Day +89
WBC 2.1
Max has been pretty stable. Yesterday he had some less than perfect blood gases, but last night they were able to turn the rate down on the vent just a tad and he tolerated it. There was some cause for worry last night when they suctioned him and the secretions were pink. This would happen every once in a while during previous times on the vent. Back then it was due to irritation from the breathing tube itself, but this time he is vented for a lung bleed so it gave me a scare to see it. The rest of his vitals and his x-ray have been fine and no bright red blood has come up so it looks like it is irritation this time too, but they will be watching closely. They are also sending cultures in case it is caused by an infection.
They increased his TPN (IV nutrition) yesterday with the hopes that he could tolerate it, but with the increase in fluid from the TPN and all of his new antibiotics it was just too much fluid. He didn't lose any weight yesterday and since he still needs to get rid of all the fluid that accumulated when he was on the oscillator his TPN was reduced today.
His white blood cell count is down again, this time to 2.1. This has been happening for over a week and the doctors seem much less worried than us about this.
The EEG that was supposed to happen yesterday was rescheduled for today and Dr. Charnas read the EEG as containing NO SEIZURES. What this means overall, we still don't know. The medicines he is on have stopped the seizures. So that's good. They shouldn't hinder his ability to get off the vent as his body has adjusted to them by now. But he will be on these medicines for a while, and this issue will still be more on a back burner.
Just to give everyone an idea of the amount of medication Max is receiving I thought I would make a list. It is staggering to say the least:
ANTIBIOTICS
------------------
Bactrim
Ceftoxin
Amikacin
Synercid
GVH MEDS
----------------
TMC cream
HCT cream
MMF
CSA
Methylprednisolone
Actigall (for liver)
BLOOD PRESSURE
----------------------------
Minoxidil (Rogaine)
Nifedipine
LUNGS
-----------
Flovent (for wheezing)
Albuterol (for wheezing)
Viagra (for hypertension)
Milronone (for hypertension and heart)
DIURETICS (help him to urinate)
----------------
Metolazone
Bumex
Spironolactone
Aminophylline
TUMMY
-----------
Protonix (ant-acid)
Carafate
ANTI-FUNGAL
--------------------
Nystatin
Abelcet
PAIN AND SEDATION
-------------------------------
Versed
Dilaudid
Propofol
SKIN
-------
Silvadine (for breakdown and sores)
SEIZURE
-------------
Phenytoin
Phenobarbital
PRE-MEDS TO PREVENT DRUG REACTIONS
----------------------------------------------------------------
Tylenol
Benadryl
I think I got all of them and I hope I put them all in the right categories. This is probably way more info then anyone needs, but it helps to put things in perspective. Max has made great progress recently but he still has a long way to go with many serious issues still hanging around. But two weeks ago today we thought we only had a few more hours with him, and now he is still here. We are tremendously proud of him and grateful for his presence.
-Margaret
Max has been pretty stable. Yesterday he had some less than perfect blood gases, but last night they were able to turn the rate down on the vent just a tad and he tolerated it. There was some cause for worry last night when they suctioned him and the secretions were pink. This would happen every once in a while during previous times on the vent. Back then it was due to irritation from the breathing tube itself, but this time he is vented for a lung bleed so it gave me a scare to see it. The rest of his vitals and his x-ray have been fine and no bright red blood has come up so it looks like it is irritation this time too, but they will be watching closely. They are also sending cultures in case it is caused by an infection.
They increased his TPN (IV nutrition) yesterday with the hopes that he could tolerate it, but with the increase in fluid from the TPN and all of his new antibiotics it was just too much fluid. He didn't lose any weight yesterday and since he still needs to get rid of all the fluid that accumulated when he was on the oscillator his TPN was reduced today.
His white blood cell count is down again, this time to 2.1. This has been happening for over a week and the doctors seem much less worried than us about this.
The EEG that was supposed to happen yesterday was rescheduled for today and Dr. Charnas read the EEG as containing NO SEIZURES. What this means overall, we still don't know. The medicines he is on have stopped the seizures. So that's good. They shouldn't hinder his ability to get off the vent as his body has adjusted to them by now. But he will be on these medicines for a while, and this issue will still be more on a back burner.
Just to give everyone an idea of the amount of medication Max is receiving I thought I would make a list. It is staggering to say the least:
ANTIBIOTICS
------------------
Bactrim
Ceftoxin
Amikacin
Synercid
GVH MEDS
----------------
TMC cream
HCT cream
MMF
CSA
Methylprednisolone
Actigall (for liver)
BLOOD PRESSURE
----------------------------
Minoxidil (Rogaine)
Nifedipine
LUNGS
-----------
Flovent (for wheezing)
Albuterol (for wheezing)
Viagra (for hypertension)
Milronone (for hypertension and heart)
DIURETICS (help him to urinate)
----------------
Metolazone
Bumex
Spironolactone
Aminophylline
TUMMY
-----------
Protonix (ant-acid)
Carafate
ANTI-FUNGAL
--------------------
Nystatin
Abelcet
PAIN AND SEDATION
-------------------------------
Versed
Dilaudid
Propofol
SKIN
-------
Silvadine (for breakdown and sores)
SEIZURE
-------------
Phenytoin
Phenobarbital
PRE-MEDS TO PREVENT DRUG REACTIONS
----------------------------------------------------------------
Tylenol
Benadryl
I think I got all of them and I hope I put them all in the right categories. This is probably way more info then anyone needs, but it helps to put things in perspective. Max has made great progress recently but he still has a long way to go with many serious issues still hanging around. But two weeks ago today we thought we only had a few more hours with him, and now he is still here. We are tremendously proud of him and grateful for his presence.
-Margaret
posted by Mike Ciacciarelli
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