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!