Katelyn's Journey: Thursday Afternoon Update

Thursday, July 10, 2008

Thursday Afternoon Update

They met with the new neurologist, Dr. Chez and are so encouraged by his response and approach. Dr. Chez has ordered a bunch of tests for the next day or two and has asked to keep Kate calm and laying low for the next 48 hours, so please no visitors and keep the phone calls down to a minimum. She'll have her EEG this afternoon and the MRI tomorrow. Jeannette and Robert feel very confident and comfortable with the care and attention Kate is receiving, and the attitude displayed by everyone - which is to find out more, why, how and how to get her better. Thank you for all your prayers and support.

4 comments:

Cindy said...: I pray that there are some answers for you and admire your courage and strength. I know that God has you all in His mighty grip and is watching so carefully over all of you.
I love you!
Cindy D; July 10, 2008 at 2:42 PM
Anonymous said...: We are praying fervently for you!
You all are extremely special.
We love you,
Holly, Randy, Carson & Sam; July 11, 2008 at 4:19 AM
Anonymous said...: You all are on our minds and hearts and in our prayers. May God provide new direction and hope! Love ya...Kelly (for all the Broughtons); July 11, 2008 at 9:39 AM
Anonymous said...: You are all in our thoughts and prayers. We pray that the new doctor can find a swift route to recovery for Kate!

The Calderwoods; July 11, 2008 at 10:21 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

Thursday, July 10, 2008

Thursday Afternoon Update

4 comments:

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