Saturday, June 20, 2009

MRI



Trinity is doing pretty good. She had an MRI on Wednesday to look at her Chiari and Shunt. Everything looks pretty good. She has a lot of scar tissue, but there is really nothing they can do about that. We also had to discuss the problem with getting an IV started in Trinity. Everytime she has to have an IV they have a terrible time getting one in and for the MRI she had to be sedated so they had to do an IV, well after the 4th poke and getting the manager to do it they finally got it. I discussed this problem with some of the nurses and the anesthesiologist and they wanted me to discuss this with the Neurosurgeon and talk about some options. There really are only two other options and the one will not work for Trinity because of her low muscle use in her rectum, so the other option is a port. Dr. Haines said that it will probably be an option if she has to have another surgery. So we are praying that things will change for Trinity and they won't have such a difficult time, but they told us that the older she gets the harder it will probably be. Her shunt is working like it should, and I love the new valve, because it is so much easier for them to reprogram after an MRI.

We are going to make contact with her pediatrician this week and get a swallow study done soon. Trinity is still not gaining weight and Dr. Haines even mentioned this at her last appointment. We also have a call into the Orthopedic Surgeon because of her brace. Trinity is suppose to be wearing it at all times except when she eats and sleeps, well for those of you that know Trinity she sleeps at least 4hrs during they day and about 13hrs at night, so that leaves her about 7 hrs, but because she can't wear it while she eats that takes away another 3hrs because we have to give her time to get the food digested and settled into her stomach. Well when you really add it up she is only getting at the most 4hrs in the brace, if that. We have also been having issues with her vomiting while having it on. So we are trying to figure out something that will work for Trintiy. It has been a week now without wearing it and that makes Shannon and I nervous, the last thing we want is for Trinity to have surgery earlier then we wanted to help correct the scoliosis. Hopefully they will get something figured out soon so we can get her back into it.

She hasn't had much PT lately because of the summer hours, but I try to fit them in a couple times a week and any activity for Trinity is PT.

The girls and I get to head back to Iowa on Monday and are really looking forward to spending a week with some family and friends. Shannon will be coming on Friday and then riding in the Poker Run for Stella Turnbull. If you remember last year Co-Line had a Poker Run for Trinity and this year it is for our "great" friends daughter Stella. All the proceeds will go to help her get wheelchair/van. If you live in the Lynnville area or surrounding communities please come join in raising money for such a special little girl! Here is her website with all the details http://www.caringbridge.org/visit/stellaturnbullturnbull

Have a great weekend!

1 comment:

CureSMA4Stella said...

Hey there! So good to see you guys at the PokerRun this weekend! What an awesome day! Meant so much that you were there . . . and then it was so cute to see Aubree and Stella playing in church together. Stella loved to drop her toy and Aubree would catch it and give it back to her. So cute!

I wanted to mention about her TLSO . . . since Stella is a tummy breather, we have to have a hole cut out so her tummy can move up and down and not be held back by the brace (we also have a hole cut out where her gtube is). In fact, the hole wasn't big enough so her tummy protrudes through a small hole and we'll be going back this week to have it cut bigger. Just thought I'd let you know about that option. Let me know how your swallow study goes. I'm not sure if you are headed down the path of a gtube or not but I just wanted to reassure you about it!! Stella had a gtube and nissen done (prevents vomiting) and we are so thankful for it. Obviously Trinity can still eat by mouth but if you want to make sure she gets all her nutrition and starts growing, the gtube was the option for us (Stella quit nursing well at 4 months because her swallow was weak). Also, don't think of it as permanent if you go this route as it can be removed without a problem (we have friends with a heart child who had this).

Big hugs to you! HOpe to chat with you soon!
Love,
Sarah and Stella and family