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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