Some days, I wonder why I even bother getting out of bed. Days like today have me beating my head against a wall, taken back, and really frustrated with disappointment. This morning started with that rather emotion-stirring drive up the hill to the hospital. This visit is to do a swallow study, #4 or 5, I lost track. However, you know you're there too much when you recognize everyone, especially Tom the radiologist, whom has been there for many tests from the start. After the swallow study, while we were reviewing the videos, the next team was setting up for their swallow study, and of course, we recognized all of them too. "Hi Steve!" I wish I was exaggerating, but, I'm not.
Andi's swallow study didn't go as well as I would have liked. However, today's exam showed that Andi's tonsils were large, and almost an obstruction. She asked if Andi snored. "Oh y-e-a-h she does!" I continued... 'she seems to work really hard while sleeping.' The speech specialist said the large tonsils were probably to blame. She asked if we'd ever discussed a sleep study, I said yes, it had been mentioned and we were just about to follow-up on that at feeding clinic on Thursday. She said, I think you should go directly to ENT and have them look, as it would bypass the need for a sleep study...the tonsils, as she saw it, are to blame. So, we came home and wrote our Dr. for a referral to see the ENT at the hospital who did her last choanal atresia revision and ear tubes last September. We asked to bypass the whole KP (Kaiser Permanente) ENT system, and just stick with the hospital. If there is a surgery to remove the tonsils, the hospital is the only one that will touch Andi, so why not keep us up there and consulting with those whom will be doing the work. So, sitting around (this was yesterday, as I didn't finish the blog)... I kept thinking how that was the 4th or 5th swallow study. I'm wondering if her tonsils were large on those previous studies and we just didn't see it, or if this is a new issue, maybe brought on by allergies or such? This is something I will be asking tomorrow at feeding clinic. In any case, the referral is in, and we're just awaiting the scheduluer to call us for a consult with the ENT. Yea, another appointment! But wait... it gets even BETTER! Remember, this post is entitled, "Beating My Head Against A Wall!" Yesterday afternoon, we had our consult with a Urologist. At 2 months old, Andi was admitted to the hospital with what turned out to be a UTI. We had a VCUG (Tom did it!) and it was determined she has bladder reflux, grade 3. (1 = mild, 5 = severe). Bladder reflux is when the muscle that controls the tubes doesn't squeeze tight and it allows urine to go upward, and shoot from the bladder into the kidneys. It's generally considered muscle weakness. The easiest, most effective way at managing this and preventing UTI's - which can lead to scarring in the kidneys, is a prophylactic or as we know it, an antibiotic. Andi has been on a low dose antibiotic (amoxicillan) since August 2010. Initially, they told me that kids tend to outgrow the reflux (as the muscles grow and strengthen) and so, I asked our pediatrician to refer us to urology, so we can start that dialog to see if she's possibly outgrown her need for antibiotics. As I've really outgrown the need to go to the pharmacy every two weeks! This Dr., whom I will call Dr. P, (yes, I'm perpetually 12 years old), was rather on the ball. He works clinic on the other side of town at Kaiser, but, he also works up at the hospital three times a week. He said he wished our paths had crossed sooner, as he could've had our new VCUG prior to the swallow study, and had them all done on the same day. In any case, we're doing a new VCUG and ultrasound to check her kidneys, her reflux, and he took her off amoxicillian, and put us on a new antibiotic. He is going to save me a trip back out to B.F.E. and have our follow-up scheduled up at the hospital, in conjunction with the VCUG, which is mighty considerate.
I'm beating my head against the wall because it's a lot to deal with all these appointments, and our need to see specialists. I try to keep everybody on the same page, and yet, I still feel like we still slip through the cracks in the medical system. We are very versed in both the Kaiser and hospital personnel and systems, yet, those two systems don't work together in conjunction to spare us any oversight. For example, the hospital system thinks Andi needs to get current on a lot of vaccinations, yet, we are current - but it's in the Kaiser system. Or when we go up to the hospital for something, we have to bring them current on all the appointments we've done at Kaiser. Kaiser can look into the hospital system, but the hospital staff cannot look at the Kaiser system. Well, unless a Kaiser physician on-site grants them temporary access to review a file or such. At some point, I would hope that these two systems would talk to one another, yet, my suspicion is that it is due to security issues on the Kaiser side. For patients like us, whom are eight people deep on both sides, this lack of a complete visual on all things Andi flat out sucks.
Lastly, Andi only weighed 17 lbs, 5.5 oz's, which is down. I've given her Nutella and ice cream in between breakfast and lunch. Hopefully, it will help. But more so, I hope that we figure out what is causing her to work so hard sleeping, if it's the tonsils, bring on surgery #7... and let's allow her to at least hit 20 lbs by her birthday for crying out loud!!! Hopefully we can get some answers and all the powers that be can align and let Andi thrive for a change. This stagnate one step forward, two steps back is so frequent and overdone that might head might actually break through the wall.
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