We have all the test results back and Dr. Chez is going to stay on board as part of the team of doctors helping Katelyn. He has started 2 new medications that he hopes will help. Please pray for wisdom regarding the medications they are trying. Please also pray for the addition specialist they hope to bring on the team. They are trying to find someone that specializes in this condition.
On coming home, Katelyn's p.t. will be increasing to 4 mornings a week for at least 2 hours and we will have more rehab that is being scheduled to do with her at home. So, she will be working very hard and we all will need prayers to endure the intesity of this new schedule. Visitors will be limited and short due to trying to balance encouraging her and also her getting the rest she needs.
PLEASE pray for her spirit and all of us to hold onto our faith in the Lord to endure. Scripture says that when we are weak, HE is strong. We are holding onto this. The scripture we are claiming right now is Proverbs 3:5 "Trust in the Lord with all your strength and lean not on your own understanding and he will make your paths straight." We don't understand this, the doctors don't even understand it all, but God does!
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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 Sweetheart,
You and your smile are a great inspiration to us, so far away in Colorado. What an amazing story is being told with you as the main character. Continue to trust our loving Father as the author. We love you and your family to the moon and back, and we pray for your healing with all of our hearts. Hugs,
The Bontempo Family
I'm So Happy to hear you are comming home! Praying for strength.
Can you Pray for a Friend of mine? A co-worker got crushed when her horse fell on her. Broken pelvis and hips. She is still in SanFrancisco Hosp.. and wont get to go home for a few months. She is a single gall with lots of animals at home. Her mame is Luanne.
Thanks - Lori
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