Day +40
Tuesday Evening Special Update!!!
Max was extubated at about 5:15 this evening. 45 minutes into breathing on his own, he is doing well. He is on a nasal canula at 3 L of O2 and his sats are in the mid to high 90s. His lungs sound a but junky, so we need him to cough some stuff up now that he will not be getting suctioned like he was on the vent. Please pray Max has the strength to stay off the vent and that his sensitive lungs don't start wheezing again!
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WBC 2.9
The results of Max's biopsy showed that he still has active GVH in his gut. He has even more blood in his stool. The afternoon he stooled about 120cc of straight blood. I cannot describe how I felt when I saw this happening to him. While it is not completely unheard of, it is somewhat strange that his skin and liver responded to the ATG but his gut did not. They doubled the amount of steroids he is getting to try and treat it. The steroids come with their own set of problems, one of which is irritation to the gut so they also increased his antacid. The increased steroids also make him more susceptible to infection.
On a much more positive note, he is currently in the middle of a pressure support trial to see if he is really ready to get off the vent. He is doing excellent. Now that they know what is going on in his gut he does not need a CT scan and could come off the vent this afternoon or tomorrow. It depends on how well he does on the trail and the availability of the ICU attending. He wants to be present when the tube is removed. Max has been much more alert the past couple of days and it is so nice to see his eyes. We want our son to come back to us so badly. We are both excited and very scared at the removal of the vent. We hope and pray this time it is for good and that he can remain comfortable gut-wise.
In other news, our neighbor and friend Jodi Heiss has been working hard at fund raising. She is a Creative Memories Consultant and she hosted a CM party at my sister's house a few weeks ago. We recently received a card from Jodi with the proceeds for the event and we were so overwhelmed by the generosity of friends, family and strangers! Jodi is also planning another event which will involve a raffle. Web Mistress Chris will be posting more info on this soon. My sister Beth is hosting a Pampered Chef party at her house on Thursday as well. We cannot thank everyone enough.
I will send another mini update tonight if Max comes off the vent. Please send some hot prayers our way.
Love,
Margaret
Max was extubated at about 5:15 this evening. 45 minutes into breathing on his own, he is doing well. He is on a nasal canula at 3 L of O2 and his sats are in the mid to high 90s. His lungs sound a but junky, so we need him to cough some stuff up now that he will not be getting suctioned like he was on the vent. Please pray Max has the strength to stay off the vent and that his sensitive lungs don't start wheezing again!
__________________________________________________________________________
WBC 2.9
The results of Max's biopsy showed that he still has active GVH in his gut. He has even more blood in his stool. The afternoon he stooled about 120cc of straight blood. I cannot describe how I felt when I saw this happening to him. While it is not completely unheard of, it is somewhat strange that his skin and liver responded to the ATG but his gut did not. They doubled the amount of steroids he is getting to try and treat it. The steroids come with their own set of problems, one of which is irritation to the gut so they also increased his antacid. The increased steroids also make him more susceptible to infection.
On a much more positive note, he is currently in the middle of a pressure support trial to see if he is really ready to get off the vent. He is doing excellent. Now that they know what is going on in his gut he does not need a CT scan and could come off the vent this afternoon or tomorrow. It depends on how well he does on the trail and the availability of the ICU attending. He wants to be present when the tube is removed. Max has been much more alert the past couple of days and it is so nice to see his eyes. We want our son to come back to us so badly. We are both excited and very scared at the removal of the vent. We hope and pray this time it is for good and that he can remain comfortable gut-wise.
In other news, our neighbor and friend Jodi Heiss has been working hard at fund raising. She is a Creative Memories Consultant and she hosted a CM party at my sister's house a few weeks ago. We recently received a card from Jodi with the proceeds for the event and we were so overwhelmed by the generosity of friends, family and strangers! Jodi is also planning another event which will involve a raffle. Web Mistress Chris will be posting more info on this soon. My sister Beth is hosting a Pampered Chef party at her house on Thursday as well. We cannot thank everyone enough.
I will send another mini update tonight if Max comes off the vent. Please send some hot prayers our way.
Love,
Margaret
posted by Mike Ciacciarelli
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