Day +21
WBC 0.4
Mike and I went to bed last night feeling okay with Max being on the vent. We know he needs the help and that he is resting now, and hopefully more able to fight his infection. However, we couldn't help but feel sad when we woke up this morning to the reality of Max's situation.
Max had no dirty diapers last night so the endoscopy was cancelled today. The thought of GVHD is still on the doctors' minds, but it is not a primary concern right now. The lung culture grew a bacteria commonly found in the mouth and Max is being treated for that. This bacteria is probably not the cause of everything. As I write this his oxygen level is at 40% and the vent is taking 18 breaths per minute for him. These numbers have been adjusted up and down a few times today. When Max shows improvement they are lowered. A few times tonight he sounded wheezy and his O2 had to be increased and he received his asthma medication.
Max is heavily sedated but they told us he can still hear and feel us. I wasn't convinced until I turned on his Baby Van Gogh movie and he opened his eyes ever so slightly. He also moved his hand away from mine and rubbed his eyes and nose a few times. The nurse just gave him some more sedation because he appeared to be getting a little annoyed.
His blood pressure has been stable all day and his kidneys are being watched closely. He received a fluid flush for his kidneys, but then he began to retain fluid and he puffed up a bit so they just gave him some lasix.
Dr. Grewal, Max's primary doctor, stopped by today to check on Max. If you recall, the BMT doctors rotate between the BMT unit, BMT clinic and research lab. Dr. Grewal had not seen Max for a while, but has been getting reports on him. He was sorry about Max's current situation, but is hopeful he can overcome this. He seemed a bit concerned about Max's graft, and really hopes his WBC starts to rise again.
Thank you SO MUCH for all of your prayers and support. It really, truly, lifts us up.
-Margaret
Mike and I went to bed last night feeling okay with Max being on the vent. We know he needs the help and that he is resting now, and hopefully more able to fight his infection. However, we couldn't help but feel sad when we woke up this morning to the reality of Max's situation.
Max had no dirty diapers last night so the endoscopy was cancelled today. The thought of GVHD is still on the doctors' minds, but it is not a primary concern right now. The lung culture grew a bacteria commonly found in the mouth and Max is being treated for that. This bacteria is probably not the cause of everything. As I write this his oxygen level is at 40% and the vent is taking 18 breaths per minute for him. These numbers have been adjusted up and down a few times today. When Max shows improvement they are lowered. A few times tonight he sounded wheezy and his O2 had to be increased and he received his asthma medication.
Max is heavily sedated but they told us he can still hear and feel us. I wasn't convinced until I turned on his Baby Van Gogh movie and he opened his eyes ever so slightly. He also moved his hand away from mine and rubbed his eyes and nose a few times. The nurse just gave him some more sedation because he appeared to be getting a little annoyed.
His blood pressure has been stable all day and his kidneys are being watched closely. He received a fluid flush for his kidneys, but then he began to retain fluid and he puffed up a bit so they just gave him some lasix.
Dr. Grewal, Max's primary doctor, stopped by today to check on Max. If you recall, the BMT doctors rotate between the BMT unit, BMT clinic and research lab. Dr. Grewal had not seen Max for a while, but has been getting reports on him. He was sorry about Max's current situation, but is hopeful he can overcome this. He seemed a bit concerned about Max's graft, and really hopes his WBC starts to rise again.
Thank you SO MUCH for all of your prayers and support. It really, truly, lifts us up.
-Margaret
posted by Mike Ciacciarelli
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