Thursday, January 26, 2012

A Busy Month!

On Wednesday, the 11th, Christopher was not eating anything for me, so after calling some doctors, I took him up to the ER at Primary Childrens, thinking that they were just going to show me how to place an NG tube we would be right back home to celebrate Matt's birthday.  That didn't happen.  As I was placing the tube, the cardiologist came in the room and told me to hold off, because he wanted to run some tests to make sure the eating problems weren't masking a heart problem.  He had an EKG and another echo, and after clearing his heart they decided to admit him to see if they could figure out a way to get him to eat and gain weight. I got him to his room and settled him in, and by that time it was pretty late, so I headed home since I was getting a sore throat.  I had a nice little cold for a few days and the doctor asked me not to hold him, so we just went up after Matt got home from work and he held him for me.  They tried to feed him, but he kept resisting and throwing up, so the NJ tube was the only option.  He was put back on continuous feeds that way, then a speech therapist came to see him and she asked the doctor to do an endoscopy to see if his vocal chords were working, because she was pretty sure he was silently aspirating.  Well, she was right!  The endoscopy showed that his left vocal chord is paralyzed in an open position.  If you recall, when he had his heart surgery he had his aorta repaired because it was too small.  Any time the aortic arch is operated on, the nerve that serves the vocal chords can (and usually does, to some extent) get injured, because the nerve goes up and under the aortic arch.  It usually heals in time, but if it is permanently damaged then the right vocal chord will just take over, and the left vocal chord can be injected with something so that it closes.  This also explains why he has had some difficulty swallowing, because he probably has a loss of sensation on the left side of his throat, and the muscles on that side are also affected.  Add to that his reflux problem, and you have a baby who develops an aversion to eating, because it gets into his lungs!  So, we didn't feed him anything orally for a week to give his lungs a chance to recover.  I had a speech therapist show me how to position him when it was time for him to eat again, and he remembered how to do it just fine.  He started off very slowly, but he's working his way back up very nicely.  After a few days of eating orally again and a positive trend of weight gain, we got to bring him home on Monday.  By that time, the cold had moved through everyone in the family, so that was pretty good timing!  He is off the lasix now, but they added erithromycin to his meds because in low doses it improves motility. (Did you know that?  I didn't know that!)

Here is a view of the mountains I got to pass every day on my drive to the hospital.  We finally got a decent snow storm, and it was beautiful!

Here's a shot of all the equipment we have right now.  It's really not too bad, but he's not easy to just move from room to room.  Don't worry, I hold him a lot.
The sisters couldn't be happier to have their brother (and mom!) home again.  They couldn't wait to hold him and take pictures with him.
Doesn't he look so grown up in this picture?  Needless to say, I am head-over-heels in love with this little boy.

Sunday, January 15, 2012

Cute Pictures and an Update

I love these girls.  One of their favorite things to do is to don their aprons and help me make dinner.  Since this one was easy, I pretty much let them do all of it.  Shannon is cooking the chicken and peas and Leah (in her Cinderella dress, of course) is stirring the orzo.
I went to check on them the other night and found them like this.  Keep in mind--they have bunk beds.  I hope they stay friends forever.  They sure do like to play together.
This is Leah with her "Nanny."  I should clarify that it's her grandmother, since when I usually say nanny people think we hire someone to take care of her.  Somewhere in that family line they started saying nanny instead of nana, and it has stuck for several generations.  I would also like to point out that Leah is a very snugly little girl, but only when she is getting "tickled."  See how Nanny is tickling her foot?  It's her favorite thing.
As for the Christopher update, this picture sums it all up.  I took him to the ER on December 30th because he was requiring quite a bit of oxygen when he shouldn't have needed any (well, supplemental, that is).  They admitted him and he ended up staying almost a whole week.  They did some echocardiograms and thought maybe his Sano shunt was narrowing, so they thought of doing a cardiac catheter procedure to balloon it and open it back up.  Well, they gave him some blood first and that perked him right up, so they held off on the more invasive procedure.  Then he started not eating very well.  We tried a few different bottles and nipples and eventually he was doing ok, so we brought him back home.
Unfortunately, he did worse and worse at home until last Wednesday (Matt's birthday, no less) I had to take him in again because he just wasn't eating much at all for me.  I expected to learn how to place an NG tube in the ER and be out of there, but the cardiologist wanted to run some more tests to make sure there were no underlying causes.  He was admitted again and is still there and is still not eating.  In addition to that, he has taken to throwing up every day and it losing weight.  So, they replaced the NG tube and tomorrow he will have a swallow study to see if he is aspirating anything.  They may push the tube back down to his intestines so that he doesn't throw up anymore, or they may consider diet changes (dairy intolerance?).  Basically, they really don't know what's going on and they have told us as much, but we are still hopeful that they will get it figured out.  At least he's in a great hospital and is being well cared for!  He is quite a bit more fussy than normal, but it could just be because he has tubes all over again.  The doctor has asked that I not hold him because I have had a cold, so his dad has been holding him and singing to him.  He still smiles for us, as evidenced in this video.  We sure do love this little man!


Christmas couldn't have been more perfect.  Since we have to be so germaphobic this year, we missed out on the Gingerbread Festival, the Zoo Lights, the Messiah sing along, the lights at Temple Square, and we had to limit the visitors as well, but I can honestly say I didn't really miss any of those things, because we had this:
The real Santa Baby!
We got to see the girls' faces light up when they both got the princess dresses they asked Santa for.  Naturally, they had to put them on immediately.  Shannon is Princess Tiana from "The Princess and the Frog," and Leah is Rapunzel.
Here is Leah dancing with her Rapunzel hair and Shannon playing with Leah's new doll.  Believe it or not, this is after I had cleaned up a bit!
The boy, enjoying his chair and watching all the excitement. We got this outfit from a neighbor and I just love the little red pants!
Christmas morning!  I love how they look just completely overwhelmed.
Another thing that I just didn't get to this year was having the girls do a play.  That is, they didn't memorize anything.  Fortunately, they are always willing to perform, so when I told them that I wanted to see them sing a song together, they were very willing to oblige.  Christopher even sang along!
The kids got "A Charlie Brown Christmas" book, the movie of which I think we've watched 100 times this season. I am not exaggerating when I tell you that Leah sat in this spot for a solid hour and pushed the same button over and over again, singing along each time.  She REALLY likes this book!