Wednesday, October 16, 2013


Yay! We made it!  In and OUT of DuPont in one day! ha

Yesterday we had two appointments-; one with Isaiah's puminologist (Dr. Heinle)  and one with his geneticist (Dr. Bober).

I'm just going to give a quick summary because I'm typing one-handed- I'm using my other hand to hold Isaiah while he sleeps on his mattress in my lap (and while Carl nuzzles my head. ha). :)

-Dr. Heinle showed us the results of some testing they've done 3 times on Isaiah- once when we first arrived at DuPont in August, once when Isaiah was really sick and having trouble with his co2 level, and once before we left DuPont the last time.  
Time Warp.  This is from Sept 18th- one of his hardest days.

When you breathe, your chest and belly move in and out together.  In the beginning of Isaiah's life, his chest would go in when his belly went out.  He took really quick, shallow breaths.  Dr. Heinle showed us graphs of Isaiah's breahing...honestly, it mostly went over my head, but I gathered that Isaiah's breathing is improving every day!  There were some great changes in the graphs from August to October.  He's starting to get the correct chest/belly rhythm.  He's taking slower, deeper breaths.  

When we go back in November for Isaiah's next PAM treatment, they are going to perform this test 2 more times.  Once with his still hooked up to his C-PAP (Trilogy) machine and once without it (!!!!).  We're hoping to see him taking great breaths on his own.  We're hoping he'll be able to get off the machine, maybe only needing it when sleeping.

When it comes to the machine, I've learned something new thanks to one of Isaiah's home nurses.  There's a spot on the monitor that always says "RR 0 BPM" but over the past few days, different numbers are starting to appear.  Plus, this little blue circle pops up from time to time.  The nurse was telling me that when the person on the machine starts breathing stronger on their own, that "blue moon" appears.  This means that Isaiah is starting to take bigger, deeper breathes that the machine can register! This is wonderful! 

-When it comes to Isaiah's need for oxygen, Dr. Heinle officially gave us the go-ahead to try him on room air instead!  The oxygen is hooked up to the Trilogy.  Isaiah's oxygen level has been statting at 97% and higher on the lowest oxygen setting.  He was even on room air for his ER visit on Sunday.  Starting today, we're going to unplug the oxygen and see how he does! Cross your fingers! (Update: I need to be more observant.  Dave unplugged the oxygen 2 hours ago. Ha.  Isaiah has yet to go below 97%! And he's even been passed out sleeping. Go baby go!!!)

-Speaking of the ER visit, we asked about the "fluid" in Isaiah's lungs.  What was seen on Isaiah's lungs on Sunday is an improvement from his X-rays in September.  Back on the 18th of September, his lungs were scarily filled with fluid.  With the 2 X-rays after that (I think it was 2), and the 1 from this Sunday, there's actually improvement- much more air is seen.  Since Lancaster General didn't know he had fluid in his lungs before, they didn't know there was an improvement so they assumed this was new.  We're hoping that when he gets another chest x-ray in November that it will be filled with even more air.  However, there's a chance what we're seeing now isn't actual fluid at all; there's a chance it's inflammation due to the rib breaks and now that they're healing the inflammation is going away.  

Now on to Dr. Bober's appt...
-He's very happy with Isaiah's weight gain.  With non-OI babies, doctors like to see an increase of 10-30 grams a day.  With Isaiah, we want to see an increase of 5-10% (given how he won't grow as quickly as a non-OI baby).  He's right on target with that.  And actually, he's been trending more 5% so we are going to increase his feeds when Dr. Bober gives us the go ahead (probably next week) as our little guy is officially 9 lbs, 0.5 oz.  

-Isaiah has slowly been weening off of his morphine.  The end of that is in sight!  If he handles it well, he'll be officially off of it by this Friday!

-Dr. Bober asked us how we feel about doing another PAM treatment.  Although we're nervous, we want to go ahead with it.  It should be the week of November 10th.  We're crossing our fingers that he'll be in the NICU again (since they know him).  The plan is to do a whole "check-up" with blood work before PAM begins to check his CO2 level (which was tested at 45 yesterday- and that was with a nasal cannula, not blood, which to me means it's an even healthier level in his blood!).  They'll also do a chest x-ray before hand. His blood will be checked constantly for signs of what happened last time.  The PAM will be stopped the second anyone is suspicious that he's having another reaction.  Hopefully it was a once and done reaction.  

When we got home from our appointment, we had a little skype session with my family where I shared some of the tidbits in this blog with them.
My poor dad hasn't seen his grandson since early September because he had a cold that wouldn't go away.  To make it worse, they were on their way up here when we went to the ER on Sunday (They were actually waiting for us IN our house when we were told we were transporting to DuPont and we never even got to see them).  My bet is that my dad is in major Isaiah withdrawal.  Skype is a great way for him to see him until they can get up here- hopefully this weekend. <3

To end the day yesterday, I decided it was a good time to snuggle up.

Isaiah and I cuddled for 2 beautiful hours last night.  He completely relaxed and also spent some good time off of the left side of his head.  Now that Isaiah's respiratory needs are under control/improving, it's time to focus on getting Isaiah OFF of the left side of his head. It's flat. :(  I'm hoping my cuddling him will get him off of that side (he fights his way up against me when I hold him so I intentionally make it so he turns right for that).  I've also pulled out the z-flo and have been propping him up with rolled blankets when he's in his play pen.  Thankfully there's an OI parent that is a pediatric PT that has been giving me great advice while at home.  Early Intervention is coming this Friday to observe him and get a plan going as well.  

So all in all, yesterday was a wonderful one for Isaiah's outlook! Fingers crossed that we'll be able to see his whole face for Christmas? (Yes, please!)  He's continuing to grow stronger every day.  He's continuing to amaze everyone he comes in contact with.  We're so lucky.

This really didn't end up being the quick summary that I promised you, huh? If you know me that makes sense, I'm pretty long-winded haha

1 comment:

  1. yay, such great news all around! so happy to hear this!