Katelyn's Journey: FREEDOM...

Friday, July 4, 2008

FREEDOM...

On this day of celebrating freedom, Katelyn has discovered a new freedom for her. She has learned to use her ipod by controlling a stick with an erasor on the end. This is a huge freedom for a teenager!

Also, she wants to say that she is thankful for the freedom she has today to move and control her head. She realizes how lucky she is to atleast have the freedom to think clearly and communicate.

We look forward to celebrating our country's freedom tonight BBQing with friends and thanking God for all He has given us. Please take a moment also to remember those serving our country to protect our freedom!

Happy 4th of July!

1 comment:

Anonymous said...: Hey Kate,
Happy 4th of July!!! I love your method of controlling your ipod; you guys are so resourceful! Stay strong.
I love you,
V; July 4, 2008 at 5:14 PM

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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

Friday, July 4, 2008

FREEDOM...

1 comment:

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