Sunday, February 28, 2010

Last Night!

Well this is our last night at the hospital until it's time for Jaylee to get the transplant done. We are so excited! We know its only temporary but it will be a nice break for Jeff and I. We will keep you all updated on the transplant and how things are going on at home! Love you all!!

Thursday, February 25, 2010

Good News!!

We had a meeting today with the doctors on the Bone Marrow Team and they have decided that Jaylee is doing well enough to GO HOME!! (Jack and Annie's house) until it is time to do the transplant! She still has a virus in her blood and stool that we are working on getting rid of before we go through with the transplant. She has two weeks left of anti viral meds and then they want to wait about a week to make sure it is all cleared up. We will still have to be extremely careful about washing our hands and staying very clean and healthy but we are so excited to be leaving the hospital!!!

Sunday, February 21, 2010

You can tell how much better Jaylee is feeling these days. She is just over 15 pounds and you can see how well she is doing everyday!!

This is in the PICU with the adult size nasal cannula in her nose.

Here are pictures of Jaylee when we first got to the hospital. The first three pictures are when she weighed her lowest, 11.5.

Here are a few pictures of Jaylee before Christmas!

Saturday, February 20, 2010

What's been going on...

So I thought I would start out by giving a quick summery of everything that's led up to this point.

About a week before Christmas we noticed that Jaylee was having a hard time keeping her food down and was having really bad diarrhea. When we came up to Salt Lake for the Holidays she was still throwing up her food and we noticed she was looking thinner. When we took her to a Pediatrician in Salt Lake he suggested that she had fluid behind her ears and told us to give her pedialyte to help keep her hydrated from all the vomiting. On Christmas day at my Grandparents house, Jaylee was very lethargic and still had really bad diarrhea and vomiting. That following Saturday we took her to see another pediatrician who gave her some antibiotics for her ears, which looked infected. As we stayed thru New Years she progressively got worse.

When we got back to St George we took her to see our usual pediatrician Dr. Twiggs,on January 4Th, who after getting a blood test and chest x-ray of Jaylee told us she had Viral Pneumonia and put her on some breathing treatments. After a week of breathing treatments nothing had changed, and by that point she had lost a full pound! After that week we decided to take her to see a different pediatrician recommended by a family friend. On January 11Th we took her to see Dr. Nygarrd who immediately told us she needed to be admitted to the hospital. After being admitted and getting what seemed like a million tests over the next two days, a feeding tube put in and putting Jaylee on oxygen, they concluded that there was something wrong with her immune system and decided to contact Primary Children's Medical Center. They wanted us to bring her up immediately.

So Jeff and I loaded up the car with a weeks worth of clothes (we figured we would be there for about a week, maybe two!) and the three of us drove straight up to PCMC. Within 48 hours after getting another million different tests and seeing roughly 25-30 doctors they diagnosed her with Severe Combined Immunodeficiency or SCIDs. What that means is Jaylee was born with little to no immune system and the "Cure" is a bone marrow transplant.

As of now we have been here a little over a month. Its been a rough month to say the least. It has been such a roller coaster with her health. When we first got here she weighed her lowest which was 11.5. It was very scary. Within the first two weeks she slowly started to gain weight but her breathing was getting worse and we eventually spent time in the Pediatric Intensive Care Unit (PICU). I think that was the worst week. They had to put an adult size nasal cannula into her nose and she HATED that!! It was so heavy on her face we had to tape it to her nose and forehead. After a week in the PICU, her breathing improved rapidly and we were able to come back up to the Immunocompromised Services Unit (ICS). Today I am happy to say that she now weighs 15 POUNDS!! She looks Great! The Bone Marrow team estimates that she will be ready for her Bone Marrow Transplant (BMT) in about a month. We are keeping our fingers crossed and our prayers plentiful!! We want to thank everyone who has kept us in their prayers, THEY'RE WORKING!!

Saturday, February 13, 2010

Hello there!

Okay, so I have had alot of people tell me that they would like me to have a blog for updates on what is going on with Jaylee. So here it is! I have never done a blog before, so bare with me! I am going to try to update every few days but at least once a week for sure. If you have any questions, please feel free to ask. Thanks!!