Jaime's Hospital Update

Somewhere along our trip, Jaime turned 15 months old. When weighed and measured in Cincinnati, he was 30 inches long for sure, but each weight, each scale, each day was a little different. He was nothing less than 20.04lbs and nothing more than 20.10lbs. So you can be the judge of how much he "really" is! He's growing....S-L-O-W-L-Y! He's in the 3%tile for weight, 20%tile for height and his head is 18 1/2 in. which is in the 50%tile! This is pretty much our saving grace! As long as his head is growing nicely and if Jaime is staying on HIS curve, we don't have to get a g-tube! We actually spoke about it in depth with 3 different physicians. For now, we're going to try a new higher calorie plan. We will be slowly adding Boost Kid Essentials to his formula...the goal is to get him to tolerate 45calories an ounce. Our other goal is to find high fat/calorie foods that he'll tolerate. He is no longer eating baby food, just the Gerber Puffs and Freeze dried fruit which have virtually no calories. He likes carrots, but those aren't very fattening either...time to add butter and sugar to them! HA! Jaime's cardiologist would like to see some significant growth in the next 3-5 months, otherwise he'll be getting a heart cath! His echo and chest x-ray looked great...the best ones yet for him! :) However, you can't see everything on an echo, so if he doesn't start growing, the cath will be done just to make sure that his growth isn't somehow heart related!
As for our visit with the surgeon...whom we love...he's upset that Jaime's incisional hernia is larger. He's not eager to jump in and fix it just now unless he needs a g-tube...since we're not getting that (unless it's absolutely, positively necessary...way down the road), we're going to wait to have the incision fixed. When we do go to have it fixed, our surgeon said that he'll get plastic surgery involved to help with the repair and that he will most likely have to add a product (like the Goretex patch) to help keep it closed. We'll see! That may be in a year or two....unless we find that the hernia is inhibiting his motor skills, then it will be sooner.
Speaking of his motor skills...Jaime's PT wrote a long letter to his neonatologist explaining what is and what is not happening. After carefully evaluating Jaime...it has been decided that he will be getting AFO's. They're braces for his ankles and feet. His ankles are very tiny and underdeveloped compared to his calves and his overly enlarged quads. His dr. feels that if we can give him support from the bottom up, then maybe we can work better on core strength down. She will send an order in for the Spio or Beniks suit when the weather turns cooler. Apparently the support suits are really hot, so really there's no point in trying it out now. It has also been determined that Jaime is developmentally delayed anywhere from 2 to 5 months depending on the developmental area.
Having said that, we also learned that speech and feeding goes together. I mean we knew that before, but no one has specifically told us that once he starts eating better, he will start speaking better, too. I haven't written any new words because he hasn't had very many recently...as soon as his consistent eating slowed, his speech slowed. We'll get there...while we were in Cincinnati, Jaime ate Skyline chili...a 3-way. Well, several noodles, meat and cheese. We went with the Luken's and Toney's, let's put it this way...Jaime ate more than 9yr old CDH'er, Anna! (Sorry, Bev!) We thought it was kind of funny that he kept eating it! I was saying that he knows where he's from! HA!
Today (and last night) he ate Bob Evan's mini pancakes. Last night he ate about 1/4 of it, today he ate 1 whole pancake. The trade off....he won't drink his formula when he "eats" like that. His formula is what really gives him calories, though we did put butter on the pancakes for a little extra! HA!
OK...now on to the MRI....Jaime was put under general anesthesia yesterday afternoon to have a brain MRI. We, of course, do NOT have the results yet, but we did discover that his first MRI last July wasn't "normal." We're anxious to get the results. Everyone was a bit surprised that he hasn't had one since last year considering he did code a few times. Anyway, he did AWESOME with the anesthesia! He woke up the minute the nurse picked him up off of the MRI table. It did take 3 tries to get an IV started (in which, from a hemophilia standpoint, he recovered very nicely from), but once awake, he wanted his Pediasure. He wouldn't drink Pedialyte or water...they wanted him to have clear liquids before removing the IV. Finally, he was so fussy that the Dr. said we could slowly give him milk. He did just fine with it! We finally noticed that the anesthesia affected him when he went to bed. His coloring was really bad, so I put him on the monitor, his sats were in the 80's or very low 90's. The 90's were OK, but not the 80's. I had to put him on O2 last night. At first I started with 1/4 of a liter, but that didn't help, he ended up on 3/4 of a liter for most of the night, I turned him down to 1/2 at 4:00 A.M. I took him off of the O2 this morning, his sats were in the low 90's. His coloring isn't all that great yet, so I'm going to keep spot checking him throughout the day. He may be back on the O2 at some point. Plus, it's really hot here...there is a heat advisory, so we'll see how he does. The PACU nurse and anesthesiologist actually told me this could happen because of his respiratory issues. So, we'll just keep monitoring him until he's back to normal!
We talked about so much with the drs. at the hospital, but I think those are the main things, we're due back down to Cincy in 3-5mos, looks like we'll be there around Christmas time again!
I'm off to shower....we have a birthday party for a special little girl today! (Happy 3rd birthday to my niece, Sophia!)

I will get photos up when I can from our trip...by the way when looking at the mileage today on the van that we rented, we figured that we spent over 60 hours actually traveling in the car alone-that doesn't count traffic jams, time driving in the city, storms, just waiting in the car for whatever....that's just CRAZY to think about! I think that was our first and last epic journey! We will definitely travel by car again, but just not for that long. I must admit, it was kind of fun and it was SUPER GREAT seeing all of our friends and family along the way!

Until next time.......