Day +83
WBC 8.9
The jiggling is over. Max is off the oscillator vent and back to a traditional one. This is significant progress. In the last three days or so they were able to wean him down to a very safe setting for transferring back. We are so proud of Max. What a little champ. As our nurse said, you never lose hope, you just change what you hope for. This is certainly the first time we've ever been so happy about being on a vent.
All of the other issues are progressing in a similar fashion, very slowly. His skin is looking slightly better, he is making a little urine, his weight is a little down, etc. Yesterday they said he has 48 hours to make some significant progress getting the extra fluid off and if he does not they will probably move towards dialysis, something that is much more possible while off the oscillator. In regard to his seizure problem that was tabled, hopefully neurology will do another EEG test to see if he is still having seizures. This test had been on hold because the oscillator made it impossible to put wires on Max's head and keep them still.
He had another echo of his heart today, but we don't have the results yet. They turned off his heart medication yesterday and they want to see if he is tolerating that move. You may recall he was given the medication after his lungs bled the second time. They did an echo at the time and the left side of his heart was collapsing on itself. There has been no evidence that is still happening so the med was discontinued. We will see what the doctors have to say.
The Infectious Disease people came by and talked to us about something called an AFB, acid fast bacillis, which is something that grew in a culture from Max's bronchoscopy on Oct. 23. Basically, it's not the scariest or worst thing that could grow from your lungs, but it does need to be treated. Since the exact name of what grew won't be known for weeks, treatment needs to be made on a "best guess" basis. Three medications were recommended, all of which have side effects that are bad for Max. But when just about every part of your body has issues, this is bound to happen.
Amidst all of the hullabaloo of the past couple of weeks, there have been two events worth mentioning: The Gorham High School soccer team had a successful fundraiser on our behalf. As some of you remember, I played more than a few years of left bench for that team so that really means a lot. Thank you Coach Goodrich and the whole team. Meanwhile, down in Peru (Illinois, that is), my sister Dana's littlest brother-in-law Joshua had a Pudding Sale at Peru Catholic, grades K to 8, and the proceeds went to Max.
All of the hardship Max is enduring continues to bring out the very best in people. Thank you so much to all the pudding salesmen, soccer players, and fellow fundraisers for helping us and, in doing so, for helping others learn about this amazing process.
Today has been a good day,
--mike
The jiggling is over. Max is off the oscillator vent and back to a traditional one. This is significant progress. In the last three days or so they were able to wean him down to a very safe setting for transferring back. We are so proud of Max. What a little champ. As our nurse said, you never lose hope, you just change what you hope for. This is certainly the first time we've ever been so happy about being on a vent.
All of the other issues are progressing in a similar fashion, very slowly. His skin is looking slightly better, he is making a little urine, his weight is a little down, etc. Yesterday they said he has 48 hours to make some significant progress getting the extra fluid off and if he does not they will probably move towards dialysis, something that is much more possible while off the oscillator. In regard to his seizure problem that was tabled, hopefully neurology will do another EEG test to see if he is still having seizures. This test had been on hold because the oscillator made it impossible to put wires on Max's head and keep them still.
He had another echo of his heart today, but we don't have the results yet. They turned off his heart medication yesterday and they want to see if he is tolerating that move. You may recall he was given the medication after his lungs bled the second time. They did an echo at the time and the left side of his heart was collapsing on itself. There has been no evidence that is still happening so the med was discontinued. We will see what the doctors have to say.
The Infectious Disease people came by and talked to us about something called an AFB, acid fast bacillis, which is something that grew in a culture from Max's bronchoscopy on Oct. 23. Basically, it's not the scariest or worst thing that could grow from your lungs, but it does need to be treated. Since the exact name of what grew won't be known for weeks, treatment needs to be made on a "best guess" basis. Three medications were recommended, all of which have side effects that are bad for Max. But when just about every part of your body has issues, this is bound to happen.
Amidst all of the hullabaloo of the past couple of weeks, there have been two events worth mentioning: The Gorham High School soccer team had a successful fundraiser on our behalf. As some of you remember, I played more than a few years of left bench for that team so that really means a lot. Thank you Coach Goodrich and the whole team. Meanwhile, down in Peru (Illinois, that is), my sister Dana's littlest brother-in-law Joshua had a Pudding Sale at Peru Catholic, grades K to 8, and the proceeds went to Max.
All of the hardship Max is enduring continues to bring out the very best in people. Thank you so much to all the pudding salesmen, soccer players, and fellow fundraisers for helping us and, in doing so, for helping others learn about this amazing process.
Today has been a good day,
--mike
posted by Mike Ciacciarelli
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