Day +53
WBC 8.3
I wish we had more answers for everyone today but we do not. Mighty Max is such a Mystery Max that no one is exactly sure what is going on with his breathing situation. He has been wheezing so badly the past few days despite all of the medication they gave him, but he stopped wheezing once he was vented. It was pretty amazing. This behavior may be indicative of an upper airway problem, so ENT will be consulted. I thought ENT was contacted yesterday but they were not. They should have been contacted today but I haven't heard anything yet. The hard thing is that the ENT cannot really evaluate his airway with the breathing tube in it so most likely it will not happen until Max is ready to be extubated. If someone had thought of upper airway obstruction yesterday maybe this could have been done before he was intubated. Now we have to wait until he is ready to get off the vent, check him, and then who knows what.
Last night he got his albuterol, BD's and suctioning and sounded clear afterwards. Then the RT gave him his Pulmicort neb and Max started wheezing pretty bad. They had to give him more albuterol and increase his O2 significantly because his sats dropped. He had been weaned down to 55% O2 prior to this incident but has needed quite a bit of O2 through the night and today. I wish Pulmicort was the easy answer to all of this but he has been on it since last November or December with no problems. It may have been an issue of particle size when blown into the vent with the neb. The last 2 times he was vented he received Flovent puffs not a Pulmicort neb.
The Pulminologist has been throwing around the term Chronic Lung Disease of Prematurity the past few days. Max was never diagnosed with this in the NICU, so it is new to us. The BMT docs told me today that it is on the same spectrum as reactive airway disease (asthma). There was talk of doing a bronchoscopy today too but that did not happen.
Max's sats and blood gases have actually been worse since he was vented. They are not too worried about the gases, for reasons still not totally clear to me so I will not try to explain them here. As for the sats, who knows. As you might imagine, Mike and I are pretty frustrated. We do not want to end up in a horrible pattern of vent, wheeze, vent again. We really want some answers, or at least a better formulated plan for dealing with this. The nurses have been juggling his sedation today as he has been waking up quite a bit. This wouldn't be so bad if he was breathing more in sync with the vent when he took spontaneous breaths.
In other news, Max is retaining some fluid today and his weight is up and he is puffy. The lasix is not working as well as it usually does with Max so they gave him a medicine called Albumen to help draw fluid out of the of tissue and into the blood stream where the kidneys can see it and get rid of it. He has not stooled since yesterday morning, which is great but not necessarily a sign that the GVH is better. Being on a vent slows things down too (it did the last time) so we are not sure what is going on. His steroids will be reduced tomorrow and the GI doc will be consulted to see if she would like to scope him again.
This turned out to be a much longer update than I intended so I apologize. We are so depressed and frustrated right now. I feel sick when I look at him like this again. He was just starting to come back to us and now we are right where we were one month ago.
My mom went home on Saturday when Mike's mom arrived. Mike's dad arrives this weekend. RMH house has asked if Grace could be in a RMH video and we said yes. She is a regular RMH star these days. Tony the Tigre arrived on 4A today so wish him luck as he starts chemo tomorrow.
Thanks for your prayers,
Margaret
I wish we had more answers for everyone today but we do not. Mighty Max is such a Mystery Max that no one is exactly sure what is going on with his breathing situation. He has been wheezing so badly the past few days despite all of the medication they gave him, but he stopped wheezing once he was vented. It was pretty amazing. This behavior may be indicative of an upper airway problem, so ENT will be consulted. I thought ENT was contacted yesterday but they were not. They should have been contacted today but I haven't heard anything yet. The hard thing is that the ENT cannot really evaluate his airway with the breathing tube in it so most likely it will not happen until Max is ready to be extubated. If someone had thought of upper airway obstruction yesterday maybe this could have been done before he was intubated. Now we have to wait until he is ready to get off the vent, check him, and then who knows what.
Last night he got his albuterol, BD's and suctioning and sounded clear afterwards. Then the RT gave him his Pulmicort neb and Max started wheezing pretty bad. They had to give him more albuterol and increase his O2 significantly because his sats dropped. He had been weaned down to 55% O2 prior to this incident but has needed quite a bit of O2 through the night and today. I wish Pulmicort was the easy answer to all of this but he has been on it since last November or December with no problems. It may have been an issue of particle size when blown into the vent with the neb. The last 2 times he was vented he received Flovent puffs not a Pulmicort neb.
The Pulminologist has been throwing around the term Chronic Lung Disease of Prematurity the past few days. Max was never diagnosed with this in the NICU, so it is new to us. The BMT docs told me today that it is on the same spectrum as reactive airway disease (asthma). There was talk of doing a bronchoscopy today too but that did not happen.
Max's sats and blood gases have actually been worse since he was vented. They are not too worried about the gases, for reasons still not totally clear to me so I will not try to explain them here. As for the sats, who knows. As you might imagine, Mike and I are pretty frustrated. We do not want to end up in a horrible pattern of vent, wheeze, vent again. We really want some answers, or at least a better formulated plan for dealing with this. The nurses have been juggling his sedation today as he has been waking up quite a bit. This wouldn't be so bad if he was breathing more in sync with the vent when he took spontaneous breaths.
In other news, Max is retaining some fluid today and his weight is up and he is puffy. The lasix is not working as well as it usually does with Max so they gave him a medicine called Albumen to help draw fluid out of the of tissue and into the blood stream where the kidneys can see it and get rid of it. He has not stooled since yesterday morning, which is great but not necessarily a sign that the GVH is better. Being on a vent slows things down too (it did the last time) so we are not sure what is going on. His steroids will be reduced tomorrow and the GI doc will be consulted to see if she would like to scope him again.
This turned out to be a much longer update than I intended so I apologize. We are so depressed and frustrated right now. I feel sick when I look at him like this again. He was just starting to come back to us and now we are right where we were one month ago.
My mom went home on Saturday when Mike's mom arrived. Mike's dad arrives this weekend. RMH house has asked if Grace could be in a RMH video and we said yes. She is a regular RMH star these days. Tony the Tigre arrived on 4A today so wish him luck as he starts chemo tomorrow.
Thanks for your prayers,
Margaret
posted by Mike Ciacciarelli
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