An Update

Where has this summer gone? Oh I know, to doctor's appointments, therapies, and chasing after Isaiah.

I wanted to share a big detailed post about our Disney trip but time has been flying and my ability to sit down anymore (without falling asleep) is so limited.  I did however wake up at 3 am the other day and couldn't fall back to sleep for the life of me thanks to pregnancy-induced carpel tunnel (I didn't know that was a thing! but now I can tell you it is and it stinks) which enabled me to finish putting together a photo book on Shutterfly (with my left hand because my right is out of commission thanks to the carpel tunnel)...

Click here to view this photo book larger

Photo books are the perfect gift for any occasion.

It was an amazing trip!

Since our trip, we've had a lot going on! Isaiah had another pam treatment (directly after we came home from Disney. not sure what we were thinking scheduling like that!) and sleep study.

Dave took him to his sleep study which gave me an opportunity to get a good night's sleep over at the Ronald McDonald House.  The study went well...so well that Isaiah's pulmonologist told us that Isaiah no longer has obstructive sleep apnea. WOOOOT! It could definitely reemerge at some point, but for now we celebrate....and call the oxygen company to check if the doctor discontinued our script for everything so they can come take the backup cpap that we've had around "just in case".

We've spent the summer doing lots of summery things like swimming whenever we can, playing in the water table, and blowing bubbles...but as it's gotten hotter, it's gotten tougher for me to be outside, so we're also getting crafty and finding ways to have fun inside.

I've also spent a bit of time trying to get Isaiah's gait trainer.  We ordered it two months ago and now finally have an approval from insurance! There was quite a bit of miscommunication that I had to figure out once I had all the information on the company that Isaiah's PT had gotten the ball rolling with...but once I had the information and touched base with Isaiah's doctor, the approval came less than a week later. (If only I hounded two months ago?)

And we've just been getting ready for Isaiah's baby brother to arrive and get Isaiah ready for preschool! Details on that in the near future (I'm attempting to get some posts written over the next few days so I can stop being so neglectful. ;)

Sleep Study Results

Sleep Studies.  If you're a follower on the blog, you know how we feel about sleep studies.

How anyone is expected to sleep with all of that attached to them, I don't understand.

But, this was Isaiah's fourth sleep study, so he's a seasoned pro.  ;-) For anyone new to the blog, Isaiah has had to do sleep studies to check his obstructive sleep apnea.  He used to live on a constant C-Pap 24/7 because he went into respiratory failure around one month of age.  His apnea was severe, with many "events" taking place throughout the night causing his oxygen to dip.  As he got older and stronger, he moved on to only needing the C-Pap at night and having much less dips in his oxygen.

When night nursing ended, I moved all of Isaiah's medical stuff into in to his nursery.  It's funny, I was trying to find pictures of it in his room but I don't seem to have any!  To be honest, I hated having it in there, his nursery was my one "baby" place...if that makes sense...it's completely silly, but I even got into the habit of storing his c-pap machine in the closet during the day so we didn't have to look at it.  It stressed me out.  Maybe because his going into respiratory failure was so awful and I just didn't see that coming?  I knew his bones would break, I knew we'd have challenges, but such severe breathing problems?   It was scary stuff.

Sleep studies bring it all to the forefront.  They are supposed to tell me how Isaiah's apnea is to let us know if he still needs the support.  To me, sleep studies are supposed to give me some good news and be the ending paragraph to the C-Pap chapter of Isaiah's life story...but gosh darn it, they never are!  The chapter is forever long.

Isaiah has had time off from the c-pap to test his body and see if he could handle sleeping without it.  He had a sleep study in April after months without it and the results were that his apnea was significantly improved from months before.  It was considered mild.  Isaiah's doctor said that if he didn't already have the c-pap in the house, he wouldn't prescribe it, that's how mild the apnea was.  At that point, Isaiah had really begun monkeying around his crib, so Dave and I made the decision to keep him off the night time C-Pap but continue to monitor his oxygen using the pulse ox....that was until this past August, where his monkey movements had him twisted up in the cord to the pulse ox, and/or chewing on it when we thought he was sleeping...so we cut that too (that was hard for me.  having the monitor helped me sleep better, knowing his oxygen was in a safe place...but he hadn't had any issues in 6+ months, he was no longer "noisy sleeping", and he was at risk to hurt himself with his shenanigans).  I emailed his doctor and he actually called to pull one of our C-Pap machines.

So this sleep study was to be the for-real-this-time end to the C-Pap.

Well guess what?


IT KIND OF IS!

This last sleep study was the best Isaiah has ever had in terms of results.  His oxygen stayed up in a safe place whenever he did sleep (he didn't sleep so well at this one....actually ended the study early because of how much/loud he cried dealing with it)...he still has very mild apnea, but everything (his oxygen/CO2) stayed normal when he slept.  He officially has the blessing to stay off the c-pap and monitor.  And he doesn't need another sleep study until June of next year!

Can I get a WOOT WOOT?

We are hoping to keep his c-pap and monitor for the winter (tucked away of course) in case Isaiah gets sick and needs the support, but yep, I'd like to call this chapter OVER, my friends.  We're not ordering any supplies at this time since we have them on hand if they are needed (but they will hopefully not be needed).

And just like that, Isaiah's room looks like it did in my dreams....free of machines and their supplies...because he's strong enough without them.

We feel blessed and grateful that this study solidified what we've known for the last few months, Isaiah is strong enough right now to not need support....he may need it again some day.  He may need his tonsils/adenoids removed at some point if the apnea worsens. But for now, the chapter ends.

I do want you to know that I appreciated what the machines did for Isaiah.  They were the perfect support to help him grow strong. They are a huge part of why/how he is here today...but this is a time I have been dreaming about for two years! It's a big cause for celebration.

Excuse me while I go kick my heels... ;-)

Bye Bye Cpap!

Earlier this week, I emailed Isaiah's pulmonary doctor to let him know of some changes to our daily routine that have occurred.

You see, at night, Isaiah is supposed to sleep with a C-PAP to help with his mild obstructive sleep apnea and he's also supposed to sleep with a pulse ox so we can monitor his oxygen saturations.  His C-PAP wearing was not consistent, but we always put the pulse ox on him.  For anyone that doesn't know what a pulse ox is, it's a monitor, a bit bigger than an alarm clock, that shows Isaiah's heart rate and oxygen levels.  It connects to Isaiah with a sticker on a very long cord.  Isaiah's oxygen levels have been healthy for a long time.  (At his last sleep study, his oxygen stayed in the 90s the entire time, never dipping below 91, and that was only once.)

Honestly, I was basically addicted to it.  It used to help me sleep, knowing that if something happened to Isaiah, it'd beep to wake us and alert us.  I'd say I wanted it until he was 30....and I was only sort of kidding.  But then it started beeping constantly all night...and when we went to check on him, he was fine, it was beeping because he's moved and the sticker fell off.

The pulse ox monitor is on the plastic drawers next to Isaiah's crib.

And he sure did move.  He'd have spun a 180 in his crib.  He'd be at the opposite end of the crib than we put him in (kid used to stay put!).  He'd be chewing on that cord for the pulse ox.  It'd be wrapped around his legs or entire body from all of his movement.

A pulse ox isn't meant to be on someone who is moving.  It can't read accurately.  None of us were sleeping because the beeping was waking all of us up.  So, after a few new tricks we'd learned from others to keep the pulse ox on safely failed, we made the executive decision to just stop using it.  It became a danger.  His chewing on it and me afraid he'd get electrocuted (likely an exaggerated worry) and it's getting wrapped around him had us very worried it'd get caught and cause a fracture overnight when he would move in his sleep.

You can see the pulse ox cord hanging from the side of the crib in this picture.

We've had him completely free of his machinery now for a few weeks...I avoided emailing his doctor because this was not part of the plan....but I knew I had to, so I emailed him.  He replied back rather quickly agreeing that we have to weigh the potential risks with the benefits of the monitor.

And then we got a phone call from the oxygen company saying they received an order to pick up one of Isaiah's c-pap machines from the house.  We have two- one for travel and one that stays home...

I kicked my heels.  Yes, I think it is time to send one back!  Isaiah has another sleep study coming up in a few weeks.  Hopefully it will solidify how we feel; this chapter of Isaiah's life is over.  For now, his apnea is resolved.  We know that he will likely need the cpap again in the future....I know of a number of adults with severe OI that sleep with a cpap.  

But for now?

We will still have one in the house if Isaiah were to need it (if he were to get sick and it affect his breathing).  We still have the pulse ox too...they are just put away for now...and hopefully will soon be sent back to the oxygen company too. :)

Follow Up Appt

Yesterday was quite a busy day for us.  We started out with Speech Therapy at our new weekly day/time, 8:30 in the morning...(he wakes up early I said.  We'll have been up for hours I said....and then this was the one day Isaiah slept in until 8. Cool.)  

After speech, we had our usual morning, followed by a little swing time on the back patio.

 

We enjoyed some lunch together and instead of putting Isaiah down for nap, he watched a little Disney Junior until it was time to head out to DuPont for our follow-up from surgery.  

We saw a lot of familiar faces in the halls...to the point that another family asked if we were celebrities. Ha.  DuPont is kind of amazing....the staff there gets to know their patients and families who frequent there, and yep, a lot of them know us by name.  

Dr C was pretty booked up yesterday, so to pass the time in the waiting area, I hooked Isaiah's Ipad to his stroller and he watched some Mickey.  (You see, my hope was that he'd pass out on the way to DuPont in the car...and he did...for 20 mins....so he got lots of screen time so that he didn't lose his exhausted mind.)

A nurse measured Isaiah's head- still the same exact measurement as before surgery.  (YAY!)  Once we saw Dr C, he felt his head, looked over his incision on Isaiah's head, and asked some brief questions.  He believes the shunt is working.  We now have a Fast MRI scheduled to see how well the shunt is working when we are back for Pamidronate (ya know, that treatment Isaiah gets every 8 weeks for his bones) and then a follow up with Dr C again to go over that.

We also heard from Isaiah's pulmonologist about Isaiah's sleep study.  Isaiah still have obstructive sleep apnea, but it's considered mild now.  In fact, Dr. H compared his sleep study from this year to last year, and the amount of issues he had have been cut in half, so he's made amazing progress; he's clearer gotten stronger.  His oxygen stayed at a healthy level the entire night.  If he didn't have a c-pap at home, Dr H wouldn't even recommend one at this level...but since we have one....we're recommended to put him back on it.  whomp whomp.  It's a bummer...but we're doing what we have to.  But Isaiah has been fighting bedtime like it's his job, so adding in the c-pap cannula or mask again.....bedtime sure is FUN! ;-) And, joy of joys, we get to go for yet another sleep study in September!  (Can I just say *#@* &#!@* &^(# &~&*!)

Still improvements.  Still smiling.  Let's just forget about that %$*@$@% sleep study until it's here. ;-)

Sleep Study Experiences

Sigh, my nerves are through the roof.  Less than a week until Isaiah's surgery.  I've had a hard time posting recently; part of me wants to completely let go on here about it and part of me just can't because it's depressing and I personally don't go on the internet to be depressed.  I go on for funny cat pictures and adorable pictures like this...  

I love my Baba!!!

Before Easter, I last posted at 2am during Isaiah's most recent sleep study.  This was his third one.  He goes through them to check on his breathing while he sleeps.  

I'm actually pretty lucky Isaiah is so young when he goes for his sleep studies because I get the bed.
Usually the parents get to sleep on that luxurious couch over on the left.

He was diagnosed with Obstructive Sleep Apnea after his first study.  Basically, he'd stop breathing while he slept (I feel like that sounds scarier than it is maybe....Obstructive Sleep Apnea is very common), it'd wake him, and he wasn't get a restful sleep- the c-pap made breathing easier for him so he had to sleep with it.  It was severe back then but improved as per the results of his second one.  Between his second and most recent study, we've seen great improvement in Isaiah.  I learned that his apnea seemed positional, meaning that whenever he spent the majority of the night on his back, he had more apnea episodes so we would really push him to sleep on his side.  He always sleeps with something we call a pulse ox (it's a sticker we attach to his foot that connects to a machine that measures his oxygen saturations and heart rate) so we can monitor things.  If he's having an apnea episode, his oxygen drops and the machine beeps.  It used to beep a lot.  Nowadays it only beeps when he's rolling over and the sticker is falling off.  

Here's a picture of Isaiah during his sleep study.  They attach what seems like a million wires to his head, face, and neck.  Three also attach to his chest (they call them "leads").  He gets a pulse ox on his foot and a thin cannula under his nose that measures his breaths- I believe it measures the CO2 he is breathing out.

Because I didn't sleep a wink during the previous sleep study that I did with him, this time I attached yet another wire to him, his at home pulse ox (I am crazy; I needed to see his oxygen saturations and they don't have a monitor in the room for the parents).  I should have used a new sticker- it wasn't attached right and beeped a million times.  It had me up all night worried because he never beeps; I knew it was wrong (I could tell by his breathing) but I didn't want to reposition it because that would wake him and I didn't want to wreck the study.  I ended up turning it off when I started that blog post.

I had asked the woman who set everything up (she's a respiratory therapist) to please end the study as soon as she had enough data, even if she'd have to wake us, and thankfully she did!  I seriously just wanted to get home.  We were able to end a whole hour early compared to Isaiah's previous studies (which made sense since he went to sleep an hour earlier this time).

At first he was pretty peeved to be woken up, until he realized it meant we were outta there.  Seriously, his butt hit the stroller and he was like "go, momma".

The techs aren't supposed to tell us anything but it never hurts to ask... ;-)  So I did, especially since I was having trouble with our machine.  She said it was definitely my sticker having issues because her's read that Isaiah's oxygen saturation stayed at 98% most of the night (safe for Isaiah is anything above 95%).  She saw a dip once to 91% but it was due to his rolling over- the sticker lifted off his foot a bit (I then fixed it as I had been checking on him) so it was marked as inaccurate.

Sleep apnea is common, especially with those with OI.  I imagine we may be looking at it again in the future but I am praying that Isaiah's doctor's interpretation is as positive as the RTs...we should hear that during our next Pam treatment (unless for some reason he stops by next week after surgery).  If they are, we can hopefully officially say goodbye to the c-pap and everything with it and finally officially end that chapter of Isaiah's life story.

Pam and a Sleep Study

We had a tough second day of treatment but after a good night's sleep Isaiah was ready to tackle his last day of his pamidronate treatment for this cycle.  On Tuesday, we thought he had broken a rib, and he was showing every sign of that until Wednesday morning.  I'm not sure if Pamidronate is that amazing in terms of pain reduction or what, but isaiah was back to himself (no pain meds since Tuesday night) and it was wonderful. He was even sitting up in his bed playing! 

And I was stalking, ready to catch him if he'd go off balance, like a good helicopter mom should. ;) 

The morning was slow but before we knew it we were done.  Catch you later, day med ;)

We returned to the Ronald McDonald house to twiddle our thumbs while we waited for our next hospital adventure- a sleep study.  I hate sleep studies. But they are needed to check and see how isaiah is doing at night with his breathing. He has obstructive sleep apnea, and we're hopeful that has improved.

To pass the time, we did our laundry, played on the floor, cleaned our room, and took a good bath...

As good as it can be in a shower.  

After we packed up, had dinner, and checked out of the McDonald House, we were back at the hospital...torturing Isaiah. :(

At least that's what it feels like.  Setting him up was pretty rough.  He was so mad, he just kept screaming at us.  He wouldn't look at me.  He was exhausted.  I think he hates sleep studies.  Me too, kid.

I'm typing this at 2am, not surprisingly unable to sleep, and just wanting to go home.  We miss Dave.  We miss Carl. (Both of which/whom* Isaiah keeps asking for.) I desperately miss my bed and I just want to get back to our normal.  I know isaiah also can't wait to get home. 

Here's hoping the clock picks up its pace and 6am gets here so we can grab some breakfast and be on our way back to Pennsylvania. 

Oh and let's also hope that isaiah is ready to nap his face off today. Because I know I will be. 

11 days until surgery.  

*I'm so tired that I don't know which word fits correctly.  Please ignore my exhausted grammar, grammar police.