Back Under

Life with us is never dull.  Today we spent at Primary Childrens, and poor Kai had to be put back under anesthesia for an MRI to check up on his hydrocephalus and a few other things.  He also had a CT scan done beforehand and I got to be in the room for that one!  I even got a picture (the people at the hospital must think I am crazy because I am constantly pulling out my camera).  Kai was a trooper during the CT scan.  He just looked around and was completely content.  


After the CT scan and the MRI (to which we didn't find out the results as of yet--hopefully soon), Kai had trach/vent clinic, which consists of us staying in a room while four or five specialists (ie pulonmonlolgy, respiratory, genetics, etc) come to see how Kai is doing.  I have to tell you, trach/vent clinic is the best thing ever.  Trach/vent clinic takes care of the need to see all the specialists in one visit instead of having to have all the separate appointments (and the struggle to get Kai out of the house).

As for today's trach/vent clinic, all went well.  They said that Kai seems to be doing great, and no changes to his vent settings (yet).  The put the CO2 monitor on him and his carbon dioxide levels were in the 40's and 50's.  SO much better than they were even when he was discharged from the hospital in January, but even still, they took a blood gast (poor guy, another poke) to verify.

Kai is now over 18 pounds!  He has done some amazing growth this last month.  Whether it is because of the vent (and not having to work so hard to breathe) or the change in formula, or both, he has gotten so much bigger!  He is now at 22% on the growth charts and 98% of where he should be--meaning he is right on track, which is fantastic!  The RT was so funny when she saw him because she was so excited about his baby fat rolls!

The pediatrician talked about *gasp* wheelchairs.  Okay, that has been a hard one to wrap my head around.  Our OT brought up the dreaded word a couple months ago and we completely dismissed it.  Kai is still too young to consider it, right?  After all, our stroller is (was) working just fine.  She was completely amazed that we have been able to make it work with a regular stroller thus far.  In fact, she said that we can get an "adjusted" stroller that has room for all his equipment, including his vent and oxygen.  YAY!  Then she started talking wheelchairs.  Here's the kicker: insurance will only pay for one adjusted stroller OR wheelchair every five years.  Ah stink.  So, we need to think long-term; what would be most beneficial for Kai.  Surprisingly, the answer may not be the dreaded wheelchair (hooray).  The doctor said that with Kai needing the head support and reclining position that he requires, an adjusted stroller would be less bulky and easier than a wheelchair with the same features.  Sweet.  I don't know why, but getting a wheelchair in essence makes it feel as though we are giving up on him being able to walk, and trust me, we aren't.  We have an appointment set up in March to check out all our options and choose the right fit for our family.

In other potentially good news: our number is up!  When Kai came home on the trach we were put on a waiting list for a program that would give us additional nursing (respite) hours.  When Kai was put on the ventilator, we were "bumped" up on the list, but were told it could still be a year or more before we could actually receive those additional hours.  On Monday, I spoke to the Coordinator of our nursing and asked more about how to get the additional respite hours and she gave me some information.  Kai had a follow-up eye appointment so I didn't have a chance to call the number she gave me, but it didn't matter because I got a call from them!  She wants to meet with us Friday to talk about a possible 30-40 more respite hours a month (starting later this month or in March)!  We are dancing in the clouds.  Date night!  Family events together...someone to help me when I go to appointments...being able to go grocery shopping...an extra hour of sleep...a weekend away...all now possibilities if we get the hours.

It is amazing how much something as simple as going to the grocery store is appreciated when you are unable to get out and do it.  Additionally, it isn't simply a matter of "when J gets home I can go" because he doesn't come home two nights a week and on the other two days that he works that he does come home, he doesn't get home until after eight.

We are praying that we get those additional hours!  Just the thought of having the additional nursing has raised our spirits so much.  We love our little guy to pieces, but we definitely need breaks to help recharge our batteries!
  I finally got a picture without his fingers in his mouth!  I had him sitting in his stroller and he was intently looking out the window as I folded laundry.  He was chomping on his fingers and I got some great shots of that as well, but he lowered his hands for a second and I was able to capture the moment!