Sunday, July 25, 2021

Let the Adventures Begin!

We've been quiet on the blog for the last few months, but that's a good thing! It means for us life has been happening with no bad surprises and Jude is healing from his surgery.  It's been 3 months and 2 days since his Glenn surgery and he has come so far! Some positive milestones over the last 3 months include:

  • Visiting the capital of Texas - Austin
  • Jude eating at his first outdoor restaurant (we still haven't done indoors with him yet)
  • Visiting the home of Blue Bell Ice Cream in Brenham, TX
  • Jude had his first zoo visit at the Houston Zoo
  • Josiah finished Kindergarten and Alex finished 5th Grade - yay for the summer!
  • Jesse and I got to have our first date night since Jude was born
  • Blackberry picking at a local farm
  • Taking a trip to the beach at Galveston Island - family portraits, sandcastle lessons, exploring the tall ship Elissa
  • Celebrated our 15th wedding anniversary
  • Our first family visit here in Texas that didn't revolve around a doctor appointment or surgery, so we just got to hang out and enjoy each other's company
  • Alex took Volleyball lessons
  • Toured the Texas Sculpture Park in Frisco, TX
  • Josiah lost his 2nd tooth
  • Jude is walking!
  • Jude made it to the 20th percentile in his weight and is gaining and growing like he should since his heart isn't having to work as hard
  • Meeting friends for a walk at the park (Jude's first playdate!)
Yesterday we embarked on what we be our longest traveling adventure so far...a road trip to Cape Cod!

We'll be posting all about here when we return, but if you want to follow along you can join us at Instagram at #ourheartadventures or on Facebook @ourheartadventures.

Tuesday, April 27, 2021

Post-Op Day 5: All Good Reports So Far

 


Today was a good day! Jude had an echo and X-ray this morning that all came back as expected. No issues or fluid build up, which is great! The doctors wanted to monitor him for one more day, then as long as no new issues and X-ray tomorrow looks good, hopefully he will be discharged tomorrow. After our experience last time, we’ve told ourselves not to get excited until we have discharge papers in hand. 

Also, being in the hospital and around people has helped a lot with stranger anxiety. He still doesn’t love them, but at least he doesn’t scream every time someone walks in the room. 

He’s moving around really well, climbing on everything and crawling everywhere. The most important thing for us to remember is we can’t pick him up under the arms for the next six weeks. Think scoop like a newborn. Otherwise he is self-restricting, so whatever he is comfortable with doing. Here’s a little video from his walk in the hall today. 





Monday, April 26, 2021

Post-Op Day 4: No more lines!

 


We had another good day today - yay! After bloodwork and x-ray it was decided Jude's chest tube could be removed.  They gave him so extra pain medicine to help (the removal is painful, but quick).  After that he was able to take off the continuous telemetry, so all those wires went away as well.  His IV infiltrated when they flushed it, so it was removed.  His hand was a little puffy for a while, but is all better now.  He had physical therapy, and they gave him walker to use up and down the hall.  He was able to move around much better without the chest tube and he crawled around, getting into everything.  He had another x-ray and an EKG this afternoon.

Jesse is spending the night with him tonight, and hopefully they will both rest well.  Jude is normally a good sleeper at night and usually still takes two naps during the day.  At the hospital daytime naps get blown out of the water and he wakes up at night with all the meds, IVs, and vital checks.  Hence the dark circles under his eyes.  Also, he's nosy, so since we are in the room with him, he wants to constantly check and see where we are. 😏

The plan for tomorrow is Bloodwork (again, ugh - he has to get poked every morning 😒thankfully, they've been able to draw pretty easily, but he hates being held down), X-ray, Echo.  Hopefully only a few more days in the hospital as long as everything continues to look good. Then we will stay in Houston until our surgical follow-up which should be a week after discharge.

We brought a Roku stick with us so we can get Disney+ and he loves to watch Mickey Mouse Clubhouse :) Oh, also his cardiologist stopped by just to say hello and see how he was doing.  The floor has a rotating cardiologist, so this was just a courtesy visit for Jude.  She is so wonderful, and we are so thankful that our Dallas cardiologist recommended us to her. 

Thank you everyone for your kind words.  I don't get a chance to reply to everyone, but please know we appreciate everyone's words and kindness!

Sunday, April 25, 2021

Post-Op Day 3: Moved to Step-Down

 We had a good day here at the hospital. Jude got to move to the step-down floor! He still has his chest tube, so getting it removed is his next big hurdle. He'll continue to have vitals taken every 4 hours, he has IV Lasix every 12 hours to help with fluid retention, and pain meds every 6 hours (the chest tube is painful, but hopefully once that gets pulled his pain will ease). Every morning at 4 am (yay! not) his has a chest X-ray, then blood draw after that.  So with all of those things going on, rest is not something he has gotten a whole lot of.  

He is eating solids foods again! He loves bananas so he has had lots of those and then some veggies tonight.  He's eating like a champ. Also, he had his bandages removed this morning, but his wound is healing nicely.


He was also able to wear clothes today! πŸ’™

Physical Therapy stopped by today with a mat for him to sit and move around on.  The sooner he is able to get around the more it helps with clearing his congestion.


After we moved to his new room, we put the mat next to the couch so he would have something to pull up on and he enjoyed that.  He was moving around pretty well, but it tires him out easily right now. His energy will get better with time and definitely when the chest tube is gone and not in the way any more.


Yay for progress and good days! We were able to do in 3 days what it took him 3 weeks to get to in his first stay, so we are all excited about that. He loves talking to his brothers on FaceTime, and Josiah was so excited to tell us he rode his bike without training wheels for the first time! πŸ˜€We all miss being with Alex and Josiah and look forward to seeing them again, hopefully soon.  

Saturday, April 24, 2021

Post-Op Day 2: ICU Continues

 Quick update for the evening: Jude continues to do well! He had the following removed today:

  • Central line 
  • Pacer wires
  • Monitor for brain oxygen levels
  • Oxygen
All great things and he's ready to move from the ICU to the regular floor, but due to timing and availability they chose to keep him on the ICU floor for one more night. He was having some pain this morning, but he was able to get some meds that helped him.  He was eating well today.  He still has his chest tube in and is getting diuretics to help with fluid retention.  That will be one of the last things to be removed, but it is still producing more fluid than they would like before it can come out.




This afternoon he was sitting up on his own, talking to us, and still watching the Zoo channel. We FaceTimed his brothers several times today and he was telling them a few things too. 😜


Jesse is spending the night with him tonight, so hopefully they will both get some sleep and be ready to continue good things tomorrow!

Post-op Day 1

 Good morning! Just wanted to do a quick update on Jude. He is doing really well meeting all the goals the so far.  Since surgery he has had the following removed:

  • Breathing tube
  • Central line in neck
  • Catheter
  • Temperature probes
  • Arterial Line
  • Weaned off his heart medicine
Every time something else gets taken off we have a small celebration in our room :) The hope is that he will be able to move to step down in the next day or two.  He most likely will go to step down with his chest tube in since he is still having some drainage, but that is normal.  As far as pain, they have done a great job of keeping his meds going.  We did have one time last night where he started to be in pain, but they gave him some extra, and it did the trick.  He loves the Zoo channel they have here and it seems to calm him down.  




I got to hold him last night and we both enjoyed snuggling.




I spent the night with him last night, but Jesse just arrived and is getting his snuggles in now. (Apparently they both like the Zoo channel)




Yesterday went much better than I anticipated.  Our nurse yesterday was the same one we had during the worst day of Jude's stay last time (not her fault, he was just really sick during that time).  So we were so thankful that instead of adding lots of things, she got to take lots of things off. We even all had a good laugh about it. The OT and PT services came by and had him sit up which was a lot of effort at first, but he is doing better with it by himself already.  

Thank you so much to everyone for their kind words, prayers, food gift cards and love.  We truly appreciate you all!

Wednesday, April 21, 2021

Pre-Op Day

We just returned to the apartment across the street from the hospital after a morning of tests and meetings.  So far all results have turned out well!  

This is Jude before we went to the room.  He knows when we've entered the hospital and was already letting me know he didn't want to be there.



Here's a rundown of what Jude had to do in pre-op:

  • Vitals taken (weight, height, blood pressure, oxygen saturations, temp, respiratory rate)
  • Covid Test (he loved that 😏)
  • MRSA Swab
  • Urine sample via a bag he had to wear in his diaper
  • X-rays
  • Bloodwork (we had a great phlebotomist who got it on the first try!)
  • Met with anesthesia to clear for tomorrow
  • Met with social worker
  • Met with child life specialist
  • Met with his surgeon for tomorrow (Jude was on a talking streak at this point and had several things he was telling him πŸ˜†)
  • His cardiologist came by just to say hi (This is the one who broke her arm badly last year and we haven't seen her in a while, so it was so great to see her again. She loves her patients so much and is so wonderful.)
  • Met with research to sign agreements for Jude to participate in some possible research 
  • Signed our consents for surgery tomorrow

In total it took about 5 hours for everything with lots of waiting in between.  Starting out, Jude was really upset about all the poking, people, etc. but he had chilled a lot by the end, so hopefully that will help him for tomorrow morning when we go in.




Before and after photos

All in all, it went much smoother than I was anticipating.  It looks like we are set up and ready to go for tomorrow. Poor little guy, he was tuckered out after everything and finally took a nap right before we were released.