|JOURNAL FOR 2011|
Thursday, April 28
So update email. It’s been a long time, but I’ve been sort of waiting to get everything together before I send anything out. The doctors’ appointments have been rapid-fire for the last month it seems, and I hate that.
About two weeks after Autumn’s birthday, she asked to sleep with the bipap mask that covers her mouth and nose. She likes the nose mask, but her nose was stuffy, and the bigger mask feels more comfortable. Well, apparently she had a small ‘wet burp,’ it stayed in the mask, and caused some issues, to say the least. She started running a temperature a few days after that, no coughs, but just acted very lethargic. On one day she wanted to be on bipap almost all the time she was awake, her oxygen was 93 (her norm is 99) and she slept 16 hours out of 24. I called the pediatrician, was told hers wasn’t there, and was instructed with her diagnosis to go to Children’s Hospital and be evaluated for pneumonia. Well, I know Children’s likes to admit, give oxygen, and antibiotics automatically, and are not very supportive of the whole CoughAssist/bipap thing, so I opted to take Autumn to Oakwood Heritage hospital, which is smaller, thinking that if she couldn’t be treated there, we’d have her transferred to the University of Michigan Mott’s, where she is seen for pulmonary and where she had her tube placed.
Long story short, she had a chest x-ray, was diagnosed with early pneumonia, given an injection and some antibiotics to finish at home. We kept up with the CoughAssist, did Albuterol nebs and she was fine at the pediatrician for follow-up. Also note—her O2 was only below 96 for one day, and she read 99 before she was diagnosed with the pneumonia a few hours later. I thought pneumonia made O2 levels go down as a rule, but I was wrong.
So the real issues started about a week after the pneumonia. Autumn has been on continuous tube feeds at night since she got the tube in 2008, getting 50ccs an hour for 12 hours. She began throwing up like clockwork 2 hours after feeding, every time. Of course that means we RUN into her room, quickly unplug the bipap, flush and unplug the tube, get her into the shower, wash her clothes, change the sheets, then before we redo everything she gets a CoughAssist treatment just in case she aspirated.
Now I’m going to be disgusting for a minute, but I want people to understand what exactly we go through when this happens. Autumn is unable to turn her head when she is lying down, and when she throws up, it’s all over—all over her face, in her hair, on the sheets, pillow, everything. She also has food in her tummy, all liquid, it’s pink and chunky and smelly, so it’s a mess. And we have to HURRY, so she doesn’t choke, so this crap isn’t breathed in. It’s awful. And over a week’s time this happened every night. One Saturday it happened twice, and the next Sunday three times. I wanted to SCREAM, and my Autumn just looked at me and said, “Mommy, I’m sorry for making a mess.” I lost it. I’m never EVER cross with her about throwing up, It’s not her fault, I’m too scared to be angry, and all I think about is getting that crap out of her so she doesn’t get sick again.
So thank God for Facebook, where I was able to figure out that Autumn’s throwing up was due to gas. Some friends sent supplies to us so we were able to vent Autumn at night—meaning hook up a long tube to her tummy button and connect the tube to an open syringe so the gas is released. NO MORE PUKES. However, sometimes Brian and I lay awake at night, listening to gas coming out of the tube. It sounds like water boiling. It’s bizarre and frightening. And she is sound asleep.
So instead of the night feeds, we’ve been doing bolus feeds, 200ccs four times a day, a good glassful. We just hook up the tube, and pour the formula into the open syringe, and gravity pulls it into her tummy. Once when she wakes up, once after school, once before bed, and once before Brian & I go to bed while she’s asleep. It’s working fine, gas isn’t a problem at all when she’s awake, but even with Tums and simethicone drops (baby gas drops) she’s still having issues. And at the well-child check at the pediatrician’s we discovered she’d lost two pounds, most likely from all of the throwing up before we started bolus feeds. Pediatrician recommended going to see a GI doctor, so that’s where we were today. Left before 1 pm today, came home at 6:30. Yeah, this sucks.
So no concrete answers from the GI doctor. He said sometimes after an illness the body produces excess gas, nothing you can do about it, and it will eventually go away. The other theory is that as Autumn has grown the ‘end’ of the tube in her stomach blocks the food’s access to the intestine while lying down, which causes gas. Waiting for a call next week to schedule an upper GI to check for that. Autumn will lie down, wearing her bipap, and the dye will be put through her tube than x-rayed to see where it goes. Pretty easy, Autumn had one before her g-tube surgery (she drank the stuff) and thankfully it is not painful, nor does it involve any anesthesia.
And we saw a nutritionist to figure out how to put some weight on Autumn. Drives me bonkers. Of course I got the ‘No, I’ve never dealt with a child with SMA before” and “Wow, I’ve never had a child on Vivonex for tube feedings before.” Frustrates me. I brought in a copy of her feeding plan that was drawn up on Excel to show how much and what of she was getting. Didn’t have the latest blood draw results but that was just done on Friday. (Her blood draws have always been spot on, except for last time when her vitamin D level was too high. Remedied that by only giving vitamin D every other day.) Went through the NO dairy NO meat NO milk-based protein shakes. Hard to explain to someone who isn’t with Autumn every day, but whenever she has more than a bite or two of something with ANY animal protein in it, fish included, she gets sweaty and stinks—it’s like her body has to work extra hard to burn off animal protein, and thus uses even more energy and calories. Kinda like Atkins, and that’s why we use Vivonex. Vivonex contains amino acids, which are proteins broken down and easier for her body to digest.
So the extra calories will be coming from peanut butter, olive/flaxseed oils, veggie burgers, olives, stuff like that. She’s not in dire straits by any means, but the docs just want her to have more calories to catch up. She’s so tall though—85-90th percentile for height, and seems to use the calories for that. Doc said to keep up with the bolus feedings and don’t worry about continuous night feeds, which is fine. We’re going to be reducing the amount of water in the formula and increase the amount of juice. Normally it’s 500cc water/500ccs V8 Fusion juice, but we’re going to 250/750. That will help too, especially since eating for Autumn is hit or miss, she fatigues so quickly, never gets hungry, and has a laundry list of things she can’t chew. Thank goodness she doesn’t yet have any swallowing and choking issues. That’s very common with SMA, and so many families struggle with that. Their kids can’t eat, if they do they choke, throw up, and end up with aspiration pneumonia. It’s part of the disease, and almost universal in children with type I SMA. Scares the crap out of me, but thankfully we had the g-tube done, and even if that becomes an issue, we never have to worry about nutrition.
And Autumn is doing GREAT. She is so good with the machines, mouths off, is fiercely independent, fights with her brothers (well, just Aaron!), loves school, makes friends wherever she goes, and is an all-around awesome kid. This pneumonia was caught early, treated at home, and was the FIRST EVER, practically unheard of for a type II SMA kid. And now we have a Vest airway clearance system (Google that if you’re interested) and a suction machine for when she does get sick. Hoping we don’t have to use the suction machine too much—snots and boogies sick me out, and I have problem when Autumn spits after her brushing her teeth. But whatever. We’ll do what we have to.
This disease is taking SO MUCH TIME away from my family. Brian and I can’t go out alone on ‘date nights’ in case Autumn throws up. Vacations don’t happen, too much crap to travel with, and Autumn only can be transported in her powerchair. I hate that SMA makes her so fatigued so bedtime prep starts at 6pm in order to get all of the treatments done. And this doctor stuff is crazy. I joke that I need to quit taking her since every time I do there are always two more appointments we need to make.
Again but whatever. We do what we have to do. Some families can’t leave the house, some kids can’t sit up without choking, some kids can’t breathe well enough to talk, some kids spend more time in the hospitals than at home. But don’t tell me “I could never do that, I could never do what you do.” I HATE that. And you would. You’d do whatever you could to keep your kid healthy and improve their quality of life. If you didn’t you’d be a crappy parent who didn’t deserve children in the first place since there are no guarantees. And you would also do whatever it took to keep your sanity intact so you are better able to navigate this whole mess. My daughter didn’t ask for SMA, and my family didn’t ask for all of the crazy shit that comes along with it. But I love her, I love all of them, and we’re managing quite well, thank you very much.
Friday, June 24
Here goes, another update…
So school is done for 2/3 of the kids. Harrison will be in 6th grade next year, and Autumn will be going into 1st. It was a good year, and I’m so proud of how the kids did. Harrison’s overall grades were A- in English, Language Arts, Math, Science, and Social Studies and Art, a B+ in Reading, and As in Music, Gym, and Moral Focus/Conduct. For his progress report he scored in the 95th percentile for Math, 99th for Reading, 99th for Language Usage, 85th for General Science, and 84th for Concepts and Processes. He won awards for Honor Roll and Behavior.
Autumn did very well too. K indergarteners score on a scale from 1-4 rather than letter grades, and she got 3s in Basic Skills, Language Arts, Mathematics, Science, and Social Studies. She received a 3.5 in Art, a 2.5 in Reading, and 4s in Music, Gym, and Moral Focus/Conduct. Autumn also received awards for Behavior and improvement on tests.
Here’s why I LOVE this school, why their program works for my kids: Autumn tested in low, very low. She didn’t have the best start with preschool, at the Taylor school district tried to strong arm me into putting her into a school for special needs kids. I knew that this would be a bad idea, so we ended up bouncing her around for awhile for preschool, and settled on the Child Development Center at the University of Michigan. Great program, but play-based and run more like a daycare than a preschool, so she was a little behind academically on the testing. In addition, she wasn’t very good with a computer mouse since our computer isn’t in a place where it’s very accessible to her. So after a year in school and some practice on the computer here are her results. Took me a minute to pick my mouth off the floor. In Math she tested in at the 23rd percentile, but rose to the 92nd percentile. In Reading she tested in at the 1st percentile and rose to the 99th!!!!!!!! Now that’s some TEACHING! And needless to say I am 100% confident that Autumn won’t have any problem learning and that a ‘regular’ classroom in a ‘regular’ school is the most appropriate place for her.
And Mr. Aaron will be starting at a co-op preschool in the fall, going 3 days a week. He’s smart too, and I know he’ll be a hit in kindergarten.
Medical stuff now. Sigh. Autumn is still gassy, and must be vented at night when she sleeps. Her bipap is causing the gas since her pressures are so high, but she needs that to sleep. Brian & I can’t feed her continuously with the feeding pump because she pukes, and we worry about her aspirating and getting pneumonia. So we’ve been doing 200cc bolus feeds 4 times a day—dumping her food mix right into an open syringe and letting gravity pull it down the tube into her belly. Seems like a huge amount of liquid, but she handles it just fine. She’s getting the calories and nutrition she needs just in spurts.
Of course with all the pukes/gas/weightloss we made an appointment with a gastroenterologist just to make sure there wasn’t anything wrong with the tube since she’s had it for almost 3 years. Our 1st appointment the guy was nice, but sent in this crazy nutritionist (allllll of them are crazy, and none too helpful) who didn’t know a thing about SMA, never even heard of the formula we had Autumn on, and didn’t listen to a damn thing I said. Autumn was 37 pounds, a little underweight, but not so much for a child with SMA since she has much less muscle mass than a ‘typical’ child. She lost a pound from a year ago, not good, but when I tried to explain that this was a result of the pneumonia where she didn’t feel well enough to eat orally and we couldn’t tube feed her because of the pukes, it just fell on deaf ears. Anyway, Autumn was weighed in at 43 pounds yesterday, which was good, but that’s an awful lot of weight to gain so fast. Can’t win. Sigh. I told the nurse not to bother sending in the nutritionist, since all she wanted was to see numbers on the scale and didn’t listen anyway. I handed her a copy of Autumn’s most recent labs, which of course were perfect, and was told that she was fine. And her upper GI, which was performed with her bipap on, and barium pushed through the tube showed no abnormalities whatsover. I was sent home with no explanation as to why she was so gassy, but given a pat on the back and the keep-doing-what-you’re-doing speech. Sigh. At least Autumn was a trooper, but I’m pissed that this appointment amounted to a 5 hour weight check. So I guess our deliveries of tube supplies won’t include feeding bags, and we can put our IV pole and pump away.
Tomorrow Autumn is going to MDA summer camp. She’ll be gone from Saturday until Friday, and we won’t be staying with her. I managed to get all of her supplies in a big Rubbermaid tote and a large duffel bag. We have to drag along the CoughAssist and bipap, so we’ll be using a wagon when we get to camp. All this stuff is heavy. And I’m not worried about Autumn at all, that girl is SO social and SO friendly. She’ll cry when we pick her up. Fingers crossed that the equipment makes it home in one piece. The guy who does her braces has a daughter, Katie, who will be with her the whole time to help. Katie came over this week and met Autumn, and the two hit it off immediately. It helps that Katie knows how to make bracelets and likes to braid hair. Brian and I showed her the ropes on equipment, and today I spent some time writing little cheat sheets for her on routine and how to handle everything. She’ll do fine though, and MDA staffs the camp with doctors, nurses, physical therapists, respiratory therapists, wheelchair repair people, etc. She’ll be better taken care of there than at home.
And here are some pictures. Enjoy. I’ll have more from camp, I’m sure, and for those on Facebook, more are posted there.