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Thursday, March 29, 2012

complicated

I needed a laugh so I made this:
What can I say, girlfriend likes to do her own hair. :)

This has been an exhausting week in many ways. So much to do, so little time, and so many interruptions. Having Raya get sick threw me for a loop too. It was a strange little illness that was gone in less than 24 hours, but it left me with a bad taste in my mouth. Before Raya came along, I would have never thought of dragging any of my kids to urgent care late at night just because of a 104.3 fever. The ONLY time I ever did that with any of the other kids was when Ashtyn was 11 months old and had been sick and then spiked a high fever and it turned out she had pneumonia so it was a good thing I took her in. Perfectly reasonable.
So then there's Raya. Because of the many months we spent searching for a diagnosis to explain all of Raya's vomiting and everything, I've spent so much of her life worrying about every new symptom and every old symptom that flared and wondering if it was a sign of something serious happening inside her body. I'm now realizing that thinking that way is a hard habit to break. The reality is that as far as anyone knows, she no longer has any major underlying health concerns. She's not immune deficient, she doesn't have heart or lung problems, and her GI problems have significantly improved over the past 6-12 months.
When we were at the urgent care on Tuesday night, it turned into another one of those unpleasant experiences where I go in feeling justified in being there and leave feeling like an idiot. I took her in because it was only the 4th time in her whole 2 years and 4 months of life when she's ever had a fever above 103. The first one was when she was in the hospital after her G tube surgery, the second was a year ago when she had an ear infection, and the third was a few weeks ago when she had a sinus infection. Because she's only had high fevers when she had some type of infection, I was concerned and I had a commitment on Wednesday so I couldn't take her in that day.
Anyway, we got to urgent care and they took her vitals and then the doctor came in and started asking me the routine questions. What are her symptoms? A high fever and a little bit of a stuffy nose. How long has she had the fever? It started this morning and got higher. How long has she had the stuffy nose? A day or two. Has she been vomiting? No, but she's on meds to help control that. Does she have a cough? No. Does she act like her ears hurt? No. Does she tell you it hurts when she pees? Um, she's not potty trained and doesn't acknowledge when she pees, so no. So pretty much just a fever and stuffy nose? Yes, I brought her in JUST because of a fever and stuffy nose. Etc. Then he examined her. Chest is clear, nose is congested, ears look great, could be a UTI but it really just looks like the flu.
This was the part where I started to feel like an idiot for going there. I sat there thinking that this doctor now thinks I'm "that" mom. The one that acts out of fear and paranoia and rushes the kid off to the urgent care at the first sign of illness. It was getting late and I kind of didn't even care anymore, I just wanted to go home and keep doing what I had been doing for her. When he came back in and told me that her urine was clear and that I didn't need to worry because she definitely wasn't dehydrated, I wanted to yell, "That's because I'm NOT an idiot and I've been giving her Pedialyte for the last 5 hours to keep her from GETTING dehydrated!" But I didn't. I politely told him that I wasn't concerned about dehydration because of the Pedialyte she'd been getting all evening. (the ONE benefit of the G tube besides the obvious sustaining of life because of refusal/inability to eat)  He prescribed Tamiflu but said he wasn't sure if she really should take it because although it shortens the life of a flu virus, it can also cause vomiting. I filled the prescription but didn't give it to her. Instead, I sat down at the computer at midnight that night and emailed her GI doctor to explain what was going on and ask if she thought the Tamiflu would be okay for Raya to take and then got Raya settled in and taken care of for the night around 1:00am.
Wednesday morning she was still slightly feverish but was feeling much better. She took a shower and that seemed to recharge her. The fever was gone and a little bit of snot was all that remained of the mystery virus. I've since come to the conclusion that whatever she had was at least partially flushed out by the 14 hours of Pedialyte that I gave her, yay me. In the late afternoon, I emailed the GI doctor to tell her "never mind about the Tamiflu" but she didn't see that until after she had already responded to my overly tired and emotional midnight email. Her response made me feel sheepish. I hate that. I felt a little better when 2 minutes later she emailed me again and said that she saw the second email and was glad Raya was feeling better but I still felt dumb for asking her about the Tamiflu because she said she wasn't comfortable advising me on that and to follow up with her pediatrician about it. I'm not comfortable following up with her pediatrician who has only seen her for "well-checks" and the very rare illness, which is why I asked the GI who has seen her much more frequently and is much more familiar with her body & digestive system than the pediatrician. Why does everything have to be so complicated?!? I'm glad Raya's feeling better, but it bugs me that when she gets sick my brain automatically assumes that it's because of her medical history and I should be more concerned with her than with the other kids.

So all this time, I've been doing my best to keep Raya in a bubble to try to protect her from whatever I thought she needed protection from. What's come of it is that she's not used to going places like church and really anywhere but therapy and the park, and she's still managed to catch several colds and whatever this strange virus was. It makes me wonder if we're doing the right thing by "protecting" her and if she really needs to be kept home as much as we do. If she's still going to get sick anyway, what's the point? I try to remind myself that when she got sick a couple months ago it set us back pretty far on her eating and sensory issues, but I still can't help but feeling like I need to do a better job of treating her like a typical kid. Ugh. again, why do things have to be so complicated?

Speaking of complicated, we found out today that our authorization for the 2nd hour per week of OT had not been extended like I thought. I was told last month that it ended on March 30th but that if I called our coordinator when we found a therapist to take both hours of therapy, she would extend the auth. I left her a message but apparently for whatever reason she couldn't or didn't extend it. That leaves us in the position of A. having to justify & beg & plead to keep the 2nd hour, and B. prove that it's absolutely necessary to keep having therapy in clinic instead of at home due to changes that the early intervention program recently made that requires all EI therapies to be done at home. Honestly I don't think it's going to be a problem getting the auth extended and staying in clinic, but these days you just never know. We've been doing OT in clinic for over a year because nobody has availability for home OT. It's just frustrating because we thought the issue had been taken care of already and also because we're FINALLY getting Raya back on track and starting to make progress and this jeopardizes it. I'm kind of too tired to stress about it this week though, so I'm not.

Well, just so I don't end on a totally depressing note, here's a fun picture from a couple days ago when I realized Raya had painted her big toe with nail polish and was wearing a pair of her sister's underwear around her waist. She's fascinated with "pannees" but she's totally clueless about going potty. She asks me several times a week if she can go potty and I always set her on the potty but she's never gone. We are so far off from being able to potty train, especially due to the fact that tube-fed kids are generally well hydrated so they pee a lot. :)

 

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