21.Sep.2019 by Kari

Gideon’s Cardiac Update 9/20/2019

We had our 6 month post-op follow up with the Cardiologist today. The appointment went great. Gideon was in a great mood, happy and active which made for fun with the nurses, tech & doctor, but difficult with the equipment. We weren’t able to get a good blood pressure on either of his legs which is important since he has a rebuilt aorta, that’s the artery that pumps blood from his heart to his lower extremities and the only way externally to tell it’s working great is to measure blood pressures on his legs and compare them to his arms. He was too active for them to get pressures on his legs today so we couldn’t use that tool. He has great femoral & pedal pulses, which I check regularly as well but it’s reassuring to have the cardiologist check and agree.

He did perfectly (for the most part) getting his EKG. I gave him 1 veggie stick and in the time it took him to grab it and eat it, they got all they needed and printed his report!

He also did excellent for his echocardiogram. We have the tv on at home when the kids watch a show but I didn’t realize until today, Gideon has never really seen the tv. We went into the echo room and she had Paw Patrol playing and he was mesmerized. His eyes were glued to the tv. It was perfect! When he got fussy about her pushing on him or bugging him, I gave him a snack to eat and he chewed and watched the tv and just laid there the entire time. We couldn’t have asked for a more behaved patient!

I have no idea how to read a cardiac echo, but even my untrained eye can tell the difference in his heart from pre-surgery (when his heart was 1 big open bucket) to post-surgery now that he has 4 actual separate chambers in his heart. It’s pretty cool but still gives me a bit of anxiety watching the screen when they do these.

This kid is FLEXIBLE. We are working on strengthening his muscles, tendons & ligaments in therapy because this isn’t really good for him, but can be funny to see from time to time. Especially everyday at the table when we eat meals, He always eeks a foot up onto the table which is absolutely naughty and not allowed but it’s so darn cute! Someday soon I’ll enforce that not b eing allowed. The therapists always ask me “do you want him doing that when he is 6? If not, then stop him now.” Ok ok……. but gosh dang, those little toes peeking over the top of the kitchen table are a-freaking-dorable. Hahaha.

The cardiologist returned to our room after reviewing the images and appeared to be quite pensive. He had a smile, but not a full on, happy, joyful smile. I knew something was up. He said that Gideons heart looks great. I said yeah? He said yeah. Ok, that’s good, I was fearful that it was either his valves or his aorta that were not great then. He said the valves they created (Tricuspid & Mitral) also look fantastic. They are working perfectly, they both previously had ‘trivial regurgitation’ where the blood squirted back into the heart when it was being pumped out but it was very trivial, never a concern. He said there doesn’t appear to be any regurg on the Tricuspid valve anymore at all and if he had a term to use that was less than trivial, he would use that for the Mitral valve.

The #1 concern for these kiddos hearts after this surgery that Gideon had is his Mitral valve and the cardiologist said we would start seeing signs of concern by 18 months post op. Gideon is 14 months post op now and his heart has continued to heal, strengthen and get even better. The tiny VSD that he had left after his last echo has now completely closed and is totally healed.

How about the aorta? That’s the only thing left that could go wrong and we weren’t able to get comparing blood pressures on all 4 limbs to check…. Doctor said his aorta is beautiful. .There doesn’t appear to be any thickening anywhere, the blood is flowing beautifully all the way up and down to his feet, his pulses are great and the output measured even on both sides of his femorals which is fantastic.

“Sooooo………. where’s the but? “I asked. He smiled and said “There is no but!! Gideon looks FANTASTIC! He is growing and thriving and healing better than we could have ever hoped or imagined, he is the perfect patient!”

Really!?!?!?! No but?!?!?!?!!?!!?

No but!!!!

PRAISE JESUS!!!!!!!!!!!!!!!!!!!!! There is no but!!!!!!!!!!!! Gideons heart is functioning within 1% the same as his brothers hearts. Unbelievable. I don’t understand. Cadaver cardiac tissue, bovine tissue and goretex and it’s the same as his brothers. I can’t even understand how that is possible but I can certainly thank God and the team who gave him a new heart. I also need to thank the donor family that provided the cardiac tissue as I have a barcode I can send a thank you note too and it will get to whomever the donors family is.

We don’t go back to cardiology for a year now. We will certainly miss our cardiologist as he is my favorite doctor of Gideons, but we wiill try to swing by when he’s in office at some point to say hi maybe.

As for the rest of Gideon, he’s doing great. We learned new stuff in therapy last week and worked hard throughout the week on new goals and he did amazing after just 1 week of focused work on his head control and neck strength. It was so awesome to see his improvements at therapy this week.

He is very weak on his right side. He also doesn’t have the reflex to put your hands down yet when you fall down so you don’t fall on your face. We are trying to teach him that reflex and also to use his hands as a brace for stability and balance. His arms are also very weak. If I could get him to do pushups, I would. Lol. We are working hard here on gaining strength in his arms and neck, balance and core strength as well.

He also needs to be taught proper positioning for standing and squatting so he can get up and down. This stuff comes normally to typical kids, but for Gideon, it has to be taught and practiced repeatedly. It’s HARD work for him, like a high intensity workout to get into proper positioning then repeat it over and over because those muscle groups haven’t engaged properly or just aren’t strong enough or don’t have any endurance.

He worked so hard this week, it’s the closest he’s ever come to crawling and will be there soon. I believe once he gets his new orthodics (hopefully next week), I can order him a new pair of shoes and he will take off on crawling once he figures out the proper position and isn’t stuck to the floor with his huge, rubber shoes. His orthodics are a hard plastic and just slip out from under him on the floor so he is required to wear shoes over them (I thought about painting the soles of the orthodics with no slip grip paint but then I’d never be able to get his shoes over them so that’s not an option. But he has to wear shoes at least 1-2 sizes bigger than his feet to fit over the ortnodics so I’m going to buy some soft sole, crib type shoes that do have some grip on the bottom so he can get around easier.

Thanks for checking up on us! Prayers for Gideon are for a HEALTHY cold & flu season. The doctors have advised me it would be unheard of for a kiddo with his condition to avoid a hospital stay, specifically this winter (something about their pulmonary/respiratory growth/development during year 2 of their life) so I’d love to be the ones who show it can be done! We can remain healthy and well and not have to have an inpatient hospital stay just because it’s cold/flu season. Continued improvement for his Thyroid, healing from his broken belly button, improved hearing in both ears, strength in his muscles, ligaments & tendons, CRAWLING and heck, he’s about ready to walk too so why not throw that in the prayer bucket!?!

Again, thank you for following along his journey.

One extra special prayer request, Gideons friend, a 4 month old girl who we go to church with is going to have the exact same surgery Gideon had for his 2nd one on September 26th, please pray for her surgery, recovery and their family during that time.

Thank you!!!

Gideon’s Cardiac Update 9/20/2019

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