Gideon’s 2nd Swallow Study Results

20141022_122312
This was at the very end of the study.

This past January, Gideon had his first swallow study and today was his second one. I must say the two experiences were night and day difference.

The staff was great again, but this time things just went so much more smoothly (despite the picture you see up there). There’s two reasons for this in my opinion. First, I knew what to expect. And second, I actually had the cojones to speak up before the exam began. I summarized Gideon’s diagnosis, explained he was blind and deaf, and then I let them know the best way to approach this procedure. Thankfully, the entire staff was receptive and hopefully I didn’t come across as a witch with a capital B.

After talking to the radiologists, I made the decision that Gideon would not wear his hearing aids (they can get in the way of the picture, and I didn’t want them to do more shots than necessary). I also made the suggestion that I do the feeding, since we were going to have to use tactile cues. The staff was more than happy to let me do it, especially because Gideon doesn’t fight me as much as he fights others… I’m more stubborn than he is and I win 99.9% of the time.

Another thing that was great about today is that Gideon was able to support himself better in the feeder seat… something he wasn’t so good at this past January. This made a huge difference because we didn’t have to have a fourth set of hands holding him place. (Don’t get me wrong, I did my fair share of re-positioning today, but it was nothing like last January.)

The results today were better than even I expected. Liquids have always been a concern because Gideon’s condition makes swallowing difficult. However, there was no aspiration!! The only bad thing is that the liquids put lots of pressure on his airways, meaning he has to really try hard to make the liquids go down his throat. And he does a great job! But after a while, he gets tired and that’s when he could possibly be aspirating.

So it was recommended that we thicken his liquids to a nectar consistency. (Something we already knew we should be doing.) And that can be done with rice cereal in his bottles or thickening substitutes.

Thanks again for praying for us today. After last time I was really expecting it to go bad. Especially since it was just me and Gideon. I’m always nervous because I don’t want my emotions to get the better of me. But after flying solo today, I feel like I’m all grown up.

I can do this special-needs-mom thing.

20141022_122312
Once he was all cleaned up, there was only one little tear left on his face. Precious.

 

Going Home

20141017_161411

Last night was rough. Not because Gideon was super sick, but because he was super uncomfortable. If you follow my Facebook page, then you saw that we were up most of the night because Gideon likes to sleep on his tummy…and then his side…and then his tummy-side-back-tummy-back-side…. you get the idea.

As of this morning, the rash and fever are gone. They cut back on his IV fluids hoping to get him to eat more. In fact, that’s the only reason we weren’t discharged this morning. They wanted to keep him for the majority of the day, to give him time to improve his fluid intake. And thankfully, it’s looking like we will be going home sometime today.

We won’t know anything about the results from the nasal swab or the urine culture until tomorrow or the next day. As far as his blood work goes, they aren’t sure if his low platelet count is due to the virus he has, or the genetic disorder, or something else entirely. So we will come back in 4 weeks to have more blood work done when he is healthy again.

For now, we will be glad just to be home. Thank you for all the texts, emails, phone calls, and sweet gestures. We are glad to know that so many people are praying for our little guy.

He’s a trooper for sure.

20141017_161411

 

Gideon’s Hospital Admission

He's got his 2 favorite items- Z-Vibe & a package of wipes!
He’s got his 2 favorite items- Z-Vibe & and a package of wet wipes!

It’s been a crazy week. After his visit to the ER last Saturday, Gideon was doing well.. for the most part. Unfortunately, he never really returned to his normal, head banging self.

Last night we noticed Gideon had a rash on his abdomen and a low grade fever. This morning he didn’t have a fever, but he seemed to be in pain when I sat him up. I noticed the rash had spread a bit and figured he was probably having a reaction to the antibiotics. As the rest of the morning unfolded, I felt like he was struggling to breath; but it would come and go in spurts. So I canceled his therapies for the day and took him to the pediatrician.

After looking him over, she suggested his rash was due to a virus, and that we should see the on-call hematologist immediately. Once we got to the hospital, the rash had spread, his fever was back, and the doctor made the decision to admit him.

On top of the rash and fever, Gideon’s platelet count is still low (85K). Plus he has moments where he’s lethargic again. He just sits motionless and stares off into space. (NOT what I had in mind when I was complaining about him struggling in my arms!!) Also he’s not eating/drinking anything again and when he does, it’s very little.

So now we are awaiting the tests results from the blood, urine, nasal swab, etc. And since we were admitted later in the day, the results won’t be ready until tomorrow afternoon…sometime around 1 pm (or at least that is what we were told). I will be posting throughout the day as we get more answers. If I don’t respond to texts, emails, and calls, please know it’s probably because we didn’t get much sleep tonight.

Thank you all for your continued prayers and support for our little man. I’m confident he will be just fine. He’s our little warrior and I don’t think he’s going anywhere anytime soon.

20141016_173555
Post IV hair…He was NOT happy about this. On the up-side…he didn’t see it coming. (Come on…that was kind of funny.)

 

 

Gideon’s First ER Visit

20141012_013250

Just one week shy of turning 21 months, Gideon had his very first visit to the ER. It started early Saturday morning. He was more fussy than usual and after eating, he did something crazy that he never does…he took a 3 hour nap!!

And even though we woke him up, he never really woke up. He dozed in and out, and was very lethargic. He threw up everything except his toenails, and wouldn’t eat or drink anything. His armpit temperature went from 101 to a consistent 103.5, so we made the decision to take him to the ER.

The only problem was that we were visiting Kevin’s parents which is 2 hours away from the hospital where Gideon’s specialists reside…yikes!! So we hopped in the car, with big sis in tow, and made the 2 hour trip in record time!!! (It was way less than 2 hours…the hubs may or may not have sped. I plead the 5th.)

We checked in, got taken back almost immediately (I may have pulled the terminal kid card on the intake form), had a chest x-ray, blood work and IV fluids, and then checked out! We were there for a total of 4 hours. I was seriously impressed by this!!

The diagnosis was an upper respiratory infection with a small touch of possible pneumonia (apparently it was very hard to see, but someone thinks they saw it). But the interesting part was when they came back to draw more blood. A second sample confirmed the first and we now have to follow-up with a hematologist. Apparently both samples indicated that Gideon’s platelet count is in the 85K range when it should be in the 130K range.

So what does this mean?

I have no clue, and I probably should. They didn’t say what it meant only that we should see a hematologist. I should be researching and calling my PBD parents group…but its 1:30 am and if I’m being honest, I’m too darn tired to care or Google it.

Anyways, whatever the case, God’s not surprised nor worried about it and right now, I’m not either.

ER Visit 1, this mamma 0

Stay tuned for next week, when we have a swallow study, an ABR, and a hematologist appointment…all in the same week.

Lord help me.