July 12th we went in and had them switch it out. With a G-tube the tube just goes into the stomach, very easy to switch out for another. With a J-tube it's a little more tricky.
First, to place it she had to be put under. An Interventional Radiologist placed it. Basically they used a X-ray machine that took current and live pictures. I think... I'm still fuzzy on how they did it. It was all very short notice. It was done as an outpatient procedure. Well. It was meant to be.
We went in to the hospital. After much confusion regarding size, procedure, etc etc.. We finally went to the room. I was able to sit by Anabelle and kiss and talk to her until she fell asleep.. Until they put her to sleep.
July 13th. The entire night she had been extremely fussy. Couldn't sleep. Her tube site (on the outside) leaked a few times. I just figured it was because they had just messed with it. But by morning I knew it just wasn't right. She had been trying to sleep. But there was just something preventing her. I thought I was overreacting, like I tend to do. So I called the on call pediatrician. He suggested I take her in to see them. So I did. Her doctor wasn't sure what it was. She said to take her to the ER and have them Xray to check the J-tube placement. So me and little miss Ana were off to the ER. I really hate going to the ER. Not only due to the long waits, germ filled people, people who don't need to be there, etc etc. But also because most of the nurses and doctors have no idea what to do for her. They usually have to call in a doctor who has already seen her before. And also because I have to explain Arthrogryposis to almost everyone, patients, nurses, doctors... I don't mind spreading awareness, however, when we are in the ER it is usually because she has some issue and I don't want to explain it 100 times. Or explain that no, she just has leg casts, not a spica cast. No, they are not to bring her legs down or relocate her hips, they are to bend her knees. The tubes you see are her feeding tubes. Nope, the only thing she takes orally is her binkie. *sigh* Sorry, it's just exhausting. More so when she is crying the entire time.
What was I trying to get at again? Oh yeah. So we get back to the ER 'room'. They actually just gave us a gurney in the hallway. The nurse was nice and after triage-ing us took us back rather then sending us out to the masses again.
The doctor took his time seeing us. Then said that he will have to confer with the pediatric intensivist, then get back to us. Meanwhile Ana's tubes are filling up with yellow... stuff. The ER doctor has no idea what it is.. Her bag had about 40 ML's. (just over an ounce).. What is going on!?!
So finally after a few hours and and xray showing things are in place, he comes over and says that we have to go upstairs and they will figure it out up there. And as I should know, this won't be able to be fixed as an outpatient. Um, excuse me? I did not think this is the path we'd be going down today. I hadn't eaten yet because I thought we'd be home after her appointment with her pediatrician. I didn't have my purse, extra diapers, food for Ana, nothing!
After a good chunk of time, the PICU (Pediatric ICU) doc sees her. Says she needs an IV because we haven't been able to feed her and she's dehydrated. FUN! It is beyond hard to get an IV started on this little lady. I honestly lost number of how many attempts were made. The doc said if they couldn't get one soon they'd have to do something where they stick the needle in her bone... I don't remember what it was called, but it sounded horrible. He was just trying to avoid putting her under anesthesia. I think an hour after starting, and about 5 people trying later, he finally got one in her foot. We got the IV started. But still no food.
In the end they think the balloon was just inflated to much for her little body. They believe it kept slipping and blocking things it isn't suppose to, causing food to come back out, and great pain for Anabelle. Also, her GI told us that they used the wrong J-tube. They were suppose to use a low profile J-tube, which would enable us to be able to hold her chest to chest with ease, have a medicine port closer to her so meds got to her faster, and not have a tube sticking out that can get pulled, wallow (again), etc. The first few days she was miserable. She was throwing up, non-stop crying, not sleeping. Then they figured her feeds where to much at once for her. So for about a week we played with her volume. The PICU doctor was threatening we'd have to use TPN. Luckily her GI is amazing, and has a few tricks up her sleeve. Typically babies eat 20 calories per ounce, however, she's bumped up to 45 calories per ounce. Unfortunately that isn't enough. So we've added a few medications to help. A few that are not cheap and not covered. Even with all of this she is still irritable. The GI has told us she thinks it's now because she is anticipating reflux, discomfort and/or pain, therefore she cries. The PICU doc thinks it's something GI related. So since no one can agree and figure it out, she is temporarily on Ativan. Awesome. My four month old is on an anti anxiety med. I have mixed feelings about it. And question if it is the right thing to do.
After 13 days, they finally let us out. She still needs to gain to be on the low side of normal. Another reason they started Ativan. If she is fussy and crying all the time, she is burning calories.
Oh. And today we meet with genetics. I thought that since we had an amniocentesis and microarray done that they wouldn't have much to tell us. Boy was I wrong. In short, he wants to do a muscle biopsy. And he was upset that they didn't do it while they had her asleep for this last ordeal. So in a few months they will put her to sleep for the fourth time and take a piece of her leg muscle and do a battery of tests on it to search for answers. The genetics doc said he wants to give her a break since she's been through so much so far. Thankfully!!
And! I go back to work in one week. YIKES! Luckily I think we have everything for her in check. And hopefully we can get some nursing set up soon to help while I'm away. It's been a long (almost) 5 months. And I know it's just the beginning. I'm just happy that she will get a break for a little while and hope that she can just relax and grow and be happy :)
It's tough to think that my little baby isn't healthy. It's hard to say that she is special needs. I always say that all I want for my kids are to be happy and healthy. And it's tough when I don't know if or when Anabelle is going to be healthy. Where we don't have a page full of specialist phone numbers, and have a list of meds she is or has taken, or tons of medical equipment laying around. I know things will be ok eventually. It's just hard at times to admit that right now they are not great. Thanks for letting me vent :):);)
With love,
The Polks
