Cardiologist Follow Up Appointment

Well, today makes 4 weeks from the day Ethan had his Extra-cardiac Fontan surgery. Before we were discharged from UNC Children's Hospital, the cardiology team scheduled us a follow up appointment at the Raleigh Clinic (Wake Med's Heart Center). This is where we normally go for all our cardiology appointments (a 15 minute drive is much better than a 1 hour drive!).

Today at the checkup, we did all the usual stuff - took Ethan's vitals (good blood pressure, 96% pulse ox), weighed him (17.0 kg/37.5lbs), measured his height (41.5in/105.41cm), Dr. R listened to Ethan's heart with the stethoscope, had an echo (ultrasound of the heart), and also added an EKG. Everything looked great according to their standards! Dr. R decided to start weaning the main diuretic (Furosemide/Lasix) to once a day instead of twice a day, still 2.5mL dosage. We're able to completely drop the other diuretic (Spironolactone/Aldactone)! In one week, we'll be able to stop the Lasix all together so Ethan will then be back to no meds!!!! This is fabulous news - especially considering the fact that pre-surgery, we were told by the surgeon to expect to be on baby aspirin indefinitely. Also, in the PICU, Dr. R said we'd probably start Enalapril (an ACE inhibitor to treat high blood pressure) indefinitely but apparently that's not needed any more either!!!!

We also got great news to find out that we don't go back for a cardiology checkup for an entire year! What a relief to know that Dr. R thinks he's in good enough shape to go that long between visits! We're used to seeing him every 3-6 months. 

Praise the Lord for taking care of our sweet boy and helping his recovery go so smoothly! Now it's time to get back to our new normal life, just in time to await the arrival of Ethan's little brother, due in only 5 weeks. Poor baby brother still has no name but we're working on it :)

In the meantime, Ethan's enjoying running around without getting out of breath and tiring out easily. This poor momma is the one trying to keep up with him these days! Our next family goal between now and Nov. 2 is to work on getting Ethan potty-trained. He did a great job on Tuesday, wearing underwear all day long and taking himself to the potty each time he needs to go. He was a little late and had an accident each time but at least he realized what was happening and could stop himself and finish in the bathroom! Baby steps! Maybe this Lasix is paying off after all!

One Week!

It's been one week (and one day) since we left UNC Hospital. The week was spent at home, resting and just taking it easy. I didn't realize just how tired we all were from spending 11 days there.

Ethan has slept 12-14 hours minimum every night (he usually sleeps about 10 hours). That's allowed Dan & I some extra sleep as well.

My pelvic pain is nearly gone, which has helped my sleep as well, so at this time I've decided to hold off on seeking chiropractic help. I had my 33 week checkup on Friday & all is still looking great with this baby & pregnancy! Hard to believe our due date is only a little over 6 weeks away! We still have to decide on a name, but otherwise we'really ready to meet baby boy Miles!

Also last week, I took Ethan to the pediatrician for his post-op checkup & also suture removal from his 3 chest tubes. He was scared it would hurt & kept crying, "No, no, don't do it. It's going to hurt!" His doc assured him it would not hurt unless he wiggled so I held his hand & he closed his mouth & screamed & before he knew it, all 3 sutures were out - painlessly! The doctor promised a sticker if Ethan was good but since Ethan doesn't like stickers, he asked for a lollipop. The doc was out of lollipops but told Ethan I'd probably go buy him one (or some other kind of treat) for a reward. So, we ended up buying an ice cream sandwich at the gas station.

That was really the extent of our week. Dan & I did get my parents to watch Ethan for us a couple hours on Friday night so we could get out for a long ovrdue date night at a steakhouse, which was nice. We also made it to church & small group on Sunday! It was our first real family outing & it was great! We especially were excited that Ethan did not get out of breath walking from the parking lot to the church building!

Home at Last!

We have had a great first 24hrs at home! We are so thankful for our friend, Rebecca, from our small group at church to come pick me and Ethan up at the hospital yesterday afternoon since Dan's out of town for work for a couple days.

Ethan is enjoying being back home in his own familiar surroundings. Last night, I let him take a long bath (just had to be careful to not submerge his chest in water) since he'd only had a couple sponge baths in the hospital and had not had a chance to get his hair washed in nearly 2 weeks (poor kid!). It was hard convincing him to go to bed last night because he wanted to play with every single toy for a little bit but after the bath and bedtime Bible story, he fell right asleep.

Ethan was able to sleep 12 straight hours and I slept 9. Another friend from our small group, Kyla, came over this morning to watch Ethan for a couple hours while I went grocery shopping. We have another friend from church coming to bring us some dinner tonight! 

Ethan's much more active now that he's home, but still has some trouble bending over and also sitting/standing on his own. He also has been walking hunched over for the past couple of days. He doesn't say he's in any pain so his nurses think he's just being protective of his chest and will straighten back up over time.

We have a post-op visit with our pediatrician this Wednesday. They'll assess how he's doing and also remove the sutures from his 3 chest tubes. Then we'll have a follow-up visit with his cardiologist at the Raleigh Clinic at Wake Med at the end of this month. The only meds we came home on are Lasix and Aldactone. Both are diuretics that we will eventually be weaned off of, which is good because Ethan puts a pretty big fuss about taking them and we have to take them twice a day.

Thanks, again, for everyone who has followed our blog and prayed for us. Now that we're home, we'll still keep the blog going but will not update quite as often. Hopefully, our updates will be more  about life and less about medical stuff for a while. We look forward to slowly getting back into a routine with fall just around the corner. We are supposed to stay home/away from large crowds & obviously ill people for at least another week, then we can start going back to church, Community Bible Study, & more. We look forward to seeing all our friends again! Ethan still will need to take it easy once we resume those activities - no rough play, no playgrounds, no sports, no tricycle riding, etc. for another 6 weeks while his sternum heals completely (just in time for the new baby to arrive!), but otherwise, his nurses want him to stay active to keep the fluid build-up in his chest at bay.

Day 11 - Going Home!

Just talked to the cardiologist & he said the X-ray from yesterday looked beautiful! He was very pleased with how Ethan did yesterday & overnight so he feels confident in sending us home this afternoon!

Ethan did have a low heart rate on & off all night but all other vitals were normal so they did an EKG just to make sure his heart is still good & it turned out normal so the doctor's not concerned. He said it's not uncommon for young kids in a deep sleep to have a wide range of "normal" for their heart rate & to occassionally dip low like Ethan did (in the 50s).

He also woke up screaming out in pain a couple times, but we gave him some Tylenol & he went right back to sleep.

So now we just sit around most of the day, waiting for discharge papers to be drawn up!

It will be so nice to be home again! We will miss all the great staff here at UNC - everyone has been a pleasure to work with - from the medical teams to therapists to housekeeping & nutrition. We are so thankful for the wonderful caring staff here that has made this the most pleasant hospital stay ever. We look forward to coming back as a visitor to say hi but hope to not have to be a patient again for a LONG time! :)

Day 10 - evening update

Today was a great day! Ethan successfully dropped from .2L of o2 overnight to .1L around 9am. He maintained his o2 sats all morning so at 1pm, his nurse turned the oxygen off, removed the nasal cannula & he's been on room air ever since!

He also had a great looking chest X-ray this morning so they stopped the IV Lasix & started the oral version. He'll be on that 2x/day for about 6 weeks at home I think. The only problem is that he says it tastes bad so I requested if they could mix it with a flavor for his next dose.

We don't want to get our hopes up yet, but in rounds this morning, the cardiologist told me that if all the above things I mentioned go well today & he continues to get up & walk & practice his deep breaths, then the goal is to get discharged tomorrow afternoon!

So far, everything's right on track so please say an extra prayer tonight &/or in the morning that all goes well between now & 8am when the docs/nurses round again & maybe our next post will be definitive as to whether or not we're going home!

Also, add to your prayers for safety & peace of mind for Dan as he leaves us for a couple days on a business trip. And for a smooth transition home. I've pretty much already been the sole caretaker for Ethan's recovery this week but it's been nice to have the nurses around to get hijn in & out of bed, etc so I don't over-exert myself during this pregnancy. The last 2 nurses were especially concerned about me & went out of their way to help b/c they're afraid I may go into labor early if I overdo it & that kinda freaks them out b/c they have no training in labor & delivery!

Well, time to attempt to sleep on this vinyl couch for hopefully the last time! Will update in the morning as soon as I know the plan!

Day 10

Ethan had a pretty good night, slept most of the way through the 6:30am blood draw, only to wake as they were finishing pulling the needle out! This was an instant answer to a prayer I said as soon as the lab tech walked into the room. He suffered enough with the 3 pokes to start the new IV that I just couldn't bare to see him wake up to pain this morning. We've been awake ever since but are in good spirits today.

The cardiologist today came & talked to me after rounding this morning. He said that yesterday's X-ray looked good so he was going to do another today to make sure everything is still looking good after decreasing the Lasix yesterday. If that looks good, they will switch the Lasix from IV to oral this afternoon!

Dan came over around 10am & he came on the walk down to the X-ray lab with us. It'll be nice to have him here for the day!

Also on schedule for today, they decreased his oxygen to .1L (the lowest possible!) & if he can keep his pulse ox sats at 92 or above until this afternoon, then they'll get rid of the oxygen! Ideally, I'd love for that to happen before we go up to the playroom but I don't want to rush it & have to go back on it (or even worse, have to up the amount of o2).

Day 9 - finally over!

First of all, forgive me if any of this is repeat of my earlier post. Without having a computer the whole time we've been here, all these updates have been typed slowly from my phone & it's not easy to go back & check to see where I left off in my last posting. Plus, 9 days of very little sleep, combined with "pregnancy brain" makes for poor memory!

The morning & afternoon were pretty good. Ethan's managed to stay at .2L of oxygen all day with sats in mid-upper 90s! Hopefully they'll drop him to .1L or nothing at all tomorrow but haven't heard anything official on that yet.

Ethan had another chest X-ray this morning so we didn't make it to the morning playroom time but he walked the whole way there & back, which counted for our first walk of the day.

Then, after rest time & lunch, we were visited by the clowns again, as well as some UNC football players. Since the football guys were not in uniform, Ethan wasn't really impressed to meet them. Wish I had thought to get a picture of them with Ethan but didn't think about it until they were already gone.

Next, we took out second walk to the playroom & stayed the entire 2 hours it was open. There was only one other kid there so it was nice & quiet & we had time to check out all the different toys available! We mainly stuck to playing with cars & tools.

About an hour after we got back from the playroom, it was time for Ethan's afternoon dose of IV Lasix. As his nurse started to clean & flush the line, she determined it had blown so she had to remove it & place a new line. This was by far the hardest hour of the 9 days we've been here. :( They've always struggled to get IV's & blood draws done on his little veins & today was no exception. It took 2 nurses, 3 tries & a total of 1 whole hour of blood-curdling screaming & crying before they finally got a new line placed in his left  foot (same foot as the line he blew yesterday). I'll confess I even shed a few tears as I held his hand & tried my best to distract him & help hold him still. The crazy part of it all is that they are about done with the IV Lasix & want/need to start transitioning him to oral probably as soon as tomorrow (Saturday).

After all of that ordeal, he fell asleep & slept for 2 hours. That gave me a little time to rest & recover before Dan showed up. He stayed asleep long enough to also allow us time to slip off to the cafe for dinner together. Shortly after we returned, he woke up & we spent some time together as a family just resting & watching some TV before Dan went back to the RMH to sleep. We never made it back out of the room for Ethan's 3rd walk of the day but I think that's fine because the nurses said he got plenty of respiratory therapy by crying for an hour straight :(

Well, this post has taken me so long to compose that it's officially the next day now so I better try to get some sleep.

In all my focus on keeping you all updated on Ethan, I think I've neglected to share a personal prayer request of my own. For the most part, I've really enjoyed being pregnant & am extremely thankful to have pretty easy pregnancies, buy this time, the 2nd half of this pregnancy, I've been having some pelvic floor pain. Up until Ethan's surgery, it's been fairly manageable, but recently it's really started to affect my sleep. It's become impossible to lay down to sleep so I have to sleep sitting in a chair or couch, which is not comfortable at all here at the hospital. There are no chairs in our room at the RMH so that's the main reason I've been spending most nights here at the hospital instead of trading off with Dan. So that's one more reason we can't wait to get back home! I did finally call my OB doc today to ask for additional pain relief ideas b/c none of the ideas she mentioned at my last visit have helped so she said the next step is to be referred to a chiropractor. As soon as we figure out when we'll be getting out of here, I'll call & book that appointment.

Thanks, as always, for taking the time to read our blog & continue praying for us. Also, thanks for the comments & words of encouragement. Even though we don' t personally respond to them, please know we read & appreciate rach one. You are speaking my love language by posting them!

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!

Day 5 - evening update

Ethan walked every 2-3 hours today! He's still crying & making excuses each time but he's starting to pick up the pace a bit - especially while walking back down to his room! :)

Mid-day today he got his left chest tube removed & he had lots of drainage from his right tube from all the walking so hopefully his morning chest X-ray will look a whole lot better & maybe he can get the right tube removed at some point tomorrow. We're slowly making progress each day! He's still on 2L of oxygen and will wait for morning rounds to see if they want to try to wean him at all.

Thanks for your continued prayers & comments here & on Facebook. Please keep them coming! At this slow recovery pace, they're saying it'lll probably be the weekend at earliest before we'll be able to go home.

Goodnight all, we'll update again in the morning.

Day 5 morning update

Ethan & J slept better last night - no problems falling asleep & no long periods of being awake overnight - just waking momentarily every couple of hours for the nurse to take vitals.

This morning's X-ray looked a little better - still a pocket of fluid around his right lung so the plan for today is to walk every 2 hours. Our first walk was at 11am. The reward was a wagon ride the rest of the loop on the floor, stopping about 4 rooms away & having to walk back to bed.

His oxygen sats have dropped to 85-90 so he's back on 2L of o2 for the day. Hopefully with all the walking & lots of deep breathing & coughing, that will help remove the fluid & give him more room in his chest to expand his lungs. We're also supposed to get the chest tubes out & that will be great! We're thinking & praying that will make walking easier.

E's cardiologist confirmed there's still no room on the CICC floor so we'll stay in the PICU at least another day, which is fine by us b/c there's not really anything different we'd be doing up there anyway, besides having a little less nurse interaction & gaining a full bathroom in-room (being so pregnant, it requires many potty breaks & if Dan or another family member isn't in the room with him while I'm gone, he gets scared/upset & his oxygen sats drop).

Day 4 evening update

Not much new has happened since the last update. We did manage to get Ethan out of bed & into a Radio Flyer red wagon to take a tour of the whole 2nd floor - not just the ICU but also the hallways & we even found our way to a different cafe (it used to be a Wendy's when we were here 4 years ago). We made 2 laps before Ethan said he was tired & ready to get back in bed.

After the wagon ride, Mimi & Pop-Pop came and stayed with Ethan so Dan & I could have a date night.

We're still in the PICU for another night at least, but ONLY because there's no room on "the floor" for us right now. So, that's encouraging that we've met all our goals down here!

Tomorrow morning we'll have another chest X-ray & hopefully all the time out of bed today + increased doses of Lasix today will show enough removal of fluid around the lungs so we can get the 2 chest tubes removed - that's our biggest desire/prayer request right now.

See picture below of Ethan in the wagon!

Day 4 picture & mid-day update

Praise God for an answered prayer - Ethan walked today! He managed about 75 steps out of his room & down the hall! He was crying the whole time, saying he was scared, but he did it! Then we turned around & he walked back another 75 steps, with hardly any crying! His cardiologist, Dr. R, just happened to be there to witness the whole event. He then sat in a chair for about 20 minutes before asking to get back in bed.

His reward was a Holley Shiftwell car from Cars 2! Now he's taking a nap, which he definitely earned & needs!

Dan's Dad (Pap-Pap) came to visit as soon as Ethan finished his walk so his belated birthday present (birthday was Friday, 9/2) was getting to see Ethan sitting there in the chair instead of the bed!

Now Ethan's taking a much deserved & needed nap! Getting up & moving should help with chest tube drainage. Before the walk, a doctor came by to say he thinks the tubes can come out today. Just waiting to see if there's much more drainage after that walk.  If he can get the chest tubes out, we're requesting that happens before Ethan has to walk again to help ease his fears a bit.

That's all for now, we'll update again if anything else major changes. Otherwise, we'll just update before bedtime.

Day 4

No real changes since last night. Biggest goal/obstacle to getting out of PICU is to get Ethan up & out of bed & to stand & walk. In rounds this morning, they said that had to be done before considering removal of one or both remaining chest tubes. We plan to attempt walking within the next hour (once Daddy gets here to help). We're running out of reward prizes & other ideas to motivate him to walk so we're praying he'll just be brave/not scared & conquer this fear of walking. I know it'lll be easier for him once those chest tubes are out but until then, we just have to force him to push through the fear & pain. It breaks our hearts to see/hear him scream about it so pray for us to be brave too! LOL

Day 3 - evening update

Not much has really changed since our mid-day update. I did forget to mention that Aunt Jessica & Uncle Brandon came to visit this morning & Ethan enjoyed their company (especially the snacks & care package they brought!)

Mimi & Pop-Pop (Julie's parents) were here for a couple hours this afternoon & gave Dan & I an hour to hang out in the lobby to play a game for a change of scenery. Also while they were here, Ethan got his central line removed from his neck! It was very scary for him & a little painful because it was stitched in, but afterwards, he got a prize of a new Dr. Material toy!

He never did have to get out of bed & walk today so I guess we'll work on that tomorrow?!? Dan & I are also hoping he'll get the other two chest tubes out since there's hardly been any output from them since the middle tube was removed earlier today.

Well we're all tired so we're going to bed soon & will update again in the morning.

Day 3 mid-day update

This will be a short update. I (Julie) am back at RMH just long enough to freshen up & eat lunch before heading back to the hospital. It's the weekend so no shuttles are running so I have to drive. It's also the first football (home) game so traffic is horrendous. (Go HEELS!)

There's still a lot of drainage & Ethan's not sitting much so we'll be in the PICU one more night. He had z chest x-ray & it looks good. He also had an echo & it too looked good so they pulled the middle chest tube out!

Before that, we managed to get him to stand up & then sit in a chair for 15min! He still has to take a walk today so pray for that. He cried nonstop while sitting in the chair - partly from chest tube pain but mostly just because he was scared. Hopefully with one chest tube gone & lots of prayer, the walk won't be quite as scary or painful for him.

Day 3 - post-op

Ethan had a pretty good night last night! We were only up once last night from 2-3:30am. He held his O2 sats in the mid90s. For the other 2 surgeries, sometimes his O2 would dip lower while he was asleep so this is a huge improvement & welcome change!

Pray for more improvement today in the area of drinking/ eating. They still have him on clear liquids for the morning & supplementing with IV fluids. We hope to drop the IV & start on solid food later today.

Also pray for bravery for Ethan because they want him to sit up more & even stand/walk - both of which he's scared will hurt.

We also think he will get his middle chest tube out which should help his discomfort & fear of sitting/standing.

Finally, pray that he's doing well enough to move out of ICU & up to the cardiac floor. That partly depends on how well he can eat/drink/move around but also is hugely dependent on there being a room available for us.

Doctors are doing their rounds this hour & we have some family coming to visit this morning so we probably won't have another update until noon or so.

Evening Update

Ethan is still up right now watching tv. He got a bath in bed at 9pm which was good b/c he had to sit up for atleast 10 minutes - he's still sitting up after 90 minutes so that is great. He's off all IV meds. The goal for tomorrow is walking and eating mushie food. Thanks for the continued prayers.

Day 2 post-op

Mid-day update: Ethan's still doing well off oxygen, still on blow-by oxygen though. He drank 2 apple juices this morning, got 2 monitors removed (from head & back), got his Foley bladder catheter removed, Arterial line (A-line) IV removed from his wrist, & is on Toridol (sp?) for pain as needed through his IV. He's also taking Tylenol by mouth. He's been awake since the last update at 7am and just fell asleep at 12:15pm.

Main goal for today is to work on getting him up & moving around so fluid can continue to drain from his chest tubes so he doesn't risk getting pneumonia. Physical Therapy (PT) came by this morning & helped him sit up & hang his legs off the side of the bed. They'll be back a couple more times today, gradually building to sitting in a chair & standing on his own. He also has to be off all IV meds before we can leave the ICU & move up to "the floor".

While in ICU, Dan & I can't eat in there, nor can we have our phones on so sorry if we miss your call. We appreciate all the calls & comments on here & on Facebook. We enjoy reading every message, even if we can't personally respond to them.

Please keep up the prayers, we are definitely feeling them being answered!

Good morning!

It is 7:11am and Ethan is wide awake! We are watching Nick Jr. (big surprise) - some show about a blue octopus? Never seen it before.

As you can see in the picture above, the canula (the clear tube that is used to give O2 under the nose) is GONE! Overnight he was weined off of it. Well, technically he is on what is called "blow by" oxygen where a tube is placed close to his face that allows a greater concentration of O2 to be breathed in naturally. His O2 SATS(oxygen saturation) is at 98% right not which is nuts as yours and mine is probibly the same right now.

Overnight was not fun. He was very uncomfortable with the nasal canula. The chest tubes (he has 3) are the primary source of pain for Ethan. He is already off of all IV drip medicines. He still recieves pain meds every now and then but nothing on the constant drip which is great.

Ethan would love to get his chest tubes out and the sensor on his forhead off. I hate to see him unhappy and uncomfortable.

That's all for now. - Dan

Surgery Day - Final Update

Well, as the saying goes, "No news is good news!"

Not much new info to update. The anesthesia's wearing off & he's still been doing well! All his stats have been stable. They've got him on 4L of oxygen until he's fully alert then they'll start weaning him (probably in the morning). He has already started going longer stretches between his doses of IV pain meds & even tolerated taking Tylenol by mouth!

His 2 biggest complaints when he's awake are pain from the 3 chest tubes & that he's thirsty. He can only have ice chips for today/ tonight then they'll try him on clear liquids in the morning. If he tolerates that well then they'll order real food!

As for Me & Dan, we got into the Ronald McDonald House! Dan's staying with Ethan tonight & I'm here at RMH to try to get a good night's sleep (hard to do when nearly 8 no preggo!), then I'll go back over to the hospital in the morning & Dan may come back here to RMH to nap :)

We will update again in the morning. Goodnight all & thanks for your continued prayers!

Surgery Update #2

Surgery is done! Ethan's surgeon just came out at 1pm and told us that everything went well & exactly as planned! They're working on waking him up now & hope to have him off the vent in the next half hour! Of course, these heart kids always do things on their own time so it may take a little longer.

We're still in the PICU waiting room and hope to go see him soon. We'll update again after we go see him!

Surgery Day - Update 1

Ethan went back for surgery at about 7;30. He wasn't the least bit concerned and was looking forward to breathing the magic watermelon flavored air to make him take his "nap".

We are in the PICU waiting room. Ethan should come out at about 2pm. Julie and I are running on 1.5 hours sleep. Thanks for your prayers! -Dan

Pre-op done!

Thanks, everyone, for your prayers for our family this week! Isolation Week is over, pre-op is done, now time to get some rest before the big surgery day tomorrow!

Pre-op went well today. We were at UNC for 3 hours of appointments - physical exam, echo, lab work, X-ray, & EKG. Everything looked great so we'll be back at 6AM tomorrow for check-in, then anesthesia will come get him at 7:30AM, we'll say our goodbyes, then wait to see him again after 1PM.

We don't plan to get any updates during the surgery but will update as often as we have news to share!

Thanks again for your prayers! We greatly appreciate them!

To God be all the Glory!

One Week!

Today is August 25th, 2011. We have one week from today (September 1) before surgery so we've decided to go into hiding to stay away from germs/stay healthy before the big day next week. Daddy (Daniel) is still working full time, up until surgery but Ethan and I plan to lay low and just hang out here at the house so we can stay well. We both have a little bit of a stuffy nose this week, but I've had that my entire pregnancy so not sure if I'm getting sick or just having a little more of the pregnancy congestion now that I'm in my 3rd trimester!

Goals for the next week: stay healthy, get/keep the house cleaned up (getting harder to bend over and pick stuff up as the baby gets bigger), find someone to watch the dog, enjoy some quality family time, put together my "care pack" for Ethan for post-op recovery, take some time to explain to Ethan what will be happening to him next week, and try to not go stir-crazy in the house!

Ethan's hospital sent us a nice picture storybook for us to read to him to help us explain going to the hospital for heart surgery. It shows some cartoon pictures of a child hooked up to all kinds of equipment (IV's, foley bladder catheter, ventilator, chest tubes, pulse ox, oxygen, etc.). Fortunately, he'll still be sedated while most of that stuff is still in/on him). When he gets out of ICU and is transferred to the step-down floor, he'll definitely be rid of the big stuff like vent, IV's, chest tubes, catheter so he should probably only have the pulse ox and maybe EKG stickers.

Please be praying for us to have the right words to use when explaining all this to him and for him to not be scared and that he'll be able to understand it all. Up to now, we've only told him we're trying to stay healthy for next week's pre-op appointment (on Wed., August 31) where they'll take special pictures of his chest bones (X-Ray) and that the next day we'll return and that he'll take a big nap (anesthesia) while his doctors work on fixing his heart so he doesn't get out of breath so quickly. He seems to like the idea of having more breaths so we're trying to keep it positive for him. He has no real sense of time at this age so we don't want to reveal everything at once and overwhelm him or have him worry about it for too long.

If anything else comes up between now and next Wedneday at pre-op (like having to postpone surgery due to illness, etc), we'll keep you posted. Otherwise, be on the lookout next Thursday for lots of updates about the surgery and recovery! We don't get updates during the actual surgery so don't be alarmed if it takes us a while to update post-op!

Ethan's 4th Birthday!

Update: this post is a little late, my computer crashed last week while I was creating this and I forgot to go back and publish it.

Well, this year for Ethan's birthday, we kept it low key but spread out the fun - starting and ending his birthday week with parties! This year's theme was "Cars 2" - his current obsession!

We started with a cookout/party with our church small group on Sunday night, August 7th. We kept the festivities light - just cake, ice cream, a pinata and no gifts. The kids all had fun pulling their string on the pinata to see which string broke open the pinata.

closeup of "Finn McMissile & Mater cake"

blowing out the "4" candle

the kids all have their pinata string ready to pull

Then, the following Sunday, August 14th, party #2 was a family party. We had hot dogs, lots of great side dishes like 3-bean salad, potato salad, baked beans, chips, homemade slaw, watermelon, canteloupe & blueberries. That was topped off with a homemade "Finn McMissile" cake, ice cream & lots of presents!

"Finn McMissile" cake made by Mom

Ethan received lots of cool presents for his birthday - most of which were toys from the "Cars 2" movie! He is very thankful for all his cool new toys and has spent countless hours playing with all his new stuff this week!

busy opening gifts!

Some of Ethan's favorite things while he was 3 years old:

Food: hot dogs (no buns), cheeseburgers, steak, Red, Hot & Blue pulled pork, "America" cheese, colby-jack cheese sticks, Cars 2 graham crackers, chocolate, ice cream, chocolate milk, grilled/baked chicken (aka "buck buck"), popcorn, did I mention chocolate? (a boy after my own heart!), broccoli, applesauce, and pretty much everything else unless it's breaded/fried (like chicken nuggets)

Toys/Activities: Cars/Cars 2 - especially Finn McMissile, Lightning McQueen Rusteeze, Mater & Mack, he also likes to do 24 piece puzzles, play Memory, Cars Bingo, Candy Land, card games like Go Fish, Slap, Crazy Eights, he also enjoys riding his Red Rider tricycle and playing in the sand box, 24 piece puzzles

TV/Movies: he started to lose interest in Sesame Street & Mickey Mouse Clubhouse last fall after he was introduced to Disney/Pixar Cars DVD, we also got cable this spring so he got hooked on all the Nick Jr. shows like Miss Spider's Sunny Patch, Ni Hao, Kai Lan, Yo Gabba Gabba (cringe - I think this show is creepy so he doesn't get to watch it much), Fresh Beat Band, Wonder Pets, Dora, Diego, Blue's Clues, etc.

Ethanisms: "excuse me" (very polite young man, used for every time he wants a chance to talk) "little biwwit" (for "little bit") "wook" (for "look") "that's my favorite!" (for everything he likes), I'm sure there are more but those are the ones that easily come to mind right now!

Big Update

Hey Everyone! So as the saying goes, no news is good news! I can't believe it's been six months since our last post. That is about to change because we have a lot coming up! We've had a lot happen in the last six months so, if you're up for it, hang in while I try to catch you up to speed.

I'll start back in March, shortly after where the last post left off. Early in March, we found out that we're having another baby - due November 2nd. We told Ethan a couple weeks later and he was pretty excited and immediately starting sharing the news with everyone that he's going to have a little brother. :) At 8 weeks pregnant, we had to stop him from telling everyone yet

because it was still way too early to know for sure about the gender of the baby. Also in March, we finally got around to getting Ethan's 3 year portraits done at Wal-Mart. And the biggest news of the month, Ethan got to be a ring bearer in his Aunt Jenny's wedding!

Ethan and his cousin Annie (as the flower girl) at the rehearsal.

Ethan's 3.5 year portraits in his ring bearer suit

Another shot from the portraits

Then in April, Ethan went for a cardiology checkup and things still looked good with his heart on the echo (ultrasound of his heart). As a result, his cardiologist felt confident to go ahead with a heart cath to prepare for the final heart surgery later this year, at a date of our choosing.

May was a pretty low key month, Julie celebrated her 31st birthday by Dan whisking her away to South Carolina for a weekend away to go to the Kenny Chesney concert & visit from friends while Ethan spent the weekend with Dan's parents.

June was a super busy month for us all. On June 2nd, Ethan had his heart cath at UNC Hospital's pediatric cath lab. Again, things looked very good with Ethan's heart. In fact, Dr. R, his cardiologist, even went so far as to say that Ethan has one of the best looking anatomies for someone with HLHS! This was very encouraging news for us to hear and, upon review of his cath results with the peds cardio-thoracic surgeon, we should be on our way to booking the final heart surgery, the Fontan!

Also in June, we had a level 2 ultrasound of baby #2, to evaluate the anatomy, specifically the heart, and also find out the gender of this baby. We are happy to report that this baby is completely heart healthy and Ethan was correct in guessing that this one is, indeed, a brother to Ethan!

We also had a family beach trip with Julie's family (mom, dad, sister, brother-in-law, & cousin Annie) in June. This was a much needed time of relaxation and fun for us all to break up our busy summer! We stayed so busy that we forgot to get many pictures of the trip. Ethan and Annie enjoyed lots of play time in the sand and waves, as well as some time in the pool. Ethan loved the water last summer but has gotten a little more timid of pools for some reason this year. We probably should have put him in swim lessons again but time got away from us! We also took Ethan to see Cars 2 on the day it was released in the theaters (June 24th). If you know Ethan at all, you know that he's a bit obsessed with all things "Cars/Cars 2" related so this was a big treat for him!

June was also the month we heard back from UNC and booked Ethan's Fontan heart surgery! He is scheduled for surgery on Thursday, September 1st, with a pre-op appointment the day before, Wednesday, August 31st.

July has flown by for us. It's always a busy month with Aunt Jessica's birthday on the 1st, Mimi's (Julie's mom) birthday on the 13th, Mimi & Pop-Pop's anniversary on the 23rd, new bro-in-law Brandon's birthday on the 26th, & me and Dan's anniversary on the 27th (9 years for us!).

Well if you've made it this far, then you're pretty much caught up with our lives. August is here and we're busy trying to make the most memories and have as much fun as we can before surgery on September 1st!

August is Ethan's birthday month, and also anniversary of his first heart surgery! We're stretching out the birthday celebration all week long. We started with a small party/cookout with our small group at church on Sunday night, August 7th. We had a Finn McMissile & Mater cake to celebrate. Then, every day this week I'm trying to do a little something special for him.

Monday, August 8th, Dan and I went to UNC to meet with his surgeon to get more info about what to expect with this surgery and recovery. So while we were in the meeting, Ethan's Mimi took him and cousin Annie to the sprayground/pool for a couple hours. They had a blast playing together!

Tuesday, August 9th, we went and had lunch with Dan then went to Rita's Italian Ice for dessert.

Wednesday, August 10th, Ethan and I met up with some friends to watch Cars 2 (for the 3rd time this summer) and then we ate ice cream at Baskin Robbins!

Thursday, August 11th (today!) - Ethan's 4th birthday! We're going to meet Mimi at Sears for Ethan's 4 year old portraits, then get lunch at the food court (probably Ethan's favorite - a cheeseburger (no pickle) from McDonald's. Then for dinner, we'll take Ethan out for pizza and doughnuts and let him open one present.

Tomorrow, Friday, August 12th, I've got to go into work for a couple hours so the plan is to let him have a playdate with cousin Annie. This may have to be postponed though because Ethan's starting to get a runny nose :(

Saturday, August 13th, this is the 4 year anniversary of his first heart surgery. Don't have anything planned yet for that day so I've got to think of something. I guess it'll mostly depend on how Ethan's feeling with his cold.

Sunday, August 14th, we plan to have a family cookout/birthday party! I'll stop here and update more after the party. I'll hopefully have some more pictures to include too!

Happy CHD Awareness Day!

Well, you know what they say, "no news is good news!" That has certainly been true with us! We've had a busy last six months and no time to slow down and post. Ethan is now 3 1/2 years old! So much has happened since our last update. Where do I begin without making this post last for days!?!

Since last August, here's what we've been up to. We went to the beach for Labor Day weekend with several friends & all their kids, we visited the NC Zoo in Asheboro, had a fun surprise 60th birthday party for Ethan's Pop-Pop (Julie's dad), went to Nashville, TN the week before Christmas to see Julie's relatives on both of her parents' sides of the family, celebrated Christmas at home with both Julie & Dan's immediate families, celebrated the engagement of Julie's youngest sister (Aunt Jenny), enjoyed several snow days this winter, & are currently gearing up for Aunt Jenny's wedding at the end of March!

Ethan has managed to stay very healthy this winter with just the occassional runny nose/mild cold from time to time. Thankfully we haven't so far dealt with anything quite as severe as the bout with RSV that he got last January that sent us to the hospital for 4 days. Saturday night he did come down with a fever that continued all day yesterday & into today as well. Poor little guy, he spent all day Sunday napping on the couch & that looks to be the same for today as well. We are supposed to go to his biannual cardiology checkup tomorrow but it looks like that's going to have to be postponed until he's all well. This checkup was supposed to be the last one before his next heart cath & final heart surgery so we've been anxiously waiting for it.

And speaking of Ethan's heart stuff, today is most commonly known as Valentine's Day but, unfortunately, is not often known as an even more important day, National Congenital Heart Defect (CHD) Awareness Day! This whole month is heart month but last week through today (7th-14th) is CHD Awareness Week. I've posted several heart facts/statistics on my Facebook page but want to post here as well in case you don't use Facebook & are curious about CHDs.

Here are some statistics about CHDs, most of them come from the TCHIN.org site:

• 1 in 100 babies are born with a heart defect (about 40,000 each year)
• 4,000 of those will not make it to their first birthday
• Although some babies are diagnosed at birth, there is no routine screening for CHDs at this time, though some states are working on changing that so all babies are at least screened by pulse ox (checking oxygen saturation)
• Twice as many babies die from CHD's as from all pediatric cancers combined yet there is 5x more funding for pediatric cancer (all the more reason we need help spreading awareness)
• Some CHDs may require a visit to a pediatric cardiologist. Others can be treated with medications or repaired with surgeries and/or procedures. Complex defects (like HLHS) may require several surgeries and are never really "cured".
• The majority of patients born with a CHD are now adults, yet many adults with a CHD are not receiving adequate ongoing care from trained specialists.

I know I'm long overdue for including recent pictures but unfortunately, in all our busy activities, I've forgotten to take any of Ethan. I'll have to work on that! Here is a list of some of his favorite things though!

Movie/TV characters (in order):
Disney/Pixar Cars (playing in the background as I type this), Toy Story (1, 2, & 3), Mickey Mouse Clubhouse, Turbo Dogs (on Qubo), VeggieTales, Transformers

Toys:
Anything to do with Cars (Mater, Lightning McQueen, The King), 24 piece puzzles, he got walkie talkies for Christmas so they've been fun to use around the house, his new VTech V.Reader (e-book for kids), kids card games like Go Fish, Crazy Eights, Rummy, BINGO (of course all played with his own special decks of cards with Cars characters on them), also UNO, Candyland, & Memory (he's got a much better memory than me & always wins!). I even have a few game apps on my phone that he likes to play like Angry Birds, BullRush ("cow game"), Wheel of Fortune, tic-tac-toe.

Foods (he's not all that picky & pretty open to trying new stuff!):
Cheese (especially mozzarella string cheese & plain American), red seedless grapes, chicken (as long as it's not breaded/fried), cheeseburgers (no pickles please, just ketchup & mustard), broccoli, plain lettuce, zucchini, carrots, peas, anything chocolate (especially M&Ms), cold turkey hot dogs, ham, chocolate Teddy Grahams, fruit snacks, butter, popcorn (especially at Target as we're shopping), PB&Js, grilled cheese sandwiches, yogurt, Cheez-its & Goldfish, asparagus stalks (just not the buds on top), eggs

Other things:
Ethan also loves his mommy & daddy & all his relatives. He loves to learn. He loves Jesus. He enjoys spending time with his friends from church, MOPS (Mothers of PreschoolerS group), CBS (Community Bible Study). He is very tender-hearted like his mommy & cares about the needs of others & asks to pray for them. He is Mr. Extreme Extravert - talking to everyone & every thing (animate & inanimate) with which he comes in contact. He enjoys reading, learning to write his ABCs, learning about Jesus & singing his Bible study songs. His favorite tune right now is "Praise the Name of Jesus". With MOPS & CBS twice a week, there's been no time/need for preschool at this time. CBS has taught him so much - Bible stories, Bible songs & scripture memory - and I've also been able to enjoy a year-long study of the book of Acts in the adult CBS class while he's there!

Cardiology appointment update: while I was typing this, his cardiologist's nurse called & had to cancel because Dr. R has an emergency procedure to do on another patient. That worked out good since I told the nurse that Ethan was sick and I was afraid I was going to have to cancel. Our new appointment will be on Tuesday, March 1st.