Monday, February 11, 2013

Wyatt

So Wyatt has not been growing. Which didn't really have me concerned since we are kind of a small family. But then it was months and months without any growth and the kid shovels the food in. I think for the first little while the pediatrician was just like, feed the kid more, easy fix.  But he really eats quite a bit. There are many meals that he eats more than Addie and then finishes off her plate. And he poops all the time and he can be so happy and then so crabby. And his skin itches a lot. So we decided to see a specialist. They gave me a couple of numbers to try and wanted him to get in as soon as possible. I called around and some places had like a three month wait and one place we were able to get in the next week.
When we went to the first appointment, the nurse practitioner walked in and immediately said, "that is a celiac baby." It kind of threw me off. She asked us if thats what we were expecting but it really wasn't. He had already had a blood test that had come back negative so it wasn't even in my mind.  But as she talked with us, there were so many things that rang familiar. Apparently, because he is so young, a blood test can come back with a false negative and we do have multiple cases of it in my family.  She mentioned getting a biopsy done to verify it but we kind of felt like just taking him off gluten would be the best way to go. I was still kind of in shock about the whole thing. The dr was super animated and sent us home with probiotics and a couple of fact sheets.
So after we get home and have lots of friends and family and internet input, we discover that if we take him off gluten before getting a biopsy done it will most likely be worthless to ever get one done. (Which is the main beef I have with the first dr- I wish she had mentioned that to us at the very beginning. I think we made it clear that we would eventually like to get it done but wanted to try taking him off gluten first. Otherwise, I felt she was very caring and helpful)
So now we have to keep him on gluten until we can get a second opinion and schedule a biopsy (after some great advice on how its not quite as scary as I first felt it was-but still scary!). He was only off of gluten for one day but it felt like he was already feeling better and when we put him back on it, I felt like he grumped up again. So it was really hard, wondering if the food I was feeding him was hurting him. We scheduled another appointment with Primary Childrens this time. It was just a couple of days after Chops surgery and during one of the raging snowstorms. And since Chops was still taking his meds...I got to drive :)
The second dr had a peon(can't think of the right word so I'm leaving it at that) do most of the intake information and then he came in towards the end. The difference between him and the first doctor was large. She was bubbly and talked the whole time and was SO sure he had celiac and he kind of sat back and didn't say much. We were really hoping for a big confirmation, yes! You need to get this done ASAP! But it was more, I suppose, if thats what you feel you need to to, we can schedule it. So weird. So we set it up for a Monday, in the afternoon...I asked if we could be put on a list if anyone cancels to do it sooner. We decided to have a different dr perform the procedure so we could do it earlier and in the morning. Which was a huge relief for me...how the heck am I supposed to fast an 18 month old into the afternoon?!
So we had a little over a week before the procedure, and it was such a fun filled week! Wyatt got progressively more sick to where I ended up taking him in on Friday...and then again on Monday. I was pretty worried that he wasn't going to be able to get the procedure done if he was as sick as he had been, and lo and behold he wakes up on Wednesday feeling much better. They told us that if the anesthesiologist didn't feel comfortable with him doing it they wouldn't go through with it but that was fine by me. I felt like he would probably be able to, as he had gotten so much better.
Thursday morning we wake up at 4:30 so we can be to PCMC by 6. He slept the whole way up and was pretty happy for getting woken up early and being at a new place. We waited for a while but the nurse checked him out and he got gowned up and moved to another waiting area. There were so many babies and kids there waiting for surgery. I was so grateful that Wyatt hasn't had to do anything else, and his procedure was pretty mild. There was a nine month old getting eye surgery and a cute little girl getting some kind of organ surgery. She got a little doll that she could draw on and Wyatt eyed it so they brought him out one. Later that day we went home, Addie saw it and said, "you're not supposed to draw on babies, you're supposed to draw on paper!" I explained to her what it was for and she immediately claimes, "I'm really sick, I need to go to the hospital!" Oh, I love her.
So, the nurses informed us that the doctor would be taking him and giving him gas and then the IV once he was out and asked if we wanted to give him a sedative before they took him so he wouldn't cry as much. It was here that I burst out in tears. I wished that I could hold him as he fell asleep so he wouldn't cry. I knew that he would because he is kind of a momma's boy anyways, so I can imagine how he felt in a scary place with the nurses already bugging him. I wanted him to be calm, but I also wanted him to be able to come out of the anesthesia without too much else in his system, so we didn't give him anything extra. The anesthesiologist checked him out and gave him the green light so it was time to walk him down. I got to snuggle him a couple of times and then just walked away.
We went to the waiting room, and didn't have to wait too long. The procedure was only about 20 minutes so not bad. While we were waiting, there was a family that came in for an emergency surgery and were expecting it to take several hours. I just kept counting my blessings.
 Getting suited up-those hospital jammies are scratchy!
 Coming home
They let me go in first when he was waking up and I was suprised at how alert he was already. He was pretty mad that he had the IV and the pulse ox and the blood pressure cuff. I could tell his throat was sore, but it was also still kind of sore from his sickness too. We snuggled for a while after we got him to  calm down a bit and forget about his IV. The nurse that was checking in on us kept laughing at how opinionated he was about everything. He would stare her down whenever she had to do something. He had to drink something before we could go (his oxygen was really good the whole time, I joked with Chops that he had to stay in recovery longer than Wyatt did, but I'm sure he got a bigger dose of everything). We finally convinced Wyatt to eat some popsicle as I drank his slushie and once he started he was like, "hey, this isn't too bad. I get to watch PBS kids, mom's snuggling me and I get treats." He did end up throwing a fit and spilling his second slush all over me, but we were able to head home pretty early and he was really pretty happy throughout the day. After it was over, I realized it really wasn't as big of a deal as I felt it was but I was really glad for it to be over. We are still waiting to hear back the results but we have taken him off gluten in case we need to anyways. Sometimes it is really hard and some days it hasn't been too bad. I do think it will be easier to just feed everyone the same because Wyatt will see someone has something different and he wants it too! Apparently we share a lot in our family.

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