Update

Quinn went in Friday morning for her Roux En Y jejunostomy. The surgery went as expected and she came out of anesthesia just fine. The problem was finding the right concoction of meds to keep her comfortable. I'm unsure what meds they had her on in the beginning, but it was a lot and she was still in a lot of pain and after a few hours we finally found lots of morphine and lots of tordorol (could be spelled wrong) was right enough to help her out. In this time, Quinn started spasming. At first it was juts one full body spasm every few minutes and at first we thought it was just her reaction to how much pain she was in, but it kept happening and then she had a really bad and violent attack of the spasms that lasted for a good two minutes. We yelled for nurses and the nurse came and helped us and then Q started turning gray! OMG! it was so scary, scary, scary. Luckily, the gray only lasted for like 20-30 seconds and then she stabalized and we were told that she was having seizures. Her J drain then started pouring out black stuff, she was in a ton of pain and i noticed that she wasn't on a g drain. So I told the nurses to put her on a g drain (which by the way is still not ferral bags, becaue apparently this hospital doesn't believe in ferral bags...) So we have been wrapping her g drain in diapers. The draining of the g seemed to relieve some of her pain. She continued to have the seizures into the evening and she was started on more morphine and atavan to try and control them. She was so drugged up on so many medications. It was a very, very rough day for her. She also hadn't peed for a long time and they were just about to cath her when she finally peed. She then developed a fever... of only 99.8ish.

So, during all this pain for her, she starts  getting retractions (difficulty breathing) and her lung sounds are clear, but low lung volumes. so she's getting a breathing treatment and we get word that the doctor wants to push her nighttime meds through her G. Me, thinking doc should know (shame on me) decided to just do it and she starts writhing in pain. While nurse is trying to page the doctor, she is still in tons of pain, i took it upon myself to open her g and let it drain, obviously, she drained her meds. Well, the doc got pissed and told the nurse that I shouldn't be interfering with her seizure meds, especially because she's having seizures. So i told the nurse to page that doctor so i could have a few words with him, and we did have a few words. (Cheryl, a fellow mito mom was here during all this and she was such a great support and helped me) He turned out to be an idiot... lol! I told him that i wanted her on IV meds and he said it can't be done without a neuro consult and yadda yadda yadda... he thinks that since she has had her g in for a while, she should automatically be able to tolerate that small amount. Well, that small amount is not hte problem, you dumb doctor! The problem is that she is draining so much gastric juices that when you put the meds in, and then want to clamp the g for 30 minutes, pressure and gastric juices are building up inside, causing her pain. DUH! Besides, she got the j tube for a reason! So anyway, we figure that we can at least get Keppra in IV form so we at least KNOW she is getting SOME of her seizure meds and we are just gonna push Trileptal and Zonogran through the g... at very slow intervals. I can tell you, I am pretty certain by now that she is NOT absorbing her meds through the g, but whatever they think she is but i'm almost positive it's just sitting in there and getting drained becaus i'm watching it happen.

So she's on ALL these meds to try and keep her pain to a minimum and all these medications should have knocked her out. By hour 13 post-op, Q was still awake, doped up on meds and very obviously exhausted. She started hallucinating. She first started crying really bad and being really scared about monsters in her room! it was difficult to console her. Then I decided to try and rest up and all of a sudden she starts screaming... seemingly in agonizing pain. I grabbed the nurse thinking something was really wrong with her stomach and we are trying to figure out why she is screaming and her legs are all in the air stiff and she is so scared and said that the spiders were biting her! Yeah, by this time it was obvious to me and the nurse that she was hallucinating. Probably from the medications. She finally fell asleep, 15 hours after coming out of surgery. Only to sleep for about 3-4 hours before being up again for another 16 hours.

So, Saturday, seemed a little better. She was peeing regularly though she just wants to so badly go to the restroom ,and not have to pee in a diaper, it's impossible right now. just the slightest movement sends her screaming in agonizing pain. All day, she was finally comfortable for the most part however anytime we had to readjust her for any reason, she was in agony. So her J drain has still been draining this black stuff, which the doc says is not really normal, but not too big of a concern yet. And her g drain is draining a ton of gastric juices and her meds that the docs seem to think are worth continuing to push into her g. Though she is still retracting (getting breathing treatments every six hours), she is in agony with movement only and the J is still draining black, her seizures were at least gone all day Saturday and by evening I felt maybe things were starting to calm down, but then, she developed this rash on her chest, she started to develop a fever again, her hands are now PEELING, yes all the skin on her hands are peeling (very strange), and she is seizing again. UGH! I decided to head to the hotel to try and get a good few hours of rest before I have to fight with the doctors again in the morning about whta to do about these g meds. She's just not absorbing them in my personal opinion. If she was already having a problem absorbing them before (hence the J tube!) Then she's definitely not going to now that her bowels are a wreck.

Though this post seems dreary and believe me, she is definitely having a very rough recovery, we have at least been able to get a few smiles out of her, family came and visted most of the day Saturday, she was laying in bed popping  bubbles. As long as she doesn't move, she's ok. Moving causes her to cry, which causes her to desat due to her breathing issues, which scares the crap out of me if she does it for longer than a minute.

I've been told that recovery is rough, and all the people who told me that were not joking, it's a very rough recovery. Please pray that tomorrow, we are able to find a good plan for her and that she can continue moving on to recovery. Still shooting for being home on Thanks Giving.