Monday, July 12, 2010

1st Night Home

We are home and things are going pretty good. Last night was a challenge with so many new things to do, but I know that this is what is right for Trinity and I am sure the longer we do this the better things will be. The equipment arrived when we got home from the hospital Sunday night and the nurse was very good about explaining everything and making sure that we were comfortable using it. Although last night did not go as smoothly as I would have liked, I keep reminding myself that it was only the first night and it can only get better, right?

I am missing Aubree terribly, but hopefully will get to see her tomorrow!! She don't even want to come home, which don't make it easy for mommy or daddy. :-(

We are so thankful that once again God has pulled Trinity through a surgery and hospital stay without any complications, God is Good!!

Friday, July 9, 2010

Day 3

The G-Tube is in and everything went great! Trinity is currently laying in her bed enjoying the morphine and watching some cartoons. Everything went great during surgery and Trinity is doing really well with pain and the adjustment of having a foreign thing sticking out of her abdomen. They are doing antibiotics through her IV over the next 24hrs to prevent her shunt from getting infected and then hopefully tomorrow morning we will be able to start some slow feeds on her feeding tube and be able to go home Sunday afternoon or Monday morning.

It truly amazes me everytime we are in the hospital and the amazing people that we meet. Today I met a mother of a child with cerebral palsy and has serious seizures. His name is Will and he is an amazing little boy that has amazed a lot of people in his life. They almost lost Will on Friday night to a simple mistake by the hospital staff, but by the grace of God he is here today and fighting hard to go home soon. This family has faced many trials in Will's 3 years of life, but they have an amazing strength. A doctor put it very well to me yesterday "Being at Gillette makes me feel out of place instead of the patients feeling out of place!" and that statement is so true. I love that Trinity gets to come to a place that makes her feel comfortable for who she is and without the stares. Trinity can wheel down the hallway and see all her friends wheeling along side her and it feels good!


Trinity will be going into surgery today @ 2:00 for her G-Tube placement. The surgeon came to see us this morning and was able to get Trintiy into surgery today, which is really amazing considering the surgery schedule. They will place the tube and she will probably be in the hospital until Sunday. It has been a real big whirlwind since finding this out, but the team of doctors feel very confident in their decision to place the tube for Trinity. It is hard to put so much trust into doctors, but we don't always have a choice other then to trust. Please continue to lift her up in your prayers and please pray for the doctors and for Shannon and I. This has been nerve racking for us and just making sure that we are making the right decisions. I will try and update tonight after things have settled down.

Thursday, July 8, 2010

Day 2

It was a long night with wake ups about every hour, we are both pretty tired and hoping to get a good nap today! They took Trinity off of the medicines (to help clean her out) about 9:30 this morning and we are going to start her on the Pediasure in the next 30 minutes through the NG-Tube. The doctors want to do this for 48 hours and evaluate her on how she does with the feeding tube and if she has any behavioral changes with the increase of nutrition and with her colon being cleaned out. If all goes well we will probably be doing the G-Tube depending on when the surgeon can fit her into the surgery schedule, the surgeon will come see her tomorrow and we will go from there. They also did an x-ray of her leg today and we will know tomorrow if the brace gets to come off.

She has really enjoyed the morning so far. They gave her an hour break from being hooked up to the machines and let her ride in her caster cart for awhile. She had so much fun and played hide-n-seek from me in the hallway of the hospital. At least today has been a much better day so far!

Wednesday, July 7, 2010

Colon Cleanse

I have a lot to update all of you on. Trinity is currently in the hospital at Gillette for a colon cleanse and a trial with a NG-Tube (feeding tube going in through the nose). We met with the GI doctor about a month ago and they felt that she needed to have a colon cleanse to totally clean her out and see how she does with eating after that. Their concern with her is dehydration because she don't take a lot of fluids. They are really wanting to do a G-tube, but Shannon and I are trying to make sure that is the best decision for Trinity first. Trinity was admitted today at 9:00 am where they placed a NG-Tube to get the medicine for her cleanse, once she is cleaned out they will start feeding her through the tube with Pediasure (same thing she eats in a bottle at home). At that point we need to make a decision whether or not to go ahead with the G-Tube. We are needing lots of prayers in making the right decision. Trinity has already had a long day and it is only 5:00. They had a really hard time getting an IV in and finally had to do it in her neck because she was so dehydrated.

On another note she also has a fracture in her left leg. About 3 weeks ago her leg swelled up and was really stiff. We took her into Gillette where they found a fracture just above her knee. Luckily it wasn't any higher and she came home with a stabilizer cast that looks like a brace. She is suppose to wear it for 3 weeks and we are crossing our fingers that it will come off tomorrow or Friday. We are unsure what happened, but because she has osteoporosis anything from moving her leg wrong or someone falling on her could have caused this. They explained that this will probably be the first of many.

Other then all of these things Trinity has really been enjoying her summer so far. We have had family up from Iowa and have spent a lot of time at the beach, where Aubree and Trinity love the water!