Hernia Surgery (Last Month)

It was just over a month ago that Isaiah had his hernia surgery.  He had a hernia pop up in late spring and we had it diagnosed at his next pamidronate treatment.  (That's when we go to the hospital for his bone treatment.  It won't cure his Osteogenesis Imperfecta, but it basically helps strengthen the bones and promotes growth.)

Before he could get cleared for surgery, we had to stop in to see his orthopedic surgeon to verify a fracture in his right leg since it was on the same side as the hernia.

The fracture was healing but teeny tiny.

With ortho's blessing we prepared ourselves for Isaiah's third surgery.  (First surgery was to place his port and ear tubes and second was to place a shunt to alleviate his hydrocephalus.)  We stayed at the Ronald McDonald House across the street from the hospital because we had to be there bright and early the next morning.  

He handled pre-op rather well.  We hung out watching tv while I signed papers and met with his doctor, nurses, and anesthesia team.  They accessed his port and gave Isaiah a mild sedative.  Amazingly, they agreed to have me help position him on the operating table.  I suited up in what they lovingly call "the bunny suit" and I helped wheel Isaiah to the operating room.  

It was cold and white and full of many people scrubbed in and wearing face masks.  So many times now I've been able to face things along side Isaiah and this one really caused me to hold my breath.  Being in the room where they'd be working on him.  Intubating him.  Fixing what needed fixed.  This was such a minor surgery but minor surgeries still scare me because of Isaiah's respiratory history....and surgery.

The operating table had something like a bed of warm air for Isaiah to lay on, on top of a special gel pad....all to keep him warm and to protect his bones.  There was a fan that was blowing warm air into it constantly.  With the nurse's direction, I laid Isaiah right onto the pad and I helped position his head and shoulders to their best position for him to be intubated and to breathe the clearest.  They allowed me in there until the tears welled in my eyes....(guys, sh*t was getting real in my brain.), watching him go under. I was there while he went into a deep sleep on a better sedative, gave him a kiss, sung him his Honeybunch song, and walked out to wait for it to all be over.

His surgeon was wonderful, telling me something like "I've got this".  I still offered to scrub in, because we have that kind of goofy relationship (this is the second surgery he performed on Isaiah, the first being placing the port), and he told me to get the heck out of there...but something funnier, because he has a similar sense of humor as Dave and I. 

Once surgery was over, Isaiah stayed sedated and intubated and was wheeled to medical imaging for his very first DEXA scan.  A dexa is a bone density scan; it measures the bone mineral density. After that, the plan was to take him to the PICU (The Pediatric Intensive Care Unit) for him to be watched overnight...but things didn't go as planned....

Instead, Isaiah handled everything so well during and after the surgery that they brought him to the PACU instead....which is the place you'd typically go after a minor surgery.  (I was shocked...I had been prepared for a night in the PICU.)  I was brought in to see him as he was waking and watched him drift in and out for a bit.  Once he was more awake, I asked him if he wanted water and Isaiah downed an entire ounce.  We waited a few minutes and I was able to offer him more and he guzzled another ounce down.  No vomiting.  He was waking up more and more.

Then I asked if he wanted a cracker and he said "ok, cracker"....and then downed that.  More water.  "More cracker"....six crackers later, he was cleared to go home.  I was floored.  Go home?  He JUST had surgery!  but yes, he was cleared to go home by everyone so they took off all the wires, deaccessed him....and we headed for the exit.

I double checked to make sure they didn't mean for us to stay at the Ronald McDonald House....nope, they meant for us to go home.  home HOME.  So we did.

Isaiah inhaled his dinner when we got home and honestly, you'd never know he had surgery just hours before.  He had an incredible night's sleep and it was just...all....surreal.

His incision has healed beautifully and this surgery really showed us how strong Isaiah has become.

I should hopefully be posting again on Friday....we have had quite a few well visits and follow ups the last week and a half, so I'll share the details of those in the next post. :)

Our First OI Clinic Appointment

Oh hey, there's a ton of information in this post.  Although I do talk a lot, my posts are usually less wordy, so excuse this one :-P
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We're at AI DuPont Hospital for Children pretty frequently, but as Isaiah gets older, the amount of time we're there continues to get less and less.  Pam treatments were supposed to be every 8 weeks until he turned two, now we're stretching them out to every 9-10 weeks and by the time Isaiah is three, I believe it'll be every 12 weeks (woo hoo! No offense Dupont family, we love you!)

Something else has changed since Isaiah is two, he's now ready to go to OI Clinic.  OI Clinic involves seeing his geneticist, orthopedic surgeon, and a physical therapist with OI experience, all at once!

Since we live a few hours away from the hospital, the doctors and schedulers did me a huge favor and squeezed us into the schedule when we were there for his latest Pam treatment.  It made for an exhausting day (especially because we also did a sleep study the night before, yup.), but was worth it.

We were grateful to have clinic the same day as pam for more reasons than just convenience.  The PT we'd be meeting with had a chance to stop in while Isaiah was relaxed and getting treatment.  When she arrived, he was rolling around playing on his bed in Day Medicine so she was able to see him comfortable...(he wouldn't be comfy later at the clinic appointment, because it all looks like a doctor's office, and spoiler alert, he actually fell asleep while we were in clinic, which really would have wrecked her chances of seeing him moving).  Her meeting us in Day Medicine gave us the chance to really talk about Isaiah from a PT perspective, what we're doing with him and what she'd like to see him do.

After Pam was done that day, we headed right to the sign in area for clinic.  From there, we made our way to X-Ray, where Isaiah had his spine and legs x-rayed.  They also included his right arm to check for the fracture we suspected (this was mid-September).

Once we were finished with X-Ray, we were brought to a room to wait for everyone to arrive.  They had been meeting with other families and then checking out Isaiah's X-rays together.  We were expecting to talk about rods with the doctors, so we knew that was a big conversation they were having over the xrays.

What are rods?
Rods are something many with OI get placed in their limbs if they are fracturing a lot (they basically act as internal splints) and to help straighten the bowing in the limbs if that's there.  There are different types of rods.  Isaiah's orthopedic surgeon works with what we hope he can get- FD Rods aka Fassier Duval Telescopong Rods.  Telescoping means they grow with the person, which means less replacing, less surgeries, as compared to other types of rods.  The rods are surgically placed inside the bones....and honestly, I don't want to go too much more beyond that right now, because it scares me.

Rods mean a lot to us.  I believe Isaiah feels unstable.  I believe he feels the fragility of his bones and that's why he isn't more active.  I am hopeful that rods inside of his bones will give him the courage to move.  But....according to Isaiah's ortho, it's not quite time yet.  He'd like to see more to Isaiah's bones.  He doesn't feel his bones are right for FD rods yet, but believes they will with a bit more time.  In the meantime, we're listening to the PT we met with who offered us a laundry list of things to work on with Isaiah and his therapy team at home.  She wants him bearing weight on his limbs and although it makes us extremely nervous, we're working on it.  More details on that in the future. ;-)

Isaiah's geneticist is thrilled with the progress of Isaiah's skeleton.  Isaiah's bones look brighter/whiter than they've ever looked before.  He has no scoliosis and that makes my heart sing.  Remember how he had a moderate kyphosis and we were put on limitations on what to do with Isaiah?  Well guess what?  That's practically gone!  He has one vertebrae affected by the kyphosis, as compared to the four that were affected last year, so that's fantastic news.  That means the pamidronate is doing it's job and Isaiah's bones are getting stronger.  OI type III is deforming; there's no way around that.  It will be a constant battle to keep his spine as straight as possible.  His spine is very important, because if it curves too much, it can very much affect everything in his torso.  His lungs are already restricted by the space available, curving of the spine would restrict that space more.

Speaking of his lungs....we've also recently found out the results of Isaiah's latest torture sleep study!  Details on that later.

Gosh, if you actually read all of this, you deserve a cookie.  :-P

Surgery Complete

If you're not following on Facebook, you may think isaiah is going through the longest surgery of all time. :-P Isaiah's surgery lasted about an hour and a half. Dr C met us in the waiting area and told us that it all went smoothly and that we could see him shortly in the PICU. The wait to see him was maybe 15 minutes? But it felt like 15 hours. The patient liaison brought us into the picu to wait in a waiting area- we passed by isaiah in his room with probably at least 10 people with him. It took all I had not to veer into that room. 

We didn't know what to expect when we were let in, but thankfully Isaiah needed no breathing support and was already looking like himself, just seriously grumpy and confused. He did a lot of grumping throughout the day,a little playing, and some on and off sleeping. 

He did a lots of moaning like he does when he's hungry but he had to steer clear of eating for a while. I held him on his mattress on my lap for about two hours which quieted him. Although it calmed him, it also may have helped spike a very high fever....104 at one point!  I kept commenting that he seemed hot, but we honestly thought it was related to the environment- the room was hot and he was all covered up.  Once his temp was read, we quickly got him back in bed and striped of all extra covers and padding.  Being off of me helped too and his temperature quickly dropped back to normal. (So if you notice that he is blanket-free in most of our pictures, now you know the reason. I promise I'm not neglecting him and leaving him to lay there cold :-P )

It took some time before they would let him have any food or water but 3.5 hours post op, they allowed some water. We first offered it by dipping his pacifier in a cup of ice water. He went crazy for that paci!  He just kept repeating "go!" for more water. Soon we were able to give him an ounce in his sippy cup and he guzzled it down. We waited a bit and gave another ounce. Waited a bit, another ounce.  Then he was cleared for food. 

He wasn't really in the mood for much, but throughout the rest of the day, he nibbled on a few crackers, had some peanut butter, a couple spoonfuls of pureed fruit, and half a nutrigrain bar.  We had tried giving him some favorites- mashed potatoes, corn, and chicken but he didn't eat more than a bite or two of each.  

So far he's refused milk and any more water (besides some sips here or there) so he's staying on IV fluids for now for the nourishment. 

Tonight Dave is on duty.  I am getting a night's sleep at the McDonald house because he has to head back home to head back to work so he's giving me the night off to rest up. 

Honestly, in terms of pain, today was the easy day. Tomorrow and Wednesday will be the real challenges as the anesthesia will have completely worn off. 

Hopefully our Super Isaiah will handle it as well as he handled the surgery. 

Thank you so much for your love and prayers everyone. To know so many are praying for our baby.....it's incredible. We know he got through today thanks to his strength and also because of you.  

You believe in Isaiah and we love you for it. 

Good night...hopefully! ;)