I am going to try to do this post in chronological order of how the day went, and I will do my best to include everything... but be prepared for a long post (any maybe not the best spelling and grammar)
Last night Jaime and Jason came over (Jilli was so excited they were coming over she cleaned up her toys in the living room by herself) and after they left Jilli got a bath and was wiped down afterwards with the fun pre-surgery wipes. She was very confused why we were not wiping her butt with the wipe. She asked for cuddles in mommy and daddy's bed and we caved. We gave in a little more and we all laid their and watched the Magic Kingdom DVD!
We woke up this morning and got moving a little slower then I would have liked but we made it out the door in enough time to run though a drive through and get coffee. I live on coffee on long medical days.
We got up to the hospital and were happy to find the parking garage had less construction walls and we were able to get a good spot. We checked in and headed to surgery. Once we checked in on the 4th floor they took us right back to a room and started vitals and all of that. Jilli did not like that her oxygen line was plugged into the wall and not her tank. She gets really possessive about her medical equipment and sometimes it leaves us scratching our heads. We waited in that room for a long time and then all of the sudden stuff started moving and the room went from just the three of us to a flow of people in and out. They gave Jilli "happy juice" and when you give that in a j tube it does not take long to start working. She quickly found everything funny and then she started spacing out. The surgeon came in and marked her leg. The GI doctor came in and we talked. The anesthesiologist came in and we talked to her. I really appreciate the precautions they take with her. They decided that since we were there testing for mito that they were going to act like she had mito and use those precautions while she was under anesthesia. I would rather they be cautions.
It got a little crazy there for a little while because they wanted to drain her g but we only had a j extension set and they only had a j extension on the floor. They did not realize that AMT G-Jet has different g and j extensions and that they are not interchangeable. I knew there was one in the car so Brent headed to the car. After he left they talked about just putting a catheter in the whole while in surgery to let it drain and then putting her tube back in. Then as they wheeled her into surgery a guy from distribution brought up a handful of extension sets and they did have one in there (note to world g= white tip, j=green or tan tip) so they were able to use that. Brent then met me in the waiting room. She was back in surgery for almost 2 hours. They did the muscle biopsy first and then the EDG and placed the motility catheter down her nose. They told us to go into one of the consult rooms to wait for the doctor to come talk to us however the doctor came and got me because Jilli woke up as she was being wheeled out of the OR and she wanted mommy (I just left Brent sitting there with all our stuff.. ops!) I got back there and she was quite sad. They ended up giving her a dose of pain meds for her leg. During surgery they had given her a local pain med for it but you could tell it was not enough. Once she got more pain meds in she closed her eyes and rested peacefully.
Dan's cousin's wife works there and came in to say hi to us. Then our GI nurse came in to see how it is going. Then the GI dr came in and we talked for a little bit.
Jilli has a hernia again/still (on her first EGD they found a hernia but no one mentioned seeing one on her second EGD, this is her third EGD). Her sphincters coming in and out of her stomach are more open then they should be (they are too relaxed). They are also irritated and just not happy looking.
The doctor suggested that it was time that we needed to seriously consider a fundo (punch to my heart). Searching this blog will show you all the reasons why we have wanted to avoid a fundo as much as possible, but basically its a big surgery, that could either help or hinder her no guarantee. We have been trying our best for the past two years to avoid a fundo, so it was kinda a hard hit when they told us it is time we really need to think about it. They said their recommendation would to be a loose wrapped fundo and that we could make an appointment to talk to the surgeon who did her muscle biopsy today his thoughts on the fundo since a surgeon has to do it. He and the GI doctor talked about it a little while they were in the OR. I guess Jillian's other GI doctor (the one that Jilli started with) was also in the OR today and so Jilli's new GI and old GI were able to look at a few things together and talk. These are probably two of the doctors who know Jillian best and have seen her the most often, and above all, care about Jilli a lot. I trust the two of them more then I trust a lot of the other doctors we see, not that her other doctors are bad or that I don't trust them, we have just spent a lot of time with her GI doctors and built a relationship with them.
We talked a little about the genetic testing and the genetics department being short staffed right now. She recommended that Jilli is seen in neurology again. She was seen in neuro when she was 7mo old and there was though that she might have been having absent seizures (the events were caused by reflux) and we have not seen them since. We all decided it was a good time to go back to neuro and have them weigh in. Part of that as well is that we are going to try a new med with Jilli to try to tighten up the sphincters, which is normally prescribed by neuro doctors for muscles and we are trying it for GI muscles. However until she has it we do not know how it will effect the rest of her muscles so we are going to have to watch that.
We are also adding a second reflux med to the mix (we are keeping her current one too). By the looks of the inside of her stomach and throat, she needs it. We are also going to give her reflux meds in the j tube. We have always been told it had to go in the g (or mouth) however her new GI is saying that in people with slow gastric emptying that giving it in the g can make the medication not work as well because it sits in the stomach too long. Hopefully changing location of her med will help her too.
We also talked about her gastric emptying scan she had done a long time ago. It was done putting liquid into her g and watching how long it took to empty from her stomach. It showed it went out of her stomach way too fast and that result has always left us scratching our heads because clinically she is the opposite, she can puke something she ate 15 hours before. We figured out today that her tube is located close to the bottom of her stomach and it would make total sense if they put something in her g tube for it to flow right into the intestines because of the location of her g tube. We all agreed that those test results were probably invalid and we can all stop scratching our heads about that. (yeah for an answered question)
We talked about her CoQ10 and the fact that to get the 300mg a day that they wanted it would take 30ml of liquid to get that and she has volume issues. She said to get in what we can in a day. We talked about the mito cocktail of supplements (CoQ10 is one of them) and decided that is something we want neuro to weigh in on as well.
It was then time to head downstairs. Our surgery nurse brought us to one area and we were suppose to be in another. He did not know where the other area was, however I new how it get there (is it sad that I know how to get to parts of the hospital the staff don't?) In the area we didn't need to go where nurses we knew too, so we said hi to them. We just ran into people we knew all over the place. There are people all over there that care so much about Jilli and it shows when we walk through the halls. I don't want tons of people at a children's hospital to know my kid by name, but since we do spend so much time there is means a lot that they have spent the time to get to know her and us.
We got downstairs and everyone suited up in lead. Her leg bled a little moving her from the table to my lap but it was fine. The room was full of people to help with the throat motility testing and swallow study. First she swallowed some water while sitting on my lap and they watch that on the motility testing. She did good swallows. Her lower esophigial sphincter showed on there that it was more lax then it should have been as well. Then we put her in the chair and she swallowed barium water and they watched it both with a live x-ray and the sensors down her throat. She did alright with that. Then they did pear baby food with barium. That she had a harder time getting it to go down her throat and once it went down it immediately started trying to come back up. You could tell she was working hard to keep it down. We gave her some more water and she was able to clear it out of the back of her mouth and down.
We decided that since we are taking her mouth med away from going in her mouth (her favorite thing!) and since that is good small volume practice we are going to try to do 2ml at that time of water or a flavored water to still work on swallowing. That really does not increase what she is getting now (actually smaller) and will help her to keep the skills she does have. With it not being a med, we can also drain it out of her stomach if she is really struggling refluxing it.
Then Brent and the GI nurse took Jilli over to IR because during surgery they accidentally knocked the J part of her tube out of place. The GI doctor and the speech path and I talked about what we had seen and that it showed even more that we needed to think about a fundo. The fundo probably would not make it so she could take her food orally, she still has other issues in the way of that but it would help to protect her esophagus and there is a chance she could have some baby food in her stomach in small amounts, but that is an if it works, and a lot of other ifs. The goal of that would be protecting her body parts from herself not a push to get her off of her tube. We have always said her tube is here as long as she needs it, and for now it is without a question the safest way for her to the nutrition her body needs. We are also going to wait to see how the muscle biopsy comes back and how the stomach/throat biopsies come back before we make any decisions about the fundo. If we do a fundo it wont be next week, it is something that we need to figure out, ask more questions, do more research and meet with more people before we agree to it, but it is looking more likely then it has in the past.
The GI doctor and I then headed over to IR where Jilli was getting a new tube. We talked to the people over there that we knew as well. The GI nurse, the GI doctor and I talked a little more. Then we headed back up to day surgery.
In day surgery they checked all of her vitals and give us all the discharge instructions (sorry kid, no swimming for a week... she has been begging to go to a pool) and they took her IV out and we were able to leave.
By this point it was 3:30 and we have not eaten anything since our coffee a little after 7am so we met Dan at Cheesecake Factory. She played her iPad nicely and rested her head on Uncle Dan's hand most of dinner. If she was not resting her head on him she was holding his hand. Once we were done with our meal I was done and just wanted to come home. We stopped at Walgreens on the way home to pick up her two new meds and one of them the insurance company is wanting more info from the doctor before they will pay for it so we could not pick it up today but we did get her second reflux med. Jilli feel asleep in the car coming home and has been sleeping on the couch since. She did not get a lot of sleep time after surgery, we needed her up enough to swallow, so she was absolutely exhausted by the time we headed home (she kept trying to fall asleep at weird times in the hospital today).
I am thankful that she handled surgery well. I am assuming everything for the muscle biopsy went well since I realized once we got home that we never did talk to the surgeon about it after the surgery, but she does have an incision on the top of her left leg that is rather bloody (dry blood at this point). She kept poking at it earlier. They did a local pain med and a shot of pain meds so she is not feeling it now, but I have a feeling that tomorrow that is really going to hurt. I am hoping we can ride it out with over the counter pain meds (this child already takes a pharmacy) but they did give her a script for heavier pain meds if she needs it.We should hopefully have results from the muscle biopsy in 6-8 weeks.I am SO hopeful for results from that.
So thats our day. Kinda crazy. Kinda long. But we did get some answers today and we are hopeful that the muscle biopsy will give us more. For now I think it is sleep time for this mommy... time for some hot chocolate and Gilmore Girls.
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| waiting in pre-op |
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| happy juice started kicking in |
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| playing iPad |
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