There was a book I was looking for, so we headed up to the fifth floor resource room to see if they had it. No luck on what I was looking for, but I did find a few others. Lena sat and read a book to Gregory. She found a bunch of books from the author of "If You Gave A Mouse A Cookie". Gregory loves this book and the one's that Lena found. It was time to go back to the unit. All of the parent services are on the fifth floor. Laundry, showers, resource room, cafeteria. It must have been about 2:00. This is where I started to get a little nervous. The elevator is busy on this floor. Having Gregory in a confined space with many people, even for that short of a time, makes me terribly nervous. It's also a big no-no. We waited until the masses went down. Things seemed to pick up for Gregory, when we got back. Call it coincidence or a breath of change, Gregory has been getting better and better, ever since. The frequency of his need-to-pee has been decreasing. His pain is barely noticible. (remember he is still medicated quite well, too) He started itching not long after our return to the unit and received a dose of Benedryl. It knocked him out for a much needed nap. He slept for a few hours and was so happy, chatty and playful. The frequency continued to decline. He received benedryl only at bed time and with the exception of having to pee when being disturbed (vitals and blood draw) he has slept through the night. *huge sigh* I do not like to hang my hat on a star, but I THINK he is on the mend. Quick like. The challange would be to start backing off on the Morphine. This will certainly be my first discussion with the team. It's the only thing (almost) keeping us in this room. We need to get his belly under contol, too. We only have a few meds that need to be switched to oral and we are supposed to start condensing his feeds. He is currently getting "fed" 50ml/hour for 20 hours. The ideal would be to have him hooked up for a couple hours, a few times/day. Which means bigger feeds. I don't think he is ready. He heaved Tuesday, mid afternoon, before we unhooked him for his four hours. He started to get nauseaus yesterday, right before he was unhooked. I took the liberty of unhooking him myself and we averted any ralphing. This morning he heaved at 3:45am. Not a large one, though. This makes me a lttle nervous. Gut GVH is a real possiblity. I'm calling it "tired tummy". He still has not taken much more than a few bites a day. He has tons of interest in eating, just not the gumption to do it. I knew, heading into this, that this would be our biggest hurdle. Gregory has never been a big eater. Only time will tell how this will shake out. I'm hoping that once we get to the apartment and he gets to have "regular" food, this will change.
I'm also hoping that we will get a "pass", soon. Which is just permission to leave the grounds for a few hours. I'd really like to take him over to the apartment, so he can check it out. I'd also really like to have him unhooked for an extended amount of time. We are still on the Prednisone taper and I found out that it will continue until AUGUST 29. Holy cow! It takes a long time to taper off that stuff.
Today? Shower and laundry. I'm hopeful that his need-to-pee level will allow me to get this done. I also need to put together some kind of alphabet refernce sheet for him. This kid is so ready to start writing. He copies words and wants to learn how to write letters. It's been really fun to have the time to really watch him build these skills. The most amazing this is that it is not coerced. He spontaneously starts a new skill. So cool. Can I do this whole parenthood thing over again? So many things I would do different. The way I spent my time, being the biggest. Also, the things I stressed/obsessed over. Live, learn and do better. Right? Someone please remind me of this in a year, when things are getting a little easier.
In hind sight, we have sailed through this. While it has not been without moments/days of terror and worry, Gregory has conquerred so much. He still has much to overcome, but he is on his way. If I had to pick one word to describe him, I think it would be "grace". He handles everything with such a willing and loving spirit. With joy and fun mixed in. If there is a "best thing" about this experience, it's the time I've spent with him and him alone. Never would have happened, otherwise. Does that mean it was worth it? Never. I would give it all back in a New York Minute if we could go back. I've never said that about anything in my life. I do not believe in regret. This one? Hell, yes. I'd even gift wrap it for you and seal it with a kiss. It doesn't work that way, though. Here we are and here we stay. It's hard to believe that we have only been doing this for nearly five months, now. It's seems like an eternity has pass, but at the same time it feels like a nano-second. Sounds like life, doesn't it.
The sun is coming up and I need coffee. 'til later, gotta jet.
The last few days...... pee, scratch, potty dance, play. Rinse and repeat. Until Yesterday. *frantically knocks wood*
Counts:
Tuesday: Platelets ~ 53, Hematocrit ~ 32, ANC ~ 660
Wednesday: Platelets ~ 57, Hematocrit ~ 30, ANC ~ 806
Thursday: Platelets ~ 65, Hematocrit ~ 29, ANC ~ 1330, Weight ~ 13.4
His ANC is steadily increasing, his platelets are holding and took a slight jump and Hematocrit is dropping, only slowly. His activity level has been pretty low. Kinda hard to start/finish anything when you are peeing every 5 minutes.
Yesterday we received permission to leave the unit. This was a big event. Yesterday we reached the six week point. We were admitted on June 1. I've had a chance to get out now and then. I can't imagine what it must be like for Gregory, who has been cooped up in this room. These four walls. Especially with his age. Developmentally he lives in the moment. Moment to moment.
He must wear sunscreen everyday and they sent some up for him. We got all prepared to go OUTSIDE. Sunhat, camera, portable urinal, portable hand gel, puke basin, sunscreen and IV pole. Since he is on a Morphine drip for the BK pain, he is not able to be disconnected for great deals of time. We have to save his disconnect time for baths. We headed out of the unit and to the elevator. He did not want to sit on the lilly pad (on the bottom of his IV pole), instead he wanted to go in the Hip Hammock. Nice and close to me for this big adventure. Once we navagated the elevator and the bumpy stone flooring, (oh yeah, and the automatic sliding doors and floor mats) he was outside. There is a little water feature with a purple hippo. He hung out with the hippo for a few. We then headed back inside, hit the gift shop and got a Root Beer form Tully's. All this with several stops to pee, too. My long-time friend, Lena, stopped by to see us and found us in the gift shop. There was a book I was looking for, so we headed up to the fifth floor resource room to see if they had it. No luck on what I was looking for, but I did find a few others. Lena sat and read a book to Gregory. She found a bunch of books from the author of "If You Gave A Mouse A Cookie". Gregory loves this book and the one's that Lena found. It was time to go back to the unit. All of the parent services are on the fifth floor. Laundry, showers, resource room, cafeteria. It must have been about 2:00. This is where I started to get a little nervous. The elevator is busy on this floor. Having Gregory in a confined space with many people, even for that short of a time, makes me terribly nervous. It's also a big no-no. We waited until the masses went down. Things seemed to pick up for Gregory, when we got back. Call it coincidence or a breath of change, Gregory has been getting better and better, ever since. The frequency of his need-to-pee has been decreasing. His pain is barely noticible. (remember he is still medicated quite well, too) He started itching not long after our return to the unit and received a dose of Benedryl. It knocked him out for a much needed nap. He slept for a few hours and was so happy, chatty and playful. The frequency continued to decline. He received benedryl only at bed time and with the exception of having to pee when being disturbed (vitals and blood draw) he has slept through the night. *huge sigh* I do not like to hang my hat on a star, but I THINK he is on the mend. Quick like. The challange would be to start backing off on the Morphine. This will certainly be my first discussion with the team. It's the only thing (almost) keeping us in this room. We need to get his belly under contol, too. We only have a few meds that need to be switched to oral and we are supposed to start condensing his feeds. He is currently getting "fed" 50ml/hour for 20 hours. The ideal would be to have him hooked up for a couple hours, a few times/day. Which means bigger feeds. I don't think he is ready. He heaved Tuesday, mid afternoon, before we unhooked him for his four hours. He started to get nauseaus yesterday, right before he was unhooked. I took the liberty of unhooking him myself and we averted any ralphing. This morning he heaved at 3:45am. Not a large one, though. This makes me a lttle nervous. Gut GVH is a real possiblity. I'm calling it "tired tummy". He still has not taken much more than a few bites a day. He has tons of interest in eating, just not the gumption to do it. I knew, heading into this, that this would be our biggest hurdle. Gregory has never been a big eater. Only time will tell how this will shake out. I'm hoping that once we get to the apartment and he gets to have "regular" food, this will change.
I'm also hoping that we will get a "pass", soon. Which is just permission to leave the grounds for a few hours. I'd really like to take him over to the apartment, so he can check it out. I'd also really like to have him unhooked for an extended amount of time. We are still on the Prednisone taper and I found out that it will continue until AUGUST 29. Holy cow! It takes a long time to taper off that stuff.
Today? Shower and laundry. I'm hopeful that his need-to-pee level will allow me to get this done. I also need to put together some kind of alphabet refernce sheet for him. This kid is so ready to start writing. He copies words and wants to learn how to write letters. It's been really fun to have the time to really watch him build these skills. The most amazing this is that it is not coerced. He spontaneously starts a new skill. So cool. Can I do this whole parenthood thing over again? So many things I would do different. The way I spent my time, being the biggest. Also, the things I stressed/obsessed over. Live, learn and do better. Right? Someone please remind me of this in a year, when things are getting a little easier.
In hind sight, we have sailed through this. While it has not been without moments/days of terror and worry, Gregory has conquerred so much. He still has much to overcome, but he is on his way. If I had to pick one word to describe him, I think it would be "grace". He handles everything with such a willing and loving spirit. With joy and fun mixed in. If there is a "best thing" about this experience, it's the time I've spent with him and him alone. Never would have happened, otherwise. Does that mean it was worth it? Never. I would give it all back in a New York Minute if we could go back. I've never said that about anything in my life. I do not believe in regret. This one? Hell, yes. I'd even gift wrap it for you and seal it with a kiss. It doesn't work that way, though. Here we are and here we stay. It's hard to believe that we have only been doing this for nearly five months, now. It's seems like an eternity has pass, but at the same time it feels like a nano-second. Sounds like life, doesn't it.
The sun is coming up and I need coffee. 'til later, gotta jet.
Monday, July 13, 2009
One teaspoon at a time.
Howdy, hippie chicks and groovy folks! These last few days have been, what you might call, challenging. I think we are finding our stride. This BK Virus sucks pond water. In a big way.
Counts:
Sunday July 12: Platelets ~ 54, Hematocrit ~ 35, ANC ~ 492, Weight ~ 13.3
Monday July 12: Platelets ~ 55, Hematocrit ~ 36, ANC ~ 963, Weight ~ 13.2
Did you see Monday's ANC? Wow. We need two consecutive days of an ANC of 500 or greater to be considered engrafted. Soon, I would think. It will continue to jump around like this, for some time.
Sunday: Fried Shrimp and Fried Clams. Painful peeing. Visit from Papa. Painful peeing. Balloons made of Gloves. Painful peeing. Monty Python and the Holy Grail. Painful Peeing. Discovering how great the fresh fruit platter is. Painful peeing. Trying to sleep. Painful peeing. Strangely intense nightime groin itch. Painful peeing.
See a trend? I kid you not, this kid pees every 3 minutes. Occasionally less frequently, but by and large, every three minutes. The medications for releiving his symptoms do not work 100%. He just has to suffer through it. Thankfully he is not peeing visible blood or blood clots. It does not seem to be progressing. We just have to wait it out.
Other than BK, he is fantastic. We switched his Tacrolimis to oral (nG Tube). It was a continuous 24 hour med. We are now at three times a day dosage. This medication is checked to determine the level of medication in his body to insure theraputic levels. Nothing more, nothing less. Now that he is on oral, a level will be taken Wednesday and his dosage could change. We have a nurse tonight that is pretty rockin'. We got busy and changed Gregory's IV pole over to a single pole. We now has Two Large medication infusers, One Small medication infuser, a Kangaroo Pump for his nG feeds and a double line "regular" IV pump. The pole is much lighter and we now have what's called a Lilly Pad on the bottom. They are these really cute platforms that sit on the bottom of the pole and allow the kids to sit on the bottom of the pole for walks around the unit. It's pretty stinkin' cute. Pictures to follow. I forgot my camera when we took it for a test ride, tonight.
For posterity, his current meds:
Normal Saline (24 hours/day at 10ml/hour)
Normal Saline with Magnesium (24 hours/day at 10ml/hr)
Morphine (24 hours/day)
Peptamen Jr (nG Feed formula 50ml/hour 20 hours/day)
Oral Tacrolimus
Oral Pyridium
Oral Oxybutinin
Oral Ursodiol
Pantroprzole (to limit stomach acids)
Ativan
Zofran
Foscarnet
Voriconazole
Magnesium
Hydralazine (PRN for High Blood Pressure)
Benedryl (PRN)
Prednisone (currently on a taper)
I think this is all of them. I may have missed one or two. When his ANC hit 675 the other day they discontinued the meropenem. Which was his antibiotic. It make me a little nervous not having an antibiotic on board. TMI ahead: He has not been regularly having bowel movements. Today he had two BIG ones. Very firm. The second one caused him a good amount of pain. He is still wearing diapers, thankfully. There was blood on the diaper. I think he may have torn something. Not a good area to have an open wound. I will certainly talk with the team about this, tomorrow. I know that he will go back on the oral Bactrim at discharge. Speaking of discharge........ he has had weekly chest x-ray's since admit. They have all been clear. The team decided today that we will discontinue chest x-rays, unless he presents with respiratory symptoms. We will have one at discharge. Yay!! Less radiation exposure. A bonus.
This entry couldn't be more random. This morning at 3:45am, Gregory decided if he couldn't void his bladder, he was going to void his stomach. He heaved out 100cc's of formula. We are not quite sure why. His nG feed was immediately decreased and was gradually brought back up to speed throughout the day. He hasn't had any stomach issues since. *crossed fingers*
Today was filled with lots of chatting and learning to be at peace with peeing every 3-6 minutes. Not joking. We will be chatting along and his little sqeaky voice exlaims, "Potty!" Which is my cue to help him to a standing position, pull down his drawers, ready the hand held urinal and prepare to receive his meager offerings. So incredibly meager. One teaspon at time. On top of it all, he has this incredibly intense groin itch that occurs only at night. He will dig, dig, dig in his sleep. The nursing staff has been incredibly excellent about helping me to step out for a few minutes, every few hours. There are volunteers on staff for this, but they are not allowed to help the kids go potty. Which means the nursing staff has to do it, if I'm not around. I know that this is probably their job, but come on! They would get NOTHING done. They have to glove up everytime they help him to pee. Talk about time consuming. This would be so much easier on both of us, if Gregory would not be so stubborn and use his diaper/pull ups. He is bound and determined NOT to use them. I totallyl give him kudos for this, but come on kid. Can we get a break? I am still playing with his nightime med schedule. We have been dealing with this since Thursday and nightime is truly the worst. In order to fall asleep he needs a morphine bolus and a dose of benedryl. He has been recieving another round of both, some time in the early AM. He doesn't sleep for more than 45 min to an hour at a time. This is only ONE block of sleep time. The rest of the time he is still exclaiming "Potty!" in his sleep and we do the routine, with Gregory pratically sleep peeing. He and I have been having constant dialogue about using his diapers. I'm trying to get him to be OK with using them. *shrug* At least a girl can try.
He did get to participate in a very small group Physical Therapy activity, today. They did some kids Yoga that was so awesome. I love the imagery. I'd like to continue it with him when we get to the apartment. The PT gave me some recommendations. They also got to play with balls and a parachute. Gregory was animated, full of glee and giggly. It was awesomeness to watch.
The goal for the next few weeks is to get all his meds to oral. Which can all be placed through his nG tube. His counts continue to come in. He is making a few platelets. He tried to fever today!!! I watch him like a hawk and can tell when his temp is starting to rise. Once he shakes this virus and can get off the Morphine, provided nothing else comes up, we will be able to blow this popsicle stand and get our sassy selves over to the apartment.
Over the weekend I talked to the nursing staff about getting in touch with the naturopath on staff. While I KNOW that there is no natural cure for Gregory I KNOW that we can reduce is risk of secondary cancer via knowledge. Limiting and/or avoiding certain things and adding others. I picked up How to Prevent and Treat Cancer with Natural Medicine. It's really good. I would recommend it to everyone. Knowledge is power. I guess the naturopath does a lot of work with the Oncology unit, but does very little with the BMT kids. The team was a little shocked that I asked to see him. They wanted to know why and I gave some lame response about nutrition and avoiding secondary cancer. The attending alluded that the nutritionist could help out with that and I responded with even more tripping over my sleep deprived tongue. The thing is this: The team has to make a referral to the naturopath in order for me to see him. Either my stunning charm or their humor in my request ("We'll prove to her that she's nuts!") granted me a referral. It's my understanding this guy is very busy. I should have requested it at the beginning, but my mind was on other things. Hopefully we will be able to see him before we leave.
Yesterday I received some very sobering news. The kid that was next to us when we were admitted (Lonnie, 21, 2nd relapse for AML, first BMT) died on June 29. We still have the tiger that his mom gave Gregory. I'd like to sign Lonnie and Gregory's names to it, along with their transplant dates, and pass it on to another family, with the hopes that he remains the units BMT mascot.
Well. It's time for me to start thinking about getting some shut eye. Things I need to remember: Peace, Joy and Stamina.
'til later, gotta jet.
Counts:
Sunday July 12: Platelets ~ 54, Hematocrit ~ 35, ANC ~ 492, Weight ~ 13.3
Monday July 12: Platelets ~ 55, Hematocrit ~ 36, ANC ~ 963, Weight ~ 13.2
Did you see Monday's ANC? Wow. We need two consecutive days of an ANC of 500 or greater to be considered engrafted. Soon, I would think. It will continue to jump around like this, for some time.
Sunday: Fried Shrimp and Fried Clams. Painful peeing. Visit from Papa. Painful peeing. Balloons made of Gloves. Painful peeing. Monty Python and the Holy Grail. Painful Peeing. Discovering how great the fresh fruit platter is. Painful peeing. Trying to sleep. Painful peeing. Strangely intense nightime groin itch. Painful peeing.
See a trend? I kid you not, this kid pees every 3 minutes. Occasionally less frequently, but by and large, every three minutes. The medications for releiving his symptoms do not work 100%. He just has to suffer through it. Thankfully he is not peeing visible blood or blood clots. It does not seem to be progressing. We just have to wait it out.
Other than BK, he is fantastic. We switched his Tacrolimis to oral (nG Tube). It was a continuous 24 hour med. We are now at three times a day dosage. This medication is checked to determine the level of medication in his body to insure theraputic levels. Nothing more, nothing less. Now that he is on oral, a level will be taken Wednesday and his dosage could change. We have a nurse tonight that is pretty rockin'. We got busy and changed Gregory's IV pole over to a single pole. We now has Two Large medication infusers, One Small medication infuser, a Kangaroo Pump for his nG feeds and a double line "regular" IV pump. The pole is much lighter and we now have what's called a Lilly Pad on the bottom. They are these really cute platforms that sit on the bottom of the pole and allow the kids to sit on the bottom of the pole for walks around the unit. It's pretty stinkin' cute. Pictures to follow. I forgot my camera when we took it for a test ride, tonight.
For posterity, his current meds:
Normal Saline (24 hours/day at 10ml/hour)
Normal Saline with Magnesium (24 hours/day at 10ml/hr)
Morphine (24 hours/day)
Peptamen Jr (nG Feed formula 50ml/hour 20 hours/day)
Oral Tacrolimus
Oral Pyridium
Oral Oxybutinin
Oral Ursodiol
Pantroprzole (to limit stomach acids)
Ativan
Zofran
Foscarnet
Voriconazole
Magnesium
Hydralazine (PRN for High Blood Pressure)
Benedryl (PRN)
Prednisone (currently on a taper)
I think this is all of them. I may have missed one or two. When his ANC hit 675 the other day they discontinued the meropenem. Which was his antibiotic. It make me a little nervous not having an antibiotic on board. TMI ahead: He has not been regularly having bowel movements. Today he had two BIG ones. Very firm. The second one caused him a good amount of pain. He is still wearing diapers, thankfully. There was blood on the diaper. I think he may have torn something. Not a good area to have an open wound. I will certainly talk with the team about this, tomorrow. I know that he will go back on the oral Bactrim at discharge. Speaking of discharge........ he has had weekly chest x-ray's since admit. They have all been clear. The team decided today that we will discontinue chest x-rays, unless he presents with respiratory symptoms. We will have one at discharge. Yay!! Less radiation exposure. A bonus.
This entry couldn't be more random. This morning at 3:45am, Gregory decided if he couldn't void his bladder, he was going to void his stomach. He heaved out 100cc's of formula. We are not quite sure why. His nG feed was immediately decreased and was gradually brought back up to speed throughout the day. He hasn't had any stomach issues since. *crossed fingers*
Today was filled with lots of chatting and learning to be at peace with peeing every 3-6 minutes. Not joking. We will be chatting along and his little sqeaky voice exlaims, "Potty!" Which is my cue to help him to a standing position, pull down his drawers, ready the hand held urinal and prepare to receive his meager offerings. So incredibly meager. One teaspon at time. On top of it all, he has this incredibly intense groin itch that occurs only at night. He will dig, dig, dig in his sleep. The nursing staff has been incredibly excellent about helping me to step out for a few minutes, every few hours. There are volunteers on staff for this, but they are not allowed to help the kids go potty. Which means the nursing staff has to do it, if I'm not around. I know that this is probably their job, but come on! They would get NOTHING done. They have to glove up everytime they help him to pee. Talk about time consuming. This would be so much easier on both of us, if Gregory would not be so stubborn and use his diaper/pull ups. He is bound and determined NOT to use them. I totallyl give him kudos for this, but come on kid. Can we get a break? I am still playing with his nightime med schedule. We have been dealing with this since Thursday and nightime is truly the worst. In order to fall asleep he needs a morphine bolus and a dose of benedryl. He has been recieving another round of both, some time in the early AM. He doesn't sleep for more than 45 min to an hour at a time. This is only ONE block of sleep time. The rest of the time he is still exclaiming "Potty!" in his sleep and we do the routine, with Gregory pratically sleep peeing. He and I have been having constant dialogue about using his diapers. I'm trying to get him to be OK with using them. *shrug* At least a girl can try.
He did get to participate in a very small group Physical Therapy activity, today. They did some kids Yoga that was so awesome. I love the imagery. I'd like to continue it with him when we get to the apartment. The PT gave me some recommendations. They also got to play with balls and a parachute. Gregory was animated, full of glee and giggly. It was awesomeness to watch.
The goal for the next few weeks is to get all his meds to oral. Which can all be placed through his nG tube. His counts continue to come in. He is making a few platelets. He tried to fever today!!! I watch him like a hawk and can tell when his temp is starting to rise. Once he shakes this virus and can get off the Morphine, provided nothing else comes up, we will be able to blow this popsicle stand and get our sassy selves over to the apartment.
Over the weekend I talked to the nursing staff about getting in touch with the naturopath on staff. While I KNOW that there is no natural cure for Gregory I KNOW that we can reduce is risk of secondary cancer via knowledge. Limiting and/or avoiding certain things and adding others. I picked up How to Prevent and Treat Cancer with Natural Medicine. It's really good. I would recommend it to everyone. Knowledge is power. I guess the naturopath does a lot of work with the Oncology unit, but does very little with the BMT kids. The team was a little shocked that I asked to see him. They wanted to know why and I gave some lame response about nutrition and avoiding secondary cancer. The attending alluded that the nutritionist could help out with that and I responded with even more tripping over my sleep deprived tongue. The thing is this: The team has to make a referral to the naturopath in order for me to see him. Either my stunning charm or their humor in my request ("We'll prove to her that she's nuts!") granted me a referral. It's my understanding this guy is very busy. I should have requested it at the beginning, but my mind was on other things. Hopefully we will be able to see him before we leave.
Yesterday I received some very sobering news. The kid that was next to us when we were admitted (Lonnie, 21, 2nd relapse for AML, first BMT) died on June 29. We still have the tiger that his mom gave Gregory. I'd like to sign Lonnie and Gregory's names to it, along with their transplant dates, and pass it on to another family, with the hopes that he remains the units BMT mascot.
Well. It's time for me to start thinking about getting some shut eye. Things I need to remember: Peace, Joy and Stamina.
'til later, gotta jet.
Saturday, July 11, 2009
Have it your way? ~ NOT!
I've been totally dragging my feet on this one. What's that river in Egypt called? That and the fact that I have had VERY little time to spend writing. First things first:
Counts.
Friday July 10, Platelets ~ 63, Hematocrit ~ 39, ANC ~ 309, Weight ~ 13.4
Saturday July 11, Platelets ~ 53, Hematocrit ~ 37 ~ ANC ~ 675, Weight ~ 13.5
Gregory's new Bone Marrow is doing great. Everything seems to be progressing as it should. Summary of Day 28 testing.
Chimerism ~ Peripheral Blood is 100% donor
Flow Cytometry ~ There is no evidence of abnormal cells.
Morphology ~ All lines of graft are working. Red Cells, White Cells and Platelets
Skin Biopsy ~ No evidence of GVH!
This is all fantastic news. He is tolerating his nG feeds, we are slowly working up to 50ml/hour. He is tolerating a couple of meds via his nG tube. Also? He LOOKS so much better. We are in the midst of a Prednisone taper. We were almost finished with the Morphine............ almost.
Friday morning Gregory started having severe pain with urination. It has bee confirmed as BK Virus, also not-so-fondly-referred to as The Burger King Virus (at least by patient families). I have one word for this, but it's not very nice. Instead I will say: AAAAARRRRRGGGGHHHHHHHH! There is no anti-viral for this. None. We have to wait it out. It causes extreme pain with urination and painful bladder spasms. His symptoms are being treated with Pyridium and Oxybutynin. The Pyridium is an analgesic for the urinary tract and the Oxybutynin is a smooth muscle relaxer for the bladder. The problem is this. THEY DO NOT WORK 100%. He is stil in pain upon urination and when his bladder spasms. Which is freakin' often. How does every five minutes strike you? We upped his Morphine drip and are going to bump it again tonight. Last night he received two doses of Benedryl, just so we both could catch some z's. He was having a pretty hard time of today until bath time. He was NOT looking forward to taking a bath. The nurse suggested a Morphine bolus! Yay! He received one and has been in super spirits ever since. Super chatty, happy and very little pain, while urinating. It is still every 5 minutes, but it is with much less pain. He has had elevated blood pressure and received some medication last night. Just once, though. Elevated temps are not associated with this, which is a huge releif. At least the rest of his body has been comfortable. Come on, though. Peeing. Every. Five. Minutes. Sometimes he goes for 15 minutes or even 30! I'm not sure what tonight will bring. It's now almost midnight and he is still up. As soon as I crank this out, we are going to cuddle down and try and get some rest. Thankfully Papa was here today and I was able to get a few hours nap! So. We are stuck in the hospital until this works it's course. Oh yeah. Blood in the urine and blood clots are quite common, too. Wanna know how much longer we will be here? At least another month. Yep. Minimum. Several months in not uncommon, either. Craptastic, huh? He does have traces of blood in his urine, so his platelet threshold has been raised to 30. One of the things that is saving us is that Gregory is more than willing to use the hand held urinal. We hang it on the side of the bed and neither of us need to get out of bed, struggle with the IV pole and make a trip to the potty. I tell you, THAT takes five minutes in and of itself. I am awfully grateful for his possession of a penis, at this point.
I must admit to a selfish bright spot. Since we are going to be here for at least another month (unless something radical happens) I will be able to make it back to Spokane for the first weekend in August. Why is this important?, you ask. It's the weekend of my 20 year High School Reunion. I unabashedly loved high school and am really looking forward to being able to attend. Also? I'll get to spend two nights at home with Larry and the older OffSpring. Talk about win-win all around. Nana will come and be with Gregory in the hospital. Providing we are still in-patient and all else is well, this is the plan.
Time to hunker down and try to get some rest. My request? Grant me the stamina to hold a urinal in front of Gregory, every five minutes, while he pees in pain, for the next several weeks. Grant Gregory a great combination of medications to releive his symptoms, to the best of their ability. One more thing. Sacrificing Bone Marrow performance in order to grant these wishes? NOT AN OPTION. We will get through it, one way or another. 'til later, gotta jet.
PS ~ At least we really love our room. Newer pix, later.
Counts.
Friday July 10, Platelets ~ 63, Hematocrit ~ 39, ANC ~ 309, Weight ~ 13.4
Saturday July 11, Platelets ~ 53, Hematocrit ~ 37 ~ ANC ~ 675, Weight ~ 13.5
Gregory's new Bone Marrow is doing great. Everything seems to be progressing as it should. Summary of Day 28 testing.
Chimerism ~ Peripheral Blood is 100% donor
Flow Cytometry ~ There is no evidence of abnormal cells.
Morphology ~ All lines of graft are working. Red Cells, White Cells and Platelets
Skin Biopsy ~ No evidence of GVH!
This is all fantastic news. He is tolerating his nG feeds, we are slowly working up to 50ml/hour. He is tolerating a couple of meds via his nG tube. Also? He LOOKS so much better. We are in the midst of a Prednisone taper. We were almost finished with the Morphine............ almost.
Friday morning Gregory started having severe pain with urination. It has bee confirmed as BK Virus, also not-so-fondly-referred to as The Burger King Virus (at least by patient families). I have one word for this, but it's not very nice. Instead I will say: AAAAARRRRRGGGGHHHHHHHH! There is no anti-viral for this. None. We have to wait it out. It causes extreme pain with urination and painful bladder spasms. His symptoms are being treated with Pyridium and Oxybutynin. The Pyridium is an analgesic for the urinary tract and the Oxybutynin is a smooth muscle relaxer for the bladder. The problem is this. THEY DO NOT WORK 100%. He is stil in pain upon urination and when his bladder spasms. Which is freakin' often. How does every five minutes strike you? We upped his Morphine drip and are going to bump it again tonight. Last night he received two doses of Benedryl, just so we both could catch some z's. He was having a pretty hard time of today until bath time. He was NOT looking forward to taking a bath. The nurse suggested a Morphine bolus! Yay! He received one and has been in super spirits ever since. Super chatty, happy and very little pain, while urinating. It is still every 5 minutes, but it is with much less pain. He has had elevated blood pressure and received some medication last night. Just once, though. Elevated temps are not associated with this, which is a huge releif. At least the rest of his body has been comfortable. Come on, though. Peeing. Every. Five. Minutes. Sometimes he goes for 15 minutes or even 30! I'm not sure what tonight will bring. It's now almost midnight and he is still up. As soon as I crank this out, we are going to cuddle down and try and get some rest. Thankfully Papa was here today and I was able to get a few hours nap! So. We are stuck in the hospital until this works it's course. Oh yeah. Blood in the urine and blood clots are quite common, too. Wanna know how much longer we will be here? At least another month. Yep. Minimum. Several months in not uncommon, either. Craptastic, huh? He does have traces of blood in his urine, so his platelet threshold has been raised to 30. One of the things that is saving us is that Gregory is more than willing to use the hand held urinal. We hang it on the side of the bed and neither of us need to get out of bed, struggle with the IV pole and make a trip to the potty. I tell you, THAT takes five minutes in and of itself. I am awfully grateful for his possession of a penis, at this point.
I must admit to a selfish bright spot. Since we are going to be here for at least another month (unless something radical happens) I will be able to make it back to Spokane for the first weekend in August. Why is this important?, you ask. It's the weekend of my 20 year High School Reunion. I unabashedly loved high school and am really looking forward to being able to attend. Also? I'll get to spend two nights at home with Larry and the older OffSpring. Talk about win-win all around. Nana will come and be with Gregory in the hospital. Providing we are still in-patient and all else is well, this is the plan.
Time to hunker down and try to get some rest. My request? Grant me the stamina to hold a urinal in front of Gregory, every five minutes, while he pees in pain, for the next several weeks. Grant Gregory a great combination of medications to releive his symptoms, to the best of their ability. One more thing. Sacrificing Bone Marrow performance in order to grant these wishes? NOT AN OPTION. We will get through it, one way or another. 'til later, gotta jet.
PS ~ At least we really love our room. Newer pix, later.
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