CT Results

Eli had his CT scan yesterday and we got to speak with the neurologist today.  The CT confirms that Eli did have a stroke.  Actually, he suffered multiple strokes.  Most of them are on the right side of his brain but there was also one small one on the left side.  In case you don't know, the right side of the brain controls the left side of the body and the left side of the brain controls the right side of the body.  Because most of Eli's damage is on the right side of his brain, that causes deficits on the left side of his body. 

His left arm and leg are significantly weaker than the right.  The right side of his face is a little weaker than the right.  Yesterday (Monday) he started aggressive physical and occupational therapy.  Their goals are to work with him 4-6 times a week.  Because that's both PT and OT, they're hopeful one department or another will be working with him each of the seven days. 

He's also started with speech therapy.  First of all, we don't know how much his swallowing muscles are affected by the strokes so he's at high risk for aspirating.  Secondly, even though Eli has said several words to us and they are appropriate for the situation or question presented, he could easily have language issues.  Speech therapy will assist with both those matters.  It's very convenient that Eli has his feeding tube.  Because of that we can nourish him 100% until we know he's able and willing to take food and drink by mouth.  We don't have to pressure him into it, we can go at whatever pace he sets.  Also, not to diminish the importance of speech therapy, but at this stage PT and OT are critical for Eli so speech will come in second to those therapies. 

The neurologist told us he was very surprised to see how well Eli was doing and to hear the positive things he's heard.  He said based on the neuro exam Friday and the CT results Monday, they didn't like what they were seeing.  Of course we were very pleased and relieved to hear that Eli was exceeding expectations because we can only go up from here, right?  Something Dr. Pappas (one of the pediatric neurologists) brought up today was Eli's vision.  He tends to look to the right most of the time.  Dr. Pappas thinks there's a strong possibility Eli's vision in his left eye is affected.  He may not even have vision in that eye.  I asked if that was something that could come back and he doesn't think that's likely.  However, we don't know for sure what vision he may or may not have at this point. 

From a cardiac standpoint, Eli is doing very well.  He's off all his cardiac medicines except Lasix which he was taking prior to surgery anyway.  He has surprised everyone with how well he's tolerated being without a pacemaker.  He is in a junctional rhythm, but he's maintaining a rate in the 80s when awake and the 60s when he's asleep.  That is slightly lower than the rates he was running right after surgery, but so far he's doing great.  The only medicine Eli's getting through his IV is his antibiotic which we anticipate he'll have for at least five more weeks. 

Finding out that Eli did indeed have a stroke was rough to hear.  We expected that to be the news, but it was still hard.  It's actually good to know for sure because if he were having all these issues and the CT were negative for stroke, it would lead to more questions.  Another reason yesterday was hard was because it was Jan 27.  Three years ago yesterday we took Eli home after his first open heart surgery.  It was a date that had stuck in my head the past couple years as one of the highlights along this journey and the news yesterday ruined that highlight in my mind. 

Eli has been very, very busy today.  The doctors thought it would be good for Eli to take a wagon ride and get out of his room.  We were even encouraged to leave the unit so he could go to the lobby and look at the rubber ducks in the fountain.  Our nurse found a large wagon and we filled it with pillows and blankets.  She got a portable monitor and oxygen tank.  Then Bryan lifted Eli into the wagon and we got him settled with more pillows and blankets.  When we were getting ready and told him he was going for a wagon ride he told us "No!" but we kept on anyway.  I'm pretty sure he enjoyed himself.  We looked at the ducks for a while and also took him through the stormy lights (an area that lights up with different colored lights and makes storm noises when sensors are crossed).  I'm not sure if he looked at much, but he was definitely more relaxed than he'd been in a long time.  In fact when we got back to the room he was very sleepy so we just left him in the wagon.  He slept for about 30 minutes before going back to his bed. 

He was fitted for two splints for his left arm today.  It was neat to watch her mold them to fit Eli's arm/hand and then make adjustments for his thumb and add velcro straps.  He has very little movement in the hand or wrist and the splints will help with extending those muscles so he doesn't get too tight.  He will also get a boot for his left foot and leg that will help with the same thing.  He got two splints today because one is for daytime and one is for nighttime.  The nighttime one goes from his fingers to almost his elbow and he'll wear it for 8-10 hours every night.  The daytime one isn't as long and he's to wear it a couple times a day for several hours each time. 

Therapy also worked with him today in addition to the splint fitting.  They got him to the side of the bed and one therapist sat behind him while another was on the floor in front of him.  It took both of them to work with Eli because he's so weak.  He's weak all over but especially on the left side and in his neck which makes it hard for him to hold up his head.  In addition, we can't forget that he's only one week out from open heart surgery so we still have sternal precautions for him.  He can't be lifted under the arms, lay on his chest, or raise both arms above his head for at least five more weeks.  That makes it even more difficult for therapists to do their job with him.  He tolerated it really well, fussed some, but cooperated which is very unusual for Eli!  They even got him to the floor for a few seconds to see if he could bear any weight.  Of course he didn't like that and it was hard to safely support him so it didn't last very long. 

Yesterday and today he's sat in a seat provided by the therapy department.  It's called a Tumble Form and it's kind of like a car seat but has velcro straps to help hold him in.  We put the base on the couch, place the seat in it and then put Eli in the seat.  Once he's velcroed in he's sitting on the couch like a big kid again.  He did this for 35 minutes Monday evening and for another 30 minutes after his nearly 30 minute therapy session today.  He fusses while he's in it, but he fusses a lot of the time anyway.  I really think he likes the seat because it's a different position than one we can achieve in the bed.  He's got to be tired of sitting in bed so much, which is probably why he was almost helpful with therapy today. 

Another big deal today is that the kid finally pooped!!!!  It's a big deal because as the day went on his belly got bigger and bigger.  We started Miralax a few days ago (five doses in as of this afternoon), he got glycerin suppositories yesterday and today, and then a Dulcolax suppository late this afternoon.  The next step was an enema which was not far from happening when he finally went.  He had two stools tonight and his belly looks much softer.  He seems much more comfortable too. 

This evening he sat on the couch in Bryan's lap for a while.  We used the opportunity to open some of his mail.  He got some stickers, blue glow-in-the-dark bracelets, monster trucks, activity pads, and funny cards.  He's not giving much away with his facial expression these days, but when we asked if he wanted to open another package he clearly said, "Yes!"  Bryan and I switched places so I got to hold him for a while.  Soon he was very tired and ready to head back to bed.  The little monkey slept for a while, but woke up when I put his oxygen on him.  He's been awake for nearly two hours now even though his eyes keep drifting shut.  He fought sleep last night too. 

I told someone today that if he fights the effects of stroke half as well as he fights sleep then he'll be in good shape.

Specific Prayer Requests:
- that Eli continues to make progress and amaze everyone
- for his mood because he's beginning to show frustration as he realizes parts of his body don't work like they did before...we aren't even sure what parts he can feel and what he can't
- that Eli's pain is easily controlled (we don't always know what is pain & what is frustration)

- for Zachary who is a trooper back home keeping his grandparents and aunt busy, doing great in kindergarten, and just being an incredibly awesome kid

Thank you for the many ways we've been shown support in these last few days.  These are some of the hardest things we've ever had to go through.  It's very confusing to be so grateful for everything Eli is able to do and yet so sad over the things he's facing.  He's three.  He's a baby and he's had to fight his whole life.  Now his fight is that much more complicated and difficult.