Friday, May 10, 2013

Days 22 & 23, Post Op Fontan (May 9 & 10)

Thursday was a pretty easy day.  He didn't have a dressing change scheduled so he didn't have any feeding restrictions.  He's been getting tube feedings through the night to supplement his oral diet.  Protein is a huge factor in wound healing and that's something Eli doesn't eat a great deal of.  He eats some, but not what they would like for "proper wound healing" so they've added protein to his nighttime feeds.  Well, Thursday morning he had a burp that got a little.....oh, shall we just say "messy?"  He only had about 45 minutes left on the feed so we just shut it off.  Overall the doctors and dietary have been very pleased with his oral intake, but more vitamins and minerals won't hurt!

After most of his doctors saw him in the earlier part of the morning, we went for a long wagon ride and visited the play room (Eli's request).  He won't get out of the wagon, but enjoys going in there to look at the variety of toys and possibly touch a few.  Today was also the first day he's worn a real shirt since surgery.  It's nearly impossible to find a button up shirt in his size that isn't dressy so we just went with this AWESOME Eli's MVPs shirt which is a few sizes too big. 

Eli sporting his Eli's MVPs shirt in the playroom
We have to be careful because his right arm has the PICC line with two short "tubes" coming off it.  Those dangle a little and we can't get them caught.  We also have to observe sternal precautions with him for at least 6 weeks after surgery.  One of those precautions is that we can't lift his arms over his head, especially at the same time.  He can do it because if it hurts he'll stop, but we can't do it to him.  That makes getting dressed a little tricky at times. 

After his wagon ride and some lunch, Eli took a nap.  I used the chance to run out and be outside the hospital.  I had no plans and wound up at Staples and JC Penney.  I bought a few shirts for Eli with characters on them that were on clearance.  When I got back he was still asleep.  The boy took a three hour nap!

Thursday night we had some visitors.  Longtime friends of mine stopped by as well as Aunt Ashley Veale and her boyfriend.  The five of us walked the halls and pulled Eli in his wagon.  I think our visitors enjoyed their tour ;)  After they left we started getting ready for bed.  I was worried that his three hour nap would make it hard for him to fall asleep.  He was out before 10pm.  However, he woke up when he had to poop.  Then he was up until 12:15am.  He was playing, kicking his legs, laughing, teasing me, and just being an adorable pest.  I tried explaining that he had to be quiet because there are sick children here who are trying to sleep.  He understood and complied exactly like you'd expect from a two year old.  Eventually he did fall asleep and slept pretty well through the night.  He woke once when the nurse had to check his vitals, pull off his chest tube (drain it) and start his antibiotic, but he went back to sleep once she was done. 

His feeding was stopped at 4am because his dressing change was scheduled for 9am this morning. Today started off kind of rocky.  Earlier I used the phrase "wonky" and I think that's pretty accurate for the events of the morning. As he was waking up and doing his stretching thing, I was in the bathroom getting washed up.  As I walked from the bathroom to his bed, my eyes, out of habit, drifted to the monitor.  It showed a heart rate of 90, which is what he is paced at.  As I put some clothes away his monitor started beeping.  It showed a rate of 160!  It hadn't been but a few seconds since I saw the 90, so I really didn't worry because I thought it was "misreading" and would go back down.  It didn't.  His heart rate was 145-160.  Eli was just laying there watching tv.  He was a little annoyed by the beeping monitor, but otherwise not showing any signs of distress.  I was getting worried because the last time his heart rate rose he got up to over 200 beats per minute and almost had to be cardioverted/shocked to get out of the rhythm.  He wasn't that high, but we didn't know why he was doing 160.  When we looked at the monitor, it looked like he had two pacer spikes for every complex (heart beat).  That means he would have been pacing atrially and ventricularly even though his pacer is set for atrial pacing.

The aide came in and got blood pressure, O2 and temperature.  As she was doing that, three nurses came to our room.  They were soon followed by our nurse (who we hadn't seen yet simply because she was tied up in another room...that's why nurses work together!  It's a beautiful thing!), the hospitalist and the nurse practitioner for the floor.  Keep in mind, this rate had been going on for all of maaayyybeee 3 minutes by the time they were gathering in our room.  They take care of him here!  One of them paged Dr. Steinberg who said he'd be right over as soon as he went to the electrophysiology lab to get one of the computers that controls the pacemaker.  He was here within 10 minutes.  While we waited for him, some of the nurses cleared out because things were under control and Eli was getting very agitated with all the people.  Our nurse stayed in the room while the hospitalist and NP stayed in the doorway.  He was actually fine and calm through the whole thing with the exception of too many people in his room looking at him.

Literally as Dr. Steinberg walked through the double doors to our unit, Eli's rate immediately went to 90.  The unit staff teased Dr. Steinberg about it and as he set up his computer he made a silly comment in response, but there was no smile on his face.  It wasn't as serious as the Sunday night when Eli was in SVTs and atrial flutter, but he wasn't playing around either.  He asked a few questions and began looking through the telemetry strips that had been handed to him on the way into our room.  He started working on the computer and changed a few settings.  After several minutes of this and monitoring Eli, he basically said he didn't think it would happen again.  He said what happened was due to the pacemaker settings.  It's very confusing, but in a nutshell, the atrial wires picked up Eli's ventricular rate.  A setting on the pacer drove Eli's atrial rate higher which kicked on the ventricular pacing, which is why we saw both pacer spikes on the monitor.  The setting had a cap on it of 160 which explains why it didn't go any higher.  He doesn't have an explanation as to why it quit sensing when it did and returned to 90 (other than sensing his presence on the unit, him having the magic touch, and other BS because he was now smiling and being a joker again...which was a relief to me!).  I may not be explaining it well here, but what he said made sense at the time and he isn't worried about it.  He simply said there are things to tweak with Eli's pacer while he's still here and we'll still be doing some minor changes over the next few months.  We have to remember that although Eli was junctional for a year and a half prior to getting the pacemaker, his rhythm could be changing.  The amount of surgery he had could have changed his baseline rhythm to an extent, and it could still be changing since he is only three weeks out.  The pacer will be adjusted accordingly. 

The point is that Eli is fine.  The bad news from all that was we missed our 9am wound dressing time and the team had to move on to other patients.  Dr. Steinberg assured us Eli was okay to continue with the sedation for his wound vac dressing change and our nurse worked on getting that set up again.  Eli was asking for a bottle but we couldn't give him anything.  We didn't know if they could come right over and do it, if they could do it in the afternoon, or even yet today!  We had to keep him NPO until we knew more.  In an effort to distract him, we went for a wagon ride.  He was okay with it for a while but then he kept pointing out the doors toward the family room.  The family room has a refrigerator.  The refrigerator has our half gallon of chocolate milk.  No one has ever said Eli was stupid. 

As I pulled him through the halls he was yelling "choc milk!"  As we passed the nurses station we were told they were trying to get a time from the wound care team and would let us know as soon as possible.  I didn't have to tell them anything, they wanted it changed or to feed him as much as I did!  After a couple more laps I happened to see the lady from the wound care team headed toward our room.  We got back there and found out they were preparing to do it as soon as everyone necessary could be gathered.  They started a little before 11.  I was floored at the difference since the dressing change on Wednesday.  It's definitely almost healed.  The PT doing the change said she agreed with what Dr. Abraham had hoped would happen:  That this may be the last time placing the vac.  The next time they come in it will likely be just to take it off and determine the best way to finish closing it (stitches or natural). 

Originally the next change was scheduled for Monday, but in an attempt to coordinate chest tube removal while sedated for the wound vac change, it's being moved to Tuesday.  At this point we don't know that his chest tube can come out, but he's definitely moving closer to that and by delaying until Tuesday gives him one more day. 

After the wound vac was done I got his toenails trimmed.  Nothing like using a little sedation to my advantage!  I did his fingernails Wednesday!  He was very very funny today as he was coming out of it.  We're very fortunate that he's done so well with all the sedation he's had to go through.  Today he was laughing easily and making funny noises.  I got some of it on video but I can't figure out where to find it on our computer and therefore can't post it here.  Just know that he was doing some silly and adorable things.

He ate a good lunch.  Most of it was mine as he found out he liked my taco salad.  As long as he's eating, right?  Then he fell asleep for a long nap.  When he woke up the good mood was gone and he screamed at me for an hour.  He couldn't decide on a movie, he was uncomfortable in the bed, he didn't want me to move him in the bed, he was hungry, he didn't want a bottle, he didn't want to sit up to eat anything (would have eaten laying down if I had let him), etc, etc.  As soon as he was unhooked from his antibiotic I got his little bitty butt in the wagon and we went for a long ride.  Several stops in the playroom, countless trips around the circle, a long stop to look out the big window at the front of the hospital and parking garage, and a chocolate milk later he was happier.  We came back to the room where he screamed at me for getting him out of the wagon and into bed.  Then he got happier and ate some of his cold supper at 8:30.  Now he's lying in his crib, watching Rio and sucking a bottle.  Hopefully he'll stay awake a little longer because the nurse needs to come pull off his chest tube again and he's due for a couple meds.  Then he can sleep uninterrupted by nursing until almost 5am.

It's been a busy couple days, but he is showing improvement.   His "nicer" attitude is breaking through more and more each day.  I really think he's getting tired of me.  That doesn't bother me because this is a long time to spend with one person.  Hopefully he'll get to see Daddy & Zachary this weekend to help lift his spirits more.  Speaking of those two guys, they are going to ride The Dinosaur Train tomorrow at French Lick.  We heard about this and bought tickets back in March.  We only bought three because Eli's surgery date wasn't set at the time and even if surgery were over, he couldn't be out in that type of crowd.  Zachary, Bryan and Bryan's mom will take him tomorrow.  We didn't tell him about it until last night.  It was so nice to hear the excitement in his voice. 

Zachary's preschool program and graduation are Monday night.  I can't believe he's finishing preschool and is signed up for kindergarten!  My baby is growing up so quickly.  I'm incredibly proud of the big boy he's turning into, but I just want to keep him a baby!  Especially these days, since I only get to see him for a few hours once a week :(  Each time I see him I think he's physically grown and he has new vocabulary.  Last weekend he was using the word "brilliant" quite a bit.  Not sure where he picked it up or what prompted it, but it was cute.  I had a very sad moment yesterday when I realized that I will never again drop him off or pick him up at preschool.  His last day is Wednesday and I'll still be here with Eli.  It's probably for the best because I'd be a crying mess (more so than his very first day, which I am proud to say I handled very well!).

Well I've worked on this post off and on for the past 7 hours!  It's all done during Eli's "happier" moments that don't involve a wagon. 

Specific prayer requests:

- for a good night's sleep for Eli & myself.  Hospital life isn't made for quality sleep.  They're doing their best to cluster his duties, but there's only so much they can do. 
- for Eli's pacemaker to have all the "kinks" worked out before discharge
- for Eli's mood to continue to improve and for him to let himself have some fun!
- for Eli's chest tube drainage to decrease and stay down so that his chest tube can be removed at the same time as his next dressing change. 
- for continued healing of his chest wound
- for our next "Specific Prayer Requests" to include a plea for starting the process of discharge planning (hey, a momma can dream, right?)

Thank you all!

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