Sam Update

I recently realized I hadn’t given an update on all Sam’s procedures done at the beginning of June. No news is good news, right?! Pretty much…

As we suspected, Sam’s MRI was mostly normal. We have nothing to worry about. His pediatrician was a little worried about his head size only being in the less than one percentile. I wasn’t worried, his head fits his tiny body. The MRI only proved that.

All of Sam’s biopsies came back negative. Yay! They did find some gastric tissue in his esophagus, but that isn’t anything they are worried about. It most likely happened at the anastomosis, or in layman’s terms, when they connected his esophagus to his stomach way back when.

Both Sam’s GI surgeon and GI doctor were stumped on what was going on with him. It didn’t seem right dilating Sam would solve the retching issues for a little while. His GI doctor suggested Sam might have Cyclic Vomiting Syndrome as it seemed to be the only thing that would make sense at this point. It still doesn’t make sense why dilating his esophagus would seem to solve the problem the last few times, but for whatever reason it did. Bottom line, his GI surgeon knew that didn’t sit right with him so he consulted Sam’s GI doctor. Everyone is doing what they can, when they can. Trust me, I know they lose sleep over Sam.

After the day of unsolved mysteries, they decided to do two things. They started him on a new med that would treat the Cyclic Vomiting Syndrome, and also put in an order to do testing while he’s having the obnoxious episodes of retching. We are way past the time he would have terrible days of non-stop retching so the new med seems to have solved the problem. This time, like so many others, goes to show what happens when doctors collaborate. We are so blessed to have the care team Sam has.

Sam has been doing awesome. Now, knock on wood. His GI surgeon and ENT surgeon talked and decided they are very happy Sam is doing so well, but they would both like to see him do really well for two to four months before we talk about scheduling his next big surgery. That means Sam has to stay healthy along with very little retching episodes until the end of August. So far, so good.

We’ve never gone longer than a month without something going wrong with Sam. It’s been over two months since Sam’s had any issues! It’s kind of a weird feeling. There’s a part of me sitting on edge waiting for the next thing. And the other part is rejoicing and hoping/praying this will continue. Pray it does!

(To get email updates each time I post a new blog, click on the “Follow” pop-up at the bottom right of the screen and enter your email address.) 

Sam’s Procedures

20180604_112918

Well, it was another long day at what feels like our second home sometimes, the hospital. Although, we really didn’t get any answers, we all feel we have a good plan in place.

Sam’s ENT surgeon confirmed Sam still has a Type II Laryngeal Cleft. It’s a little deeper (worse) than he remembered, but that doesn’t mean the cleft isn’t fixable. However, he also made it very clear to us, until Sam’s GI stuff gets figured out, he will continue to stay in the background. He also up-sized Sam’s trach, now that he’s getting to be a big boy. This, and the bronchoscopy, was probably the cause of the more than normal blood he was coughing up after.

As far as his GI stuff is concerned, everyone is still puzzled. They took biopsies of his esophagus, stomach, and small intestines. This is to rule out any underlying issues. Until we hear more about the biopsy results, the plan is to wait and see if the retching gets bad again and then do some other testing. It’s never great to puzzle geniuses, but WHEN they figure out what’s going on, knowing Sam could help other kiddos, makes me happy.

We will hear from Sam’s pediatrician when the MRI results come back. Again, we feel positive the results will be normal.

As you can imagine, or might know, these days are very mentally draining. It starts with being prepared. For how many times I have had to do this, you would think I would remember to buy Pedialyte beforehand. I can’t tell you how many times I have had to drive to the store at nine o’clock at night to get the stinkin’ Pedialyte.

Figuring out Sam’s feeding schedule is the next step in order for him to be NPO, nothing by mouth, before surgery. For Sam, this means nothing by feeding tube, since that’s the only way he eats. Remember, I only taught Kindergarten, so my math skills are sub par. He can only have formula and clear liquids a certain number of hours before surgery. Again, you would think this would be easy for me. Maybe it’s a mental thing, not wanting to see my son sedated and prodded again. Once I have the schedule figured out, it’s setting my alarm for odd hours of the night in order to keep to the NPO schedule.

It’s making sure he has a bath, which is another story for another day. Let’s just say, trying to bathe a toddler with a trach makes for a pretty anxious mama.

That’s really only a piece of how we prepare for surgery. The morning of, is a bit chaotic, but I have to say, we have it down to a science now.

Coming home is a whole other ball game. Thankfully, Sam usually recovers very well. Being mentally drained for me, makes for a couple of extremely exhausting days following a procedure day. Thank you Lord for coffee and home care nurses!

(To get email updates each time I post a new blog, click on the “Follow” pop-up at the bottom right of the screen and enter your email address.)