Update

ravens_grl

Alex had a PICC line placed today. He had 7 IVs in 24 hours so he needed stable access before the weekend.he went down at 8am and was given some happy juice around 8:30. The nurse took him back in the OR at that point. I was told it ould take 45 mins so when 2 hours rolled around I was reall freaking. The finally brought him back only to tell me had NINE TIMES the normal amount of sedation. He woke up 3 times mid-procedure, once so much that the drs lost the first inserted PICC because he threw his arm up in the air. They had to re-thread the line. The sedation nurse said to expect him to take 2 hours to wake up. IT TOOK HIM 4 HOURS. He desated the whole time he was put back on O2. He woke up and was still very much drugged but said maamaa for the first time when he turned to me. We kept him awake long enough to transport him back to his room where he went back to sleep for 5 hours. He woke up for 45 mins but was very out of it and anxious. He went back to sleep and is still sleeping. DH was going to come up for V-Day but is very sick so he will not be making the drive this weekend. This was not our day! The upsides have been that because of Alex's immune system he is now only one of 3 patients on the floor who was not given a roomate. Here at CHOP our floor (GI) is all private rooms but are the size of a normal double room. There are 24 beds on the unit but there are 36 patients and the ER is full of people waiting. Finally, something good comes of it all. I also won a prize from

https://www.leeloublogs.blogspot.com/

in the virtual baby shower.

 

They have received the biopsy slides from his most recent endoscopy and colonoscopy for their pathologist to read. They are putting him on full strength formula ad-lib because they need to collect the "proper" stool for the malabsorbtion studies. Yesterday, he stooled 49 times with a total measurable volume of 2 liters!! Thats is so much and that doesnt count the 1/2 to 1 liter that was sent in stoll samples.

TriciaJoy

wow.. that's a rough day..

on the waking up front- Robbie took 3 DAYS to wake up from surgery. I was freaking out, but they were all just saying he's a "slow metabolizer'.

I hope everything comes out okay and s back to bormal soon.  

mcdev

Wow. ?You certainly are being put to the test, aren't you? ?I really truly hope that CHOP is your answer and that your adorable little Alex continues to be so strong. ?I got goosebumps when you said he said "Mama" for the first time. ?What a sweetheart. ?

mhop

I'm sorry you and Alex are going through so much.  I hope they can figure out soon what's going on.  ((hugs))

pmkmp

Rough day indeed.  My heart breaks for the lil' guy.  I certainly hope you get answers soon.  We'll be keeping you in our thoughts.