Day +20
WBC 0.3
Evening update
Max has been intubated and a ventilator is breathing for him. It's not an easy sight to see your son so sedated and breathing with the help of a machine. But it is for the best. The lead pulminologist and the ICU doctor both recommended getting a bronchoscopy of Max's lungs based on how he had been breathing and how his X-rays looked. As the bronchoscopy started they saw a fair amount of mucus and blood and it was clear that a full intubation (as opposed to a more benign LMA) would be necessary. The pulminologist does not feel that there is a bleed in the lung, he feels that what he is seeing is the effect of an infection. The good news is that this whole thing was done during daylight hours electively with the very best people involved and it was performed successfully.
We feel our son is more at peace now than in the last few days. While he is more sedated, and therefore even less of himself, he is not struggling to breathe and he is not as uncomfortable. Hopefully this time on the vent will be a bridge to help him cross these rough waters. He'll stay in this mode until some progress is seen in his sepsis and he begins to show more of an ability to breath on his own without difficulty.
Now a quick note about his kidneys since I just watched them insert a Foley catheter into his you-know-what (ouch!). The next drugs on the list for Max's mystery infection are very strong and can cause kidney damage. Dialysis is being talked about if necessary to help Max if these drugs are necessary. In addition, tomorrow he will get an endoscopy (camera up the rear) to try and get a good sample to test for gastrointestinal graft vs. host disease. Hopefully that turns up negative and some of the ongoing cultures begin to help the doctors learn more about what they are fighting.
Now for some quick thank yous:
1. To all people praying for us: Thank you so much. You may feel like it's the least you can do, but with all of you together, it's the most help we're receiving. Your good wishes, prayers, and notes to our guestbook are our lifeline these days.
2. To Grannie (Margaret's mom): Thank you for coming at the drop of a hat at this difficult time. You were able to take care of Grace when Margaret called me at 2am last night. Thanks to you we were able to be by our son's side together and Grace was in the very best of care as well.
3. To all the other Hurler families: Your support and your personal experiences of overcoming similar dark days is incredibly encouraging. Thank you so much.
4. To the doctors and nurses at the hospital (especially all the "one-to-one" nurses): Thank you for your diligence and your willingness to include us in every step of the way. We know we are getting the very best care and everyone is trying so hard to help our son.
Finally, to all of the people reading this who have children of their own - especially the first-time parents - please hug your kids. Please enjoy their youth. Please celebrate their innocence (even when they're guilty).
All the best,
mike
_______________________________________
Late Night/Early Morning Update
Max has run into trouble once again. He spiked a temp late Wed. night and sounded wheezy at his 12 am breathing treatment. I noticed that his heart and respiratory rates were up, and the nurse told me it was because of the fever. His blood pressure was much higher as well (a surprisingly fast change from yesterday if you ask me), and the nurse turned his dopamine off. He also developed a bumpy rash on his arms, possibly from the red blood cells he received.
I remarked to the nurse a few times that he was breathing hard. She suctioned his nose and throat to try to get him to cough and clear the "junk" sitting on his chest. She said if he still sounded the same she'd call RT (respiratory therapy) for an early breathing treatment. I kept watching his chest as he worked harder and harder to breath. The charge nurse came in and I told her, she said it looked like he was working too hard. The nurse called RT, who came right away. She heard fluid on his lungs, ordered a chest x- ray and called the ICU. She suctioned Max too but could not get him to cough enough, so she ordered a bi-pap machine to help him breathe.
The x-ray showed fluid on the lungs and a partially collapsed lobe. Max received many many fluids throughout the day, and no one ordered lasix for him to help him void the fluid. He got overloaded and it all went to his lungs. Right now he is sedated so he does not fight the machine. It is not a vent, but it does force air into the lungs and pushes the fluid out. He is also getting his breathing treatments every hour and vibrations on the collapsed lobe.
We are extremely nervous and scared. Both the attending doctor and resident changed over this week. While we know they are extremely capable, it makes us nervous to be in this situation with new staff. In addition, there was no ICU fellow or attending present at the hospital tonight. The BMT resident consulted with the ICU attending over the phone and they formulated the treatment plan.
It is heart breaking to see him hooked up to this machine. The doctor thinks he will be better by mid-day and we hope he is correct. He told us the lasix was not given because his pressure was down (lasix lowers blood pressure). However, he was getting the lasix prior to today precisely so he did not run into this problem. We are very upset this happened.
Mike and I are here together. I called him at 2 AM when the RT came to the room. We were feeling so encouraged by the progress Max made during the day only to have this happen a few hours later.
Please pray the fluid away from his lungs, and the infection out of his system!
Evening update
Max has been intubated and a ventilator is breathing for him. It's not an easy sight to see your son so sedated and breathing with the help of a machine. But it is for the best. The lead pulminologist and the ICU doctor both recommended getting a bronchoscopy of Max's lungs based on how he had been breathing and how his X-rays looked. As the bronchoscopy started they saw a fair amount of mucus and blood and it was clear that a full intubation (as opposed to a more benign LMA) would be necessary. The pulminologist does not feel that there is a bleed in the lung, he feels that what he is seeing is the effect of an infection. The good news is that this whole thing was done during daylight hours electively with the very best people involved and it was performed successfully.
We feel our son is more at peace now than in the last few days. While he is more sedated, and therefore even less of himself, he is not struggling to breathe and he is not as uncomfortable. Hopefully this time on the vent will be a bridge to help him cross these rough waters. He'll stay in this mode until some progress is seen in his sepsis and he begins to show more of an ability to breath on his own without difficulty.
Now a quick note about his kidneys since I just watched them insert a Foley catheter into his you-know-what (ouch!). The next drugs on the list for Max's mystery infection are very strong and can cause kidney damage. Dialysis is being talked about if necessary to help Max if these drugs are necessary. In addition, tomorrow he will get an endoscopy (camera up the rear) to try and get a good sample to test for gastrointestinal graft vs. host disease. Hopefully that turns up negative and some of the ongoing cultures begin to help the doctors learn more about what they are fighting.
Now for some quick thank yous:
1. To all people praying for us: Thank you so much. You may feel like it's the least you can do, but with all of you together, it's the most help we're receiving. Your good wishes, prayers, and notes to our guestbook are our lifeline these days.
2. To Grannie (Margaret's mom): Thank you for coming at the drop of a hat at this difficult time. You were able to take care of Grace when Margaret called me at 2am last night. Thanks to you we were able to be by our son's side together and Grace was in the very best of care as well.
3. To all the other Hurler families: Your support and your personal experiences of overcoming similar dark days is incredibly encouraging. Thank you so much.
4. To the doctors and nurses at the hospital (especially all the "one-to-one" nurses): Thank you for your diligence and your willingness to include us in every step of the way. We know we are getting the very best care and everyone is trying so hard to help our son.
Finally, to all of the people reading this who have children of their own - especially the first-time parents - please hug your kids. Please enjoy their youth. Please celebrate their innocence (even when they're guilty).
All the best,
mike
_______________________________________
Late Night/Early Morning Update
Max has run into trouble once again. He spiked a temp late Wed. night and sounded wheezy at his 12 am breathing treatment. I noticed that his heart and respiratory rates were up, and the nurse told me it was because of the fever. His blood pressure was much higher as well (a surprisingly fast change from yesterday if you ask me), and the nurse turned his dopamine off. He also developed a bumpy rash on his arms, possibly from the red blood cells he received.
I remarked to the nurse a few times that he was breathing hard. She suctioned his nose and throat to try to get him to cough and clear the "junk" sitting on his chest. She said if he still sounded the same she'd call RT (respiratory therapy) for an early breathing treatment. I kept watching his chest as he worked harder and harder to breath. The charge nurse came in and I told her, she said it looked like he was working too hard. The nurse called RT, who came right away. She heard fluid on his lungs, ordered a chest x- ray and called the ICU. She suctioned Max too but could not get him to cough enough, so she ordered a bi-pap machine to help him breathe.
The x-ray showed fluid on the lungs and a partially collapsed lobe. Max received many many fluids throughout the day, and no one ordered lasix for him to help him void the fluid. He got overloaded and it all went to his lungs. Right now he is sedated so he does not fight the machine. It is not a vent, but it does force air into the lungs and pushes the fluid out. He is also getting his breathing treatments every hour and vibrations on the collapsed lobe.
We are extremely nervous and scared. Both the attending doctor and resident changed over this week. While we know they are extremely capable, it makes us nervous to be in this situation with new staff. In addition, there was no ICU fellow or attending present at the hospital tonight. The BMT resident consulted with the ICU attending over the phone and they formulated the treatment plan.
It is heart breaking to see him hooked up to this machine. The doctor thinks he will be better by mid-day and we hope he is correct. He told us the lasix was not given because his pressure was down (lasix lowers blood pressure). However, he was getting the lasix prior to today precisely so he did not run into this problem. We are very upset this happened.
Mike and I are here together. I called him at 2 AM when the RT came to the room. We were feeling so encouraged by the progress Max made during the day only to have this happen a few hours later.
Please pray the fluid away from his lungs, and the infection out of his system!
posted by Mike Ciacciarelli
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