Wednesday, September 4, 2013

Busy With Lots of Nothing...Days 9, 10, 11, and 12 (Aug 31 - Sept 3)

Saturday, August 31:  Zachary and I spent Friday night at my sister's house while Bryan stayed at the hospital with Eli.  It felt soooo good to snuggle my snuggly five year old.  I have to emphasize the fact that he's five because he won't be five much longer :(  Six sounds so much older than five...although about a year ago I remember saying that five sounded so much older than four!

Eli had a pretty good day.  The docs are trying him on room air while he's awake and then turning his oxygen on when he sleeps.  He's been maintaining his sats on room air so hopefully he can stay off the oxygen at least while awake.  He's eating a lot better today and even showing some playful moments.  He must be feeling better!

Zachary and I had a fun little shopping trip to Target and lunch with my sister.  Then he and my sister went swimming while I did some sneaky shopping for his upcoming birthday.  Greenwood has nothing left with dinosaurs on it!  I bought more than he needs, that's for sure, but it will be split between birthday and Christmas.  Also, other family members usually let us buy the specific dino stuff he wants and then purchase it from us so they know he's getting the things he wants.  It's all hidden at my sister's house for now, thanks Sissy!

When Z was done swimming we picked up pizza and headed back to the hospital.  Bryan's parents and one of his sisters was there so we all got to visit and eat pizza for a while.  Then they left and took Zachary back to Washington with them.  I hated to see him go, but it's hard to entertain him in the hospital.

Sunday, September 1:  Overall, today was pretty quiet.  Bryan and I decided Eli needed a bath so we teamed up and got the job done.  He HATES baths in the hospital.  It doesn't matter what we do to soothe him, he always screams his head off.  The easiest way we've found is to use two people (one on either side of him) and get the job done.  It goes very quickly and once he was dried and lotioned, he got to cuddle Daddy in the chair.  Because he still has his chest tubes and they're connected to suction on the wall, he doesn't have a very long "leash" from the bed.  While Bryan was holding him, I got the bed linen changed.

The thoracic doctor for the weekend checked on him and had surprising news for us.  He said Eli's chest tube output had decreased so much that he wanted to remove the chest tubes!  Because there were two tubes and Eli is already afraid of most medical personnel, he wanted to take him to the OR/procedure room to do it under conscious sedation.  Before scheduling anything like that, he wanted to make sure Eli's tubes hadn't clotted off which would result in the lower output.  He ordered a chest xray and said if that was clear he would see us in the morning to remove the tubes.  Radiology came and got the films which showed no clots.

We spent the rest of the day watching movies and being silly with Eli.  Again, he ate well and seems to be gaining more energy every day.  He's wanting to sit up and once we help him into position he can maintain it for a long time.  His sats were good all day.  We started his PediaSure nighttime tube feeding earlier than usual since he had to be NPO (nothing by mouth) at midnight. 

Feeling a little better and starting to color in his new coloring book

Monday, September 2:  We had been told Eli's procedure would be at 8 or 9am.  Around 9, surgical transport came to get us.  Prior to that, the doctor had been in to check on Eli and answer any final questions we had.  He was very thorough and explained (even though he's fully aware we've been down this road a few times!) that removing the tubes today doesn't mean he won't need any in the future.  When transport came, Eli sat on my lap on the gurney and we rode down to the preop area.  A Child Life Specialist came with us and Eli watched a Backyardigans show on her ipad.  It helped calm him until I had to get off the gurney.  Then he must have recognized where he was and he started crying.  The anesthesiologist asked if I wanted to come into the room until he was asleep.  He brought me a surgical hair net and a white, zip up HazMat looking suit.  I was adorable.  Bryan snapped one quick picture with his phone and I got back on the gurney with Eli as they wheeled us into the operating room.  I was right next to him as they pushed the sedation drugs through his IV and he drifted off.   It's hard to watch but also comforting to see how much these people who barely know him care about him.  I was taken back to the preop area where Bryan was waiting.  We were then escorted to the surgical waiting room we have come to know so well.  It was completely different this time though because it was a holiday and no one was around.  Seriously, no one.  The lights were dimmed and there was a television turned on.  We sat and waited about thirty minutes before the doctor came out and said everything was fine.  He had an xray taken in the OR to check for residual fluid.  There is a small area that showed some fluid (it had been blocked on previous xray because of the size of the tubes themselves).  The doctor thought the fluid in there was possibly clotting and wouldn't be an issue.  We will see.  Regardless, it was there even with the tubes so it wasn't going to drain if they had stayed in.  We got to go to the PACU and see him as he was waking.  Again, because of the Labor Day holiday, he was the only patient at the time.  Even with the sedation he had both nurses wrapped around his little finger.

Once back in his room he demanded "bot!" which is his bottle.  He drank that and wanted food.  Overall, he was doing very well without the tubes.  After he was comfortable and fully awake, his oxygen was again turned off and he maintained his sats well.  Eventually he napped a little and woke up hungry again.  I told you his appetite was improving!  Bryan left in the late afternoon.  Before and after that, Eli was acting a little silly with us and even laughing at times.  He was starting to hurt but it was easily controlled with Tylenol and Motrin.

Tuesday, September 3:  I had two goals for Eli today:  A bath and a wagon ride.  Most kids would love to get out of their hospital rooms, especially when it's something fun like a wagon ride.  Not Eli.  He's very distrusting of almost anything hospital related.  In the spring it was like pulling teeth to get him to not scream through the halls for the first couple rides.  After he decided it wasn't so bad, he quit screaming but had a look on his face that was a cross between being severely constipated and eating sour candy.  I expected no less this time around.

To my pleasant surprise it was much easier than before.  He was in a pretty good mood throughout the morning.  At one point he looked the window and I asked what he saw.  He said "Papaw's truck."  We didn't see anything like that out our window, but I asked if he wanted to ride in the wagon and look out the big window and find a truck like Papaw's.  He agreed very quickly!  After we finished breakfast (bites of pancakes with syrup, bacon, and scrambled eggs!) he was ready.  I asked the nurse if we had to take our IV pole or if he could be unhooked for a little while.  He wasn't getting a lot of fluids anyway and it would be easier to take him without the pole if they were okay with that.  She called and got an ok for him to be unhooked with activity.  Yea!  So off we went.  Before we got to the window he said he wanted to go to the play room.  He remembered that on his own because I never said anything to him about it!  We went in there and the first thing he wanted was to play basketball.  There's an arcade type basketball machine in there with severely deflated mini-basketballs.  He loves it.  I told him he'd have to get out of the wagon which he immediately agreed to.  So for the first time since August 22, Eli stood on his own two feet.  With me helping hold him up, he took shaky steps to the basketballs and started playing.  He got more confident with each step.  Too quickly I had to get him back in the wagon and head back to the room but that was only because his diaper was close to leaking!  We ate lunch and he wanted back out.  We went but this time went out to the playground.  Again, I told him if he wanted to play he had to get out.  Because he was still in search of papaw's truck he wanted me to hold him so he could see the parking lots around us (we're on the third floor so he couldn't see the vehicles).  Once he was satisfied he wanted to walk around and even ventured up a set of steep stairs (with lots of bracing help).  He walked back and forth across the equipment several times but wouldn't even consider a slide.  He let me carry him down the steps because his legs were a little shaky going down.

Excited about getting some mail today (Thank You!)  He tried to hold both for the camera, but unfortunately the Mickey Mouse card got folded so he could more easily show the TRex drawn in the card Zachary sent him. 

After that we went to the Family Room because I hadn't had lunch yet!  We heated up a frozen pot pie I'd stored in there and went back to the room.  He promptly sat on the couch and invited me to share the pot pie.  By 2:30 this afternoon he was working on his third meal!  After we ate I got our nurse so we could get his bath done.  She called Child Life to see if they could come make him happier while we gave him a good scrubbing.  It worked a little and he got to keep a toy frog that was used during the bath.  He got another linen change and then we hoped he settle down a sleep a little.  After all, he'd had more activity that day than he had in nearly two weeks!  He finally fell asleep about 5:30pm.  That nap was 45 minutes long.  He ate a few bites of supper and went back to sleep for an hour.  I tried to wake him but he would just mumble something (probably not something nice) and roll over.  He woke at 8:30 when night shift came to do their assessments.  He wasn't happy and I knew I had to do something to wear him out again so he'd sleep before midnight tonight!  He was willing to go back to the playroom so off we went.  He played basketball, trains, rode the little car around the unit, and rearranged a dollhouse.  As he was pushing his car around the hallways he stopped outside of room 8.  It was occupied, but he stopped and said, "my room."  It was his room...for several weeks last spring.  I told him his room was further down the hall.  He looked around and again told me we were at his room.  I said, "No, you've got a Peyton room down this other hallway."  Then he remembered and we moved on, but it was sadly cute to me.

We played a little longer and came back to the room by 10.  He ate a few more bites for supper and brushed his teeth.  Right now he's watching a movie and occasionally saying funny things to me.  He's taken to calling me "Sir" today.  "Eli, do you want a wagon ride?"  "Yes, sir."  "Eli, do you want another bite?"  "Yes, sir."  He says it with his crooked, mischievous smile.  Sometimes he'll correct himself and say, "No, sir.  You Mom" to which I'll say "Not Mom, I'm Mommy."  Mischievous smile again.

Our plan now is for the tagged white cell scan to be done.  Last I heard they were still trying to get it on the schedule for Wednesday.  The nurse practitioner on the floor was going to find out how long Eli would have to hold still for that.  We may be looking at some type of sedation or at least an attempt at relaxation/drowsy medicine to make this work.  We will find out more Wednesday.  Once that test is done, the goal is to get the doctors involved to have a Care Meeting.  That way they can discuss results and make a plan.  The doctors at this meeting would include Dr. Belcher, Infectious Disease; Dr. Abraham, cardiac surgeon; Dr. Steinberg, pacemaker cardiologist.

Again, thanks for caring and praying.  Thanks for the cards sent to him at the hospital, he had a lot of fun opening them.  Also thank you to anyone who has ordered through the Thirty One benefit for Eli (click here for the link to the consultant's page).  So far we've had three days in a row of orders.  Bryan has also been telling me about some generous mail we've received at home.  We've been given some gift cards and money to help us with gas, meals, etc during this time.  It's very humbling to be treated so kindly.  We are very appreciative of everything, thank you!

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