Discharge

October 10th. 9 days after Jonah's 3rd open heart surgery. We are going home. We have been on quite the journey, even since getting to the 2nd floor.

Jonah's INR was right in the range they were looking for yesterday so we have the appropriate Coumadin dose planned for now. The team has found a local clinic that will continue to check his INR as instructed. The nice thing is that the clinic only does a finger prick similar to a blood glucose check to get the sample they need. We report the results they advise us on the dose.

Jonah received a blood transfusion yesterday with the hopes that it would help his oxygen levels. It was only slightly lower than where Jonah was pre op, but any attempt to optimize Jonah's oxygen carrying cells the better.
The plan as it stands has Jonah going home on a little bit of oxygen overnight. His doctors and nurses are confident this is only short term while Jonah's body heals and his lungs relax and adjust to the new blood flow. They are also very conscious of promoting a good quality life and given Jonah's age and activity level, wearing oxygen all day long isn't needed especially because it doesn't necessarily have a significant effect. As we've been on the step down unit, Jonah's team tried another medication indicated for the use of pulmonary hypertension. The idea was to give it to him and watch for any increase in his O2. If he did respond, the school of thought was that the pressure in his lungs was still too high, resulting in lower sats. Jonah's oxygen levels did not change. It was no better, no worse. A good thing actually! With that, having Jonah wear supplemental oxygen for a while as he recovers will help to shed extra fluid in his lungs. Over time, his sats may improve. They may not. If not, they likely contribute the lower oxygen levels to collateral vessels stealing blood flow from the lungs. Just to clarify, Jonah has not decompensated in any way; his sats are 86-92%, just not a consistent 94-97% like some other Fontan's. Jonah's team is comfortable with that going forward but want to help him heal without any rebound in pleural effusions.

We still need to go through rounds and the specific details of discharge. We could still have a long day ahead of us but the sooner we get Jonah home the better. He is frustrated. Angry. Wants nothing to do with being comforted by us. He's slowed down on the eating front. He's bored. He's tired of all the cords, cables, and tubes connected to him. And obviously, he's thirsty. Home will bring more distractions and hopefully a little more fun.

Keep you posted on our exit plan!

Day 7: The Good and The Bad

Good news: we are on the step down floor and are one step closer to going home.

Bad news: on the step down floor we are much more on our own and don't have the same care/help as we did on the PSHU. Mom and Dad are running on fumes and had the worst night's sleep yet of the week.

Good news: yesterday Jonah ate good bfast, lunch and dinner.

Bad news: today he has yet to eat as of 5pm.

Good news: echo and EKG looked good this morning.

Bad news: O2 is low (90) and is still on oxygen. Don't have a good explanation yet. Sats aren't much better with O2 and an experiment with Viagra didn't do much either. It is unknown if we will have to go home on oxygen.

Good news: he is generally feeling well and is interested in playing. Even took him to a play room where he took his first steps walking again.

Bad news: ALL he wants MILK. The fluid restriction is tougher than we thought. Only 27oz a day doesn't last long when he is so thirsty from all the diuretics. Last night was difficult for us to watch him incessantly cry for milk and there was nothing we could do.

Good news: electrolytes are improving and Jonah doesn't have to take as many meds.

Bad news: first trial of Coumadin overshot the INR target range of 1.8 - 2.2. INR was 4 this morning. Coumadin on hold until next INR test tomorrow. It could take a couple days to find the right dosage before we can go home.

Good news: Auntie 'Aga' Allison came by to save the day to keep Jonah, Mom and Dad company. Halloween arts and crafts were a big hit!

Stepping down and Stepping Out

What a difference a day makes!! Part of Jonah's plan of care today was to take a wagon ride. And that wagon escorted him to his new room on the 2nd floor step down unit.

Today, Jonah's chest X-ray looked crystal clear after having his chest tubes pulled yesterday. His electrolytes stabilized somewhat and we were able to discontinue one completely. His diuretics were changed to oral form and the frequency decreased. His Arterial line was pulled from his leg and he's been a pooping machine. His first dose of Coumadin was started last night. Tonight's dose will be a little less and they will check his first INR tomorrow morning. We will spend the next few days here getting this in an acceptable range as his Coumadin will likely get tweaked. He is still on a little bit of oxygen but they expect this at this point and as Jonah really expands his lungs it should no longer be needed either. Jonah very shakily stood up today for the first time in 6 days!!!! He couldn't do it on his own but he is otherwise moving around playing in bed as if his chest was never cut open! He will get there, he is determined to check out his new surroundings:)

Take a look at our beautiful home away from home...

Round 4-Total Knock Out

Things have been happening so fast around here, I forget where I left off and have no idea where to begin. We absolutely cannot believe its almost Sunday!! Sorry for the missed update.

As part of this process, Jonah's medical team aggressively tries to remove excess fluid from his body with the ultimate goal of protecting his heart and lung function and allow time for the Fontan circulation to adjust. Fluid around Jonah's lungs can and potentially always can be a problem. This isn't true in every case but it is something the team takes very seriously. After surgery, Jonah's body begins shifting fluid, the diuresis process starts roughly 48 hours later and it slowly gets ramped up to push the limits on every organ. Jonah did not respond to these medications as quickly/effectively as they'd like so they took it to the next level and the next, etc. Finally, the floodgates opened and he began to dump the extra fluid. While Jonah was so waterlogged one of his nurses explained... "He's not eating because his liver and intestines are floating". As he continued to shed the retained fluids Jonah's electrolytes were depleted. Calcium. Potassium. Magnesium. Sodium. We began quickly to replace these both IV and orally. The intravenous route only bumped them up to get him to the next scheduled diuretic where he would lose them again making it a wash. We tried every trick in the book to get these oral meds to stay in his belly. Jonah put the clamp down anytime yogurt, applesauce and a spoon came near him. The push of a syringe wasn't any better because either way he was gagging & puking it up. This went on for too long yesterday and Jonah didn't meet his liquid oral intake for the second day. There we were...what felt like standing on a beach getting knocked down by wave after wave-just getting pummeled. We'd ask all day, every day-"is this normal?" The answer to that turned out to be Yes and No. Jonah's eyes were dark, hollow, black holes. His shoulders sharp, his spine and ribs prominent. He was dehydrated. Extremely dehydrated. Not dangerously though as his kidney function was still good. Mission accomplished!! He was utterly dried out. This is what they wanted for his heart but admitted it was too much for the rest of his body. Rob and I were totally defeated. Desperate. To look at Jonah like that scared us more than looking at him fresh out of the OR 3 times.

Step in---divine intervention. A veteran nurse we never met before came in to change Jonah's sheets after throwing up. She was quiet. We were crying. Then it seemed we both started talking at once. Before the hour was over we had Jonah started on IV fluids with most of his big electrolytes in it and another cut back in his diuretics.

Fast forward to today...Jonah's eaten 3 meals, kept it down, pooped twice, is narrowing the gap between his input and output, his chest tubes were pulled, and oxygen weaned. Literally a night and day difference.

This surgery definitely has our vote for being the most taxing, frustrating, exhausting, confusing, and intense surgery of all 3 repairs. We felt broken last night but we picked up the pieces today to hopefully take more steps forward than we do back.

Take a look at the before and after...

Fontan Trials and Tribulations

This Fontan surgery has certainly proved to be every bit as difficult as Jonah's medical team has explained to us-over and over and over. With that, Rob and have broken it down in to several parts and we feel like we just stepped in to only round 4 of the boxing ring.

1. The emotional toll & anxiety the preparation for this surgery took. 2. Surgery itself. 3. The first 36 hours immediately post-op. 4. Striking the balance of the fluid restriction and diuresis, eating, and replacing his essential vitamins & minerals.

As we've moved into this next phase, we really feel the exhaustion setting in as we realize how long this healing process is going to take. Last night and today Jonah has become very wise to the trickery that has been played on him when it comes to his oral medications. Overnight alone they added at least 4-5 new medications-all having to do with diuresis and the catch up that must be done as a result. Added to that is Jonah's need for a good old fashioned poop:) He's had a boatload of medication causing things to get blocked up and he's not super interested in eating/drinking. The new circulation also causes congestion in his liver and arteries feeding the intestines, so again, a reason his nutritional drive is in the toilet.

We are attempting to control Jonah's discomfort with Tylenol today-yup, nothing fancy- and wake him up a bit. Crazy thing is, he's doesn't seem to be in a ton of pain at all!

We did achieve some success today with the disgusting 'salt lick' that is his sodium replacement. Also, his potassium almost went dangerously low so we laced that with a little grape juice and he actually took it ok. I think that will try to be our routine for his new (temporary) oral meds...for now, of course. I'm sure he'll spit it back in our faces soon enough;)

We did have A LOT of good that happened today!!!! Here is our Highlight Reel ...
(The minute-to-minute woman in Jonah's corner that's made such an impact on us this admission is in the first pic: Dr. Melissa Nater)

I and Love and You

Hump Day

It's Wednesday. A full 48 hours from Jonah's Fontan surgery and it seems we have gotten over a huge hump in his recovery!!

Jonah had a really good evening and night last night. After allowing him to eat a little bit of applesauce and getting a better combination of pain control/mild sedation Jonah has been sweetly sleeping. Actually, sleeping more than obsessing over eating and drinking. It is such a relief!!!! It seriously seemed like his body was possessed. He was already very agitated to say the least but it seemed when we increased or bolused his IV pain meds he really went to the next level of irritable. Something like this'll be considered a paradoxical reaction to to those IV meds but- who knows?! We are trying to recall his Glenn and if the same response happened but the details are muddled.

From here on out the goal is to get the excess fluid out of his body. He has had roughly 1 liter of fluid out of his tiny 2 year old lungs!!!! Can you believe that?? He is peeing but in comparison to how much extra water weight he's carrying he still has a long way to go. His electrolytes are running only slightly below normal but this is par for the course because the diuretics take them all with it as he goes pee. Once he eats a little more he should be able to account for all those electrolytes himself.

Jonah's heart continues to stay strong!! We haven't done an echo yet to look at detailed heart function but everything else they monitor does not indicate there is anything to worry about. An EKG was done last night just to check what looked like a funky rhythm but even that showed normal sinus rhythm. What they saw was probably a result of a whopping cocktail of medication;-)

To all the Jonah fans out there--thank you for your continued love and support!! We are so grateful for each of you!! To our Lord, our Healer--thank you for bringing Jonah out of the darkness of recovery, and above all else, thank you for holding Jonah's heart in the palm of your hands and loving him like only You can do!!