Day 9 mid-day update

Today started out rough again with a 6am blood draw - poor Ethan screamed & screamed that it hurt & that the lights were too bright & that he just wanted to go back to sleep. It's hard to see him be in pain & not be able to help him - that's definitely starting to get old for me.  Speaking of pain, he hasn't complained of any in several days, other than saying it hurts his throat to cough.

The blood lab showed he was still a little low on potassium still so we tried hiding it in a glass of sweet tea but that still didn't work.

In rounds this morning, today's cardiologist seems a little more aggressive with treatment (in a good way)! He was surprised Ethan's still on nearly max dosage of Lasix so he nearly cut it in half, still by IV today, but only every 12 hours instead of every 8. This should also help with the potassium issue :)

Also for today, he wants to start weaning the oxygen so we can get out of here sooner rather than later. We're also supposed to continue working on keeping Ethan active & do more breathing therapy to help expand lung volume & decrease fluid. Ethan's down to .2L since about 9am & has been doing great so far with says staying above 92!

Ethan walked all the way to the elevator, rode it down from the 5th floor to the basement, walked down the hall to have his chest X-ray, then walked all the way back to his room without tiring out (about 30 min total) which is huge for him for being only 8 days post-op! We are quite a site walking through the halls pulling our wagon loaded down with a portable oxygen tank, monitor & all the wires & oxygen cannula. It really slows us down but Ethan's being very patient & cooperative.

Time for lunch, rest time, then up to the playroom at 2! Will update again later. Thanks for all your continued prayers!

Day 8 - evening update

We had a pleasant afternoon & evening tonight. We made it upstairs to the play atrium twice today plus borrowed a game between our 2 visits to sit up in bed & play. We were also visited by our pastor this afternoon. While he was here, we got an afternoon treat of ice cream bars & also a visit by 3 clowns!

Then later in the afternoon, Ethan's peripheral IV (PIV) in his foot blew so they took it out. Now all he has is the one PIV in his right hand. Hopefully tomorrow's chest X-ray will look a little clearer & they'll be able to transition him to oral Lasix so he won't need the PIV in his hand & can get that removed too since it's barely hanging on. We also got to remove the gauze bandage from his chest tube removal so we're feeling less & less uncomfortable each day!

Ethan was also surprised with a HUGE Lightning McQueen balloon that he's enjoyed playing with!

Tomorrow he's due for another 6am blood draw :( followed by probably another attempt at trying to disguise potassium in something to eat or drink. Today we were mildly successful at getting him to take his morning dose in a cup of OJ & his evening dose in a cup of Crystal Light lemonade.

Tomorrow we will also have a chest X-ray & continue walking & breathing therapies.

As always, thanks for checking in on us & continuing to keep us in your prayers!

Day 8 & counting...

Well, things are moving along slower than we were originally told they would but the doctors in rounds this morning aren't concerned, they said it's normal for this recovery to be a little longer than the last one because more of the body is having to adjust to the new blood flow. I asked about a possible window for discharge & they're saying Tuesday or Wednesday would be optimistic.

Not much new to update since mid-day yesterday. In fact, yesterday sorta felt like a day off. We didn't take as many walks but the ones we did take were longer than the ones we took downstairs in the PICU. We spent a lot of time trying to just catch up on rest mainly. In fact, Ethan's still asleep at 9:30am as I'm writing this!

The plan for today is to get at least 3 walks in, plus really work hard at taking BIG, deep breaths to try to open up his lungs more & continue on IV lasix & the other IV diuretic to also help pee off the fluid buildup. He's still on .3L of O2 & we're not going to change anything today.

We plan to make stops at the play areas during the walks so he can have a little fun & forget the fact that he's sitting up outside of his bed/room.

We also plan to work with the respiratory therapist - blowing bubbles, blowing pinwheels, etc to help with the deep breathing exercises.

Please keep up the prayers - we still need them & know they are working! God even answered a small one for me at 5:30am when they came to draw blood for labs & couldn't get any blood to flow so they had to dig around a little. Poor Ethan was crying & saying ouch but as soon as I silently prayed, the blood came!

Day 7 - mid-day update & picture

Ethan & I slept well overnight once we finally got settled into our new room - we actually got to "sleep in" until 7:40am! That's late for us here at the hospital but it is about our usual waking time at home.

Nothing new will be happening here today except a visit to the top floor playroom! There's also a small play area here on this floor, so that was a welcome surprise on our morning walk.

Ethan's still on a little bit of oxygen (.5L overnight & down to. 3L since about 9am). In morning rounds, they decided that weaning oxygen was low priority & since Ethan's not complaining about it, I'm fine leaving it on him for now.

We're also scheduled for another chest X-ray but just waiting for an appointment time. Downstairs in the PICU, they brought the portable machine to us but I guess now that we've "graduated" to the floor, we have to travel to the X-ray floor to get it done.

That's all for now. Time for lunch,  rest time (we're watching a Mickey Mouse Clubhouse DVD) then a walk up to the playroom at 2pm!

The picture is from him sitting up on his own, playing with the train table here on the floor! I think this was a good distraction b/c this was the first walk where he didn't fuss at all & he even made the loop around the whole floor unit, not just the end of the first hallway & back like we were doing downstairs.

Day 6/7 - Movin' on up!

Well, as stated in our last update, this update is being made from our new room on the step-down floor (CICC)!

We got moved up here around midnight. Ethan was already asleep & was not too happy to have to wake up for vitals & his midnight dose of meds. But he's so tired that he fell back asleep before his nurse even left the room.

Not much will change in terms of recovery/care/daily goals while being up here but it's nice to not be monitored quite as frequently. The main purpose of being here is for me & Dan to take over most of his care - eating, diaper changes, learn his med doses & frequencies so we will be ready to do it completely on our own once we get discharged.

Ethan had a good rest of the day today - he sat up for the majority of the day, ate a big lunch & dinner, & took a total of 5 walks. The last walk upset him the most - so much so that his o2 says dropped so they put him back on 1L oxygen for a couple hours. He's now down to. 5L & has been there for a couple hours so overnight they'll try to wean him off it completely.

Well it's late & I'm exhausted - have been up 18hrs so it's time to sleep while Ethan's asleep. Goodnight all & thanks for your prayers - please keep them coming!

Day 6 - mid-day update

What an eventful day we've had so far! Ethan is in a much better mood today - really starting to be the fun & playful guy we all know & love instead of the fussy & whiny kid we've had the past several days.

We played paper dolls this morning, as well as started making pipe cleaner & string puppy dogs from his Klutz activity book.

Then, right before noon, Ethan got his last chest tube removed! The pain med, combined with all the rain made for one sleepy boy, who I thought for sure would take a nap, but then we had a hospital- wide code red for a tornado warning so that kept his attention & he never fell asleep.

After the warning expired, Ethan got brave enough to let me leave him for 20min (most time he's been left alone previously was 5min for bathroom break) so I could run downstairs to the cafeteria to pick up lunch to bring back & eat with him. He one of his biggest hospital meals yet - 1/2 slice of NY style cheese pizza (which was huge & equivalent to 2 slices of take-out pizza), 1/2 small side salad, chocolate milk, & a few bite-size pieces of watermelon.

We took our second walk of the day around 2:30pm & now we're back in our room & resting. Oh, I mentioned that he's in a better mood - he just discovered the buttons on his bed that can adjust the bed position so he's enjoyed controlling that by himself - sitting up & laying back down. Up until today, we've been the ones controlling it & he didn't like it much!

Next update today will hopefully be from our new room on the floor!

Day 6 - making progress!

Dan spent the night with Ethan while I slept at the RMH for a change. I Since we're going to be here a little longer than we first thought, I got up early & did a load of laundry before heading back over here to the hospital.

Since Ethan's stable & making good (albeit slow) progress, Dan decided to go into work for a few hours today. Never really got an update on how it went overnight but Ethan did get off oxygen around midnight last night!

The chest X-ray this morning looked a little better but there's still some fluid so they decreased his frequency of Lasix (diuretic) & added another diuretic to help him continue to pee off the excess fluid. I think they've seen enough drainage from his right chest tube that they feel it's OK to pull it today!

There's also talk of trying to make room for him up on the floor today, but if that works out, it probably wouldn't be until much later today.

So, we're just going to continue hanging out here for noe. Still plan to stay on same schedule as yesterday to get up & walk every 2-3 hours. We took our first walk at 10am & it's almost 10:45 & Ethan's still not back in bed yet - he's been sitting up in the recliner for the past 40 minutes! They want him out of bed ad much as possible today so he can recover faster & keep the fluid draining off his lungs. He still fussed a little during the walk but didn't shed any tears this time, so that's progress!