Sorry to just be posting to everyone, this week Jenna has had something to do just about every day. So, I will try to break down the post by day.
Daddy woke up this day not feeling great, had been a little under the weather the night before, so he decided to hang out at the house all day, resting and doing laundry. Jenna and I hung out together, playing with OT and PT and Speech. Her Upper GI was done today, she was very nervous in the room. Myself and the staff tried to make the time in the room fun, playing SPongebob videos, blowing bubbles, and making her bear dance. She enjoyed the bubbles a lot, her nurse made the bubble machine do CRAZY things, in addition soaking mommy, Thanks Megan!!! She had what I call the death grip on my shirt the entire time because she did not like the machine. She asked for daddy more than once, and I tried to distract her to other things, so she would not think about him. He was so sad to not see his baby today. Once she was settled, the test went well, and we were back in the room before you knew it! We made it back up to the room, and she did fine, resting and watching tv. So, she vomited a little when we made it back upstairs from the barium ingested in the test, but she was fine. The doctors came by later in the evening for rounds, said that there was not much received from the test data wise, it did not show if Jenna has reflux or not, but that she does have normal anatomy, but her stomach just does not empty too fast. So, they are consulting GI to come by and discuss doing a probe which measures the amount of acid which comes back up in her espohagus, they are to stop by in the next day or so. She also had two apneic episodes this afternoon while napping, where she just stops breathing momentarily and the vent kicks in a breath for her. This evening was interesting because mommy was freaked out a bit during trach change. Since daddy was not feeling well, mommy had to have the nurse help her during the cleaning. Jenna was not happy during the entire process, and ended up starting to "buck" and move around a lot. To the point where she ended up pulling her neck in the opposite direction of how it was being held, and the trach pretty much fell out. I panicked, the nurse panicked, we got an RT and the charge nurse. This was the most action in Jenna's room in a while, which is a good thing. The trach got back in, Jenna was not happy for a bit, but then was fine. Glad this happened while we were here, and not at home (the first time), I am sure that it will not be the last.
So, today she is scheduled for her CTA which is to look at her lungs for future caths and surgeries on the pulmonary arteries in her heart. Daddy felt better and was able to see baby before she went for the test. We took her down, dropped her off and waited for it to be completed. She did vomit again this morning, and it had blood in it. About the same amount as previously. The test went well, and they noted everything was the same as previously (her history, anatomy, and all the reconstruction surgeries done). They were able to obtain better pictures this time, which is good, since they have not been able to before. Hopefully these will help Dr. E and Dr. Beekman. We came back up stairs, and Chrissy did her PICC dressing change which went better than expected. Thanks Chrissy for being great and standing up for me in the CT room with meany nurse lady, (you know who I am talking about!) A few hours after she was up playing, but then got tired and fell asleep. Over a course of about 45 minutes she had about 6-7 apneic episodes, even after being put back on her ventilator rate which pushes a breath if she is not doing it herself, every 6 seconds. GI also stopped by today, discussed her history with us, looked at tests performed, and decided to meet in conference with their team about Jenna's situation. They came back in late afternoon and discussed the recommendations for her. He said that the team feels that a Nissen G tube (food goes into belly via tube, and the stomach is partially wrapped around the base of the esophagus to help with reflux, preventing food from going back up) would not be the best option for Jenna. He said that she has had a lot of stress and trauma to the stomach recently, and feels that this would do more harm than good at this point, maybe later down the road, but he does not feel her issue is completely reflux. He feels that it may be possible that Jenna's belly does not tolerate the amount of food going into it at this point. He said that it is possible there is underlying irritation which may be causing the bleeding. He feels that a majority of the bleeding is coming from her belly and not the esophageal polyp. He said that they are recommending going back to the NJ tube for now and doing a scope later to possibly do biopsies to see if there is any other underlying issues, and to put a G-J tube in, not a G tube. A G-J is where there are two ports, one into the stomach and one in the intestine. This would allow her to still get small amounts of food into her stomach (and later by mouth when she is off pressure support and able to have food orally) and also through the intestine for the majority of her nutrition (which would be given continuous overnight). He said that he feels that her stomach is just not quite ready, and still needs to be moved up slow for feeds. Also, this issue did not start happening until we went from NJ to NG and she was able to be on full feeds with the NJ. He is to talk to the team tomorrow about the recommendation. He looked at her recent scope pics and said that it looks normal, it is healing. So, by rounds that evening, the attending said that he wanted to consult to have a head MRI done and a sleep study, to make sure that there was no new issues going on, and maybe she is just getting really tired and not breathing very deep. She had vomited again, this time with pieces of old blood, which could just be from an area that dried up and broke loose. Also, he said that he still feels that a Nissen G tube would still be best for her, and until he is given findings that don't support that, he still would prefer that option. I mentioned to him that does he think that by chance that this all happened afer we moved from the NJ to NG or does he not think that it has anything to do with it. He said that he thinks that the tubes are placed different ways, and that the polyp could be irritated from the tube moving around, but he will talk to the team tomorrow. So, we had a better evening. We will see what tomorrow holds.
So, today there were no tests, just her trach change. This is done weekly now, because she is filled with mucous and so that we can start getting familiar with changing it ourselves. So last week I took the trach out, and today I took it out and put the new one in. I actually did it! I was so proud of myself. Jenna did well also, not mad at all and her site did not even bleed! Yay! She had a little trouble adjusting to the new one, but was fine after a bit, she just coughed a lot recently, which is normal. So, before we came this morning, she was up playing with speech, doing all new signs like mommy and daddy, so proud of her!!!!! She was ready for us to be there! We had a good rest of the day, played and rested mostly. She did one trach collar trial for about an 1 1/2, played with PT for a bit and made it well known when she was finished! She signed "all done". They changed her Methadone from IV to by mouth and had already through the week lowered both meds down to 1 mg. She had a little withdrawl last night, more than usual, I think because of the change from iv to by mouth. So, this was fun. :( We finally were able to make it out of the room by after midnight, thanks to the nurse, Sarah! The attending stopped earlier during rounds and discussed the situation about the tube placement with us. He said that GI talked to him and brought up a good point that the Nissen would not be a good option right now from all the stress her stomach has been through. Basically what they said to him, he could not turn it down, basically it was the best option for Jenna. Also, Justin brought up that we researched the Nissen and did not feel comfortable with it, because we were afraid it would cause more issues with eating and oral aversions, making her feel sick. So, G-J tube it is. So it worked out overall. So we are just waiting for surgery to consult to discuss when it will be placed.
So today, we made it before rounds, she had vomited again blood first thing when she woke up this morning. She was scheduled for her head MRI today at 2p, so this was our big trip today. In rounds they decided that they would start feeds again after getting back (still not done, since evening rounds are not done yet), trach collar trials then too (one is done) and we have to change the trach again today because the one in is not MRI compatible. So, we did this, they wanted an iv, but the nurse convinced anesthesia her PICC would work, which it did. So, we are waiting on rounds, hopefully they will let us know how the test went. Pulmonary stopped by to consult for the sleep study, which should be done sometime next week. She has done well today, playing with PT this am and speech. She did well. She is so cute right now, her hair is in pigtails, thanks Tracey! She is currently playing with her IV tubing! We are just hanging out, hopefully we will have a good evening, nothing new right now. We are still waiting to hear from surgery about when the GJ placement will be. During rounds this am they wanted to change her Ativan to by mouth too, but we just changed the methadone yesterday, usually we have been doing every other day. I expressed concern, since she seemed like she was a little jittery last night. They said that this was fine, no hurry and they will wait until tomorrow to see how she does.
So, again sorry it took a while to post. Just been tied up with her, going to tests, and trying to keep her happy, been reading lots of books and watching lots of cartoons! Thanks for all of the packages, cards, thoughts, prayers, and love! It means a lot to us. Keep praying for her and us, we have been here 11 weeks now, hopefully we will make it home by Thanksgiving. Thanks again and love you all!
Love Jenny, Justin and Jenna