Day +99
WBC 8.9
It's 2:30am on Friday night and I'm finally going to lay down from a long hard day & night. Max put another big scare into us today, he began to require more oxygen and the resident told us, "if he keeps going like this, I don't know what else we can do." But after dialysis ended, and things calmed down in the room, Max began to improve a lot. He was also given Factor 7 which helps clot blood in case he had another bleed. Either that or just great nursing or both was the reason for the improvement.
I just spent the last two hours working on stopping some of the bleeding on Max's eyelids and scalp. When they returned from surgery last week Max's eyelids had little cuts on them and were bleeding. Since then he's had huge scabs on and over his eyes. Also, after all the EEG wires were removed from Max's head a few days ago, some more bloody spots were created. So as if he hasn't suffered enough, now he looks totally beaten up and tonight I worked with "topical thrombin" to try to cover the wounds and clot them up. It seems to be helping.
Maybe at this time I will try to describe Max's appearance: In addition to all the bloody marks on his eyes and head, his face is still squished up into fish lips from the ventilator. Consequently his lips are dry and chapped. His head is covered in a nice layer of fuzzy fur and his lip and chin have what could best be described as a moustache and goatee. He lays mostly on his back, because that position keeps his saturations and blood pressure at the best levels. He has skinny arms and legs from dialysis, and though he is less puffy overall, he does still have a big belly, and it is distended from not stooling. His body is still covered in gvhd skin; spotty, splotchy, dark spots, etc. It doesn't appear to be getting worse or better. He has a central line for meds coming out of one side of his chest, a dialysis catheter coming out the other side, an "arterial line" for blood draws coming out of his left forearm, and a foley catheter coming out of his you-know-what for urine. His legs are rashy and seem to just hang limp below his body. It's rare that his legs move at all. They haven't been used in months. Max is incredibly weak from not using his limbs or supporting his weight in any way. He also gets a paralytic to keep him from moving since he also breathes more willingly with the ventilator.
This is all to describe his appearance, but the best way to imagine it is to say this is no way to live.
Today I saw Anthony (Tony the Tiger) and his dad visiting the unit. They were discharged last week and it's amazing that on Day +36 they are already having reunions. He looked awesome and was being a very good boy. Also I read on their website that Bella was leaving the Ronald McDonald House and heading back to Iowa with her parents. She also has been doing great, and went home tonight on Day + 119. These are two amazing stories and I mention them in the hopes that some of Max's supporters can check out their websites and send them some warm wishes. It's not hard to root for these kids, they are little champions and we wish them the best. It is hard to look at their success and wonder why not us? No, more accurately, it's downright discouraging. But every kid is different and must go down a different road. Max's has been uphill the whole way. We never expected things to be easy, but we wish for Max's sake he could have had at least a little bit of good luck. We wish these families the best and wish upon them the feelings of pride and success that reaching these goals warrants, and the appreciation for these achievements that can get lost in the logistics of caring for special children.
I guess I'm just sensitive to this kind of news because technically, at this hour, it's Day + 100 for Max and that should mean it's about time to go home. But for Max it will be just another day (of so very many) in intensive care. He's been working so hard to survive and to fight on and I am so proud to be his father. When his oxygen needs went up I was near tears. But when they went down, I felt like dancing. Is he any less likely to die because he helped his saturations? No, but he was less likely to die today, which in turn means he's one day further down the road to recovery. And for that I am thankful. We are so very frightened of the potential outcome of death for our son. And if we take one step back, we are so very disappointed in this process, that someone working so hard can find no relief. But we are happy to sit with him again, for another day, and we know that there is a glimmer of hope of many more days so we will cling to that. As Dr. Grewal, our original primary transplant doctor told us, "You never know who the next miracle baby will be." We do know. It is Max, our miracle of strength and determination, our miracle of patience and resilience. He is our joy.
Good night,
Mike
It's 2:30am on Friday night and I'm finally going to lay down from a long hard day & night. Max put another big scare into us today, he began to require more oxygen and the resident told us, "if he keeps going like this, I don't know what else we can do." But after dialysis ended, and things calmed down in the room, Max began to improve a lot. He was also given Factor 7 which helps clot blood in case he had another bleed. Either that or just great nursing or both was the reason for the improvement.
I just spent the last two hours working on stopping some of the bleeding on Max's eyelids and scalp. When they returned from surgery last week Max's eyelids had little cuts on them and were bleeding. Since then he's had huge scabs on and over his eyes. Also, after all the EEG wires were removed from Max's head a few days ago, some more bloody spots were created. So as if he hasn't suffered enough, now he looks totally beaten up and tonight I worked with "topical thrombin" to try to cover the wounds and clot them up. It seems to be helping.
Maybe at this time I will try to describe Max's appearance: In addition to all the bloody marks on his eyes and head, his face is still squished up into fish lips from the ventilator. Consequently his lips are dry and chapped. His head is covered in a nice layer of fuzzy fur and his lip and chin have what could best be described as a moustache and goatee. He lays mostly on his back, because that position keeps his saturations and blood pressure at the best levels. He has skinny arms and legs from dialysis, and though he is less puffy overall, he does still have a big belly, and it is distended from not stooling. His body is still covered in gvhd skin; spotty, splotchy, dark spots, etc. It doesn't appear to be getting worse or better. He has a central line for meds coming out of one side of his chest, a dialysis catheter coming out the other side, an "arterial line" for blood draws coming out of his left forearm, and a foley catheter coming out of his you-know-what for urine. His legs are rashy and seem to just hang limp below his body. It's rare that his legs move at all. They haven't been used in months. Max is incredibly weak from not using his limbs or supporting his weight in any way. He also gets a paralytic to keep him from moving since he also breathes more willingly with the ventilator.
This is all to describe his appearance, but the best way to imagine it is to say this is no way to live.
Today I saw Anthony (Tony the Tiger) and his dad visiting the unit. They were discharged last week and it's amazing that on Day +36 they are already having reunions. He looked awesome and was being a very good boy. Also I read on their website that Bella was leaving the Ronald McDonald House and heading back to Iowa with her parents. She also has been doing great, and went home tonight on Day + 119. These are two amazing stories and I mention them in the hopes that some of Max's supporters can check out their websites and send them some warm wishes. It's not hard to root for these kids, they are little champions and we wish them the best. It is hard to look at their success and wonder why not us? No, more accurately, it's downright discouraging. But every kid is different and must go down a different road. Max's has been uphill the whole way. We never expected things to be easy, but we wish for Max's sake he could have had at least a little bit of good luck. We wish these families the best and wish upon them the feelings of pride and success that reaching these goals warrants, and the appreciation for these achievements that can get lost in the logistics of caring for special children.
I guess I'm just sensitive to this kind of news because technically, at this hour, it's Day + 100 for Max and that should mean it's about time to go home. But for Max it will be just another day (of so very many) in intensive care. He's been working so hard to survive and to fight on and I am so proud to be his father. When his oxygen needs went up I was near tears. But when they went down, I felt like dancing. Is he any less likely to die because he helped his saturations? No, but he was less likely to die today, which in turn means he's one day further down the road to recovery. And for that I am thankful. We are so very frightened of the potential outcome of death for our son. And if we take one step back, we are so very disappointed in this process, that someone working so hard can find no relief. But we are happy to sit with him again, for another day, and we know that there is a glimmer of hope of many more days so we will cling to that. As Dr. Grewal, our original primary transplant doctor told us, "You never know who the next miracle baby will be." We do know. It is Max, our miracle of strength and determination, our miracle of patience and resilience. He is our joy.
Good night,
Mike
posted by Mike Ciacciarelli
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