Make plans if you want, but Josiah does things his way and on his time (and God's plans, of course). After 5 weeks of not using the Gastrostomy tube, Josiah's specialist had decided he was approaching the removal of the silicone "friend". A smaller tube had been ordered and we were on track to receive it by Tuesday June, 28. Once the tube was in our possession we would need to extract the old one and insert the smaller one. The method behind this; the g-tube site (called the stoma) would begin to heal around the smaller tube, causing the stoma to shrink in size. Then after 4-6 weeks this tube would also be removed, and the body would do its job in healing itself the rest of the way. Guess Josiah did not like that plan!
Today, when I picked him up from the nursery after church I noticed that his tube was sticking up higher than usual. When I checked it, it had completely dislodged. I got out my medical bag and got the supplies to try to place it back in. Noticing that the site was closing up, I began to worry and knew that we needed to have the tube replaced into the crater. It was rapidly closing and I could not get the g-tube back in place, even with great force. I packed the wound with sterile gauze and taped it down. Scooping up my screaming little man, I rushed him out to the van and sped to Chippenham Hospital. Once there, they took him back right away and begin to asses the situation. Pediatric surgeons were called and it just so happened that Josiah's surgeon, Dr. Lanning, was on call. He is familiar with Josiah's history and was able to give a good perspective on the situation. The options I was given for his treatment where as follows; put a catheter in place and tomorrow, have the site dilated to get the tube back in. Option two, allow the stoma to heal on its own and deal with the leakage and irritation until it closes. Or the only other option, surgery. The surgical procedure would of course, require anesthesia, a breathing tube, and pain relief following the procedure. I have known for a while that surgery would be our last option, which is why we had opted for gradually sizing down with the tubes until the body could naturally heal itself. I just could not justify putting him through further pain and time in the hospital for them to dilate the site and put the tube back in, when it has not even been utilized in over a month! With those facts, we knew the best choice was to let the site heal on its own and eventually close up all together.
Right now there is an open tunnel in his abdomen that goes down into the stomach. As you can imagine, there is nothing stopping the contents of his stomach from traveling that path. When he eats or drinks, the substance will take the path of least resistance. We have to keep the opening covered with gauze and taped down with pressure so that the stomach contents are not able to easily escape. Doing so, will force the food and formula to take the natural path and will be absorbed for maximum nutrition. We need Josiah to continue to thrive in weight and development. He is doing so well. Two tiny little white teeth have popped right on through his bottom gum, right in the middle. It makes that little smile of his, that much cuter!
June 18th, the Lord called another wonderful woman home. Nanny passed away after a long struggle with Alzheimer's Disease. She was such a huge factor in Chris' upbringing and childhood and he lived with her for 90% of his life. Christopher was absolutely the love of Nan's life.
Mary Christine Cimburke
February 8, 1937 - June 18, 2011
Always loved, always remembered, always cherished.
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| The first time they met |
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| The one and only time Nanny had these 3 together. Thank you God for each day we had with her. |
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