Friday, September 27, 2013

A Weekend of Monitoring

Aka hopefully nothing.

Sorry for the lack of updates. I had my own dr appointment which involved a run to Lancaster and then got into a minor funk.  

We're super spoiled here in the nicu. Isaiah had his own room and then they had to do work in that room so Isaiah needed to share a windowless room. He was moved while we were in Lancaster. 

When we got back to DuPont, I was in a serious mood.  Usually the rooms feel huge...but when you add in 2 cribs with adorable babies, all the equipment they come with, the adults they come with, chairs for the adults, and the crazy amounts of (teams of) doctors that come in...well, the rooms feel like closets. Full closets. 

On top of feeling claustrophobic, I was having some serious emotional issues. Sitting next to a mom that got to hold, cuddle, and love on her baby affected me way more than I expected it to. Way more.

Thankfully the staff saw we were stressed and got us into a new room ASAP.

And we can breathe. 
(And we can now spot our visitors scrubbing in!)

Speaking of breathing...

The representative from the oxygen company came and brought us the machine Isaiah will use at home.

It's a cpap machine with a crazy big nasal cannula. 

And as you can see we're all having trouble making the thing stay on. There are many layers of tape on Isaiah's cheeks. There's even Velcro. I'm pretty sure that the next step is duct tape.

Just kidding.

This thing is helping him keep his co2 at a safe level. It's just not pretty. I had a plan for his Halloween costume, we may need to alter that plan to a scuba diver? 

It's a great machine because it's portable. It has a 6 hour battery life. This is fantastic. When they were talking before, they were talking about a different machine that wasn't portable...we would have basically been homebound. It would not have worked at all for the many rides we'll be taking to his appointments. 

Anyway, now that his cannula is staying put, Isaiah doesn't seem to mind it.

Even so, once he's awake we plan to completely start over. With the duct tape. ;)

The staff is talking discharge again. They are thinking Wednesday. We want to go a few days testing the new machine and working out Isaiah's feeding schedule.  We want to be sure his co2 level stays at a good place and that he continues to improve. 

We're also talking about the future. He needs to come back for his hearing test. He needs to come back to see Dr. Bober. He needs to come back to see his pulminologist. He needs to come back for his next treatment.

They're trying to coordinate most of that into one day in about 2 weeks. His treatment is due 4 weeks after that. He needs to be inpatient for that in case what happened with his respiratory system was a reaction to the Pamidronate. 

I know some of you may be thinking we are crazy to do the treatment again...but it's so important to his bones, to help them grow stronger, to help with the constant chronic pain he's in due to the OI; we can't give up on that yet. He'll be getting the treatment in the best place for him- back in the nicu with a staff who knows him well and cares about him.

He did have a chest x-ray last night. His lungs look good but he does have evidence of new rib fractures. Thankfully he doesn't seem to be showing signs that he's in pain.

Both Dave and I got a chance today to snuggle with Isaiah for the first time in days. (It was tough/intimidating with the new tubing and wires.) We're hoping to get lots more cuddle time in again this weekend. 

We're figuring it's safe to do so since we both got our flu shots. (This closing really makes no sense; it's just my subtle way to remind you to get your flu shot. Seriously. Or I'll duct tape a nasal cannula to your face.)


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  2. Vicky, you continue to amaze me. I know you have some really rough days, but you've been able to maintain your sense of humor through your roller coaster ride. Isaiah is truly lucky to have been given you as his momma. Hoping for happy, pain-free days ahead :)