Day +44
WBC 5.9
Max had a pretty stable day. Only a few dips in his sats when he was uncomfortable. The first half of my shift (I arrived at noon to relieve Mike) was spent trying to comfort Max. It could have been his gut bothering him, or he just could have been thirsty. He is so desperate for liquid it just breaks my heart. Too much fluid can irritate his gut and worsen his diaper situation. He tried 1 oz of Pedialyte and loved it and then was angry that his pacifier wasn't dispensing anything. We then tried dripping small amounts into his mouth with a syringe. At around 5 PM he finally began to settle in and has slept pretty well ever since (it is 1AM Sunday now).
Max's lungs sounded pretty clear today. At times he is "junky", but he just gave some great coughs all on his own. His treatments are every 4 hours now, which is easier for Max, and easier for me too. It is really hard to watch him go through the trauma of suctioning every 2 hours. We know it is a very necessary evil to keep him off the vent.
As far as the GVHD, we don't know what to think anymore. We had two diapers in the past 24 hours that had no visible blood in them. I was so happy when I saw one tonight I almost did a diaper dance. But then the nurse and I just went over his numbers for the day and he has stooled more and more frequently than he has in a number of days. We are wondering if the increase in oral fluid has anything to do with it.
We are on our first night without a one to one nurse and I don't think I am going to be able to sleep much (not that I sleep much anyway when I am here). It is scary but nice to know he has made enough progress to get to this point. The other day we were very against the nursing change, but today we feel okay. The nurses are paired with one other "light" patient and still spend most of their time in here. Today was the last day for the BMT fellow who has been so nice to us. We are so grateful for the care she has given Max and we are so sorry to see her go.
There are several children up here who are not doing well. It seems every time I walk past the family lounge someone is in there crying. Three patients have died on 4A in our 54 days here. Two children (non-transplant) that we know of from RMH have passed away as well. One can only imagine the suffering behind the 14 doors on this floor. Please pray for all of these families. Please also pray for Anthony, a one year old Hurler child who will be admitted next week for transplant.
-Margaret
Max had a pretty stable day. Only a few dips in his sats when he was uncomfortable. The first half of my shift (I arrived at noon to relieve Mike) was spent trying to comfort Max. It could have been his gut bothering him, or he just could have been thirsty. He is so desperate for liquid it just breaks my heart. Too much fluid can irritate his gut and worsen his diaper situation. He tried 1 oz of Pedialyte and loved it and then was angry that his pacifier wasn't dispensing anything. We then tried dripping small amounts into his mouth with a syringe. At around 5 PM he finally began to settle in and has slept pretty well ever since (it is 1AM Sunday now).
Max's lungs sounded pretty clear today. At times he is "junky", but he just gave some great coughs all on his own. His treatments are every 4 hours now, which is easier for Max, and easier for me too. It is really hard to watch him go through the trauma of suctioning every 2 hours. We know it is a very necessary evil to keep him off the vent.
As far as the GVHD, we don't know what to think anymore. We had two diapers in the past 24 hours that had no visible blood in them. I was so happy when I saw one tonight I almost did a diaper dance. But then the nurse and I just went over his numbers for the day and he has stooled more and more frequently than he has in a number of days. We are wondering if the increase in oral fluid has anything to do with it.
We are on our first night without a one to one nurse and I don't think I am going to be able to sleep much (not that I sleep much anyway when I am here). It is scary but nice to know he has made enough progress to get to this point. The other day we were very against the nursing change, but today we feel okay. The nurses are paired with one other "light" patient and still spend most of their time in here. Today was the last day for the BMT fellow who has been so nice to us. We are so grateful for the care she has given Max and we are so sorry to see her go.
There are several children up here who are not doing well. It seems every time I walk past the family lounge someone is in there crying. Three patients have died on 4A in our 54 days here. Two children (non-transplant) that we know of from RMH have passed away as well. One can only imagine the suffering behind the 14 doors on this floor. Please pray for all of these families. Please also pray for Anthony, a one year old Hurler child who will be admitted next week for transplant.
-Margaret
posted by Mike Ciacciarelli
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