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.

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. ;)

Breathing Test

Yesterday morning, we ventured to DuPont for a breathing test in their PFT Lab.  (PFT stands for Pulmonary Function Test.)  Isaiah's been doing remarkably well in terms of his breathing....he hasn't needed his C-Pap, he no longer sleeps with his pulse ox (unless he's sick) because we don't need to monitor his oxygen levels....but last year we did this test and found out that Isaiah would benefit from oxygen when flying in an airplane.

Last year's test was traumatizing...for everybody involved.  Isaiah cried.  I cried.  Techs teared up.  The doctor held Isaiah's iPad to no avail....Apparently after we left that day, their team sat down and said "how can we do this better?" (I would have thought they would have chalked it up to a grumpy and overwhelmed one year old (and a crazy over-emotional mama)....but nope, they are awesome and decided to reevaluate things.  They now test one less aspect than they did before.  The mask isn't as invasive and intimidating (last year's mask was covered in extra sensors and tubes)...

When we arrived yesterday, it was like they were waiting for us as this was the real test of their changes.  We were a bit more prepared this time...Isaiah is a year older, and although he does still cry and fight things, he handles them better than last year...even if it is just slightly better.  He has his wheelchair and thats what I try to keep him in when he sees his doctors and does tests as it gives him a sense of being in control of the situation.  Daddy came along to give Isaiah a second, familiar and loving face as he sat during the test.  I also let him do as he wishes on the iPad, which is his favorite thing in the world...and that's really what got us through this year's test. 

The test is just ten minutes.  They basically lower the oxygen concentration in the mask and have him on a pulse ox to monitor his oxygen and heart level.

and once he was calm, he did beautifully.  They were able to get accurate, fantastic readings.  Isaiah sat mostly at 97%.  He did blip down to 93% once but it was so quick and not a concern.

and so we are so excited because ISAIAH DOES NOT NEED OXYGEN when we fly to Florida this summer!  Last year, along with his stroller, travel highchair, car seat, car seat base (which we should have checked...lesson learned), and our regular carry ons for us and Isaiah (cough cough diapers, toys, SO MUCH EXTRA baby needs), we had to carry an oxygen concentrator (which was much bigger than we were anticipating) and a bag along with it (which held our pulse ox machine, extra probes for that, oxygen cannulas, tubing, etc etc etc).  I am exhausted just thinking about it.

This time we are cutting the carry ons down, cutting the high chair (well that'll go into our checked baggage) and car seat base, and trying to go lighter....except well, we are bringing his wheelchair along with the stroller (and both will be gate-checked).

"Hello? anyone there? My parents will probably still overpack."

I keep seeing bringing both as a positive....At the airport, he can travel around in his wheelchair and we can use his stroller to carry our carry ons and car seat. ;-) We weren't planning on bringing his wheelchair, but with Isaiah's independence and our comfort level with Disney World (yep, we're going back!), we want to have it for evenings here and there at the parks where we'll plan to just have dinner and meet a few characters.  We also want it for around where we are staying so he can have some down time in it.  (Last year we'd put him in the crib to unwind midday and he would just roll around and yell like a maniac.  SO MUCH ENERGY from so much to see! The chair will get that energy out so he can get a good nap...hopefully....in my dreams.)

Seriously though....can't you just picture him wheeling up to Mickey? (ahhh my heart is bursting)

Honestly, I was not happily anticipating going through everything to get to Orlando and home....but now that we don't need to bring oxygen because our baby is so strong??? Let the count down to summer begin...Bring on our Disney trip!

and thanks to the awesome team at DuPont/Nemours for changing that breathing test to make it less scary for our Isaiah.  You guys rock.

Pam, Pulmonary, and HOME!

So, seriously, didn't Isaiah's MRI look awesome!? Yep, I'm still talkin about it. ;-)

Yesterday, we checked out of the McDonald House bright and early, and headed over to DuPont for breakfast, a quick breathing test (I'll explain more on that in the future, but all is good!), and our last day in Day Medicine for Pam until July.  

We find different ways to entertain ourselves in Day Medicine. But when you have about 4 hours in one place, waiting for medicine to slowly flow, you get creative.  I brought our house a ton of toys (and a few books) each day so thanks to them and our friends, we had lots to do.

Here is Isaiah playing with blocks on Day 2.

Isaiah was rocking sitting up whenever he was up playing and eating.

On Wednesday, we had an appointment with Isaiah's pulmonologist, Dr H.  We check in with him every 4 months to make sure Isaiah continues to do well in the breathing department.  He checks his CO2 levels, listen to his lungs, and ask me lots of questions.

Waiting for Dr. H.

All continues to go well and we were reminded to schedule another sleep study for September.  (boooooooooooooooooooooooo)

Last day of Pam!

The last day of Pam went smoothly.  I helped de-access his port when all was said and done by removing the tape myself; the nurse even showed me what to do with the equipment when de-accessing him (aka taking the needle out of the port in his chest)...I'm not sure I'm brave enough to ever do that, but if I did need to at some point, it's good to know.  I know they showed me when Isaiah first got his port placed, but I was too freaked out by everything to even look at it then.... all my friends/family that know my fear of needles should be so proud of me nowadays. ha

The drive home was quick, especially for Isaiah.  He fell asleep as soon as we were exiting the parking lot and didn't wake up until we were down the road from our house! lol  

It's wonderful to be home! Now I need to get us all unpacked and back to our normal.  :)

Happy Weekend!