First off let me say that I am absoultely AMAZED at the turnout and funds raised at the spaghetti dinner/silent auction. Those who planned this event did so in 2 weeks, during the holidays~AWESOME!! We are also very thankful for those businesses and individuals who donated food and items for the event. There were SO many people who showed up to give support for our family! We are beyond blessed and grateful. Words are not enough to share our feelings, but we truly hope that everyone knows how much we appreciate them, their time, generosity, prayers and love!
And now to recap our Day in Houston!! Elizabeth still had LOTS of trouble with her sedation today. They have changed some of the dosing times up a bit to see if they can control it more. Time will tell.
This morning she had blood in her urine. They thought at first maybe kidney stones, or some infection or muscle breakdown of her kidneys. They did a lot of urine tests and an ultrasound of her kidneys. All was good with the tests/images, so they are thinking it may have been some trauma from the foley catheter and will just monitor it for now.
Yesterday the transplant team decided to try pulling the NJ tube that was down her nose. (It was very irritating to her, and the surgeons wanted to out prior to transplant.) And attempt to use her Gtube(the one in her belly) for feedings. She started throwing up about 30 minutes after~ SO NOT GOOD!! The fear with her throwing up or refluxing is that she will aspirate into her lungs. She has already had the surgery for the nissen fundoplication to block the stop of her stomach to prevent reflux, but it isnt working properly. So chances are it has loosened up. So now the BRILLANT plan (sarcasm here) is to take her downstairs tomorrow and have a GJ tube placed (the tract in her belly will have 2 tubes one goes in her stomach the other goes into her intestines). She will then be able to use the tube in her belly to be fed straight into her intestines, an after transplant maybe look at redoing the nissen. SO the downfall of "taking her downstairs' is she is on such high setting on the vent, and requires so much sedation that there is a high chance she will not do well with being moved. Basically they have to bag her the entire time she is transported down the hall, elevator, and possibly throughout the procedure (which takes about 30 mins). I voiced my concerns numerous times today to every doctor I saw, but Dr Mallory assures me that it will be ok and must be done. So the plan is to have one of the PICU Drs and Respirtory Therapist who knows her well be with her the entire time, and they will give her anesthia and paralyze her to ensure she does not fight the transport and procedure. This is scheduled for 9AM CST so PLEASE keep her in your thoughts and prayers tomorrow!! This could go really bad, really fast and we are hoping for the best with it.
During the fundraiser at home, we were skyping in and chatting with family/friends. When it was decided that Elizabeth needed a trach change due to her aircuff leaking. The ENT Dr that came up was extremely rude to our nurse, and then to us. We again offered to change the trach and at first she didnt want to let us. But after we explained we did it last time, and the RT said she was fine with it she agreed. But she would not get out of our way and let us use the system we have when we do trach changes. She was being very picky about things, and we had to tell her either we do it our way or you do it. Needless to say Matt got mad, which is never a good thing, and she finally got out of our way. We got the trach changed out and Elizabeth did really well with it. And I think ENT realized she was a very disliked in our room, and left quickly after :)
Another thing that has been discussed recently is the inominate artery syndrome. Most of you remember that part of the reasoning for the trach was due to her aorta compressing her airway. A surgery to lift the aoarta off of her airway and suture it to her sternum called an aoratopexy was discussed at Vanderbilt. But it was feared that she was not strong enough to survive due to her lung condition. So now that she will be having major surgery on her lungs, the plan is if needed to do the aoratopexy at the same time as transplant. YEA so that means 2 major things happening at the same time. The Surgeons wont know if she needs this until they are "in" and visualize the compression and then decide if it is bad enough to do the surgery or not. Since this compression issue can get better over time, its possible she may not need this. But the whole purpose behind this is so she will be able to get rid of the trach!! It seems so unreal to think, once she gets new lungs.....NO oxygen, No Trach, NO Vent...(we will have the feeding tube for a while, but you get my point)
BUT for new lungs....We need insurance approval. UGH yes, we are still waiting!! Not so patiently I might add :) I have called multiple times everyday this week. Yesterday insurance advised me that her paperwork was NOT marked urgent, so they were not processing it quickly. ~~ But Really....if a 1 year old is being considered for a lung transplant, what part of that is not urgent?? ~~ I had to get our couselor here at the hospital to resend it and mark it urgent. So hopefully we will have an answer soon. After the meeting Wed, the surgeons are on board with listing. At this point all we need is insurance approval and the girl will be listed!!! As long as she remains stable (have to add that disclaimer in)
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