On the road to recovery!

Xavier was one week old on Saturday, June 4th.  After Thursday nights set back, we were moving full speed ahead.  He was looking better and the swelling was going down.  The very next day the breathing tube came out followed soon by the chest tube.  By Wednesday of that week, he was looking pretty good.  Many of the tubes and wires and machines were out.  We were starting to hear a cry and he was beginning to eat.  He had a horrible case of strider, caused by the breathing tube.  Speech came by to listening to him eat.  They said he sounded good, but the strider had them worried.  They made a plan for a swallow study.   Xavier was also a part of a research study which required a post op MRI.  I had mixed emotions about this.  He was finally getting his voice back and waking up.  The thought of more sedation and the possibility of them putting the breathing tube back in made me sick.  I talked to Nate about it and I was ready to tell them to take a walk, we quit.  He felt that it was our duty to help with any study that we could.  Plus what a relief it would be to find out that his brain looked normal.  After talking to the Neurologist, I agreed to go forward.  The MRI would be the next morning around 11am.  I told Nate that we had to be there before he left.

I am so glad that I listened to my husband.  We made it to the hospital with what we thought was plenty of time, however, they had an opening and took him into the MRI early.  He was just getting back as we were arriving.  I was so excited to see him, but there were a ton of people around his bed...never a good sign unless they are rounding.  I never saw these people before except for the on-call pediatrition.  Something was wrong..AGAIN.  Dr. Licht told us that they had found a blood clot at the base of Xavier's brain.  It was not on the pre op MRI so first things first, they took blood work to determine if he has a clotting disorder.  He said that this is not a normal reaction to the surgery and that he needed to be started blood thinning medicine right away.  He sat with us and showed us the MRI.  He reassured us that the gray matter was intact and looked good.  The lovenox injections that he was started on would thin the blood and allow the flow to get around the clot.  In time his body would get rid of the clot on its own.  He was a symptomatic and flow was never blocked by the clot, all good things.  However, X may need to be on a blood thinner for life.  And WE were going to have to give him the shots at home..twice a day!!  I wanted to cry.  I didn't know how I was going to get the strength to stab my tiny little peanut with a needle.  He told me that they would teach us how to do it.  After a while he would not even feel it.  That did not make me feel any better.  I was glad we found the clot.  The blood work came back negative for a disorder, and once I started giving the injections, I got pretty good at it.  He is still getting lovenox but we are down to once a day.  And Dr. Licht was right, he doesn't even notice when I give it to him.

Around this time, our little friend Kellen was in our pod recovering from his Glen.  What a blessing it was to have his parents there to talk and visit with.  They had been in our shoes just six months earlier.  What a wealth of information and support they were for us.  We have been friends ever since.  Our heart babies brought us together.  I know that we have found friends for life.  And I have a feeling that X and Kellen will be friends forever too!!

That really was it...the last of the set backs.  He ended up having some swallowing issues so he did get an NG tube for feeding.  I hated that thing, but it did its job.  Kellen went home 5 days (YES 5 days) after his Glen and shortly after we made the trip to the CCU.  We were in a private room and so I got to spend every night with my baby.  Nate and I took classes to learn to take care of X.  We had to insert the NG tube (horrible), give the shots (bad) and feed him using the pump (easy).  We were getting the hang of it and we started to hear rumors of being discharged.  The car seat test was first!!

HE PASSED WITH FLYING COLORS!!!