Thursday, May 16, 2013

Days 24 through 29, Post Op Fontan (May 11 - 16)

Wow, it's been a while!

Saturday, May 11:  Just a lazy day for both of us.  Eli was out of bed for a wagon ride in the morning, but we skipped one in the afternoon because he was sleeping.  He took a long nap (over three hours).  He woke about 7:30 and we ate lunch leftovers and some things I had in the fridge.  Despite the long nap, he went to sleep at a decent hour and had a pretty good night.

Bryan & his mom took Zachary to French Lick to ride The Dinosaur Train!  We told Zachary about it on Thursday so he had a couple days' anticipation built up.  He had a good time and came away with some new dinosaur stuffed animals (one for him & one for Eli) and a Dinosaur Train; Dinosaurs A to Z book that was featured on the show.  He was a happy little boy :)

Zachary hugging the leg of a long neck dinosaur

Sunday, May 12 (Mother's Day!):  I hope everyone had a good Mother's Day.  Even though we were in the hospital, it was still a very nice day.  I got exactly what I wanted which was to have the four of us together.  The guys gave me a pair of opal earrings.  When I opened them and exclaimed how pretty they are, Zachary told me that he picked them out.  He also said Bryan had another pair picked out but they weren't as pretty so he insisted Daddy buy this pair for me!  I like what I have but it does make me curious to see what Bryan's first choice was ;)

We spent part of the day on the playground because Zachary has never gotten to play there before.  Eli just hung out in the wagon and watched for a while but later we lifted him out and put him on Bryan's lap for a photo on the slide.  He rode down on Bryan's lap and sat at the bottom for a minute.  Then he wanted up on his feet.  That's the first time since before surgery that he's shown interest in getting on his feet.  With Bryan's help he toddled around the play yard while I trailed behind carrying the wound vac and tubing.  Eli did really well, but was glad to get back in the safety of his wagon!

Me & my boys.  Eli was ready for a nap and didn't want a picture, but we took it anyway!

Monday, May 13:  I left the hospital about 9am.  Bryan's mom and Aunt Judy came up to spend the day with Eli so I could come to Washington for the day.  I hadn't been home since we left in the early hours of April 16, but I easily found my way back although the bread crumb trail I left had long disappeared.  I'd planned all along to go home for Zachary's preschool program and graduation that night, but was able to leave earlier to pick him up from his last day of preschool.  He was surprised and I got big welcoming hugs from Zachary and his teacher, Ms Angie.  I've known Angie for years, we went to WC together.  Bryan and I knew Zachary would be well taken care of while he was at preschool, but Angie Robinson and Carrie Garland have stepped it up even more this last month.  They've bought and worn Zachary's Fan Club tshirts, taken pictures with him and sent them to me via cell phones or Facebook, given him extra hugs, and sent me little updates about how he's been at school.  It's been so comforting to know how well taken care of he is.

Surprising Zachary at preschool pick up!

Zachary, my mom & I ate lunch at Mi Pueblo.  Then we went home where another surprise was in store, but this time it was for me.  Ms. Yvonne (a retired school teacher from WC who is also the pastoral associate at Our Lady of Hope Church) organized some kids (high school age I think) to come to our house and work on our landscaping.  Our bushes were trimmed, weeds and lots of dead plants pulled from the flower beds, and LOTS of new flowers planted in their place.  It's much prettier than anything I've ever done to our place!  In addition to that, they planted flowers and laid mulch in two new areas for us.  Along the north and east sides of the house we now have new flower beds.  I was so surprised and touched by the beautiful gesture Ms. Yvonne organized and the kids who worked on it.  Just by the chance that any of them are reading this, THANK YOU!
The planter under our front window

A close up of some of our pretty new flowers :)

Zachary's program wasn't until 5:30 in the afternoon so we had some time to spend together.  I did a load of laundry and washed a few dishes.  I also got to take a shower in my own bathroom and a short nap in my bed.  Zachary snuggled up next to me and watched television while I dozed.  I hated to sleep away time I had with him, but I was very tired.  It also counted for some great snuggle time that we both needed.

The preschool program was a success and the graduation ceremony was very cute.

Zachary found us in the crowd :)

Zachary with Ms. Angie, his preschool teacher for two years.  He sure is going to miss her.

Zachary with Ms. Carrie, the teacher assistant he's had for two years.  He loves her too.

Zachary with Ms. Yvonne, the mastermind behind our landscaping renovation.  She is one of the sweetest people I've ever met.  Our community has been so lucky to have her play such a big role in children's lives.  Everyone loves Ms. Yvonne (and not just because of her bread!)

Zachary with Sarah Wichman, a high school helper at the preschool and one of the volunteer workers who helped transform our yard.  In addition to working in our landscaping, Zachary says she chased him around the yard quite a bit!

Proud Mommy & Daddy

The Graduate

After the program we went out to eat and then went home.  I quickly packed up and spent a little more time with Bryan and Zachary before leaving.  I got to look through some of Zachary's school work, including a packet to celebrate Mother's Day and Father's Day.  The kids were asked questions about their parents and the teachers wrote down their answers.  One of the funniest questions/answers was "How tall is your mommy?"  I don't remember the exact number he said, but Zachary's answer was something like "60 pounds."  Too cute!

I left two of my boys to head back to my baby boy.  I got to the hospital about 10:40pm.  Eli had a very good day with Mamaw Linda and Aunt Judy.  He walked a little in therapy and was in a good mood most of the day.  I'm so grateful to Linda and Judy for coming all the way up here for a long day so I felt comfortable enough to leave.  I miss being home, but I know we'll get back there soon.  It's just not the same without it being the four of us anyway!

Tuesday, May 14, 2013: His wound is looking better & better.  In fact, when they took the dressing off, they only cleaned it and put a regular dressing over it.  THE WOUND VAC IS GONE!!!!!  He's much happier without it (he did very well with it, but feels better with it gone).  It's crazy to me to think that it only took 12 days to close something that was three inches long and one and a half inches deep (down to the bone).  It looks great and we'll just change the dressing that's on him every three days or so.  The best part of it is that he doesn't have to be sedated anymore and we don't have to withhold food and drink for hours prior to changing it.

While he was still groggy from the sedation, we used the opportunity to change his PICC line dressing.  It has to be done weekly and it's easier while he's not fighting us.  I don't know how we'll get it done at home without drugs but we'll figure something out!  I joked yesterday that the longer we're in here means the less often we have to change it at home (just pointing out an advantage to spending this much time in the hospital!).

Just as he was finished with everything, he had a visitor.  It was Izzy, a pet therapy dog and a volunteer handler.  Eli has had several canine visitors but he hasn't been a fan of them.  Today (with drugs in his system) he was more receptive and even allowed her on the bed with him.  He petted her for a long time and said "Albert" many, many times.  I showed a picture of Albert so people knew who he was talking about.

Eli and Izzy

After Izzy left, Eli had another visit.  There were two players from the Indianapolis Indians (minor league baseball team).  Brandon Cumpton and Kyle Waldrop (pitchers, I believe) were escorted room to room.  Eli wasn't very talkative yet, but he was okay with them being in here.  They asked him a few questions and he stared at them.  He was still groggy from the meds so he was maybe seeing more than two guys in front of him!  We got a picture of them beside Eli's bed and they moved on down the hall.  Eli must have remembered the ball players in his room because he talked a lot about baseball as the afternoon went by.

Eli with the Indianapolis Indians players who visited

He had a therapy session which consisted of walking to his wagon for a ride (we moved the wagon a few doors down which may have ticked him off).  He wouldn't get out of the wagon after we were done so I took him outside.  As we soaked up the sunshine, he pointed to a picnic table.  It was the first time he's indicated he wanted out of the wagon.  Of course I put him at the table and later he wanted to go into a play house.  He did well outside but was ready to come in and get a drink.

When we got back to the room, he had some mail to open.  His baby cousin Alyssa had sent him a care pack with a note and some stickers.  He opened it himself and pulled everything out.  When he was done, he carefully put it all back in the envelope.  It was so cute to watch!  Aunt Cara, Uncle Andrew and baby Alyssa are planning on coming Friday afternoon for a visit.  Eli will be so happy to see Alyssa (and the others as well, but he loves his "bebe!")

He ended the day with more trips around the unit and a stop in the playroom.  Then he wanted me to hold him while he laid his head on my shoulder.  It's so nice now that the wound vac is gone because I can hold him chest to chest again.  Prior to the wound vac he was too sore from surgery and the growing abscess, then he had a large tube sticking off the middle of his chest which made it difficult to snuggle.  Now we can snuggle up the way it's supposed to be!  After 45 minutes of me walking around holding his nearly 30 pounds on my scrawny forearm while my other arm was around him because he was unsteady, I had to call it quits!  The nurse and tech came in and he got a bath before bed.  Then his nurse helped him choose a movie to watch.

Eli with Steph, one of his favorite nurses.  She used to be a tech when Eli was first diagnosed and is now an RN.  She's seen him grow through the years and stages of surgeries.  We've been very lucky to have many of the same nurses throughout Eli's hospitalizations. 

Wednesday, May 15, 2013:  Eli wanted out of bed and into his "pway room" earlier today.  As soon as his morning antibiotic was unhooked we changed his clothes and headed out.  He cried because I made him walk from the bed to the wagon (which a student nurse had covertly moved a few doors down to increase the walk).  He played in the play room, wanted to go to the playground, got out of the wagon and played with other kids who were out there, went back to the play room, sat on some riding toys, and then took over sole use of a car which he rode in for the next hour.  He pedaled that car up and down the hallways and around the entire unit.  I think every nurse, doctor, tech, secretary, and even some parents on the floor were impressed that Eli was up and so busy.  He was all business when he was driving, there were no smiles.  While he was in his car, we had a surprise visit from Brenda and Lee Jones (my mom's cousin and her husband).  They've been Eli and family supporters from the start and it was very nice to see them. 

Eli and Mommy hanging out on the playground equipment

Riding the rocking airplane

Mommy & her crazy driver
A visit with Lee and Brenda Jones

 While Eli was pushing his car around the hallway, we checked his pulse ox.  It was 79-82% while he was active.  We'd like it to be higher, but he was tolerating that level really well and (more importantly?) having fun.  When I finally got him back to bed it was because he was getting so tired he could barely stand, but he wouldn't come back on his own so I had to carry him.  In total he was out of bed and off the oxygen for almost 3 1/2 hours and was busy the whole time.  He didn't argue at all when I picked him up and seemed glad to be back in his room.  We checked his pulse ox before reconnecting his oxygen and it was 85-86%.  Again, they'd like it to be higher, but they do think it will increase over time.  For now, he's on oxygen while in his room, but can be off it when we're motoring around the unit. 

Another reason his o2 levels may be low is because his chest tube is actually draining more fluid.  What comes off is looking cloudier meaning it may have some fats in it.  Eli is being put on a low fat diet and his nighttime tube feeds are changing to something called Protogen.  Everyone says it's a good thing he has his gtube because it's torture to get kids to drink the stuff.  His low fat diet is actually pretty easy to deal with because he doesn't eat a large amount of food anyway.  The biggest change is going to skim milk in his bottles instead of whole milk.  He didn't seem to mind it when we gave it to him so let's hope that he continues liking skim milk for as long as this diet is necessary (perhaps 4-6 weeks?).  Other than the milk, I just have to watch and make sure he doesn't eat a lot of fats.  We're already recording every bite and drink he takes and the dietician said she didn't think we needed to change much about his food diet if he tolerated the milk change well. 

He took a nap and my sister came while he was asleep.  Once awake, we took Ashley on a tour of the unit since she's never been anywhere but our rooms.  It was another nice visit on this beautiful day!

Usually Eli & Ashley are very goofy with each other.  I think that's why I like this pic so much, because they're just hanging out.  I love the way he's looking up at her.

Thursday, May 16, 2013:  Not a busy day.  I talked with his physical therapist yesterday and told her about his marathon of activity.  She was very impressed although I don't know if she believed he really could walk without screaming since that's all she's seen him do.  We agreed that he may be more active in therapy if it's "his idea."  We agreed that I would have him out of the room (either in the playroom or on the play ground) around 11am today and she would just happen to join us for some play time.  I think he caught on in the middle of it, but the session went much better.  He kept one eye on her the whole time, which was very easy for him since he was wearing his awesome Buzz Lightyear sunglasses.  He didn't like being outside this morning, but it was very humid and probably didn't make him feel too well.  We came inside to the play room where he immediately got in the car and started out into the hallway.  We convinced him to go to the therapy room (he's never been in there before, they always come to him).  He only went because we told him there was a basketball goal.  He went in, got out of the car, shot the ball once and got back in the car.  That's Eli for you. 

What a get up he had on today...Colts hat, Buzz Lightyear sunglasses, Zachary's Fan Club tshirt, orange and blue plaid pajama pants, and tennis shoes.  He can pull of any look, any season!

After lunch, the Child Life Specialist told us there was a group in the play room and they were making picture frames for the kids.  I took Eli in and there was a large machine set up to cut names into a wooden mat which was then placed into a picture frame.  These are free for the kids in the hospital.  I liked Eli's so much that I bought one for Zachary.  This man and his daughter donate their time and materials to do this for hospitalized children.  I haven't taken the time to look at their website yet, but I want to learn more about them. 
Personalized frames for the boys
Eli is just waking from a nap.  We're planning to watch the Pacers and just chill out for the evening.  Well, that's my plan.  Eli probably thinks he's going to drive his car again. 

Specific Prayer Requests:
- for Eli's chest fluid to decrease so we can get his chest tube out
- for his oxygen saturation levels to come up to be in the low to mid 90s
- for good, restful nights of sleep...the past few nights haven't been bad, but not good sleep for either of us.

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