Yesterday stunk! Maddy spent the day working hard, sitting up in the chair, marching in place and doing breathing exercises and airway clearance. I spent the day at work while Melissa hung out with Maddy. The updates she sent me through the day were pretty good. They were worried toward the afternoon because Maddy couldn't keep her O2 sats up. At first they thought Maddy was just working too hard so they wanted her to rest. By late afternoon they decided she needed some help breathing. They hooked her up to the BiPAP again but that didn't help. By the time I got home a little after 4pm Melissa called saying the doctor was there and kicked her out. I headed right down.
Shortly after I got here the doctor called me and said they were going to have to do some tests to find out what was going on. They wanted to look in her lungs and get an esophageal cardiogram to make sure the problem was not some kind of backup in the blood vessels they repaired or the connections they made to the new lungs. I asked if they were going to need to go back in and he said he was not sure, he wanted a better diagnosis of what's going on first.
So the waiting began again. Over three hours later I called to see if I could get an update and the nurse said the doctors had just left. Both Dr. Haddad and Dr. Rolf had been working on her THE WHOLE TIME. They each thought the other one had gone out to talk to us before they left. Oops, the nurse filled us in and then Dr. Haddad chatted with me by phone soon after.
The esophageal cardiogram came out clear. All the vessels were fine and blood was flowing the right direction. Her heart was fine and all the repairs and new connects were good. So she got a clear bill of health from the Cardiologist. The bronchoscopy showed blood in her lungs again and her alveoli inflamed. After "stepping back" and looking at everything they believe her lungs were having an allergic reaction to one of the anti rejection meds, Cell Cept. They discontinued the Cell Cept and started a drip of a steroid called Solu-Medrol which would repair the inflammation in her alveoli and help clear the Cell Cept out of her system. They had taken a chest X-ray mid afternoon and she looked really "wet", they repeated the X-ray after all that work and putting her back on the vent and it looked great. They also spent a lot of time placing new lines in Maddy. They had removed the arterial line in her neck earlier in the day when they thought she was getting better. It was also 7 days old by then and was in pretty bad shape. They had accessed her port but that is not a robust enough line for everything they need to do while she is on the vent. They also tried to replace the arterial line they took out of her wrist. She has had lines placed in both wrists so far. They were not able to get a line successfully put in her artery at either wrist so they had to go into the femoral artery at her groin on her right leg. Apparently they had a hard time placing that line so Maddy was in quite a bit of pain in her leg when she woke up. Poor kid!
Of course there is no test we can do to definitively say the allergy reaction is for sure what's causing her alveoli to become inflamed and bleed. There have been other cases like this so that helps point them in the right direction but the only way to tell is to dicontinue the Cell Cept, let her rest and her body repair the damage, and try again. This time the resting period will be a little longer. They are slowly weaning her off the vent throughout the day today. They did not need Nitric this time, so that is an improvement already. They tough part this time is they want her to keep the tube in for a couple days after she is off the vent. They don't want to keep ex-tubating and intubating her over and over again. If they keep the tube in they can address the problem immediately if it occurs again. Right now she is back on sedation while she rests and repairs but as soon as she is weaned off the vent she will have to be awake and breathe through the tube without sedation.
So we are back to square one. She will be intubated until Saturday or Sunday. Melissa, Natalie and I are taking turns sitting in the room with her as often as they will let us in. Natalie stayed all night last night, I went home about 2:30am and came back this morning after rush hour traffic. Melissa is on her way now and we will take turns being in the room with her. The way her recovery has progressed so far that is probably going to be our protocol until she leaves. Once she is up and breathing through the tube without sedation I will see if I can get her phone to her so she can communicate with us more easily. I will have to put her under strict orders not to contact people outside the room, she will still need to rest!
Finally, by popular demand I have allowed comments on the blog. I will try to check them and let Maddy know everyones well wishes when she wakes up. Don’t forget to fill in all the fields when leaving your comment. If you don’t put your name we won’t know who left the comment. I promise I am not fishing for your personal information. This is my personal website bought and paid for by me so there is no free service that fishes thorough all my comment entries to spam you and generate revenue for this blog. (No google ad’s either. Hey, maybe I should do google ad’s and try to make a buck! LOL)
On the switch over from the old blog host to the new one I have copied the comments and published them below.
"Aunt" Toni
God Bless,
Kevin (Tom & Florence's nephew)
& let her know that I love her with all my heart and that I'm so, so proud of her for being so strong. Oh, and if her fishy hasn't died.. lol I'm it's second mom so I will take care of it if theres any one at Madds house to let me in to get it [=
I'm so greatful tht these updates are here, I check every day for new ones. Sometimes more than once a day.
No comments:
Post a Comment