Raya got to have a visit with her surgeon yesterday. I like our surgeon but I hate going to the office because they always run SO far behind schedule. We sat in the waiting room for 45 minutes while everybody who came in after us kept getting called back (to see the same surgeon, btw). I was annoyed but still preferred sitting in the waiting room over sitting in a tiny exam room. Thankfully we were only in there for 15 minutes before he came in. I love my girls dearly but they're SO loud in those tiny rooms! Raya hoarded all the books and the chairs while Kaida sat in the stroller and played the DS.
We hadn't seen the surgeon in about a year (which was fine with me) but he still remembered us and commented on how big she's gotten since he saw her last. It's nice when doctors & nurses remember us because it makes me feel like they really do care. So the reason we went to the surgeon was because of the thick scar tissue that has built up around Raya's G tube stoma. I wish I had a picture of what a stoma should look like but I don't. Here's what Raya's looks like immediately after the tube is pulled/taken out:
It SHOULD be flat with a hole in the middle. You can see that there's barely even a hole left in the center because of all the scar tissue around it. This is creating unnecessary risk for Raya because if the tube was to come out when I'm not around, whoever is watching her at the time may not be able to get it back in. The last 2 times it's come out, I could barely even get it in and I've been putting her tube back in for 2 years now. (If you missed that saga, here's part 1, part 2, and part 3.) With Raya possibly starting preschool in the near future, there is a good possibility that the tube could come out at school. If the health aides are unable to get the tube in (if they're even allowed to try) and I can't get there within 15-20 minutes, the stoma could close to the point where a trip to the ER for a very painful dilation procedure or emergency surgery is required. So like I said, scar tissue=unnecessary risk.
We discussed the options, which are to A. go back to a MicKey button (because the tip is tapered and easier to insert than the AMT Mini One), B. go to a smaller French size AMT Mini One button (because it would be a smaller diameter), and C. remove the scar tissue. He asked me if she still needs the tube and I laughed and told him we're still 75-90% dependent on it, depending on the day, so Option D: tube removal was immediately off the table. :)
Option A is out because the MicKey button just plain didn't work as well for Raya as the AMT Mini One has. We had 3 MicKey balloons spontaneously pop on us (2 while she was sleeping) and the MicKey got pulled out SO much more easily than the Mini One. Option B isn't good either because we're already at a 16fr tube (French size= diameter of the tube) and I don't want to go to a smaller tube because we've never had the tube get clogged and I'd rather keep it that way. Having a smaller diameter tube increases the chance of the tube getting clogged. Additionally, I really don't feel like going down a French size would solve the problem because the stoma would close to the size of the smaller tube, which would not make it any easier to get the tube back in.
I don't love Option C either. For over a year, we haven't had any problems to speak of with Raya's stoma. She hasn't had granulation tissue for a long time and has only had minimal, minor infections that resolved without medications. I really REALLY hate to mess with such a well-healed, problem-free stoma. However, if we leave it as-is, we are risking a tube pull-out turning into an emergency situation. Her scar tissue has gotten bigger, and as soon as the tube comes out and you try once to put it back in, it starts to swell, which complicates the situation. As much as I hate to put her through surgery and the risks involved, I feel like it's what we need to do. The surgery itself is a quick, simple outpatient procedure. They'll put her under, take out the tube, cut off the scar tissue, and place a new tube. There is a strong likelihood that she'll develop granulation tissue because GT is a product of the body trying to heal itself. There's also going to be new risk of infection while it heals. We also discussed the fact that the scar tissue will probably return, but agreed that it could be a slow enough process that it could buy us some time and *maybe* she could be ready to have the tube removed by the time the scar tissue becomes a problem again.
I have waffled back and forth about this decision ever since her GI doctor first mentioned that she had a lot of scar tissue and that the surgeon could remove it if we wanted him to. At that point we hadn't had any problems with it and I didn't realize how abnormal her scar tissue was. I haven't seen anybody else's tubeless stoma so I didn't have anything to compare it to. Then the aforementioned incident happened and I started to really think about it again. THEN I was on facebook one day and there was a photo album from Mic-Keys on the Go with a picture of one of the boys during a tube change. I looked at the picture and my jaw dropped because that is not at all how Raya's stoma looks when the tube is out. There was still a nice big hole and a nice smooth edge all the way around his stoma. That was my turning point.
When I was talking to the surgeon yesterday I asked him if the ER would give her any kind of pain medication or anything to sedate her if we ever went in and needed a dilation. He shook his head no. That makes me so sad to think that any little kid that goes to the ER needing a dilation has to suffer through it with nothing to help with their pain, anxiety, or fear. These kids aren't dummies and they KNOW it's going to hurt. I could go on and on about how I feel about that but I won't. Anyway, he said that if it ever happened and we were at the ER, I could ask them to page the on-call surgeon and that if one was available, they could come and do it in the OR with IV meds. Hopefully we'll never have to do that but it did make me feel a little better about going to the ER and a lot better about deciding to have the scar tissue removed. The surgery isn't scheduled yet but hopefully we can get it done and over with fairly soon.
After we got done with the surgery consult, we drove around to the other parking garage so we could go in and visit our sweet little friend who is in the hospital again and probably will be for a few weeks because of an upcoming surgery. The girls LOVE her so during the surgery appointment all I had to say was, "Do you want to go visit your friend? Then you'd better behave!" and they would stop whatever they were doing. :) Raya loves her and prays for her every night and before her nap, usually without prompting. It's really sweet. I think some of these little kids with medical complexities have a natural tendency to gravitate towards each other. They're not really at the age where kids play together, so the girls gave her the little presents we brought her and that was about all the interaction they had. They were all pretty tired too. This was the best attempt at getting a picture of them together:
She LOVES her little friends and every time we meet another friend that has a tubie like Raya, she gets so excited. We're blessed to have several tubie families living near us. I'm so thankful that Raya gets to have friends who are just like her in that way and so thankful that my other kids get to be around all of this medical stuff and don't think twice about someone who is "different". As much as I would love to still be clueless about any of this and have my naivety and innocence back, I wouldn't trade the personal growth and the wonderful friends I've made because of it for anything.
We also got to say hi to one of our favorite nurses from the GI floor. We had her for 2 of our hospital stays and we (I) loved her. I think she was the one that was in the room when Raya said "blood pressure" (she was 11 mos old) and I'm pretty sure she discharged us once. You can't help but love a nurse that sends you home. :) She remembered us, which was impressive since it's been 2 years this month since that hospital stay.
When we left, it took us forEVER to walk through the hallway & lobby because they have projectors that make the hospital's logo move all over the walls & floor in the hallway and color-changing lights in the floor. Raya HAD to put her hands all over every single one.
Her tendency to get distracted by her surroundings has been MUCH worse lately. She starts to do something and then before she even gets started, she forgets what she's doing and does something else instead. Hopefully getting our house put together and getting back into a routine will help with that.
I've been thinking a lot lately about how truly blessed we are that things have turned out so well for Raya at this age. So many of the kids that we've "met" (some in real life, some only online) are dealing with severe, long-term diseases and disabilities that will shorten their life expectancies and make them prone to serious complications from simple illnesses throughout their lives. So many of our friends are having to face harsh realities and make heartbreaking decisions right now and my heart just hurts for them. Once you've seen the scary side of life and that wall of naivety comes down, you can't ever get it back. Sometimes I feel a little guilty going to the hospital to visit our friends knowing that it's been nearly 2 years since we were the ones being visited there. I know I complain about things and make mountains out of molehills sometimes but honestly, I understand how lucky we are that Raya's medical conditions are what they are and that all of the guessing and fiddling we've done with her treatment plans have helped her to get to this point. I couldn't be more grateful for that.
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