Dear friends,
Today was definitely a day where we were thankful for the prayers of God's people. The knowledge that God is the great physician and that nothing happens outside of HIS perfect plan, carried us through some tough news. We took Samantha to see the motility specialist in SF today. We really like this doctor because he is cutting edge, quick to try new things and VERY straightforward. He examined Samantha and reviewed everything that has happened since we saw him last month. His conclusions were what we expected (we have done a lot of research on our own) but not what we hoped to hear. We prayed for answers but also for the peace to accept God's will.
"In this you greatly rejoice, though now for a little while, if need be, you have been grieved by various trials, that the genuineness of your faith, being much more precious than gold that perishes, though it is tested by fire, may be found to praise, honor, and glory at the revelation of Jesus Christ" 1 Peter 1:6-7
Samantha will not be continuing on the octreotide injections, as the side effects from them were very unpleasant, and the drug did not produce the desired result. A special thank you goes out to those who helped pay for this expensive treatment! She is not a candidate for any surgeries because of the extent of her condition. He has tried all medications that had any chance of reversing or greatly improving her condition and none of them produced the desired results.
What is left are a few medications that may help manage symptoms and improve the artificial feeding process. He does not see her getting off the feeding tubes. The best he can hope for is that, with medication, eventually she will be able to tolerate enough through the tube through her nose(NJ) which is a more natural nutrition that they can reduce or eliminate the IV feeding tube in her arm (PICC line). If the NJ will work, it can be moved to the wall of the stomach so that it is not "in her face". At this point, the experimenting with meds will take months, with the hope that perhaps sometime she will be able to eat and drink a little on her own. Obviously we had hoped that he would be able to offer better options. Feeding tubes carry a high risk of infection and the PICC line/TPN feeding will eventually damage other organs. But, nutrition is necessary to survival, so it is a risk that must be taken.
None of the doctors have been able to determine what caused this condition, but 60-80% of the time a cause is never found. It was probably caused by a virus. It is still hard to comprehend how this happened to a very healthy, active child. However, we know that God is good all the time.
We are thankful that through insurance and the generosity of God's people, all medications and procedures have been paid in full. We now have a special fund set up at Baptist Church Planters in Samantha's name and are trusting God to continue to supply every need according to HIS riches in glory through Christ Jesus.
We are now moving into a maintenance phase where we learn to live with this condition. There are many opportunities to share our faith with doctors, nurses, etc. as we go travel down this path. We will obviously continue to seek new treatments, but we have to acknowledge that the doctor whom we saw today is the one that every one in this field turns to when they don't know what to do next. If he doesn't have a solution, it is unlikely that others will.
Samantha continues to amaze us with her faith. Of course, there are moments when we all falter and struggle.
However, Samantha's FaceBook post from this afternoon sums it up quite well:
"just got back from my appointment with my motility specialist in San Fransisco, he said the only thing he can really do for me now is try some new nausea medications for a few months and see if they help the feeding tube work better, if they do I'll get a more permanent feeding tube if the medication doesn't help we will probably just do TPN. When there is nothing you can do in your own strength that is when you are the most aware of Gods strength, he is the great Physician and can do a miracle but we have to remember that God answers our Prayers yes, no and later."
Please understand that we have not given up hope. Our hope is in the LORD, the maker of heaven and of earth!
Samantha still hopes that they will get her tubes working in such a way that she can return to playing softball, surfing, and doing all the things that a typical teenager enjoys.
There is a need for more research and medications to treat this condition. Pray with us for a breakthrough to help her and many others who suffer from this "silent illness".
Thank you for your prayers and support!
Tim and Susan Heinrich
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