This may not be where I'm at, yet I'm trying hard to manifest just a little bit. These four young men have lyrics and music for every moment.
via youtube.com
Thursday, December 31, 2009
Tuesday, December 29, 2009
Watching, waiting, wondering.......
I need to express a very heartfelt apology to anyone I have had words with over the last several weeks. I have been/still am bitter, frustrated, tired, angry..... I have not been able to find an ounce of compassion for everyone who exists in the "other" world. My days are filled with anxiously watching, logging, researching and caring for Gregory. Waiting for the sublime moment when he has a normal stool and wanting him to run around and act like any other healthy four year old. Sitting at the sidelines, watching people complain about routine, regular stuff. Watching as people continue on with their daily lives....... I've had a major life altering experience. I honestly expected people to catch my vibe and ride along with me. (There's my eternal Pollyanna, again.) Who did I think I was kidding. Maybe I've not expressed it well enough, though.
Every moment that we have on this great green planet is a moment to cherish. Moments to express love & appreciation for everything around you. Moments to make choices that enrich your life, not detract from it. Moments to choose to eliminate the negative and accentuate the positive. With every day there comes some negative. How you choose to deal with it, sets the tone. Hearing complaints about the chaos of Christmas took me over the edge a time or two. REALLY? You get to spend time with your loved ones, healthy, fully functioning loved ones, with out the spector of life threatening illness, and you are complaining? I realize that we are programmed to react this way. What I've learned is that I have choices. I don't have to be stressed out over some "tradition" that comes along. I can choose not to observe it and create what works for our family. Did you know that you can too? Really, you can. Like a dear friend of mine said, (not is so many words) your dinner spread will never look like Martha's. Your handmade presents will always be unique, your holidays will never look like a Story Book. Yet, they are YOURS. Moments that can be remembered, enjoyed and repeated throughout the year.
Add to all of this, Parker Brown died on the 20th. His mom, Sarah, was the very first cancer mom I had a real conversation with. She is an amazing woman and has nurtured an incredible family. Through six years plus of Parker's cancer treatment. Parker's service is this weekend in Omak. I send all my love to them and wish nothing but peace and laughter in memories.
Even if we had not been inpatient over Christmas, it still would have been really weird and stressful. Larry, Curtis and AnnMarie came down to the hospital on Christmas day and it was hard. Gregory was still feeling quite yucky. The hardest part, I have to admit, was Curtis. He had an absolute melt down and totally fell apart. Which pissed me off and also made me really sad. I felt completly helpless, as is always the case with his melt downs. I was finally able to get my own emotions under control and he let me hold him for a few minutes while he cried and talked. AnnMarie was precious as usual. The kids were able to come up to the unit, simply because it was Christmas and there were only four of us on the unit. The fact that the hospital was nearly vacant was so nice.
We were discharged yesterday and are settling in with our new "appliance". Gregory's pain for his G Tube placement is subsiding quickly. For the road trip home, yesterday, I gave him a dose of Oxycodone to make him feel less pain with the added movement and excitement. He was so very chatty and happy on the trip out to the water. We stopped at our home health care company to pick up our needed medical supplies, on the way out. This is the same place where he received his H1N1 vaccination. He was very clear about not getting any pokes while we were there. Instead of acutally going in, they were awesome about bringing everything out to the car and reviewing everything car side. We have new supplies for his G Tube and I am now administering Albumin via IV. He is wasting albumin and we need to supplement it. He is currently on 10 hour G Tube feeds, 10 hour IV TPN feeds and a one hour IV Albumin infusion. His current state of health is so complicated. His gut scope and biopsies showed no signs of GVH. There was evidence of Gastroenteritis. Doc and I had discussions regarding malabsorption. Doc had the tissue slides sent to Seattle (Seattle Cancer Care Alliance) for them to examine and advise us. Right now I do not know what this means or what the plan is. We are currently managing his symptoms, supporting his body function and maintaining his nutritional needs. He is continuing to be negative for any kind of bacterial or viral infection. We have been successful at keeping him safe. Before we left, yesterday, we had a visit from Physical Therapy and Gregory does have limited range of motion and tightness in his ankles, his hamstrings and the muscles of his thighs. We were sent home with exercises to stretch his muscles and increase his range of motion. He still is experiencing pain when he stands and cannot bear weight on his feet. We have discontinued his Fluconozole (anti-fungal) and lowered his dose of Tacrolimus. Hoping this combination will relieve his symptoms. We return to clinic next Tuesday to check progress.
Curtis and AnnMarie are coming out today, for the day, and I'm hoping that some time spent with the sibs will distract Gregory and bring him some happiness. I want to thank everyone who has left comments of encouragement and support. We have been at this for awhile now and I'm sure that finding words is quite challenging. I mean, what more can be said, right? This sucks, it's been ongoing for some time and will continue. If I get crabby and snarky, from time to time, remember it's not personal. It's about me, not about you. Sometimes I need to pop off once in a while to vent or else I will certainly spontaeously combust.
As always, remember to love the ones your with. 'til later, gotta jet.
Hitting the Road!!!
Saturday, December 26, 2009
What's the word? Again! Exhausted
*SIGH* Here I sit, in the hospital, with Gregory catching a few desperately needed winks. The last few weeks have been very trying. I have felt the need to write, but not the need to share. I feel like a broken record. Tired, lonely, frustrated. Why share what's already been said. Knowing this was going to be a long haul and living through it are horses of a different color. Then with all the stuff that comes with Christmas, I just didn't feel like raining on everyone parade, including my own. I also have not felt the need to document the last few weeks. I really do not want to remember some of the stuff that's been running through my head. I'm spiraling, again and would really like to have a reset button.
We were able to get Gregory's G Tube placement scheduled for Wednesday, December 23. We showed up to clinic at 8:00am, Gregory received his meds for the morning via IV, we checked into surgery at 11:30 and they took him back around 1:15. They were only able to do a GI scope with biopsies. A colon scope was not ordered or performed. His bone marrow aspirate was not performed, either. When planning this, we failed to take the holiday's into consideration. The test for his bone marrow aspirate is performed by the clinic in Seattle, (Seattle Cancer Care Alliance). With an aspirate on the 23rd there was not an availibity to run the test due to the holiday schedule. Considering that he really didn't need the BMA, it's no big deal. It was a case of, he's going to be sedated, let's get one done. There was no indication that one should be done. I was able to join Gregory in recovery around 3:00. They used a different sedation agent, I need to find out which one. They told me and now I cannot remember. It was a heavier sedation and he struggled to come out of it. He had some pretty heavy respiratory issues. He wasn't getting enough oxygen and was grunting with his breathing. He received an Albuterol treatment and had to wear an oxygen mask, for quite some time. We went up to our room around 4:00 and he had a rough night. He had two doses of Morphine and it just wasn't keeping his pain under control. His temperature started to go up. His heart rate and oxygen were struggling, too. They changed his pain med to Dilaudid and that seemed to take care of the pain. For the time being. He needed more oxygen, too. Since we were admitted for surgery, we were under the care of the surgeon. When it comes to temperatures rising and Gregory's incredibly comprimised immune system, an elevated temp is not a good thing. The doc started him on Vanco and Fortaz as a precautionary measure.
This procedure has hit him like a ton of bricks. I wasn't prepared for him to have such a hard time. He laid flat on his back for nearly three days. Then yesterday his right foot really, REALLY started to hurt him. They think it's neuropathy related to his tacrolimus level. He takes fluconazol, quite frequently, for oral thrush. He's been on it for two weeks and it has a tendancy to raise the level of tacrolimus in his blood. The plan is to discontinue his Fluconazol and see how he does. Due to all these antibiotics he's been on, I'm sure that by next weekend the thrush will be back and we will do it all over again. His blood pressure has also been slowly increasing. We started G tube feeds Thursday night. At 1/2 goal rate. He is still receiving TPN by day. Friday, he ralphed mid day. Last night we ran G Tube feeds again, worked our way up to 50mls/hr and he had another pain episode. Not knowing exaclty where his pain was, we backed off on the rate of his feeds. The long and the short of it, I'm sure we will remain inpatient until at least Monday. Due to his pain in his feet, he is not able to put his weight on his feet. He has not walked around since Wednesday morning. He is sitting up, moving around a bit on his own. I have not been able to cuddle with him, though. Any movement jars his tube and causes him pain. Instead I sit in the reliner as close as I possibly can and just be with him.
This admit has just been really crazy and mental screwy. Then throw Christmas in the middle. It has been nice to be here over Christmas, though. There have only been four of us on the unit. The balance of the hospital traffic has been really slow, too. Which for us means less exposure to anything creeepy crawly. This post is all over the place, not very helpful and full of technical stuff that I haven't defined. I know there are many folks anxious for an update. I'm just slamming this one out.
Basically: Gregory is OK. He's recovering. Slowly, very slowly. He's had some side effects and we are working through them. His heart rate was around 180-190 for quite some time the first 36 hours. His temp made it to 99.9. Which is high for him. His respiratory stuff seems to have resolved. We just need to start getting him to take deeper breaths. His quick, shallow breathing has caused him to have some fluid retention and you can hear it when he coughs. He is having neuropathy and we have a plan of action. He received IViG and IV Albumin, today. We are working on getting his G Tube feeds to goal. The wound looks really good, though. His hematocrit dropped to 31. Not transfusion level (far from it) yet it is going to take some time for him to rebuild it. He's tired, he's in pain and just getting through everyday.
Bone marrow transplants are hard. (As is any kind of major medical treatment.) I really hate Childhood Cancer, right now.
Post Surgery. Sleeping it off.
Tuesday, December 22, 2009
Only research cures Childhood Cancer......
Truer words were never spoken. This Neuroblastoma survivor is amazing. Listen to his words. Be moved to act.
via facebook.com
Wednesday, December 16, 2009
Cancer Support Groups
This is a list of support groups for anyone dealing with Cancer in their life. Someone I know was recently diagnosed with Lymphoma and I felt the need to post this resource. Check it out. The list is pretty long. If you have any questions on how to use it, please let me know. Love & Light to everyone.
Check out this website I found at acor.org
Tuesday, December 15, 2009
800,000 doses of kids' H1N1 vaccine recalled - Swine flu- msnbc.com
800,000 doses of kids’ H1N1 vaccine recalled
Tests show the shots may not be potent enough to protect against virus
Dec. 15: Health officials are recalling 800,000 doses of the swine flu vaccine. The doses, manufactured by Sanofi Pasteur, are pre-filled syringes intended for young children six months up to age three.Dr. Nancy
msnbc.com
Dec. 15: Health officials are recalling 800,000 doses of the swine flu vaccine. The doses, manufactured by Sanofi Pasteur, are pre-filled syringes intended for young children six months up to age three.
If you're feeling crummy, check your symptoms with this quiz.
A state-by-state look at the geographical spread of both seasonal flu and swine flu (H1N1) in the United States.msnbc.com
updated 2 hours, 37 minutes agoATLANTA - Hundreds of thousands of swine flu shots for children have been recalled because tests indicate the vaccine doses lost some strength, government health officials said Tuesday.
The shots, made by Sanofi Pasteur, were distributed across the country last month and most have already been used, according to the Centers for Disease Control and Prevention. The 800,000 pre-filled syringes that were recalled are for young children, ages 6 months to nearly 3 years.
Dr. Anne Schuchat, a CDC flu expert, stressed that parents don't need to do anything or to worry if their child got one — or even two — of the recalled shots. The vaccine is safe and effective, she said.
The issue is the vaccine's strength. Tests done before the shots were shipped showed that the vaccines were strong enough. But tests done weeks later indicated the strength had fallen slightly below required levels.
Why the potency dropped isn't clear. "That's the $64,000 question," said Len Lavenda, a Sanofi Pasteur spokesman.
Young children are supposed to get two doses, spaced about a month apart. Health officials don't think children need to get vaccinated again, even if they got two doses from the recalled lots, said Schuchat.
Swine flu vaccine
has been available since early October, and since then manufacturers have released about 95 million doses for distribution in the United States.
The recalled shots were made by Sanofi Pasteur, the vaccines division of France-based Sanofi-Aventis Group. The vaccine all tested fine when it was shipped out earlier this fall. But last week, testing of one lot showed that the potency had fallen about 12 percent below the government standard, Lavenda said.
The company found three other lots with diminished strength. It notified government health officials and did a voluntary recall, asking doctors to return any unused doses. The vaccine has been in high demand and the company doesn't expect to see much come back, Lavenda added.
Officials with the Food and Drug Administration, the CDC and the company all said they believe the strength of the recalled doses is still high enough to protect children against the virus. No potency problem has been detected in the same vaccine packaged in other types of syringes or vials, Lavenda said.
via msnbc.msn.com
This is why I was nervous about the Hamthrax vaccine!
Just a little 'ol update.
The days go marching one by one......... yet, not without incident or advent. Mom came out to see Gregory last Thursday and I had noticed that his Oral Thrush was back. This is when I hit the grocery store, anyhow, so I called the pharmacy and had them fill his Fluconozol. When Gregory and I headed back from Seattle, I had all of his medications transfered to the Albertson's pharmacy, that's close to our home. Not realizing that we would be out here for this long. Mom comes out once a week and I'm in town once a week, then Larry usually tries to head out every week. Between the three, I don't have a problem getting Gregory's meds. This one I needed NOW. I decided to head up to the hill and grab it myself, do my grocery shopping there, stop by the house and head back. There were a few things I needed to pick up at HomeHome. During my drive to the house, my stomach started doing flip flops and the anxiety crept in. I haven't seen my home, or walked through the door since May 11. Seven months. I also haven't taken Gregory anywhere near there. I do not want him seeing HomeHome and not stay. Not fair to him, at all. The closer I got, the weirder it felt to be driving those streets on my way home. Drive down my street, see the small changes, pull up in my driveway. The house is still in "remodel" mode. Thankfully. If it had been all pretty and such it would have been much harder. It was kinda crazy to see the cat, too. I then ran to the grocery store. When we left in May they had begun to remodel the store. Yuck. I don't like it. I don't know if that is simply because it's different or I just don't like it. Of couse I wanted it to feel like my HomeHome grocery store. Silly.
Thursday was also a taste of what it will be like when we get HomeHome. At least for a while. The checker at the grocery store knows our family. He's been there for quite some time. Long enough for me to hear about his girlfriend turned fiance' turned wife turned mom of one turned mom of two. They now are expecting their third. I haven't seen him since Gregory was diagnosed, though. At least in a situation where a conversation occured. It was my first experience of running into someone who asks "How have you been?". I looked at him, took a deep breath and told him the truth. It probably would have been easier to reply with a standard response and let it go. I have no idea what my true intent was in telling him. I question this constantly. I do not want anyone to think that I am attention seeking, through Gregory. Yet, this is a real experience, it has affected our entire life. How can I NOT say something? There's also the advocacy and awareness piece, too. A very dear friend of mine reminded me of something, too. I neglected to thank him for asking and taking the time to listen. Need to remember to do that.
We still don't have a surgery date for the placement of Gregory's g-tube, EGD, GVH biopsies and six month BMA. It's a very challenging thing to coordinate. Friday he was started on TPN. The nutrition that goes through his central line, into his blood stream. He's now on TPN for 10 hours and nG feeds for 10 hours. This has given his tummy a rest and he is also receiving more nutrition. They started him out at a lower concentration of TPN. We needed to be sure he could tolerate them and check his labs for kidney function and nutrition levels. We had clinic today and tomorrow he starts a higher concentration. He will be a goal caloric intake, tomorrow. I can tell he is feeling better. He seems a bit brighter and wants to eat. His stomach now gets a 14 hour break. Which is frustrating. Sunday he had a scrambled egg and a slice of apple. This morning on the way back from clinic he was struck with some heavy duty stomach cramps. He hasn't had stomach cramps since TPN was started, until today. He wants to eat so desperately. Which make eating around him a challenge. If I stick to foods he really does not like, it's not much trouble. Except this kid has a pretty advanced pallette. It's a good thing we aren't HomeHome and he has to watch his siblings eat!
Larry came out Saturday for the night and Curtis decided he wanted to come, too. It was so great to have them both here, under the same roof with us. For an extended period of time. There were a few moments where I really questioned how it is going to work when we do get HomeHome. It's very apparent that Gregory and I will be attached for quite some time, yet.
Since we aren't HomeHome, with all the busyness that that brings, Gregory and I fill our days with reading, knitting, playing games...... It's incredibly leisurely. I try to keep my head as busy as possible. The demons are constantly present. Which is another reason I do not go to sleep at a "normal" hour. I prefer to fall asleep while reading. Just kind of drift off, unable to keep my eyes open. When I hit the hay at a decent hour, my mind is allowed to venture and become vivid. My dreams are twisted, conficting and sometimes downright scary. How long will this last? In all reality, it will probably never go away completely. The frequency will decline. I hope. I would like to enjoy my sleep and comfortably sleep for more than five hours. I don't have problems surviving on small amounts of sleep, I just really enjoy sleeping and would always like MORE!
My heart is just not in this, at the moment. I'm going to cut this short and come back another time. 'til later, gotta jet.
Wednesday, December 9, 2009
What a strange Christmas Present.
It's no wonder clinic days tap us out. Yesterday was no exception. We've had single digit temperatures for the last several days. Yesterday morning I went out to start the car. Loaded everthing into it and fired it up. Closed all the doors, went to walk away and heard *click*. My car has an alarm system that I never use. These frigid temps are messing with the system. All the doors were locked. The car was running. All my stuff was safely locked inside. Well, except for Gregory, he was still sawing logs in the house. At least I had the miraculous forsight to put my phone in my coat pocket, not in my bag, which was locked in the car with my spare keys. Brilliant, eh? It took AAA an hour to get here and we finally headed off to clinic. Sheesh. I'm looking for some off-set Karma, here. My car ran needlessly for an hour. Can you help me out? Use your travel mug, use one less napkin, turn off the water when you brush your teeth. Something, please? Thank you!
Gregory's gut is just not doing well. He ralphed once over the weekend and woke up Tuesday at 4:30 moaning with belly cramps. He hasn't reached his feeding rate goal yet, either. He also started throwing blood in his stool. Not much, but enough for me to notice. If I can see it, there's plenty that I can't see. At clinic yesterday, we decided that it was time to try a G Tube. A G Tube is surgically placed through the wall of the trunk, directly into the stomach. The thought is that his nG Tube, which is place through his nose, down his throat and into his belly, is causing irritation. Additionaly, he has had several placed over the last month. Placement irritates the linings and he has a tendancy to ralph out the tube. With a G Tube, it's a direct shot to the belly and if he ralphs it won't come out. We are hoping to have it placed before Christmas. Scheduling it is going to be a little tricky. Since he is going to be sedated we decided to knock out a few other things as well. He is going to have an EGD (GI Scope) to take a look at his GVH with some biopsies and a six month post transplant Bone Marrow Aspirate (BMA). He doesn't need a six month BMA, but since he will be sedated already, we are going to take a look and see how his marrow is doing. His lab tests continue to be stable. His ANC came back up. Thankfully. Tuesday's stats: ANC ~ 4224, Hematocrit ~ 36, Platelets ~ 230, Weight ~ 15Kg. Since he is not receiving the nutrition he needs, his nutrition panel took a small dip. Nothing to worry about, we just need to keep on eye on it. If we are unable to get surgery scheduled for next week, Gregory will be receiving some supplemental TPN. Through his central line, here at home. Speaking of his central line, we have been able to successfuly draw his blood through his line. Ever since we did the line study. Not sure what's up, but I'm so very thankful that it's working. Having to poke him in the arm for blood draws is so traumatic. Once we were finished at clinic, we had to stop by our home health company and Gregory received his H1N1 booster. He knew where we were going and knew what to expect. It was really hard. He cried and talked about not going. We got through it and when we got home he crashed for a few hours. Tuesday's stress also meant that his gut flared. He had increased diarrhea and cramps. It's such a delicate dance. Placement of the G Tube means a hospital stay. Most likely two nights, at least. Which for us, makes no difference.
Curtis and AnnMarie had their Winter Program last night. Our Public Montessori program is getting so big that they held the program at a local high school auditorium. We now have six classrooms. Three for ages 6-9 and three for ages 10-12. (AKA 1st-3rd grade & 4th-6th grade) AnnMarie even had a solo part. I'm hoping someone has it on video and can share it with me. Please?
I need to run and get Gregory's feeds for today started. I've only been mixing his feeds for a little over a week now and It's kinda a pain. All of you parent's with Noonies? Whoa. What a pain. I'm looking forward to the day when I can cook and prepare food for Gregory. 'Cause it will happen, it's just going to take some time. In case you were wondering: There is a light at the end of the tunnel. When it comes to bone marrow transplant, unlike other organ transplants, Gregory could eventually be medication free. He will always be at risk of GVH flares. Someday his new, donor marrow will learn to live peacefully within his body. It could take several years to get there, but he will. It's just a matter of time and patience.
Yesterday was day +180. We are officially six months post transplant. Half way through the first year. With every day that passes his risk of relapse grows smaller and smaller. A 40-50% risk of relapse in the first year tends to weigh pretty heavy on our hearts. We are getting closer, though. Doing out time and counting down the days.
I also found out something pretty cool. As long as Gregory is "pediatric", all of his future hospitalizations will be in the Hem/Onc unit. Regardless of what he might be hospitalized for he gets to stay on the "clean" floor with the awesome rooms and even awesomer staff. It's kinda wild to think that his care will be unique for the rest of his life. He has someone else's blood and blood forming system. The science amazes me. 'til later, gotta jet!
Monday, December 7, 2009
PLEASE HELP PARKER GET HOMEHOME!
This is going to be fast and not very eloquent. There is a family that has been receiving treatment in Spokane, traveled to Seattle for Bone Marrow Transplant. His name is Parker. He and his family live in Omak, WA. Mom (Sarah) just posted to their caringbridge Parker is terminal. Hospice in Omak will not treat anyone under the age of 18. He deserves to be HomeHome. I am counting on the cosmic good of the interwebs to find a way for Parker and his family to go HomeHome. There is not time to waste, though. If there is ANYONE who is reading this and can help grease the wheels for Parker and his family, PLEASE HELP!!!!!
Proof of life....
The last several posts have been pretty heavy. Let's deviate and have some eye candy.
Fresh from a bath!
It's soooooo curly!
Off to X-Ray. His Gut GVH has not help him to feel well.
Yes, I do exist. Needing a haircut and feeling like I've aged 10 years in the last 10 months.
Gregory's Gut GVH is still flaring. We have clinic tomorrow and will have more information. Probably an appointment to a GI doc as well. H1N1 booster, too. Today it was all about 'Cozy blankets & Cozy love" 'cause love makes you feel oh-so-cozy. I've discovered a really great weblog offbeatmama.com I bit the bullet and submitted my blog for their mamablogs As you might have guessed, it was accepted and my entries are now being read over there, too. So very exciting. If you are reading this from there here is a link that will enable you to read our backstory. Hopefully I'll have time, later tomorrow to post about tomorrow's clinic visit. 'til later, gotta jet.
Sunday, December 6, 2009
Let me bleed all over you, please.
Hi, out there. We are still here, still surviving. Once again, I've been avoiding posting. Not because I don't have anything to say. Rather I have too much to say and I've been battling with how much to say, how to phrase it and does it need to be said.
When Gregory was diagnosed in February, Larry's and my marriage was quite finished. Had been for sometime. As juvenile as this may sound, after nearly 13 years together, I still expected a brilliant "ah-ha" moment to rush in and rescue our stalemate. I honestly believed that a partnership should not be as much work as ours was. Cancer entered our lives and everything as we knew it ceased to exist. We made the decision to divide and conquer. I traveled the three hundred miles with Gregory for five months of treatment and he stayed behind. "Minding the store". During that time barriers were broken and bridges were being built. Staying home to care for Curtis and AnnMarie, working and trying to stay sane is no easier than what I faced. I was careful of how I shared my experience with Larry. I did not lean on him for support, knowing that he was helpless to help, being so far away. Also, he was not able to be at Gregory's side. If things had gone haywire, he would have gotten there as quickly as possible, yet I'm sure there would have been regret and guilt, too. I did not want him to feel any regret or guilt for not being able to be with us. As it grew closer to us coming home, I started to open up more. It's continued since we have been closer to home and we have had a chance to be together, occasionaly. This ia a man I do not want to risk losing, without really seeing where it will go. Which means we have a lot of work to do. I do not share deeply personal stuff easily. I keep it sequestered away. Out of sight, out of mind. My heart has been broken, I'm examining it's contents, dusting off the pieces and trying to figure out how to use it again. This man that I've shared a third of my life with means more to me than I allowed myself to acknowledge. I love, respect and trust him, more than anyone else who has ever crossed my path. I have no expectations, though. I've realized that no matter how this pans out, it will be OK. Not without giving it a chance, first. We have lost the luxury of looking to the future. We are now taking each day as it comes and seeing where it goes. It's all we can do, at least for the time being.
I've shared more than I intended. This is what's it's all about, though. The last two months have been about adjusting to not being in Seattle. Trying to find a grove with Gregory's care and slowly coming back to HomeHome. It's been a mental shift that has been very hard for me. I did not plan on needing to focus so much of my energy on Gregory's care. The last few weeks I've been trying to weave what we've experienced, what we are currently going through, with the life that Larry, Curtis and AnnMarie have been living. Coming to terms with the simple fact that I cannot compartmentalize Gregory's illness. It will need to become part of "us", meaning all five of us. I'm also worried about how Gregory will adjust to me not being at his beck and call 24/7. There will be times when he will need some patience and times when I will not be available for the other three. There really is not much I can do from here, but we can talk about it and I can react to his non-emergent needs with less urgency. I still am not sure when we will be HomeHome, I hope it is soon. This really is the best place for Gregory, for now, which is the bottom line. I really miss my family, though and cannot wait to be with them.
Gregory has been having such a hard time with his Gut GVH. Last Wednesday he started throwing up late afternoon. For the next several hours, we paused his feeds, had some anti-nausea meds and he continued to puke, everytime I turned his feeds back on. I think he puked four or five times, with his nG tube coming out with the last one. Knowing he hadn't had any fluids for several hours and wouldn't until we had a new tube placed, late the next day, I called the doctor to see if we needed to come in for IV fluids and meds. Since the tube was gone, there would be no meds, either. Surprisingly, he recommended that we stay home and come in the next morning. We had labs drawn. Between Doc, nutrition and myself we worked out another game plan. We decreased the concentration of his formula by 50%. This was started again at the slow rate, building up to his maintenance rate. He also suggested that we decrease his Beclomethasone by half. This is one of the topical steroids that Gregory takes orally. The drug did not seem to be working and Doc mentioned that Gregory may be experiencing drug toxicity. It's a med that needs to be tappered, not simply discontinued. So he is currently twice a day, versus four times a day. With the other topical orally steroid still twice a day. (I should mention that before Gregory started throwing up he was experiencing belly cramps, gas, frequent diarrhea and headaches.) Since we have started the new feeding schedule he is once agian improving. His caloric needs are not being met, but with the steroid weight and his medication supplementation, there is little worry. He did take a small dip in his weight between last Monday and Thursday. From 15.4 to 14.8 kg. I haven't had a chance to question doc about this yet, but his ANC is diving. I'm hoping that it has been artificially inflated and the current trend will stop. Last Monday it was 7300ish. This Monday it was 5400ish. Thursday it was 2616. He's also been throwing small amounts of varying white cells that I haven't seen on his labs for quite some time. Doc says the other cells are not to worry about, but I forgot to ask about his ANC. We go in again on Tuesday so I won't worry too much about it until I see Tuesdays results.
Friday was my day to do grocery shopping. Mom came out to sit with Gregory. There were several things on my list that I did not think I would find in Post Falls. Mom suggested I hit Fred Meyer on Sullivan. GREAT idea. It's not too far away and has a bigger selection. Boy, was that a mistake. I walked into the store and was immediately hit with tremondous amounts of over stimulation. There were soooooo many people, way too much point-of-sale stuff, holiday decorations, holiday promotions, too much light, too much noise and just so many people. Add to it the fact that the store has been rearranged since I was last there. I'm not prone to anxiety or panic attacks. I was having a really rough time of it on Friday. It was super cold out, too and I was dressed for it. I should have taken my coat off, but the my coat, scarf and had was added security. By the time I got to the check-out stand, I had sweat dripping down my back. I will be sticking to Post Falls grocery stores until the holiday season is over. I'm not about to put myself in that situation again. Not yet. Not to mention the germ worries, too. It's really hard to keep a three foot radius when it's that busy. *shiver*
Needless to say, the last few weeks have been so incredibly emotional. My well of strength finally runeth over and I've cried more in the last week than I have the last nine months before. Which is not a bad thing. I knew it would break eventually. I find myself quite teary eyed, though. The smallest comment, action or thought will cause my eyes to bubble over. I know it's part of the whole "broken heart, now let's use it again" thing. Gregory made a wish on a star the other night and his wish was to have Daddy, Sissy and Curtis come out to the lake. All five of us were together for Thanksgiving and it truly was the greatest Thanksgiving, ever. Super simple and totally roughing it, but we were all together. I must admit, we even used paper plates to dine off of. *hangs head in shame, but not really.* The most important people in my life were with me. Starting to try and figure out what's next and how to get through it. Moment to moment. I'm spent, guys. 'til later, gotta jet.
Tuesday, December 1, 2009
'nuf said.....
Rob is oh-so-wise......
VIRGO (Aug. 23-Sept. 22): In one of his short poems, John Averill
(twitter.com/wiremesa) describes a scene that I think captures the
essence of your current astrological omens: "Today is the day of the
photo of moonrise over Havana in a book on a shelf in the snowbound
cabin." Here's a clue about what it means: The snowbound cabin is where
you are right now in your life. The moonrise over Havana is where you
could be early in 2010. How do you get there from here?
If you see him today, squeeze him for me......
Eleven years ago, this morning, I went in to see my OB. Not knowing that today would be THE day. Curtis arrived at 7:02pm. Happy birthday, munchkin. Every fiber of my being wishes I could be with you, today. I love you.
*Gregory is doing better. Thanksgiving was bittersweet. I'll post more at a later time......
Wednesday, November 25, 2009
Another day in the life of Pediatric Bone Marrow Transplant.
Ya know, the easiest way to navigate this Childhood Cancer road would be to stick my head in the sand, plug my ears and sing *lalalalalalalalala*. It would. I'm not wired that way, though. Today is our offical nine month diagnosiversery. Gregory was admitted on February 23rd and his bone marrow aspirate was two days later, on the 25th. Nine months is just a drop in the bucket. I've received bad news a lot these last few weeks. For a while I was thinking that it's just a bad time, right now. I'm beginning to change that line of thinking. I keep getting bad news. Which leads to a shift in my thought process. Trying to accept, live with and be at peace with the idea that frequent bad news is part of all this. How does one do THAT? I don't have an answer and don't expect one to be forthcoming, anytime soon. I could just check-out of this constantly growing community and wash my hands of it. Can't do it. It's not an option, for me. There is a driving part of me that requires community. A coming together of shared experiences, mutual understanding and support. While I can't say to fellow cancer families "I understand what you are going through." I can say "I get it.". Every experience is unique, as unique as every child. There is incredible comfort and security in being able to look another cancer parent in the eye and recognize the emotions that flit across the surface. To be able to have a casual conversation about our experiences and not see the other person recoil in horror. 'Cause it is horrifying and before diagnosis, I would have recoiled like crazy. To know that when I open my mouth the other person is not going to nervously redirect the conversation to something safer to discuss. It's human nature to do this. I get it. Sometimes we all need SOMEONE to be present, listen and witness what we have to share. THAT is why I stick around. Not because I enjoy getting sucker punched with bad news, but because we need each other.
While Gregory and I were in Seattle we met this incredible kid. I say kid, but he was an adult. 18 or 19, I think. The details get kinda lost, we met so many families. Paul had survived Lymphoma, bone marrow transplant (I think. I'm pretty sure, though.) He received radiation as part of his treatment. He develped Leukemia, secondary to radiation. Not that there is a good leukemia, but he had the bad kind and needed another bone marrow transplant. When we met he had already had his second bone marrow tranplant and was struggling with GVH and general "sickness" issues. They had a really hard time getting his blood pressure under control and the medications he was on caused some gnarly insomnia. He would roam the halls, late at night. He had this really great t-shirt that said "Fuck Cancer". My sentiments exactly. We formed a friendship. It's gotta be rough to be an adult, yet be in limbo. He was treated at Seattle Children's with all the kids. He left Seattle not long before we did and went back HomeHome. Just this morning I received an email, letting me know that he had died Saturday night. The details are sketchy, I haven't had a chance to talk with his cousin, yet. It looks like he relapsed and was sick, too. Fluid in the lungs and brain damage from infections. .............. I don't know what to say, next. There really is nothing that helps. My knee jerk reaction is to jump on my soapbox and BEG everyone to get active and seek funding for Pediatric Cancer research. One of these days I will put together a page on "How you can help." Not now, though.
If you haven't heard already, we had the longest day, yet, at clinic on Monday. We arrived at our normal 8:00 time and proceeded to get ready for blood draw and IViG infusion. Well....... we have been having troubles getting his central line to draw. It flushes with ease, though. Monday they could not draw any blood out of it, so we injected some TPA, thinking it was a clot somewhere and waited for it to work. An hour later, no luck. Doc was consulted and it was decided that we needed a line study to determine what was going on. I have no idea what was going on in the hospital, on Monday. Obviously Gregory's need for a line study was a pretty low priority. We waited. And waited. And waited. Then we waited some more. And waited. During this time we discussed his gut issues and decided to try a different "food" for his feeding tube. We are now using Elecare, which is totally broken down. Hopefully Gregory will absorb this food much easier, give his belly a chance to rest and recover. He is being slowly introduced to this food. 20ml/hr for 10 hours, 40ml/hr for 10 hours. 4 hour break. 40ml/hr 10hrs, 50ml/hr 10 hrs. 4 hr break. 50ml/hr for 10hrs, 65mls/hr for 10hrs. 4 hr break. 65ml/hr for 20 hrs. 4 hr break. (BTW~ There's 30ml in an ounce.) I've already seen a significant change in his AM stool. With less stooling, too. Then again, he is receiving a significantly smaller volume. The true test will come as the volume increases. If this doesn't work, the next step is TPA, which is infused via his IV. Bypasses his gut altogether. We also discussed his incremental weight gain. He's up another .2kilograms. 15.4 now. His calorie intake has been consistent. As we were discussing this, Gregory was curled up, laying down in my lap. Doc asked me if this was common behavior. It has been. He hasn't been off the bed to often in the last few weeks. Doc then attributed his weight gain to being sedintary. Ah Ha! Makes complete sense. Thank you! Finally around 2:30ish it was time for his line study. They took us down to radiation and Gregory got to lie on this long skinny table that had an x-ray camera that could pass over his body, while taking "movie" x-rays. There was monitors at the bedside that he could watch the pictures, while they were doing it. They injected dye into both lumens of his central line and watched what it did. It was really cool. Meanwhile, he is totally chatting up the techs and they are getting a much needed kick out of it. They had even brought down an Anesthesia nurse, just in case he needed something. Nope. Didn't need it. She discovered this herself and looked and me and said, "Well, the only thing he could have had was Versed, anyway." I looked at her and said "Nope. He can't have Versed." Gregory has a paradoxical reaction to Versed. We didn't need her, but it was kinda nice to see a familiar face. She has worked with us, before, during his other surgical procedures. (side note: I really wish they would look at his chart BEFORE seeing the patients. Nothing like suggesting a drug that your child cannot have to instill a sense of security. NOT! Yes, yes, I know. They would have consulted the chart before administering anything, but.......) The test showed that he DID NOT have any kind of obstruction. What it did show was that when you drew back on the line, surrounding tissue was being pulled up into the entrance, thus not allowing any blood to flow through it. This could be due to several reasons, the line could have shifted or with his additional weight gain, it is causing the area to be compressed. The only solution to this is to place another line. Which means surgery. Which means risk of infection. Gregory is at a point where he does not NEED a central line for blood draws. Yes, he does receive them weekly. We CAN still use it for infusions. This is good. So. He now has to have arm pokes. Ugh! After all this, we went back up to the clinic and waited for IV therapy. They showed up and had to poke him in both arms to get the amount of blood we needed. We are still doing weekly blood cultures, on top of all his other tests and it requires a substantial amount of blood. It was traumatic and I'm sure our weekly visits are going to be filled with anxiety, now. Argh! Something I was desperately hoping to avoid. Which means we certainly won't get an accurate blood pressure, anymore. Monday's was up AGAIN. 134/75. But came down, in the evening. Gregory's threshold for IViG infusion is 400. Doc has requested that we had IGg level results before transfusion. If it was below 450, he would be infused. Which meant we had to wait some more for results. Results were 441. Which meant he needed IViG. Duh! At this point the clinic was closed and we were shuffled over to the inpatient unit for his transfusion. We were settled into our original room, 308, the room we had back at diagnosis. After vitals, Tylenol and Benedryl, it was finally time to start the infusion. It was 6:30pm. The infusion went pretty fast, he slept through most of it and we were cut loose at 9:30. Then the drive back to our Water Retreat and we were settled by 10:30. All told it was a 15.5 hour day.......
I feel like we are making small progress with Gregory's gut. The next several days will be a challenge, though. Daddy and the kids are coming out on Thursday and we will be having a Prime Rib Thanksgiving. We are not a turkey loving family, but man do we love Prime Rib. With Greogory's gut he is not able to eat a lot of table food. I have even cut out dairy. You don't realize how much you eat had dairy, until you can't eat it. Today mom is coming out and I will have a chance to run to the store and pick up some Lactase so he can at least have some of what he loves. (Chocolate MIlk & Cereal) The family will be coming out again, on Sunday. Curtis' birthday is next Tuesday and we will be observing it then. It's just too hard to try to get together during the work/school week. It's going to be a busy stressful few days for Gregory. I just hope he weather's it well. As always, time will tell.
As you are all gathering with your families this Thursday (at lest those of you that are in the US or abroad and observe Thanksgiving. AKA: Travis) rejoice in your gatherings and be glad. Make decisions that are good for you and your families, show your love to one another and remember those that are not able to be present. Share memories and make new ones. Remember too, that you don't need Thanksgiving to do this. Everyday is an opportunity. My greatest gift this year is Gregory's life. The medical advances that allows him to still posess life. Not just a mere being alive, either. Happy Thanksgiving to every last one of you. 'til later. Gotta jet.
Sunday, November 22, 2009
Time is on my side. Says who?
This week has been so HARD. So many things happening. Things of which, I have no control or say in. Sounds like life, doesn't it?
This is my little pity party. Please play along. Thank you. You would think that this part would be the easiest. It's not. It's just as challenging as all the rest, if not more. Gregory and I have nothing but time, these days. The daylight hours are far too short and I sleep far to little. Noting but time to think. Time to worry. Time to contemplate. Time to wonder. Time to greive. Time to imagine. There are so many families, families living with Childhood Cancer (Aplastic Anemia, too.) that are having such a rough time. Gregory is OK, but could be so much better. I've said it before, no matter what he COULD be experiencing, the reality isn't any easier.
I knew we would be having peaks and valleys. Living it is another story. His GI Graft Versus Host is really giving him a hard time. We started his B&B (Budesonide & Beclomethason. Topical steroids) last Friday. The only relief he has received is that he has less gas and no more stomach cramps. He still has diarrhea (several times a day), is nauseated, doesn't have an appetite and now he is having breakdown in the diaper area. Enough that his sores started to open up and bleed, today. Which is not good. An open wound in that area is ripe for infection. It hurts so bad to change him that I've been too lenient with his diaper care. Today I had to apply the smackdown and tell him how it was going to be done. He does have a little bit of an appetite, but I'm afraid to let him eat anything. Afraid that it will irritate him more and cause him more pain. Which means I'm telling him "No" to most food. Add to that, the fact that he puked out another nG tube, last night. Which tells me his stomach is still really sensitive. We had another power outage Friday night. It went out about 11:30, scared Gregory. He ralphed at 12:30. The last several weeks, he has been feeling so off that all he wants to do is be close to me. Preferably touching, laying in my lap. He's been very sleepy, too. At least for the last few days. I've been wracking my brain, trying to figure out why. Any change in his demeanor can mean something big. He started blood pressure medication on Monday. For the last several weeks his pressure has been elevated. So, starting medication was a logical, evidence based, decision. Home health came out today to place a new nG tube and before we started I asked her to take his pressure. Thinking this was a possible culprit, I had withheld his blood pressure medication today, knowing I would be getting a reading. Monday his pressure was 121/84. Today it was 94/58. Without medication. I've been trying to think of a way to get more accurate reads. I'm wondering if the early morning clinic visits are superficially elevating his pressure. Yes, I could purchase a little hand held automatic device, but that's pretty expensive. I asked home health if they would loan me a cuff and just teach me how to do it. Manual reads are far more accurate, anyhow. I already own a stethascope. I use it to check placement of his nG tube. Make sure it hasn't migrated out of his stomach. (I do this by using a medication syringe inserted into the end of his tube, place the stethescope over his stomach and push air through the tube. You can hear the whoosh of air as it enteres the stomach.) We have clinic on Monday, along with an IViG infusion. I'm hoping to get some help and answers for his GVH. The kid needs some relief.
All in all, we are doing good. I've just had a few too many moments, lately, where the reality of all this is flashed before me in Technicolor. Moments where we are going about our routine and I get a flash of "do you really realize what you are doing? This is soooo not normal!". Which is at constant odds with "He is doing so well, comparitively. What are you complaining about?". This cancer beast fractures families. Throws everything to the four winds and keeps it there. No matter where you are at on the continuum, you feel like an observer of what used to be. There are parts that I really miss. Yet, they are simple things. Being with Larry, Curtis and AnnMarie, under the same roof, is the biggest. Actually the only one, for now. It doesn't get to me all the time. Just in those Technicolor moments. I know Gregory feels it, too. When we ran to our HomeHome pharmacy to pick up a med, he recognized it and chatted about the neighborhood. The very next morning, he sat up from waking and started yammering about "Nana's House". First time he's done that. He remembers, too. I watched Mozart & The Whale, this week. It was filmed in Spokane and not in the usual way where you see a glimpse of your hometown in a movie and go "Hey! That was Spokane." This entire film was entirely Spokane. Gregory recognized Riverfront Park and the carousel and got teary eyed. This week has been full of moments like that. It's also been filled with plenty of love and tenderness, too. Sitting here, snuggled up with him is beyond pleasant. The other day he said to me, "Mommy. I love you. Really badly." Said it again today, too. Lately he has been sleeping curled up right next to me. Like a little shrimp. Nestled in any curve he can find. He's even been wrapping his little arm around my neck, while he is sleeping. While it is sweet as can be and I LOVE it, I can't help but wonder what is compelling him to feel the need to do this. How is his little brain processing all this. I'm realizing that he will not, magically, cross the one-year-post-transplant mark and emerge unscathed. I knew he wouldn't, but seeing it is different. All three of the OffSpring are going to require some pretty heavy hand holding and assistance. For some time.
There are three families that are very heavy on my heart. Parker. Maddy. Gregory H. I don't have the vocabulary to express how I feel, right now. What I can say, is that I don't know where to put, what I do feel. They are having such a rough time. If you feel it, please drop by their pages and drop a line. I KNOW that every word makes a difference.
This is a pretty down post, but it's where I'm at, for now. Don't send the troops and get all paranoid, though. It's well in hand and we do have plenty of fun, giggly time. As Larry says: "It is what it is." And it is. 'til later, gotta jet.
BTW ~ 272 days since we started this. 195 days since we've been home. 164 days since transplant.
Friday, November 20, 2009
Testing....1.....2....3......
Anything but THAT.
Yep. Signed up for posterous. Not quite sure how to use it, yet. I think it is going to be grand, though. Test. test. test.
Friday, November 6, 2009
Labor & Delivery meets Childhood Cancer
I just finished The Business of Being Born and I need to write. I've avoided this movie. Like the plague. I've had numerous opportunities to see it. Due to my own birth experiences I could not watch this movie until I experienced something more painful. I could not watch The Business of Being Born until I'd experienced Childhood Cancer. That is how deep my feelings are in regard to my birth experiences.
I wasn't not a young new mother. I was 27 when Curtis arrived. I can't even call how they came into this world as births. I usually refer to their arrivals as being "surgically removed". I've had three caesareans. Curtis was a miniscule five days past my due date. I went the "regular" route for pre-natal care and delivery. I was not aware that I had another option. Inductions were normal and routine, in my mind. To be expected. Why wait if you didn't have to. I was so anxious to meet this little being. I love being pregnant. Love, love, love it. I am one of the lucky ones and never had morning sickness. The day Curits arrived, the doc asked me if I wanted to have a baby today. My response was a resounding YES! Induction with Petocin, they broke my water. Several hours later, it was discovered that Curtis was breach. Emergency Ceasarean. It happened so fast. Once he was outside he developed a pneumothorax. The lining of his lung separated too quickly with his first breaths and created a hole in his lung. He was rushed off to the NICU. As they were stitching me up, they told me he would be there overnight. Thankfully, it healed quickly and he was in my arms about 45 minutes later.
The group that my OB/GYN works for has a policy of once you've had a caesarean, always caesarean. I still did not know I had a choice. AnnMarie and Gregory arrived via planned caesarean. The time between delivery and in my arms was longest with Gregory. I spent quite a bit of time in the OR after Gregory was born. Larry took him to the nursery for his bath and all that stuff. I didn't find out why until after Gregory and I were settled into our room together. Gregory's placenta had adhered to my uterine wall. My doc had to scrape it out. One might say that I was lucky to have had Gregory via caesarean. Had he arrived vaginally, the placenta could have torn from the wall and I would have bled. A lot. Then again, if my uterine wall hadn't been cut into twice already, maybe the placenta would not have adhered?
There is nothing I can do to change it. What's done is done. I've found some peace in my experiences. Sometimes though, it hurts. Deeply. I even feel robbed. Something was taken from me that I cannot replace. Even if I wanted another child, I can't now. The whole placenta thing messed with that. I would not have another child, now. Larry and I knew that when we had Gregory. I had my tubes tied with Gregory. The decision was already made and I am quite satisfied with the number of children we have. I still yearn to do it again. To do it "right". Every once in a while it crosses my mind that I have never given birth. What does that mean to me? Still trying to figure that one out. I do feel less of a mother. This is not the point in my writting where everyone clamours to tell me how much of a mother I am. I know this is not true. Doesn't mean I don't feel it, sometimes.
The things that bring me comfort is hearing my friends share their birth stories. I try to remember to ask my girlfriends for their birth stories on the day of their children's births. I do NOT watch birth shows on TV. Cannot do it. The Business of Being Born had me in tears of sorrow and tears of elation. Watching those brave, educated, empowered women deliver their babies. Babies born at home, babies born in birthing centers. Babies born the way nature intended for them to arrive. Yes, intervention is sometimes necessary. Not nearly to the degree that it is given, though. I am also encouraged that generations to come will KNOW they have a choice. Will have the information and tools available to choose how they want to labor and deliver.
Yes. Childhood Cancer is so scary that I was able to face my birthing fears. Not 100%. A little bit. It's a great movie, if you haven't seen it, watch it. Also, if you feel like it, tell me your birth story. 'til later, gotta jet.
I couldn't find an official video. The is Jane Siberry ~ Calling All Angels. It is hauntingly beautiful.
Thursday, November 5, 2009
More is on the way....
I have been importing my posts from Gregory's LiveJournal. I used LiveJournal for the 18 months before discovering that it just was not a good place for me to write. If you are looking for the missing posts, they can be found here: http://thegreginator.livejournal.com/
They will all be here, soon.
Thank you!
They will all be here, soon.
Thank you!
Wednesday, August 12, 2009
Central Line Infection!!!!!!!!!!!!!!!!!!
I could sit here and tell you how everything is going good, nothing to worry about, it's all to be expected, another part of "the experience".........
Which would not be false. It wouldn't be the whole story. My perceptions are so not normal. I've watched Gregory go through the sickest sick you could ever imagine. I need to ctrl-alt-delete my "is my kid sick" meter. He is alot sicker than I gave him credit for. I really thought that Monday we would come in for some IV Fluids and go back home. So not the case. He's pretty darn sick.
This morning's counts: Hematocrit ~ 33, Platelets ~ 56, ANC ~ 1275, Weight ~ 13.9
His cultures that were taken yesterday at 4:00pm still showed positive for Enterococcus. Which is the E in VRE. Vancomycin-Resistant Enterococcus. It did not mean that he has VRE, it just freaked me out. The sensitivities came back tonight and he DOES NOT have VRE. Whew! Dodged a bullet on that one. I should probably state the obvious. Gregory has a line infection. *crap* Which means the infection came from his central line. Basically a dirty access. The infection entered through a not clean enough access of his central line. Which, quite frankly, can happen at anytime. I've already run the gauntlet of blaming myself. While I have been accessing his line daily (except for when we are in the hospital), since the first of March. Except I've been hooking IV fluids up since Sunday the 2nd of August. It's an automatic default for me to question if the infection came from ME not being clean enough in my accessing him. *shrug* There really is no way to know where it came from. It just means that I am going to be hypervigilant, from this point forward.
They did a Vanco level (where they draw a blood sample to determine if his dose of Vanco is at a theraputic level.) It was LOW. They tripled the dose and I am hoping that this increased dose will clear the infection. If the infection does not clear soon, don't know what the exact time line on this is, then we start to discuss removing his Central Line. The bacteria can get stuck to the walls of his central line, which means we cannot get rid of it. I really, really, really, really, really hope this does not happen. It would mean placement of another line and he already has had two sperate lines placed. With the second placement not being a very smooth surgery. I am also afraid that they won't place another line and go with a PIC line. *shudder* He is too young to have to deal with a PIC line and/or repeated needle sticks. Thanks, but no thanks. We will deal with this when we get there, but I am trying to prepare myself to advocate for a new line placement.
Today was rough. Gregory had his first headache. So bad that he was clutching his head, saying "ow" and crying. It would come in waves. He would be OK for a few minutes and then have an attack of pain. He is also having escating gut pain. His Bk Virus is also flaring. His temp is great, though. Another thing to note, his blood pressures have been low. Not too low, just significanltly lower than his normal. Same with his heartrate. His heart rate is usually around 120-130 and it has been around 85-90. He has also been really clammy to the touch. The antibiotics are really doing a number on the bacteria and they are releasing all kinds of toxins in his system and he is stuggling to keep up. We gave him a dose of Oxycodone at 3:00 and he has been asleep ever since. With occasional verbal outbursters in his sleep. I'm hoping that he snoozes until morning. He really needs to get a solid nights sleep.
Not that I did not know he was fragile, but this has been a real wake up call in terms of how fragile he really is. How careful we REALLY need to be. There is absolutely no room to screw this up. My heart is telling me to lock him up in a plastic bubble for the next year and completely shut us off from the outside world. In reality it is not possible, except I am going to try my damnedest to make it happen. This new reality that we are living in is so isolating. Isolating from the world of "my kid doesn't have cancer". 'Cause you really can't understand or get it, until you live it. I used to be the type of person who would see garbage, stuff in general, on the floor/ground and happily put it in the garbage or put it away. I don't touch walls, railings, counter tops, door handles, pretty much anything without the thought of "where's the nearest sink and/or anti-bacterial gel". I don't buy any food anymore that is not individually wrapped. For Gregory or myself. If I hear someone cough/sneeze I visibly flinch and search for the location. It's a weird, weird world.
In fact, they tested his immunoglobulin G (IgG) levels and they are low. Low enough that they will be giving him IV IgG. I'm not well versed in what this is or how it is administered. More on that later.
Well, it's about time for midnight vitals and I need to comfort Gregory through them. I have a bunch more "stuff" floating around that I would like to get down. Maybe tomorrow. I will see how it all goes. 'til later, gotta jet.
Which would not be false. It wouldn't be the whole story. My perceptions are so not normal. I've watched Gregory go through the sickest sick you could ever imagine. I need to ctrl-alt-delete my "is my kid sick" meter. He is alot sicker than I gave him credit for. I really thought that Monday we would come in for some IV Fluids and go back home. So not the case. He's pretty darn sick.
This morning's counts: Hematocrit ~ 33, Platelets ~ 56, ANC ~ 1275, Weight ~ 13.9
His cultures that were taken yesterday at 4:00pm still showed positive for Enterococcus. Which is the E in VRE. Vancomycin-Resistant Enterococcus. It did not mean that he has VRE, it just freaked me out. The sensitivities came back tonight and he DOES NOT have VRE. Whew! Dodged a bullet on that one. I should probably state the obvious. Gregory has a line infection. *crap* Which means the infection came from his central line. Basically a dirty access. The infection entered through a not clean enough access of his central line. Which, quite frankly, can happen at anytime. I've already run the gauntlet of blaming myself. While I have been accessing his line daily (except for when we are in the hospital), since the first of March. Except I've been hooking IV fluids up since Sunday the 2nd of August. It's an automatic default for me to question if the infection came from ME not being clean enough in my accessing him. *shrug* There really is no way to know where it came from. It just means that I am going to be hypervigilant, from this point forward.
They did a Vanco level (where they draw a blood sample to determine if his dose of Vanco is at a theraputic level.) It was LOW. They tripled the dose and I am hoping that this increased dose will clear the infection. If the infection does not clear soon, don't know what the exact time line on this is, then we start to discuss removing his Central Line. The bacteria can get stuck to the walls of his central line, which means we cannot get rid of it. I really, really, really, really, really hope this does not happen. It would mean placement of another line and he already has had two sperate lines placed. With the second placement not being a very smooth surgery. I am also afraid that they won't place another line and go with a PIC line. *shudder* He is too young to have to deal with a PIC line and/or repeated needle sticks. Thanks, but no thanks. We will deal with this when we get there, but I am trying to prepare myself to advocate for a new line placement.
Today was rough. Gregory had his first headache. So bad that he was clutching his head, saying "ow" and crying. It would come in waves. He would be OK for a few minutes and then have an attack of pain. He is also having escating gut pain. His Bk Virus is also flaring. His temp is great, though. Another thing to note, his blood pressures have been low. Not too low, just significanltly lower than his normal. Same with his heartrate. His heart rate is usually around 120-130 and it has been around 85-90. He has also been really clammy to the touch. The antibiotics are really doing a number on the bacteria and they are releasing all kinds of toxins in his system and he is stuggling to keep up. We gave him a dose of Oxycodone at 3:00 and he has been asleep ever since. With occasional verbal outbursters in his sleep. I'm hoping that he snoozes until morning. He really needs to get a solid nights sleep.
Not that I did not know he was fragile, but this has been a real wake up call in terms of how fragile he really is. How careful we REALLY need to be. There is absolutely no room to screw this up. My heart is telling me to lock him up in a plastic bubble for the next year and completely shut us off from the outside world. In reality it is not possible, except I am going to try my damnedest to make it happen. This new reality that we are living in is so isolating. Isolating from the world of "my kid doesn't have cancer". 'Cause you really can't understand or get it, until you live it. I used to be the type of person who would see garbage, stuff in general, on the floor/ground and happily put it in the garbage or put it away. I don't touch walls, railings, counter tops, door handles, pretty much anything without the thought of "where's the nearest sink and/or anti-bacterial gel". I don't buy any food anymore that is not individually wrapped. For Gregory or myself. If I hear someone cough/sneeze I visibly flinch and search for the location. It's a weird, weird world.
In fact, they tested his immunoglobulin G (IgG) levels and they are low. Low enough that they will be giving him IV IgG. I'm not well versed in what this is or how it is administered. More on that later.
Well, it's about time for midnight vitals and I need to comfort Gregory through them. I have a bunch more "stuff" floating around that I would like to get down. Maybe tomorrow. I will see how it all goes. 'til later, gotta jet.
Tuesday, August 11, 2009
Gram-Positive, Gram-Negative, Ceftaz, Gent, Vanco................
The world of Childhood Cancer, Chemo,CBC's W/Diff, ANC's, Bone Marrow Transplants: Wait five minutes and it will look completely different.
We have been admitted, as of last night, for at least a two week stay. Why? I'll get there. Let's recount the last few days.
It's been very busy, the last several days. Today is Tuesday, mom got here last Wednesday. Thursday clinic. Dad got here on Friday, fixed my car. Picked my brother Travis up Friday evening. Visit from an awesome family of five (*waves madly to the Meany's*). All weekend he was cranky, obstinate, just not right. His BK Virus has been bothering him, painful urination. I would give him a little Oxycodone and his temperament would totally change for the better. The extra activity and people around also affected him. In hindsight, it really was too much. Can't regret it or change it. Just remember that he really needs peace and quiet.
Monday he popped a temp of 100.00 at 6:00am. I called the on-call number at SCCA, Seattle Children's, spoke with the PA Natalie. She recommended that we take his temp again in 15 minutes and if it was continuing to climb, we would be coming in. Since we had clinic that morning, it was a little easier to be hesitant. His temp did drop a little and we proceeded with our morning and headed out to clinic at 7:30am. Well. We climb into my car and it is dead. Again.* No time to worry about the cause, at that moment. We load up in mom's car and head out. Gregory was due for his weekly "I'm on Prednisone, so I get weekly blood cultures." Labs were drawn and we headed upstairs to wait for our 10:00am appointment. Gregory did nothing but lay in my lap, on the floor, and sleep. Oh yeah. Remember his counts had platued and were starting to decline? Yesterday morning's ANC was 2790. Weight? 14K. His Platelets took a hit: 89. His Hematocrit was down, too. 27. Good news on that front. We got through the appointment and headed home. Gregory was punky, tired and just out of it all afternoon. He started to feel warm, early evening and popped a temp of 100.3. Requisite phone call was made and we headed into SCCA at Seattle Children's for what we hoped would be fluids and then home. When we got here he was at 38.9C (102F). Which is an automatic 48 hour stay. As with all admits, it got crazy. Plenty of labs, repeat cultures. This time from both lumens. Antibiotics were started, tylenol. His blood pressure was really low and he was started on a BIG fluid bolus. The idea is that he is dehydrated from being feverish, which causes low blood pressure. Also, as it turns out, his non-functioning white cells were madly trying to fight off a nasty bacterial infection. His blood pressure continued to be low. Managing low blood pressure is a delicate dance. There are very specific guide lines and protocol. The antibiotics also contribute to low blood pressure. One of the antibiotics, Gentamicin, is for combating Gram-Negative bacteria. This bacteria, when treated, releases toxins into the blood stream, contributing to lowering the blood pressure. Careful monitoring of his blood pressure, during adminstration of the drug, is crucial. His hematocrit was low, too. Another contibutor to low pressure. He was allowed three fluid bolus and a red cell transfusion. If his pressure was not able to recover, it was straight to the ICU. Not because he was dangerously low, simply because they are better equipped to manage low pressure and have the tools available to get aggressive. Gregory received his three bolus' and his red cells and as of NOW, his pressure is stable and holding. Before his blood arrived, it was confirmed that he does have a Gram-Positive Bacteria, which in my limitied understanding, Staph is a memeber of this family. The positive culture came from his cultures taken at SCCA that moring. Having a result that quick tells me that he has a pretty hefty amount of it, too. Therefore he was started on Vancomycin, which is for Gram-Positive Bacteria. Which means at least a two week hospital stay. They also started a round of Ceftaz. Another antibiotic. Keeping up? So. Aside from his daily, routing Dapsone, he is now on three additional antibiotics. Vanco, Gent and Ceftaz.
He is pretty sick. Spiking fevers and sleeping. We are keeping him well hydrated, especially with the BK virus still active and his blood pressure. We of course, are not in a BMT room. There are not that many and the need is great. At last check, Seattle Children's has 30% of the hospital occupied by SCCA patients. That means 30% of the hospitals patients are Hematology/Oncology patients. Since Gregory is a BMT patient, we will not get shuffled off to another floor. We will always remain on this floor and will always have a private room. (yeah, Spokanites!! They have rooms here that hold up to five patients! Crazy!!!!) There is a pretty spectaular bright spot, though. Our room is awesomeness. Since Gregory has not been using the bathroom, he is exclusively using his diapers, I can use the bathroom in his room. Also? WE HAVE A SHOWER!!!!!!!!! Sweetness! The layout of this room is pretty nice, too. Not near as many windows, but it's a pretty decent room.
When I brought Gregory over last night, Travis tagged along. He received a crash course. I think his head was spinning a bit. I'm glad that he got to experience it, though. It helps to take some of the mystery out of it all. Yet, I can imagine it also added a little confusion, too.
For the record:
Monday evening counts: Hematocrit ~ 28, Platelets ~ 79, ANC ~ 3496
Tuesday AM Counts: Hematocrit ~ 24, Platelets ~ 55, ANC ~ 1275
We rounded a little bit ago and I received some further news. We have to stay 10-14 days BEYOND a NEGATIVE blood culture. Ugh! Really? So. I have no idea how long we will be here.
We are settling in and in a strange way, re-connecting. We need to find our groove, again. Even though it sucks to be in-patient, it's also kinda nice to not be "on". I still keep an eagle eye on stuff, but it's not all on me.
Gregory would like to use the laptop now. It's time for me to close. Until later, gotta jet.
*ETA: Late last week I plugged in the portable DVD player into the cigarette lighter in the car. The power was left on, on the unit. Shouldn't be a big deal, right? Well, the AAA guy showed up to tow it to the dealer and he went to jump it, in order to move it into a better position for hooking up to his rig. He used to work for a car stereo installation place. He is the one who figured out that there was a device draining the power. That being said, it shouldn't be happening. There is an issue with grounding. No big deal, though. I will just need to remember to unplug every auxillary item, before walking away from the car. It's fixed for now. That is what matters. Well, not really. Gregory is what matters, the rest is just stuff......
We have been admitted, as of last night, for at least a two week stay. Why? I'll get there. Let's recount the last few days.
It's been very busy, the last several days. Today is Tuesday, mom got here last Wednesday. Thursday clinic. Dad got here on Friday, fixed my car. Picked my brother Travis up Friday evening. Visit from an awesome family of five (*waves madly to the Meany's*). All weekend he was cranky, obstinate, just not right. His BK Virus has been bothering him, painful urination. I would give him a little Oxycodone and his temperament would totally change for the better. The extra activity and people around also affected him. In hindsight, it really was too much. Can't regret it or change it. Just remember that he really needs peace and quiet.
Monday he popped a temp of 100.00 at 6:00am. I called the on-call number at SCCA, Seattle Children's, spoke with the PA Natalie. She recommended that we take his temp again in 15 minutes and if it was continuing to climb, we would be coming in. Since we had clinic that morning, it was a little easier to be hesitant. His temp did drop a little and we proceeded with our morning and headed out to clinic at 7:30am. Well. We climb into my car and it is dead. Again.* No time to worry about the cause, at that moment. We load up in mom's car and head out. Gregory was due for his weekly "I'm on Prednisone, so I get weekly blood cultures." Labs were drawn and we headed upstairs to wait for our 10:00am appointment. Gregory did nothing but lay in my lap, on the floor, and sleep. Oh yeah. Remember his counts had platued and were starting to decline? Yesterday morning's ANC was 2790. Weight? 14K. His Platelets took a hit: 89. His Hematocrit was down, too. 27. Good news on that front. We got through the appointment and headed home. Gregory was punky, tired and just out of it all afternoon. He started to feel warm, early evening and popped a temp of 100.3. Requisite phone call was made and we headed into SCCA at Seattle Children's for what we hoped would be fluids and then home. When we got here he was at 38.9C (102F). Which is an automatic 48 hour stay. As with all admits, it got crazy. Plenty of labs, repeat cultures. This time from both lumens. Antibiotics were started, tylenol. His blood pressure was really low and he was started on a BIG fluid bolus. The idea is that he is dehydrated from being feverish, which causes low blood pressure. Also, as it turns out, his non-functioning white cells were madly trying to fight off a nasty bacterial infection. His blood pressure continued to be low. Managing low blood pressure is a delicate dance. There are very specific guide lines and protocol. The antibiotics also contribute to low blood pressure. One of the antibiotics, Gentamicin, is for combating Gram-Negative bacteria. This bacteria, when treated, releases toxins into the blood stream, contributing to lowering the blood pressure. Careful monitoring of his blood pressure, during adminstration of the drug, is crucial. His hematocrit was low, too. Another contibutor to low pressure. He was allowed three fluid bolus and a red cell transfusion. If his pressure was not able to recover, it was straight to the ICU. Not because he was dangerously low, simply because they are better equipped to manage low pressure and have the tools available to get aggressive. Gregory received his three bolus' and his red cells and as of NOW, his pressure is stable and holding. Before his blood arrived, it was confirmed that he does have a Gram-Positive Bacteria, which in my limitied understanding, Staph is a memeber of this family. The positive culture came from his cultures taken at SCCA that moring. Having a result that quick tells me that he has a pretty hefty amount of it, too. Therefore he was started on Vancomycin, which is for Gram-Positive Bacteria. Which means at least a two week hospital stay. They also started a round of Ceftaz. Another antibiotic. Keeping up? So. Aside from his daily, routing Dapsone, he is now on three additional antibiotics. Vanco, Gent and Ceftaz.
He is pretty sick. Spiking fevers and sleeping. We are keeping him well hydrated, especially with the BK virus still active and his blood pressure. We of course, are not in a BMT room. There are not that many and the need is great. At last check, Seattle Children's has 30% of the hospital occupied by SCCA patients. That means 30% of the hospitals patients are Hematology/Oncology patients. Since Gregory is a BMT patient, we will not get shuffled off to another floor. We will always remain on this floor and will always have a private room. (yeah, Spokanites!! They have rooms here that hold up to five patients! Crazy!!!!) There is a pretty spectaular bright spot, though. Our room is awesomeness. Since Gregory has not been using the bathroom, he is exclusively using his diapers, I can use the bathroom in his room. Also? WE HAVE A SHOWER!!!!!!!!! Sweetness! The layout of this room is pretty nice, too. Not near as many windows, but it's a pretty decent room.
When I brought Gregory over last night, Travis tagged along. He received a crash course. I think his head was spinning a bit. I'm glad that he got to experience it, though. It helps to take some of the mystery out of it all. Yet, I can imagine it also added a little confusion, too.
For the record:
Monday evening counts: Hematocrit ~ 28, Platelets ~ 79, ANC ~ 3496
Tuesday AM Counts: Hematocrit ~ 24, Platelets ~ 55, ANC ~ 1275
We rounded a little bit ago and I received some further news. We have to stay 10-14 days BEYOND a NEGATIVE blood culture. Ugh! Really? So. I have no idea how long we will be here.
We are settling in and in a strange way, re-connecting. We need to find our groove, again. Even though it sucks to be in-patient, it's also kinda nice to not be "on". I still keep an eagle eye on stuff, but it's not all on me.
Gregory would like to use the laptop now. It's time for me to close. Until later, gotta jet.
*ETA: Late last week I plugged in the portable DVD player into the cigarette lighter in the car. The power was left on, on the unit. Shouldn't be a big deal, right? Well, the AAA guy showed up to tow it to the dealer and he went to jump it, in order to move it into a better position for hooking up to his rig. He used to work for a car stereo installation place. He is the one who figured out that there was a device draining the power. That being said, it shouldn't be happening. There is an issue with grounding. No big deal, though. I will just need to remember to unplug every auxillary item, before walking away from the car. It's fixed for now. That is what matters. Well, not really. Gregory is what matters, the rest is just stuff......
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