Thursday, March 13, 2014

A giant, rambling update about the past 4 months!

I'm a little ashamed that it's been 4 months since I've updated Clay's blog. But, I did just realize there was an entry from December that I started writing that didn't get posted..(!)

So, let's just pretend we're in December and this is what has been happening:
Clay's bronchoscope procedure he had last month went well...airways were open & clear, still evidence of immaturity, but nothing out of the 'normal' so we were free to go home a couple hours later

We had a follow-up appointment this past week and were given the okay to down-size his trach (he's at a 4.5, with plans to move to a 4.0 soon) and we were also told to start plugging trials. A couple hours during his awake time, we plug his trach so it's not being used at all. He has done very well with this! Coughing is different for him and freaks him out a little, but I think he'll get used to it. I also think it will be easier when the trach is out of his airway all together. We're waiting to hear our appointment date for a sleep study, which should be happening this month...but with the holidays so close, it may be next year before that happens. Either way's fine...They just want to observe Clay sleeping with his trach plugged before decannulation. If the sleep study looks good, we will have an overnight PICU stay so he can be observed without the trach at all!!!! NO TRACH! Hallelujah! or "Alllelullla", as Clay says ;)

Since we've been plugging his trach, we get to hear his voice quite a lot. All his grunts and squeals and funny words.. what Joyful, Joyful noises they are!

Still no real progress on the eating-by-mouth-objective. It's just been hard for me to get on board with the techniques we've been using, mainly the bribery. With our weekly speech therapy sessions, we will sit at the table with paper & markers (the boy loves to draw), and we tell him if he wants to draw, he has to take a bite of the food (which is usually yogurt or something with that thin consistency)...Clay will eventually take a bite (and by bite I mean he will lick the back of the spoon, with mouth wide open), then he'll make an awful face and then finally get to draw with the marker he chose. We'll do this five or six times until he's had enough. I just hate the fact that he's not enjoying it. I want it to be something he enjoys, but I don't really have any alternative suggestions. If any of my special-needs momma friends want to suggest something that worked for them, please let me know!

We are making some progress with physical therapy...I can tell he's getting stronger everyday. He actually stood up completely on his own a couple of weeks ago...In the middle of his room, he just stood straight up and then stood there unassisted for a good minute or so! It's not happened since but my mom & dad were there to witness it, so I've got proof. He's still got some hip-strengthening to do, but it won't be long til he's walking. Another huge thing for him is that he's been getting on his knees! He will get in crawling stance, but then will sit back down and scoot on his bottom. Hey, we'll take what we can get :)
End of December post

Now, fast-forward to March 13, 2014 and here's what's been happening!:

One of the things that I'm most happy about is the fact that Clay is gaining weight!! He's really filling out and I can just imagine every tissue in his body getting healthier and stronger. He's up to 29lbs now!! He was at 23.5lbs before his Nissen Fundoplication surgery back in October, so I'm sooooooo soooooo relieved to see those extra 5lbs on his bones. You can just tell he has much more strength all around, but especially in his legs. He's not walking independently just yet but it's not 'cause he can't, it's 'cause he won't. Lil turkey just needs more confidence and he'll be walking everywhere. We traded in our gait trainer for a walker in physical therapy, so he has a little walker he uses to get places. It's so stinkin cute.

Another praise for my big boy: he's doing so well with the potty training! He is very enthusiastic to go pee pee in the seems half of my day is spent in the bathroom, lol. He does have occasional accidents when he has on his undies or pull-ups, but he does perfect when he's running around naked. He has used the big potty a couple times here at home, but doesn't want to use the big potty anywhere else just yet. Regardless, I'm so proud of him! Our diaper usage has dropped dramatically... just in time for another one!!

Oh yeah, forgot to mention that news--Clay's gonna be a big brother!!!!!!! I'm about 16 weeks along right now, and we are very excited! We go in a couple weeks for an ultrasound to find out the sex and take a peek at how things are brewing. We found out about Clay's CDH at my 18 week ultrasound, so to say I'm a bit anxious is an understatement, but I've been trying my best not to stress about it. There's only a 2% chance of CDH reoccurring, so we've been saying lots of prayers for a perfectly healthy baby. I've just got a feeling it's a girl, so I'm excited to see if I'm right ;)

Okay, now back to Clay-news...
So, as far as the trach decannulation saga goes: after the bronchoscope and downsizing of the trach to a 4.0, we stayed overnight for a sleep study back in February (on Valentine's Day!). The purpose was to observe him overnight with his trach plugged, meaning it's completely closed off so he couldn't breathe in or out through his trach at all. This is not something we ever do while he's sleeping, so I was anxious to see how he'd tolerate it. Well, the sleep study went leaps & bounds better than I thought it would. They had the awfullest amount of electrodes hooked up to him and that sensor across his lip and those belts around his belly... I figured he'd be tearing them off and restless all night, but he fell asleep relatively quickly and slept okay throughout the night. He is such a well mannered and content little man, I don't know why I doubt him, lol!
I hated not having any monitors in the room with us because I couldn't see how he was doing number-wise! But I asked the RT a couple times and he said his oxygen levels were in the low 90's the majority of the time, so that was good news. Our wake-up call came at 5:30am that next morning, so we were both kinda grumpy when that happened, but hopeful for good results.
Buttttttt, it's not looking so promising as of now.
We had a follow-up appointment with the pulmonologist at the sleep clinic today, which also happens to be the same doctor we've seen regularly in the pulmonary clinic for the past year. So when he asked me, "who do you normally see over in the clinic?", I wasn't too happy to reply, "umm, you do". Granted, we have seen a different doctor before, but he didn't remember THE Clayton Cash?!?! Ha! All jokes aside, I feel like we should have a closer relationship to Clay's pulmonologist than we do currently and I've felt this for a while, but this visit today confirmed as much. Maybe I'm just being bitter about the results he gave too, I don't know. I just have a lot of questions and I'm about to start rambling (even more), so bear with me...
So, the results from the sleep study showed that Clay's oxygen saturation levels were average 93%, which is good. But he desatted a few times throughout the night, spending a total of 20 minutes below 90. Turns out, those desats came when Clay was in his REM stage of sleep. So, the doctor explained to me that those are apnea episodes, more specifically, most of them were hypopnea episodes. So in the hypopnea episodes Clay doesn't necessarily stop breathing all together, he just breathes more shallow & slowly which would cause his oxygen levels to drop. According to the charts he gave me, during Clay's total sleep time he had 4 episodes of obstructive sleep apnea and 34 episodes of hypopnea. Nearly 40 apnea episodes throughout the night, when I have never been concerned with Clay's sleeping patterns? It's just kinda crazy to me...
After a good ol' Google search tonight, I read that hypopnea episodes could be caused by partial obstructions in the airway....welllll, wouldn't a plugged trach be considered a partial obstruction in the airway?! Makes sense to me. Not to mention, the RT on duty that night in the sleep study had a very hard time getting the electrodes to pick up on Clay's noggin. He even told me that they may not get accurate readings of his sleep stages because he was having such a time with them. Of course, I'm remembering all of this now, after I nodded my head in agreement with the doctor earlier and had no questions at the end of the appointment....
I don't mean to discredit his concerns at all--Lord knows I don't want the trach to come out too soon and cause undo stress to Clay! What he explained to me makes perfect sense, but it's all a new concept and I need time to process, I guess... (This blog really helps with that, ha). There's just a lot of questions I have about all this if anyone out there has any advice or insights for me, I welcome it with open arms!
We also discussed possibly putting him back on supplemental oxygen at night. His sats are usually in the low 90's...Like right now, he's satting 91% while he sleeps. Those aren't bad numbers, but because of his history of pulmonary hypertension and everything else, I've often wondered if we shouldn't help him out a little. So, we're looking into getting the oxygen concentrator back and I'm totally advocating for that. (Our med supply company came and picked up the ventilators and the oxygen concentrator a couple of months maybe I jumped the gun on the Os!).

There's lots more I probably should include in this update but it's 1am and I can hardly hold my eyes open, so I'm gonna call it quits. Maybe I can get around to a post with cute pics and more fun stuff next time...I'll TRY to not wait 4 months, ha!

Peace & Love, dear friends! We love you all!


  1. Hannah....
    Weird. Blogger would not accept my comment because it wasn't "4,096 characters". Now. I'm afraid that I am known for LONG comments, but really?! What is this, Twitter?! Hee, hee, hee.... ;-D
    To keep this comment "short and sweet", I will write this. For all that He has accomplished in Beautifully Unique Clay's little life. Praise God!! I am praying for what still needs to be healed/accomplished on Clay's behalf!! ;)
    The news about your pregnancy. Congrats, congrats, congrats!! I cannot wait to "meet" this precious little one!! And, I completely get your anxieties about whether or not Baby will be born with CDH like Clay. Trust me. I do. Prayers!! ;)

  2. Hannah....
    It has been over one month since you last posted on this Blog!! I am missing Clay, my Kindred Spirit CDH Buddy!! ;)
    Love you later, Raelyn

  3. Hannah....
    It has been over two months since you last posted on this Blog!! I am missing Clay, my Kindred Spirit CDH Buddy!! ;)
    Love you later, Raelyn

  4. Hugs from France (I discovered your blog and your story by a google search)
    My little daughter (8 months tomorrow) needs oxygen also (genetic lung disease...surfactant disease). 8 months since her birth...8 months at hospital. When I read your story, it gives me strengh.

    My daughter doesn't also eat by mouth (she has a gastrostomy & nissen). Orthophonists came one day a week. I try with milk or fruits (very liquid consistence) and at the same time, I use some vanilla (the flavour and perfume stimulates the tongue, the taste and helps. Please try ;-) but with real vanilla, organic, or natural ...and Hugs to your family :-)

  5. Hannah....
    It has been over three months since you last posted on this Blog!! I am missing Clay, my Kindred Spirit CDH Buddy!! How is Life? I am most likely going to lose my beautiful straight brunette hair and transform into Frankenstein!! Because I have an ailment called foliculitius decalvans, and I was born with craniosynostosis. But I've reached the beautiful place of "I don't give a damn"!! ;)
    Love you later, Raelyn