Heart Cath yesterday

The famous Dr. Tom Jones...he's very renowned for cath intervention and so kind too. This was Maddie's third cath procedure and Jones has performed them all. The photo was taken right before we left last night. She was quite puffy around the eyes from all the IV fluids, today she's looking back to normal...many wet diapers later :)

We arrived at the hospital bright and early to check-in, she was scheduled to go into the cath lab by 8:00 and 2 hours later, she finally went back! There were camera difficulties in the lab and the technician that was supposed to be there to fix it was stuck in traffic, so this held up the show. Maddie did great waiting in the pre-op area by taking a little snooze, played with my phone and enjoyed lots of cuddling before her procedure (we did too).
I was able to go back with her into the cath lab (all scrubbed up but didn't get a picture) and help ease her into getting put under...nothing about putting a 1 year old out is easy! She fought the gas mask and when I left, she was in a light sleep with her legs still kicking around! It was neat to see the cath lab and watch the nurses and anesthesiologists do their thing, but a little hard for mommy to hold down her girl against her will. I always wonder what she's thinking as I'm holding her down and saying to her, "it's ok...I know...shhh-shhh...be a good girl...mommy loves you...honey, I'm sorry..." But I do hope there's some comfort when the last face she sees is mine as she drifts off into la-la land.

The cath took 3 hours and Dr. Jones ended up doing a cardiac collaterization with embolization of collateral veins with coils. Whoo, that's a mouthful! In other words, he put in 4 metal coils to clot off some unwanted veins she's created. She had developed some large collaterals off of her innominate vein that were robbing blood and causing her sats to go down. These collaterals that she formed are useless. With her heart's anatomy, her body formed them to get more oxygenated blood to her extremities/lower half of her body since it's oxygen deprived. Her body is trying to "fix" her heart problems yet only causes trouble by doing this. Her sats in the cath lab were 74-76 and when she was finished with the procedure, veins all coiled up in tiny metal springs, her sats were up to 81-84! So coiling off these unwanted vessels helped out!

Here's a picture of one of the collaterals off to the right of the innominate vein...it swirls around, looping and stealing that precious oxygenated blood just received from the lungs. Here's a picture of the coils on x-ray, they'll stay in her forever. The long, skinny 1-inch looking lines are the wires holding her sternum together from her two surgeries.

Dr. Jones was also able to get a good look around her heart (he made 3 entry points/puncture sites: neck, arm/shoulder area, and her groin) and he gave us a wonderful report! Her pulmonary arteries have grown, heart function and pressures looked great, and her Glenn site is fine too! Her heart likes the Glenn flow :) There was a little narrowing at the site of the SVC and the PA but with her future Fontan surgery, the IVC conduit will be sewn into that spot and should take care of the problem. He said that she really looks wonderful and this procedure should buy us some time. In his "seasoned opinion" (his words not mine) Dr. Jones feels that completing the Fontan is better the bigger she is. He feels like the Glenn should be sufficient enough until she's 40+ pounds! We've been thinking her last surgery will be when she hits 30 lbs, so it looks like we may have a longer wait! It's actually a bit of a relief. Miss Maddie is 9.2 kilos, which is just 20.24 lbs...she's gonna have to double in size before that surgery so she may be 4 or 5 when she has her Fontan. It's all on a "need" basis...when she gets bluer, sats stay down, more winded with activity, and overall tired, these will be the indicators that it's time for her Fontan surgery. Dr. Jones' report of Maddie was so nice for my mommy heart to hear. I always wonder what's going on in that little heart of hers and after yesterday's cath, a lot of my anxieties are put to ease. If she looks and acts great, she's probably doing great. Thank you Lord.

This picture shows where the IVC conduit (artificial tube) will be sewn in at Fontan time. The SVC (Superior Vena Cava) is what was sewn to her pulmonary artery from the Glenn, it's her own tissue, not a tube. The branches off of the RPA and LPA go out to the lungs.

Luckily, I was able to go back with her in the first phase recovery room too and she was the feistiest kiddo in there! Her LOUD cry was hoarse (breathing tube causes that) and there was no making that girl happy. I do love this side of her though and feel that it's one factor of why she's done so well with her half-heart. She kept her swollen, puffy eyes on the nurse at all times and screamed when she came near. Poor baby... and yes, we did come home last night! Dr. Jones felt like she looked great after her 4 hours in recovery and didn't see a need for her to stay overnight in the hospital. Yay!!!

Our baby heart friend, Mia, had clinic yesterday so she and Mimi came and sat with us in our recovery room after their appointments. Man, I just love them!!! Mia looks so great and is the smiliest baby I've ever been around. Mimi is hilarious and like her daughter, can brighten anyones day. Time really flew by for us once they arrived.

Since we were starving and Maddie was geared up for her fav mac & cheese, we went out to dinner before our 3 hour drive back home. Mimi and Mia joined us as well and Susie and Teagan too(they were in town for an appt. today). It was a fabulous way to end a long but very happy day :)

Thanks for all of your prayers and kind words. Maddie is sure a blessed little girl!

Here's a short video that explains what a heart catheterization is: Click here to watch.