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Tuesday, October 2, 2012

Day 1, Part 2

Wow! I mean Woooooowww!! Jonah is officially post-Fontan. Between the hours of 7:31am and 9:30am yesterday we did not hear anything from the OR. About 11:00 they had him off bypass, closed him up and felt comfortable getting him to the Peds Surgical Heart Unit. By 12:30 Jonah was all settled in. To say that the surgery went fast is an understatement, but since his coming to the ICU, it's been "all hands on deck!!!" We apologize to everyone that we have not been getting updates out more often!!

First, surgery went fantastic!!! Here's the down and dirty...
* the Fontan surgery connects his inferior vena cava directly to the pulmonary arteries via a Gortex conduit. The right heart is bypassed completely to preserve the heart muscle and maintain good rhythms.
* they were able to use a 20mm conduit. This is an appropriate adult size that should last him long into the future without having to replace. See picture below...
* minimal bleeding while cutting the chest. No complications going on or off bypass.
* no fenestration done. Rob mentioned this...a fenestration is a small hole made to connect the new conduit and the right side of the heart allowing for a small mixing of blood that acts as a pressure release in the lungs. If the flow is too high in the lungs and the conduit resulting in resistance, they would do this.

As far as post-op recovery goes...there was no amount of forewarning that could have prepared us for this. It was looking like we needed a tranquilizer gun at one point. Jonah woke up with a froggy voice asking that I sing him the ABC's. Not bad, right?? He managed to stay calm & quiet for a quick visit from each of our friends and family that were here rooting for him all day. After dinner at the RMH and an ABC marathon, Jonah became like a little torpedo in his bed...and spiraling with him were his chest tubes, Foley catheter, transducers, IV and oxygen tubing EKG leads, etc... At one point he had himself in a standing position trying to get into my arms.

We were told that Jonah's body metabolizes sedation very quickly, which, means finding a safe dose to administer was a slippery slope. The team increased his drugs, tried new drugs, but this boy was not going down without a fight. I left at 4am, rob came over to break me until about 7:45 this morning. The entire night Jonah would struggle to find comfort only long enough to untangle everything before he was on all 4's again. It is truly a miracle that he did not pullout anything critical to his recovery.

This morning was only slightly better in that he didn't seem as restless for as long whenever he got up. Again we tried the medication route. By now Jonah sounded like a scratchy broken record... "Water! Milk! Cheese! Oodles (noodles)! Peanut butter! Until finally they allowed him to suck some water (melting ice cubes really) from a sponge. could hear the bells ringing- Halleluiah!!!! He loved this!!! And it was seriously the most adorable thing ever to watch him like a little bird with his mouth open waiting for more!!! After his tummy tolerated this they gave a very effective oral pain medication. He's been lights- -out ever since!!

A gigantic thanks us owed to our doctor and nurse today who were so amazing at helping us help Jonah!! We love you girls!!!!!


  1. Glad to hear they've worked out a plan to keep Jonah comfortable. Thank you for posting that last picture- it totally puts it in perspective- 20mm is a lot bigger than I thought it was. Continued thoughts and prayers for a smooth and swift recovery!

  2. So glad Jonah had a great Fontan and congratulations on officially being post Fontan! Continuing to send a lot of love over your way! Hope the days keep getting better and better!

  3. Kathy and Raina shared Jonah's blog! We have been praying! I'm going to be at Hope around 5 today delivering Mended Little Heart care bags to Katie to distribute to the PSHU. PLEASE let me know if you need anything at all! <3 My email addy is