Thought I would add another video of Teryn for your enjoyment and so Gavin can interpret. Our newest nephew who is only a month older than Teryn heard her talking on the video and was talking back to her. SO cute. Can't wait until they can play together.
Okay, here is the update. As you know, the procedure on Wednesday to advance the gtube was unsuccessful. Yesterday Teryn woke up from her nap at around 3:00 and needed to be suctioned which is very normal for her when she is sucking on her paci. However she had just woken up and we heard gurgling so the nurse suctioned her. Then I saw it coming out of her nose. It didn't look like saliva so I asked the nurse, "What does that look like to you." She responded, "It looks like milk." Completely dumbfounded I said, "How can that be possible?" The reason this should be impossible is because she has an ND tube that goes from her nose to her small intestines. The only way she could reflux is if there was food in her stomach.
The nurse walked away to get some sterile cleaning supplies and I looked at Teryn's gtube. In the outer part of the tube there was definitely milk. This meant that her ND tube was not back in place after the procedure yesterday. The nurse came back so I showed her and she confirmed that there was definitely milk in her stomach and the tube must have moved during the procedure.
The resident came in and they pulled the tube out a little and tried to reposition it back correctly. The x-ray showed the tube was coiled in her stomach and was not progressing the way they wanted it. So they tried again hoping her stomach would gradually move it down. (The last time this was done it took several days to get it in place.) As of this morning they had to put her on IV to keep her hydrated while they waited. There have been two more unsuccessful attempts to get the tube in place. They mentioned having her go down to radiology and have it placed under xray guidance. Here is my issue that I am still waiting on an answer for:
The unsuccessful procedure on Wednesday was using the ND tube (same one they are trying with now) thread through her gtube. This was done under xray guidance and they were not able to do it. This was the one the doc wanted to wait 10 more days before trying again. So, if they are wanting to go down and try to insert just the ND why not go ahead and retry with the gtube. I mean, it is the same tube ultimately, just going through her gtube instead of her nose. I am waiting to hear back from them about this. Maybe there is a component I am missing but why am I the one to think of this?
I have asked everyone who will listen why surgery said they would not redo her fundo surgery. Let me make it very clear, I DO NOT want Teryn to have another surgery. However, every alternative option has been shown unsuccessful and there is no plan B. Believe me, I asked again this morning and had 8 doctors all looking at me blankly with no answer as to an alternative plan. At our home hospital the only option we had left was to redo the fundo. We came here because we hoped to have an alternative. Now it seems we are full circle right back where we started in terms of her feedings. I have not gotten an answer about surgery's rationale. I have asked to have them come and speak to me. Obviously if there is a heightened risk for Teryn then I do not want them to do it and I agree with their decision. I am just still wondering....where is the plan B? They have mentioned giving her a larger tube in hopes that they can thread it better....but....that is another SURGERY!
So right now, she is on IV fluids and no feeds. This is her second IV in 2 days because hers go bad so easily.
I am hoping to have some clearer answers by the end of the day. I will post if I hear anything. Looking at the positive...Teryn gave me a BIG smile again today. This is great news in terms of her development. There were concerns for her neurologically and this just confirms what I know in my heart....God made Teryn and He has control. The doctors are just people. They are not the ones who created her. Science and textbook knowledge only go so far. Do not underestimate our family's will and especially this mommy's will for our precious little girl to do amazing things.
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