Katelyn's Journey: December 2008

Monday, December 29, 2008

Merry Christmas!

This year we went down to Southern California to vist some of my dad's family that live down there. It is a large family reunion, my dad has 3 brothers and 5 sisters, so the extended family is pretty large! We also have'nt seen my grandma in a while so it was good to see her! We also spent some time at the beach and the weather was great so we had a ton of fun! (can you believe it was actually felt hot there are you jealous?) :) I hope you had a great Christmas and if i don't see you A Happy New Year! The picture is of Becca and I (of course) and one of my many cousins Alex!

Kate

How it all began...

In Febrary, Katelyn first developed a severe unknown allergic reaction that caused her eyes to be swollen shut for over a week with orbital cellulitus and her whole body to itch. She was on high doses of antibiotics and steriods to clear up this contidition.

Next, in April she came down with a very bad flu virus that caused her to loose a lot of weight in a short amount of time. Katelyn ended up in the hospital due to dehydration and the inability to keep any food or liquids down. She underwent many tests and evaluations. At one point, she had lost more than 15 pounds. After 3-4 days of testing, it was finally determined that she had SMA syndrome, which is a small intestinal blockage. A feeding tube needed to be placed past the blockage before they could begin tube feedings.

Unfortunately, there were many complications involved in this process. They had to do feedings through her IV until the tube moved to the right location and multiple times they had to move her IV as her veins kept giving out. Eventually, they got the ND tube placed and after 2 weeks in the hospital we got to go home on home feedings until the blockage cleared and she could begin eating on her own again.

We started having complications almost immediately after going home. Her system struggled with the change in formula we went home on and the change in medications. Also, her feeding tube became clogged and required a trip back to UC Davis to have it cleared. After only 4 days, we were back in ER as her GI system developed complications. We were released for home treatment but the next week ahead brought further problems.

The following weekend, we were back at the ER due to the tube being clogged again (apparantly this isn't unusual). This time they brought in the Intervention Radiology team to pull the old tube and replace it with a new one. They choose to sudate her for the procedure this time. Again, there were complications arising from the medications and when she finally pulled out of the sedation she had lost all her muscle control. Her body had finally been through one too many traumas and shut down.

Katelyn was admitted again and we spent the next 2 1/2 weeks in the hospital in the rehab program. The one success while we were there was that she slowly began eating and the feeding tube was finally removed and done with.

Katelyn was released on May 29th in time to attend her 8th grade Graduation the following day. She was still completely dependant with no muscle control but she wanted to attend her graduation anyways. Strapped into her wheelchair, she wore a huge smile and accepeted her diploma.

Katelyn is now home and with the aid of a hospital bed downstairs, we are able to care for her here. She continues to have rehab therapy locally with a therapist she likes and has worked with in the past. Her progress is slow but the prognosis is for full recovery but it could be weeks or months, they just don't know.

Katelyn's Journey

Monday, December 29, 2008

Merry Christmas!

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How it all began...

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