Hospital Sleepover

Here I am once again sitting on a hospital bed listening to my little girl sleep. The great news is she is not sick.

I have noticed recently that the j portion of her feeding tube has become worn in the spot where it has to be clamped between each medicine dosage. Last night as I was trying to give her the first med I noticed it was a little difficult to pass through. I wouldn't force it because I didn't want it to bust if there was a clog. Then all of a sudden it went very freely. Yeah....very freely all over Teryn and me!!!! We had sticky phenobarb all over us. I cleaned us both up and then hoped that maybe I would be able to patch the hole just enough to give her meds and feeds until the morning. No such luck. So I knew this meant a night in the hospital. I called James and began getting mine and Teryn's overnight things together.

Luckily we went straight back at the ER and they took my advice and called Teryn's surgeon immediately. As I predicted, all would have to wait until morning when the radiolologist could be here to check her new tube placement.

This morning the surgeon came in bright and early ( Oh....did I mention we were already supposed to have an appointment at his office this afternoon!) He sits down and tells me he has been thinking again. He and I have gone around in circles with the same conversation for 3 months now. Not in disagreement, but just trying to work out the best thing for Teryn. So he comes in this morning and says he thinks maybe with the reoccurring issues we keep having with her tube that maybe it is time to do something definitive. We have discussed several times about him going back in and doing a revision on her fundoplication (reflux surgery) as well as a pyloroplasty (will open up the opening at the bottom of her stomach so things will empty better.) Here is where our circle conversation begins......."What if it is gastroparesis?" (stomach not contracting properly) "Will we be doing an unnecessary surgery?" "But if it works then she can learn to feed by mouth." "There is a higher risk with this repeated surgery."
So what we decided this morning since the present tube was going to have to come out anyway, was that we could redo one of the gastro studies while the tube was out. Previously the tube being in the way led to the studies being inconclusive. We decided to do an upper GI to watch and see what the barium does in her digestive tract.
So he prepares his materials and as he is grabbing something else Teryn's hand hits the exposed tube and she pulls it almost all of the way out. Guess it was ready to come out anyway. He put some gauze dressings around the hole to keep pressure on and keep from contents leaking out. The original plan was that I was going to have to keep my finger over the hole during the GI study to keep things from coming out. Close your mouth. I know it is gaping open in shock and disgust. Luckily I was able to dodge that bullet.
We took her downstairs and I began rattling off my usual requests/demands. She needs to have suction nearby, you can not give her anything through a bottle, we are going to have to go slow so she doesn't aspirate. They were very sweet and understanding and met all of my requests with patience. We used a catheter tip syringe and I veeeerrrry slowly gave her the barium in her mouth. At first she was enjoying it and SWALLOWING. Eventually she got frustrated because some of it was coming out her nose. Then she wasn't as cooperative about swallowing. Eventually we got enough in her stomach that the doctor was satisfied he would be able to have valid results.
We then went upstairs to await the results. The surgeon called and said for someone to reinsert Teryn's tube as soon as possible as a placeholder to keep the hole from closing up. The nurse was going to wait until she woke up from her nap. For some reason I didn't want to wait so I convinced her that we should go ahead and do it. In the amount of time it took us to go to radiology, come back up, and get the adhesive bandages off, the hole had almost completely closed!! The nurse tried several times but could not get the tube back in. She called the surgeon and he advised to insert a very thin tube just to keep the track open. That worked.
In the meantime she is still having stomach contents leak out around the site which is causing skin breakdown. The wound care nurse came and put some protective cream and dressing on it.

A few hours later the surgeon comes into the room grinning from ear to ear. He said that everything in the study looked beautiful. The original fundoplication appears to still be intact and the contents are emptying from the bottom of her stomach. In his opinion he thinks she should be able to tolerate food in her stomach. So here is the plan for tomorrow. She will be placed under anesthesia and he will go in with a scope to look at the physiology and get a better assessment and make sure there isn't something we are missing. He will then place a new tube in. He has one ordered that will take up less room in her stomach. Then we will hopefully be able to begin feeds through her stomach again very slowly and then eventually up to full feeds.



I am praying that this works. If so, then I believe we will be able to begin teaching her how to eat soon. I was so proud of how well she was handling the barium in her mouth today. We have been praying for guidance in making a decision about all of this. Maybe this was the Lord's way of guiding us to the right one.



Please say your prayers for Teryn. Please pray with us for some solutions.