Pediatrician Appointment, RSV Shots and G-button Change

Kaitlyn had a 9:00am ped. appointment today. It was a regular well visit check up. I was not lovin' the early appointment, but we do love being the first appointment of the day!! We tend to miss more of the sickos this way! Kaitlyn weighs 12.6 kg and is 36 inches long. She is now 27 months. She's in the fiftieth percentile for weight which is really heavier than a child with SMA should be. Typically these children are kept in the 20th percentile or close to it. But she's between the 75th and 90th percentile for height. We put Kaitlyn on the AA diet last year in March and since then we have not changed a single thing except to add calcium, Vitamin D3, and 30mLs of prune juice to keep her regular. We have just been waiting for Kaitlyn to grow into her mix. So far no plateau! She just keeps growing and growing and growing!! We asked about reducing calories but our ped. isn't comfortable with this because she says that Kaitlyn is so healthy, and is growing like a weed and she hates to take calories away and make her hungry! Especially since she IS growing so fast, and doesn't show any signs of slowing down.

Kaitlyn has break down on her ear that we have to go see plastic surgery about!! Usually we get very superficial breakdown every few months and it takes a few days to heal. This current breakdown is not very big, but has never really healed up in over two months now. It looks really good most days then will puff up a bit and ooze for a day. We have off-loaded as much as possible, but Kaitlyn obviously prefers that side of her head and can still turn her head to lay on that preferred side. Our ped. gave us a stronger antibiotic cream to try in the meantime. But she wants us to see plastic surgery to be on the safe side, she wants to rule out that there isn't infection in the cartilage! I have made Kaitlyn three pillows now that have a hole in the center for her ear. This way she isn't putting any pressure on that sore ear, but can still have her way about what ear she wants to lay on ;o)

The last big thing we discussed with the ped. was Kaitlyn's Bi-pap settings. Now I know that typically this would be the job of the pulmo. but we have a little resistance in this department! We lost our original pulmo. that got us started on NIV. The pulmo. left now has the work-load of three pulmonologists, and no time for things he has to do a lot of research on. Contacting an SMA expert doesn't happen that much up here, especially when said experts are in the States!! Kaitlyn is still on the same settings she was put on when she first started using Bi-pap. While she has always done really well, she is getting bigger, and it only stands to reason that as she gets older the settings would change to allow her lungs to develop in as normal a manner as the machine can provide. What we have noticed the past few months is a general increase in her respiratory rate, while on bi-pap. Like she is trying to take in more air, but just getting it in the form of faster breaths. Kaitlyn used to spend at least a bit of every night in deep sleep riding the machine. Not anymore. Her RR on bi-pap is well into the 50's most of the night. She has NO issues with her lungs, all is clear, and she still seems well rested throughout the day. But she does tire really easy. It takes a lot out of her when we have a day of appointments.

Here are her current settings in case any REAL experts are reading (MOMS!):

Resmed VPAP III ST-A

Mode: ST
IPAP: 18
EPAP: 3
RR: 30 (back-up rate)
Rise Time: 150mS
IPAP Max: 1.00s
Max I:E- 1:1
IPAP Min: 0.4s
Trigger: high
Cycle: high


After the ped. appointment we headed over to the Children's Hospital for Kaitlyn's RSV shots. One in each leg. She doesn't mind this too much. A quick cry and then it's all done until the next month. Only one more round to go and then we are done until next year!!! Hopefully we will continue to get the shots! Our pediatrician is totally behind us on this front, so hopefully we will get approval again next year. These shots are really expensive, but a PICU stay for two-three weeks is WAAAYYYY more costly!!

In the hallway on our way to RSV shots we ran into our General Surgeon. He is a super wonderful man, who has gotten Kaitlyn through three surgeries so far and we really trust. We asked him if he had time to change out Kaitlyn's G-button. She's had the same button since last summer when she had her surgery. We kept asking if we shouldn't change the button, and everyone kept telling us to change it when it acts sticky or if it clogs. It never did these things. What we were noticing was blood flashing back into her extension more and more often, like there was irritation there somewhere. I suspected the G-button, but Tim and I were really hesitant to change it at home. We have two replacement buttons at home ready to use, but we KNOW Kaitlyn. She likes to be difficult!! (Drama Queen!!)

Anyway, our surgeon said to have him paged as soon as we were done with RSV shots and he would arrange to change the button out. He came to us...and he changed the button out himself...in a three piece suit!! VERY nice man!! BUT it wasn't a classic pull the old one out, put the new one in....OF COURSE!! He deflated the balloon on the g-tube, inside Kaitlyn's stomach, then he gave a pull. It budged but gave some resistance. He pulled harder and Kaitlyn really fussed. Then he gave a good tug and out the tube came with a bit of tissue, blood and yucky stuff around the portion of the tube that had been inside her stomach! The tube had been in way too long! But we didn't know any better (we do now!).

The tissue on the inside of Kaitlyn's stomach had grown around the tube a bit. The site bled for a minute after the old tube came out. But once the tube was out Kaitlyn didn't seem bothered too much by the site. Next the surgeon tried to put the new tube in! HA! Wouldn't go in! Tim and I are sooo lucky that we didn't try to change this tube out at home. Our surgeon had to run and get a guidewire and what he called a "stiffener" to help thread the new tube into her stomach! (The G-button is a very soft silicon material that I'm sure must be very comfortable once in, but not very sturdy for a tight push!) The "stiffener" didn't work, the site was too tight. He then had to stretch the opening and try again! The new tube went in the second time, but not without a pretty good push! He wants to do the next tube change in three months time. We say, "Gladly"!

Since coming home Kaitlyn has been a little fussy about feeds, but so far everything is fine. She went to bed well and seems comfortable.


Kaitlyn all ready to go to her appointments this morning! She always looks forward to trips out of the house. She LOVES going in the van. We always take all of her equiptment. Did I say before how much I LOVE this Max EasyS stroller!!!! Onboard....cough-assist, bi-pap, oximeter, feed pump with food, inverter, gel cell battery, mini DVD player, suction machine, and nestled on top....Kaitlyn!! We carry emergency O2 in the van.



This is the inconvenient way in which we have to load Kaitlyn's stroller. Fully loaded with equipment, Kaitlyn's stroller is very heavy....130-140 lbs !! It takes both Tim and I to push/pull this stroller up the ramps! Not ideal! But worth it to get Kaitlyn out of the house!