Sunday, January 26, 2014

More of the Same

Not much to report today but since I didn't post Saturday I thought I should now.  Eli sleeps a lot.  We think a lot of that is due to pain meds, but it makes it difficult to assess his neurological status.  We can usually wake him a little if we shake his shoulders or talk loudly to him.  He often wakes on his own but that's usually because he needs pain meds.

When he's awake, it's not like his normal awake.  His eyes are only open halfway at the most.  He has talked a little bit.  Saturday morning he was very upset and crying (and coughing!).  We don't want to always assume he's hurting and immediately give pain meds because they knock him out.  However it's a safe assumption that crying means pain.  Anyway, we tried talked with him a little and he said a string of words to us that neither of us could understand.  It started with "You..." followed by a few words we couldn't make out.  I tried to remove the pacifier and see if he'd say it again but he just bit down harder on the paci.  We kept asking him questions as we tried to decipher what he wanted.  Between cries he finally said "Way down!"  It was clear enough that Bryan, one of the residents who was in the room, and myself had no doubt about what he wanted.  So we reclined the head of his bed more.

During all that he was moving his right arm and leg very well.  He was moving the left arm and leg also.  It wasn't as much as the right, but it was more than he'd moved them the day before.  As the day went on he would give us some "uh-huh" and "uh-uh" answers.  They were appropriate for what we asked.  Twice yesterday when he received his Dilaudid (pain med) he didn't go to sleep right away.  He had a few minutes of peace and he was awake, although getting sleepy.  We used those times to really make eye contact with him and talk about things.  He looked at some of his photo album pictures. We asked him if he wanted to watch a movie on Sunday.  He said "uh-huh."  I asked if he wanted an Ice Age movie and he said "Ma-car."  It made us happy to hear him provide answers.  Just to be sure, Bryan asked him if he wanted to watch Madagascar to which he answered with another "uh-huh."  As awesome as it was to hear him say "Mommy" the other morning, it's more rewarding to hear him say he wants to lay down or request a specific movie.  Some of the movements and little sounds he makes are Eli-like which are encouraging as well.

The majority of his day is spent sleeping.  They're repeating the CT scan Monday.  It may tell us something, it may not.  Like I said in my previous post, whatever it shows doesn't really matter.  It would be nice to have confirmation of a stroke or proof there wasn't, but regardless we see Eli's condition and that's what has to be treated.

Today we're hoping to get his hair washed again.  The glue that is used for the video EEG monitors and the solution used to remove them leaves his hair oily and stiff.  It's been washed once, but will take another shampoo or two to get more normal.

Yesterday was the 25th of January.  It was exactly a month ago (Christmas Day) that Eli started limping; our first sign of trouble.  We had no idea then where it would lead.  I can't believe that a month ago we were playing with the gifts from Santa and getting ready to open ours (the four of us opened ours on the 26th).  It seems like it was a lifetime ago since the four of us were together in our home. 

Usually I do pretty well while we're here in the hospital.  But this time is different.  I think it's because we don't have to do things for Eli all the time.  We're used to him being sleepy for a couple days after surgery and we use that time to rest up, but this time we're still waiting for him to show us more.  Don't get me wrong, I'm thrilled about the signs he's given because they are very important.  But I want more.  Part of me wants to look back through the blog posts and see how long it was after his Fontan in April before he was awake, talking, asking for a bot, and watching movies.  I haven't let myself do it because I know it was before this point.  He's five days out and we're not much different than we were on post op day one (Wednesday).  Obviously I know that seizures and a possible stroke change things dramatically and I'm just not fully accepting those changes yet.  I think I would do slightly better if we had more positives from Eli or even more info about what his deficits are. 

Last night after Bryan left Eli's room to go to our sleep room (we take turns spending the night in Eli's room), Eli had several minutes of open-eye time.  We talked and he looked at me.  I apologized to him for pushing him to do so much when he's already doing so many things that take a lot of effort.  I told him we are so incredibly proud of him for everything he's fought through.  This kid has shown more strength in the past six days than I have in nearly 37 years.  And his whole life has been a fight.

Specific Prayer Requests:
- for Eli to keep showing signs of improvement
- for him to poop (yes, we're back to that issue.  he's had a lot of narcotics and he's not mobile so things in there come to a standstill)
- for me and Bryan to accept whatever is coming and to make the best decisions for our family
- for the patience of whatever therapists are brought in on Eli's care because he's never cooperative for inpatient therapy!

Thank you again for all the prayers.  We know they work.

***Addendum:  Since posting this, Eli has had a long stretch of time where he was awake (eyes still only about halfway open).  We changed his diaper and got his DVD player set up on the bed.  Bryan put Madagascar in and skipped "da 'mercials" as Eli used to call the previews.  He's been like that for over an hour.  The doctor came in and examined him and we discussed his pain med management.  We had asked if there was something between Dilaudid and Tylenol available to him.  Some other options were talked about, but the doctor wants to go with Dilaudid at a lower dose since we know it works for him.  They're also scheduling his Tylenol every six hours for the next four doses so we don't have to ask for it.  We'll see how this goes.  He just got his first lower Dilaudid dose and is still kind of grunty.  We think that may be because he needs to poop!  As I type this he's got his eyes kind of open and looks like he's fighting sleep. 

I forgot to mention that he's had all kinds of things removed and over the past two days:  he's off vapotherm and sating well on 1L of oxygen, his Foley catheter was removed and he is peeing well, his phenobarbital is just at the maintenance dose twice a day, his arterial line was taken out today, his PICC line was removed Thursday night and he will get a new one sometime, his femoral line and bulb anesthetic were removed (where they placed an incision so he could go on bypass), the dressings over his abdominal incision (from the pacemaker box) and his sternum were removed (sternal incision looks amazing!), and his temporary pacer wires were removed.  Yesterday, Dr. Abraham said he might remove Eli's JP drain (collects chest drainage) today.  The only thing we've added is that he's now able to get some nutrition so he has Pediasure feeds going through his g-tube. 


  1. Jessica I know this is very hard on You and Brian. I can relate a little as when Julie was 9 yrs old and had her tonsils out we went through a crisis period and had to have her transferred from Yuma to Tucson and found out Julie and I both have Von Willibrand Disease. Little Eli and your family have many people praying for you and I know that GOD will bring you all through this crisis. You, Brian and Zachery are a strong family unit for Little Eli and this has brought you closer to each other. I know it wears on your nerves but you guys have stayed strong and positive which is a blessing for Little Eli. We don't understand why Little Eli has to go through this struggle but God has a plan for your family. Know we are thinking of you daily and praying for a full recovery for Little Eli and your family. So happy I was able to spend time with you on Sunday night. Little Eli amazed me getting around with his box of wires dangling just like a normal toy he would be toking around. Love and Hugs to All, Sharon

  2. You are doing so well, you are so strong and such a great mom. I have been thinking of you and praying for you so much the last few days. You are handling all of this with so much grace and patience. You are an amazing woman! Praying for Eli, and you and Bryan, and Zachary.