Praise God - Katelyn will be coming home this afternoon! She continues to improve and is excited about being home again. She will start the day program on Monday from 8am - 3pm for 5-7 days but at least will be home with us at night.
Please pray for the transition home to go smoothly for all of us. Especially for Kate as she adjusts to everything. We will be minimizing her visitors and activities as her rehabilitation continues but at least she can be on the phone and computer more talking to her friends!
Please pray regarding the transition to doctors and therapists out patient.
Answered prayer: we have heard back from the doctor we were hoping would take her case on and she has agreed. The last step is finding a pediatric ENT to adress her continued hearing loss. We know God will provide this too!
Finally, we are working with the school district to get her on track to start school on August 11. This will be a big adjustment for her considering she is just coming out of the hospital and also will be attending high school for the first time.
God continues to be good and walk beside us!
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"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." Jer. 29:11
About Me
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.
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.
music comes from the soul..........
2 comments:
Katelyn, I love you so much! You are such an amazing girl. I can't wait to visit you.
You are my inspiration.
Love ya,
V
God is obviously at work in your lives. Thanks for your vulnerability on your blog. Your family has been on my heart a lot and I just discovered your blog to find out the details about what's been going on. Do you need any resources regarding homeschooling or will Katelyn be attending the highschool? We recently spent some time in Colorado with my friend, Stefanie, who has a special friendship with your sister/aunt, Marnie. Small world!!! God bless you and keep you in the palm of His hand. Love, Krissy Brainard
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