Well, Maddy has not gotten any better in the week since her bronchoscopy. I think she is even having more trouble breathing. The doctors called in Thursday last week and said its an infection not rejection. They were expecting her to improve over the weekend. Needless to say she didn't. She spent a miserable weekend at home just feeling crappy! She called yesterday and the docs said to come in this morning to get PFT's and see how things look. They said pack a bag just in case. So here we are. She is done with blood work and PFT's. Now waiting to see the doctor.
11:05 AM
Unhappily waiting for a CT scan. They are admitting Maddy and while we wait for a bed to be available they are going to throw her at every test they can think to do. So here is the deal so far...
They are kind of backtracking on the news that this is not a rejection episode. While the biopsies didn't show acute rejection there are signs of antibodies in her lungs and blood work. They said that normally they would just keep an eye in it but with the accompaniment of her dramatic drop in lung functions and the fact that the mega doses of steroids they gave her last week was ineffective they need to treat the antibodies aggressively. Basically the antibodies in her blood are another form of rejection and they are attacking her lungs.
So the treatment for this is plasmapheresis! Yep, just like she got following her transplant. See this entry and this entry for information on the last time this was done to her. She is not looking forward to going through this again. They will be putting a main line in to the the pheresis. It will be done under light sedation and they basically put that crazy line coming out of her neck again. I'm pretty sure there are pictures of this kind of line in the above links.
Ugh! So we are back at it again! The doctor also mentioned seeing signs of infection so they will also be treating her with antibiotics. I am hopeful that this visit will go by quickly but I hate to even say that out loud. I will be continuing to work while Maddy is in. I will go in and do the morning show every day and then take the rest of the day off to come hang out with Maddy. I will update this page again later today when she is settled into her room so check back here for updates on the treatment plan.
1:15 PM
In the room! Waiting to get her main line put in. They tried to get an IV in her but all her veins are still blown from last week. So they ordered a pic line instead. The doctor placing the main line was scheduled to place the pic as well and just came in to check on Maddy. He said looking at her vein history he didn't think they would have much luck placing a pic line so he wants to do a tunnel Hickman catheter instead. It will be a lot like the main line they are going to use for the pheresis. He is hoping they can place both lines on the same side. If not she will have a line coming out both sides of her neck,
They expect to be able to get the line placed later this afternoon. The nefrologist PA came by for the initial pheresis consult. Dr. Floreth has ordered five rounds of pheresis. They expect to be able to do the first round tonight which puts the last one on Saturday night. Not sure what that means for a possible release date but we are expecting to be here at least a week if Maddy does not run into any complications.
Everybody we have spoken to today has referred to this as a rejection episode so I guess we are in for her first rejection since transplant. They told her when she left the hospital after transplant that she owed them one rejection and one infection. I guess two years is a good record!
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