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SO sorry! We've been overwhelmed with appointments, diagnoses, etc. I'll try to keep this as brief as possible (I failed), and I'll welcome questions. LOL I haven't even updated Milo's caringbridge site yet. Oh, well. I'm trying, I promise!
1. Milo was officially diagnosed with hypothalamic hamartoma. The docs were idiots all-around leading up to it, including not calling to tell us that we even had an MRI scheduled! This requires an overnight stay because of Milo's apnea. We got the call the day before from anesthesia, had to run around all day trying to get things done, then went in. The anesthesiologist-idiot. Just sort of took Milo without letting me say goodbye. Milo was hysterical. Not that he's usually happy about it, but not quite so terrified! I gave them a protocol from the hospital that specializes in these things, just in case. Glad I did. Afterward, the anesthesiologist told us that we should beg to go home because Milo seemed fine to him. Well, his heart rate was sky-high (which we sort of expected), and his BP was very high (NOT expected-it's usually LOW). He had problems breathing, extra breathing treatments, etc. We went home the next day with no answers about this. Not that the neurosurgeon could have answered. He came into the room (I didn't even recognize him), didn't tell me who he was, kept calling it "this thing," and texted the whole time. He didn't hear or chose not to answer any questions. SUPER livid with this guy. The neurologist a couple of weeks before said that she didn't want to follow Milo, either. The geneticist a couple of weeks ago said that HH was no big deal (kids die, end up in institutions, decline steadily, etc.). WRONG. I've since found out that MOST of the docs who see this condition get angry that the other hospital specializes...they think that BNI is stealing their potential for getting better at brain surgery on HH. Makes me sick to think about talking to any of these people ever again. So I won't. We're looking for new ones of all of these. In the meantime, I'm sending all of Milo's stuff to BNI for them to look at it to determine what we should do next. Nothing? Meds? Surgery?
2. Milo has had a terrible time breathing. Officially diagnosed with asthma, but VERY severe. He was on 5L of O2 one night, but still dropping to the 70s. He's now on 3 asthma meds, 2 meds per treatment, a treatment every 4 hours, round the clock. He had an emergency sleep study because of it, an x-ray, and blood tests. His x-ray showed extreme asthmatic flare-up. He's going to be a kid who goes to the ER a lot for asthma, it seems. Probably hospitalized many times for it. I trust our pulmonologist more than I've ever trusted ANY doc. He's watching out for Milo. The sleep study looked OK, but Milo didn't really get good sleep, and his head was held back by the head wrap. He most likely needs a complete adenoidectomy, instead of the standard shaving he had earlier this year. (This will add to speech problems for him, since he has palate issues.) He may need another surgery for his airway. We'll see. Of course, we're now holding our breath (no pun intended) with this respiratory illness season coming up!!!
3. Milo now has an official food allergy. He has to be on Pediasure for his tube feeds. We got strawberry for those rare occasions when he actually eats by mouth. He had a weird rash, just a small one. We considered that it might be the red dye. Off and on, he's had it, had some severe digestive issues (to be not so gross about it), a small rash. Well, DH wasn't looking, gave the strawberry Pediasure to him in his overnight feed the other night. Yesterday, a bleeding diaper rash, lots of coughing, a rash on his arm, and nausea. He pooped all day, his rash pretty much sloughed off to leave nothing but raw, bleeding diaper area (including on his genitals), and it's no better today. There's nothing they can really do right now for it. I feel SO badly for him. OMG You just wouldn't believe what he looks like.
4. Kannon's reflux has gotten worse, but he WILL NOT take the liquid med, and our ped won't prescribe pills for kids. Kannon WILL take pills, but he's now the size of a 5 year-old (he's just turned 3), and we CANNOT hold him down for the liquid. The medicine tastes terrible. I'm an adult and I wouldn't touch it. You can't mix it to hide the taste, either. It's THAT BAD.
5. Kannon may have allergies. He's on Zyrtec, but I don't know that it's helping. He doesn't sleep, he's pale, doesn't get color in the sun, his eyes are red, and his behavior is that of a kid in serious need of a nap. You can tell that it's because he's tired. I don't know what to do about it, but we're hoping that something works. They already took tonsils and adenoids, so I'm not sure what's left. Don't get me wrong-he's super-sweet and cute and playful and still VERY good for a 3 year-old, but he's so darn tired ALL the time!
6. Both kids have decent hearing problems. It MAY be just tinnitus with Kannon and ear infection issues with Milo, but they're testing in December, just to make sure. You can be a foot away from Kannon's face, offer him candy loudly, and he just looks at you and yells, "WHAT DID YOU SAY?!" So it's not a listening issue, as his ped tried to pass it off as.
7. Milo is now in OT (has been for a year) and ST (2 months), and will be evaluated for PT soon. He's been using his hands to move his smaller leg around. He drags that foot sometimes. When he has the followup head MRI, they're going to do a spinal one, too. If it gets worse before then, then he'll have one sooner. His legs are different lengths (common in RSS kids), so he's already having some balance issues. Even with growth hormone, he's still hypotonic and out of proportion, so he'll need the PT. Yay! I'm glad that he'll be in all 3 services. Can't hurt, right?
8. For good measure, because his problems aren't always visible and God knows we need an outward sign of his troubles, Milo split his head open tonight on a chair. Of course, it bled like it was worse than it really is, but WOW it's still pretty bad. Poor kid.
That last one was just an I-feel-so-guilty-and-like-such-a-bad-parent-adding-injury-to-this-kid's-problems bullet point.
I'm missing some stuff, and I'm leaving out the other stuff going on with DH, my family, and me. Wait, nothing wrong between us, just the stuff that's happening. Does that make sense?
So, sorry that I haven't been around, but there's what's been going on, just with the kids. I'm going to try to be on more, I swear!
I am so sorry you ahve so many things going on and not great doctors, I don't know what the BNI stands for, but I hope you can maybe get Milo into a children's hospital, our nearest one is a little over 2 hours away, but the care is about 100 times better than anything local, so it's worth the trips there.
jess, just come back to ohio and we'll fix you all back up. sorry, I knew all of these things so i thought it best to make a joke, well cuz thats what we do. Love ya, and to quote a great friend of mine, you know where I am if you need me.:-p
Forgot to reply...sorry. If my head weren't screwed on right now.... LOL
Thank you for your replies, ladies! We'll do fine, I'm sure. Everyone was able to get out for Halloween last night, so I think that's a victory!
BNI-Barrow Neurological Institute. They're the only place in the US that really does this surgery correctly for HH. If we are going to have it done (they'll do a free consult-WOOHOO!), that's where we'd go...not here. Nope. Not even a consideration. LOL