Yesterday we had Olivia’s appointment down at U of M Children’s Hospital. I went into the appointment SO optimistic. I really thought that they would just be confirming what out peditrition and ENT had diagnosed as Laryngomalacia. I thought that they would just check, confirm, tell us that she would grow out of it, and send us on our way.
I was wrong, WAY wrong.
We started the morning in Radiology. They were going to do a GI Chest Fluoroscopy and a Swallow Study. It was so sad. They strapped her up on a wall for the invasive x-ray part. She just hated it. She was screaming so much that she was turning purple. Next they strapped her to a board and strapped her head down, legs down, and arms above her head. She looked so uncomfortable. The made her drink this white chalky looking stuff and looked at how it went down into her tummy. She hated it and spit most of it on the table.
Next we were off to see the ENT. I was still optimistic at this point, b/c the Radiologist said that things looked good.
Once we got in to see the ENT they were nervous about her weight (or lack thereof). I have never been too worried, b/c Blake was a peanut too. She IS gaining weight…just not very fast. The ENT took a scope and went up her nose and down her throat. Right away you could see a big mass at the base of her trachea….this is where things went downhill…fast.
He said that he would have to remove it. BUT, before removing it he needed to make sure that it wasn’t her thyroid. I guess that babies start out with their thyroid up in their throat and then it descends to its regular position before they are born. In RARE occasions it does not descend.
We had to have a nuclear test done to see if it had thyroid particles. This test was terrible. They had to inject her veins with a dye. They could not find a vein to get into anywhere. They tried both hands, then a foot, and then finally got it into the crook in her elbow. It was dreadful to watch that needle prodding around in her. Once the dye was in we had to get her to relax and fall asleep. Again they strapped her down and did the test. This test took quite a while.
After that we were back up to the ENT. This place is HUGE….so I bet we walked 5+ miles yesterday. The ENT confirmed what he said was GOOD news…and it was not her thyroid. SO, he went ahead and scheduled surgery to remove it……TOMORROW. This is just all so fast and scary. He isn’t quite sure how surgery will go…b/c he will not know what the mass is like until he gets in there. Hopefully it is soft and he can remove it. We worry that it may be hard, or have blood attached…there is also a chance that he will have to give her a tracheotomy during surgery. The thought of that makes me ill.
After scheduling the surgery we had to go to pre-op. An anistegeologist looked her over to determine if he could put her under for the surgery. He thought that he could…and mentioned a big vein in her head that would be good for an IV. I can’t imagine seeing her with an IV in the head .
Next we talked to Social Workers about what we were feeling and going through. I think that at that point I just felt confused and scared. It was just so much to learn ALL in one day. Like I said, I had NO CLUE going in. I think that it may have been different if I could prepare myself a bit.
Next we were off for blood work, to make sure that her counts are good enough for surgery tomorrow.
SO…we are home for a day…and then back for the long haul. They think that she will be in ICU for a few days…and then who knows. Please pray that everything goes as well as it can go over the next few days.