Bye Bye, Machines!

Remember Isaiah's beginning?  Remember when Isaiah was admitted back into the NICU (precautionary and because they knew him there) for his very first full dose of pamidronate (what many in the OI community call "bone juice") and he went into respiratory failure?  And then things changed.  He had to fight for his life, he was put on new supports...instead of just needing oxygen, he needed extra pressure to help him breathe so he was put on a bi-pap and then a c-pap and he wore that 24/7.  He went home on the c-pap, was diagnosed with severe obstructive sleep apnea...we had night nurses taking care of him, and we had a new normal.

and before we knew it, it was 6 months later, his obstructive sleep apnea was downgraded to moderate, and he was weaning off of that c-pap during the day (including nap time).

and then we weaned him off of needing to sleep with any supports because his apnea was downgraded again to mild...he just kept getting stronger. We said goodbye to the main c-pap that we had around...and only kept the travel stuff as a precaution (in case he got sick).  

But now?  As I mentioned in my last post, we've gotten the results of his recent sleep study....and his obstructive sleep apnea is gone.  He still has a mild typical issue (that I can't remember the name of right now) but Isaiah's doctor officially discontinued our prescription for the machines and we have newfound closet space (just in time for baby!).

Don't let the door hit you on the way out, Masimo and Trilogy. :-p

I have had a love/hate relationship with these machines.  They were so intimidating; all the beeping, tube switching, new things to learn.  They limited how we moved Isaiah.   Sometimes they held us down, making us feel a bit trapped. 

But..They helped us monitor him in ways I never expected to monitor my child...I could get a quick view of his heart rate and know if he was asleep, awake, hurting, etc.  They let us be at home, instead of living in the hospital, while he gained strength.  They helped Isaiah's body breathe efficiently while it got stronger, while he got stronger...

and for that we are eternally grateful. Every second that Isaiah was on those machines was worth it.  They brought us to where he is today.

2015 Highlights

Each year, around this time, I like to reflect back on the past year and share the most significant moments.  2015 was a big year for Isaiah.

10.  Isaiah's 2nd birthday: Isaiah turned two.

During the month of August I was a blubbery mess for a second year in a row because I felt so blessed.  Another year with my baby that was predicted not to live more than a few moments.  That heart-in-the-throat feeling is becoming more and more distant and we're so grateful.

9.) Respite care: Dave and I got to go on our first date since Isaiah was in the NICU!  For those wondering that timeline, TWO YEARS.

Respite care has been wonderful for all three of us; it gives Dave and I time together and it gives Isaiah social time (with nurses available if needed).  We've taken advantage of that amazing opportunity twice now and hope to again in the new year.

8.) Isaiah's hydro diagnosis: This was one of those highlights that wasn't totally positive...

It all started because I sent the above side by side shot of Isaiah around Valentine's Day to Dr B. and he noticed how much Isaiah's head size and shape had changed.  Speaking selfishly, this diagnosis put me into a bit of an anxiety riddled depression....I was so afraid of the diagnosis itself, the surgery, the possible shunt malfunctions of the future, etc....and it just hurt my heart that my baby had yet another diagnosis...

7.) But then he had his Shunt surgery: And it was a game changer.

Isaiah made it through his surgery without an issue.  He was put in the PICU as a precaution post-op and got kicked out of there because he really did SO well.  It was amazing that he didn't need any breathing support and that he was just in such a good mood post-op....and since then his head size has gone down 1.5cm (and we were told it wouldn't go down, that growth would just plateau for a few years), the veining around his head calmed down, and he's talking more.  Pictures of his brain show just that, BRAINS, (ALL THE BRAINS!) not spinal fluid all over.

Game changer.

6.) Wishbone Day!

Wishbone Day is always a highlight of our year....to have so many people turn the world yellow for Isaiah and all of those living with OI is AMAZING! It is a beautiful, cheerful, and day full of love! (And I CANNOT wait for it this year!)


5.) Isaiah's facebook page gaining popularity: Back in September, I was at DuPont with Isaiah and all of a sudden I was getting tons of notifications on my phone.  It turned out that one of his videos started getting shared, shared, and shared again....Within one week we went from a little less than 2000 followers to 35,000.  Three months later and here we are.

70K people follow Isaiah's page.  70,000 people.  Tens of thousands of which had never heard of OI until they came upon Isaiah's page.  A few who had OI themselves or someone in their family had it and they never saw anyone else with it.  Thanks to Isaiah's page, they felt less alone (even more so because I was able to introduce them to support groups online).  Thanks to Isaiah's page we are really spreading awareness of OI.  It's extremely intimidating at times, and worries me because I know it's the internet and not everyone is kind on the internet...but we continue to post and share Isaiah's life because we want others to understand what OI is and that life with OI is NOT sad or doom and gloom.  It's LIFE.  And life is what you make of it, friends! We choose joy in our life and we hope you do too!

By the way, three months later?  That video that got shared and shared and shared....has continued to be shared...

69,456 times.  Liked by 90,696 people.  Has 4.4 MILLION views and has reached over 11 million people. And counting.

 Jaw-dropping. 

4.) When Isaiah got his Scooot- This was the year he got mobile!

The Scooot was a life saver for us.  Isaiah's doctors weren't sure if a manual chair was the right choose for Isaiah.  They were concerned that the bowing in his arms would cause him to fracture if he pushed himself and that maybe a power chair was the way to go to move independently....but thanks to Jack and his family and friends, we have the Scooot, and Isaiah was able to move it right away.  I took many videos and photos of Isaiah pushing himself around the house and when Isaiah was inpatient for his shunt surgery, I had the chance to show his doctors the videos of him pushing himself.

And there were no more doubts on if Isaiah could push himself.

3.) Isaiah's first vacation: Isaiah went to Disney World!

And it was more than magical.  He loved seeing all of the characters from TV in person (His jaw literally dropped when he saw Mickey for the first time) and rode his first theme park rides!  To see Disney World through Isaiah's eyes was indescribable.

2.) Saying goodbye to the Cpap

Although we still have the travel C-Pap in the house (as a precaution through this flu season), Isaiah was officially cleared to stop using the C-Pap this year.  His obstructive sleep apnea is now mild and he no longer needs support.  To go from needing it 24/7 two years ago, to only at night one year ago to now?  Amazing.  Packing is so much easier now! lol  We're so grateful for the c-pap and how it made Isaiah stronger but we are grateful to finally put an end to that chapter of our lives.  <3

And our favorite highlight of 2015?

1.) Isaiah getting his Wheelchair

Isaiah's First Wheelchair from Vicky Martin on Vimeo.

Isaiah's wheelchair gives him freedom inside and outside our home.  It's so amazing.  I had a number of people share that they expected me to be sad that Isaiah was getting his chair...and I was honestly expecting to feel some sadness...and the day he sat in it for the first time, there were tears...but they were absolutely tears of joy.  To see Isaiah excitedly roll down the hallway to our Christmas tree, to see him roll up to his book and toy shelves and yank everything off of them, to have him make his way up to what catches his eye in stores?  It's incredible.


2015 was a year full of changes and excitement for us, and we hope you had a positive year as well.
For fun you can check out our 2014 highlights here and our 2013 highlights here....but for now, we'll see you next year! :-p

Happy New Year!

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. :)