The Boy

(Warning--This post is super long! And don't miss the post about the girls below.)

On Saturday, June 16th, Christopher was a happy, seemingly normal baby.  I took this video because he was just talking and talking!  This is what he usually does when he's awake.

He was a little bit fussy Saturday night, but I put him to bed and he went to sleep.  He woke up at 1:30 and was very upset.  I tried a suppository because he hadn't messed his pants that day, and within minutes he filled two diapers.  I thought that would take care of it, so I bundled him back up and put him back in bed, but he wouldn't calm down.  We tried the swing, tylenol, rocking, music, more food, and nothing worked. Matt took him to the ER so that I could get some sleep.  He called me and told me that they were admitting him because they couldn't get him to calm down either and he was needing more oxygen than he should have needed.

I went to the hospital after sleeping for a little bit and I sent Matt home to sleep.  The doctor thought that since Christopher had recently had an ear infection, he could possibly have meningitis, so she sent us down for a head CT. I was standing right outside the hall when the tech came out and met the doctor and she pulled him into a room with a serious look on her face.  I knew right away that something was wrong.  They came out and told me that Christopher had quite a large bleed in his head.  I was very surprised and just wanted to know what in the world had caused it. I saw the images of the blood, and couldn't believe it. What a headache he must have had! Luckily, very little, if any, of the blood was actually in his brain (there are membranes that protect the brain), and it was not pushing the brain enough to cause him to stop breathing or anything. For the viewing pleasure of my many medical family members, here are some nice pictures of the bleed (for which, thanks to HIPPA, I had to sign my life away).

 

The doctors did everything they could think of to figure out what had caused the bleed. I've never seen so many specialists!  They finally came to a consensus that it was a hemorrhagic stroke, but they needed to find out why it happened to prevent it from happening again. I think it was Tuesday, the 19th when I was sitting by Christopher and he started to get really fussy and his right arm and leg started twitching (the stroke is on the left side). That went on for about a minute, stopped, then started up again a few minutes later and went for 5 minutes. On this unit if a seizure goes on for longer than 5 minutes they give Ativan, so that's what they did and it worked immediately. Neurosurgery came and evaluated him, and put him on an anti-seizure medication called Keppra. That did the trick! He had another seizure a few nights later, so they increased the dose and he hasn't had one since.

Occupational therapists and physical therapists immediately got involved and began the process of getting him to move his right arm and leg again, since the seizures caused him to somehow forget that they were there. Here he is after one of his OT workouts. He was pooped!

The OT/PT teams and child life specialists are very good at making sure the kids are always entertained while in the hospital.  They found this toy, and he liked it so much we went to Walmart and got him one.  This is the first time he smiled in almost a week. You can see that he is not moving his right side very much (although the IV in that hand didn't help at all!).

The rest of the days in the hospital were just a blur.  He was moved up to the floor, where they told us that his blood cultures had come back positive 4 times in a row for Staph Epi.  This is a bacteria that is naturally found on our skin, but shouldn't be in the blood.  They ran the test 4 times because they kept thinking it had to be a contaminated sample, but after coming back positive that many times, they knew he actually had the bacteria in his blood.  The new theory became endocarditis. Every once in a while some of this bacteria is introduced into the blood stream, where the body's natural defenses usually get rid of it, but in cases of heart defects, where there is scar tissue in the heart, it can kind of find a nice little place to hide out and start growing. There are published cases of patients with endocarditis who develop head bleeds, and they believe that may be what happened in this case. It's possible that a piece of the infection in his heart broke off and traveled to his brain, where it got stuck and burst a blood vessel.  There is still no way to prove that this is the case, but since it's a good possibility, he is being treated with IV antibiotics for the next 6 weeks in order to get rid of the infection.

Here is a picture of his PICC line, where I give him his IV antibiotics every 6 hours. A nurse will come to the house to change the dressing and draw his blood once a week. (For those of you with enough knowledge to be curious, it's in his leg because he has a single ventricle heart. His superior VC is otherwise occupied right now.)

And here are all of the meds he gets orally, twice a day. The red one is an antibiotic that makes everything, even his tears, orange. It can actually permanently discolor soft contact lenses. Gross.

Here he is his first day home from the hospital. He played so hard he just had to take a nap! Turn up your volume so you can be sure to hear the humming he does when he sleeps. He has done this his whole life, and I think it's really cute. The leg warmers are a little girly, it's true, but they are great for keeping the PICC line clean and safe. Matt thinks he looks like a Flash Dance reject.

He is recovering the use of his right side much more quickly than I thought he would. He will have OT/PT coming to the house every week to help him with that and with his milestones. He has follow-up appointments with neurology, neurosurgery, cardiology, rehab, infectious disease, and his pediatrician, so you know what we'll be doing in July!

I guess I should talk about how the rest of us are doing through all of this. We are all very tired, and this has been an emotional few weeks, but we're really doing pretty well. This has been a stark reminder of how sick our little boy really is, even though he doesn't look or act it. When he had his second heart surgery I had several people say, "Only one more to go, right?" Perhaps I painted too rosy a picture. Perhaps I was just naive, but the reality is that these surgeries only prolong the inevitable. He will have to have a heart transplant some day, and those usually only last 5-10 years (sometimes a little longer). There is a good possibility that we will outlive our child, and we have dealt with that (as much as one can), but events like this are very difficult.

That being said, we hold out hope that God will work miracles through our son. We have already seen so many, and it has been such a blessing to have this little boy in our family! There are patients who have had these procedures who are in their late 20s and they're still going strong. Why shouldn't Christopher be one of them? We know that all life is in God's hands, and He has a plan for our son. We hope he will live a long and happy life, but we are also ready to accept God's will if He has something else in mind. One thing is for sure, we are getting pretty good and not taking things for granted!