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. ;-)

Isaiah's Hydrocephalus

Since Isaiah's surgery, I've gotten a few questions about why Isaiah needed a shunt placed and how it's changed things for him.  We're only 9 days post-surgery, but I have already been able to see changes and wanted to share them with you.

Because of the shape of Isaiah's skull, his jugular veins aren't where they should be and have trouble doing one of their jobs- getting the spinal fluid out of Isaiah's head.  Because the fluid slowly backed up and accumulated, his body made extra veins to try to help it flow but they couldn't do the job, thus moderately enlarging the ventricles of his brain.  That extra fluid caused pressure on Isaiah's brain. 

A shunt was placed to help get the fluid out of Isaiah's head. Dr. Google has provided the next two images if you wonder about the shunt.  One of Dr. C's physician assistants showed me a shunt like this:

The Ventricular Catheter is the part in Isaiah's head.  There are teeny tiny holes all around the end of it to slowly collect the fluid.  The shunt valve is something she mentioned to me...I blocked her out a bit when she was explaining about it (it freaks me out still, to be honest), but if I remember right, that's what they'll use to test it at first if they think there is a malfunction in the shunt at any time.  That part kind of bulges out of his head a bit (kind of like how Isaiah's port bulges out of his chest) under his skin/hair.  From there they threaded the Distal Catheter down to his abdomen lining (there is another incision where they cut into the lining of his abdomen to place that extra tubing). See below.

I swear, that threading of the Distal Catheter is what hurt Isaiah the most out of this whole thing, especially in the neck area. Actually, I was afraid that they broke his neck in surgery because of how he responded (and still responds, honestly) when we put our hands there to lift him....remember, we don't lift Isaiah under the armpits like a typical 1 year old, we lift behind his head/neck and bottom. I've never been more tempted to try to lift him under the armpits than I've been lately because of his response when I put my hand behind his head.

Anyway, one thing you sometimes see in young babies with hydrocephalus is that once they have the shunt placed, their enlarged head gets smaller....that won't be the case for Isaiah.  His head measures the same as pre-surgery and will likely stay at that measurement for some time...if all goes well, it'll be years before his head grows more.  This is because his skull is hard.  Thanks to the shunt, his ventricles should be smaller now and his brain will fill in the now empty space as he grows older.  I feel like I could make a joke here, but all of this medical stuff hurts my brain and I have nothing.

His soft spot before surgery feels remarkably different from before.  It didn't bulge out of his skull, but now it dips in (in a kind of I-can't-quite-touch-it-yet kind of way).  

The biggest thing is that his veins are changing.  I feel like the veins on his forehead are becoming less noticeable (unless he's sitting up and working hard);  The veins on the sides of his head used to pop out crazily- It could be the fact that we haven't cut his hair in months (and months), but we noticed that those veins are completely sunken in now.  

I tried to get a before and after picture of the side vein popping; this is the best I could find.

The past few days, I've noticed that when Isaiah is on his pulse ox (he still sleeps with that to monitor his oxygen saturation while he sleeps), his heart rate has been lower.  He's had the same baseline heart rate for the last year...but it's decreased a bit the last few days and I think that's related to the pressure in his head being relieved (and that decrease is a good thing!).  If that pressure was causing him pain and discomfort, it shouldn't be anymore, and that's evident in the heart rate numbers we're seeing nowadays.

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Ok kids, enough talk about Isaiah's hydrocephalus for now. <3 

Can you believe Wishbone Day is only 2 weeks away?????? Yeah, me neither.  

If you are new to the blog, Wishbone Day is celebrated in the OI community on May 6th each year.  It's a day of awareness of Osteogenesis Imperfecta and all you have to do is wear yellow and spread awareness of OI.  This year it is on a Wednesday, right smack in the middle of OI Awareness Week.  

During OI Awareness Week, I am planning to do a little Q&A series called OI Want to Know.  Do you have questions about what it's like to care for a child with severe OI?  I want to answer them and any other question you may have and basically nothing is off limits...OI, motherhood, my emotions, our family life, etc.

If you have a question, feel free to leave a comment on this post, email me, or send a message to Isaiah's Facebook Page.

I look forward to posting the answers to your questions during OI Awareness Week so get to asking. :)

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! ;)