One Wild and Crazy Ride

And so it goes with our dear Jonah:) We have said this before in the past...he goes from 0 to 60, he has no grey area or middle ground. His recovery after the Fontan has not been any different. Whether it is medications, not eating, no naps or a new drawn out bedtime routine, oxygen saturations, dehydration, temperament...Jonah's day-to-day seems like a play book of opposites.

Tuesday was kind of a train wreck. It started out with Jonah completely refusing anything to eat for breakfast which made sense because he quickly started to work on a poop that was not going to come easily. I let go of the idea of food to let Jonah work on a few things but we needed to get going on checking his INR for the week. It was the first trip to our local hospital's outpatient lab and I had a feeling it wasn't going to be quick. We had to register first, but overall, the whole process didn't take as long as I expected. This lab is able to check his INR by doing a finger stick similar to a diabetic checking their blood sugar. This did not make any difference for Jonah-traumatized...although I think this part will get easier. Any waaaay, his INR was 3.3. Too high for the target range of 1.8-2.2.

By now it was about 12:00. With nothing in his belly and all his energy spent freaking out in the lab, Jonah passed out in his car seat immediately. I just kept driving with the hopes he'd stay asleep long enough it could qualify as a nap and I ended up at my parents house. This is where we ended up on that teeter-totter-gone-bad again. Jonah started throwing up. He still hadn't eaten, he still hadn't pooped and now he couldn't even keep water down. Within a matter of hours, his eyes hollowed out, dark-ER circles appeared under those eyes, and he was so lethargic he couldn't hold his head up. He had been drinking well throughout the day until now but his fluid restriction/medication balance was clearly unbalanced!

Seriously, they keep telling us this is all typical of a post op Fontan but it in no way, shape, or form makes this any easier to accept or to handle. Our nerves are shot. Our patience lost. Our energy on "E".
We talked with our cardiologist and decided to cut Jonah's diuretics in half and are sticking to 0.5mg of Coumadin until the next INR check next Tuesday. This change in medication can be a good thing. A step in the right direction, but we are still nervous of a lurking pleural effusion. I guess we'll never know how he's really adjusting until we try. And the fact that he was so dry again tells Jonah's medical team it's time to cut back, an indicator his body may be acclimating to the new circulation.

Only time will tell. Hoping we can hang on...

What's Happening Now

Since Jonah's cardiology appointment last Friday, the only real change made was to give one less dose of diuretic and, as of this weekend...sort of unofficially...we are going to give it a go without oxygen overnight.

On Sunday morning we woke up to hear Jonah saying "owie owie" on the monitor. He wasn't crying, just sounded annoyed. I figured he was trying to pull the nasal cannula off his face which we taped to the side of his cheeks to keep in place. When I walked in I found this to be true but also discovered the tubing of the nasal cannula (which is all one piece) had wrapped multiple times around his neck and pulling tight from the machine delivering the oxygen next to his bed. Yikes-beyond scary!!!! That was all we needed to pull he plug. We had been afraid of this possibility the minute the equipment came in to our house...especially with the way Jonah sleeps...any way you rig it, the possibility is just always there.

So last night we decided to leave his oximeter probe and machine on all night to get an idea of Jonah's real oxygen levels while he's asleep. We haven't done this...ever, actually. But in order to feel comfortable without the oxygen we needed to know. While reading books in Rob's lap he was about 94-95%. When we peaked in his room before we went to bed we saw 97%!!! This was such a relief and was enough proof for us that Jonah does not need the supplemental oxygen at this time. Tonight, we set the monitor up again and are hoping for the same numbers!

Eating has definitely become more of a challenge as the days go on and we think the meds are playing the biggest part in this-for so so many reasons. Jonah appears to be much more gaggy with foods of a certain mushy, sticky texture. Right now, it's pretty likely we can relate that to the attempts we made to mix medications in things like his yogurt, applesauce, oatmeal, bananas...all his favorites pre-surgery :-( He definitely does not have a vigorous appetite either. Meds, change in blood flow to his gut, and maybe even bad timing on new molars equal Jonah barely picking at noodles, Cheerios, and chicken. We are 3 weeks from the Fontan and it has been 3 excruciatingly long weeks of watching this. It is truly wearing on us. Besides being dehydrated, he las lost at least 2lbs.

Tomorrow we will be checking out our local lab for Jonah's INR level. In two weeks we see cardiology again to fine tune things yet again and definitely do an Echo/EKG. In the meantime, we hope to have more days like this...

One Small Step

On Tuesday, we went to see the cardiovascular surgery team at Hope for our first post-Fontan follow up. Jonah had bloodwork and a chest X-ray done before seeing the nurses to help determine our plan of care going forward.
His lab results looked really nice with all if his electrolytes in normal range. His kidney function was good and those values (BUN) only showed mild dehydration. His INR was just a touch on the high side so we have ever so slightly tweaked his Comadin. The rest of his medications were unchanged at this point.
The biggest accomplishment during this visit was discontinuing Jonah's oxygen during the day. That's it. One change at a time. We collectively have determined that taking things slowly with Jonah seems to have the best results. We've learned a lot about how his little body works along this bumpy ride. With that, taking Jonah off oxygen feels like a giant leap in his recovery. In no way do we want to push his heart and lungs at this point, so we wait on pins and needles during this precarious time as his vital organs adjust to his new blood flow. We are still putting the O2 on him at night but the freedom of having our boy back untethered from all of the leads and cables and tubes has been so refreshing.
Tomorrow we see Jonah's cardiologist who will take the wheel from here on out. We aren't sure if we'll have an ECHO or EKG, we're just hoping we can get Jonah in the front door without a complete meltdown. Seems doubtful, but he's full of surprises;-) We will keep you posted and Thank You again for hanging in there with us!!!

Take a deep breath

Our first 2 nights and full day home have been quite uneventful. A rainy fall Saturday easily leant itself to a day inside watching movies, playing with every toy Jonah owns, and taking a few naps. Really, for me, it seems the exhaustion has truly set in. In the hospital I got enough sleep to get by but the days were always full of ups & downs, changes here & there...I always had to have my head in the game. Yesterday in the comfort of our own home I finally felt like I could breath easier, let my guard down, and let go. Actually, this is true for all three of us!

Jonah woke up twice the first night home. After a diaper change and something to drink we all went back to sleep pretty quickly. Last night he slept through the night and woke up in a much more pleasant mood.
The medication schedule for Jonah is the heaviest in the morning and evening as most of them are once or twice a day right now. Going forward I will try to crush any pills the night before to cut down on the prep time in the morning and lessen the anxious cry for something to drink as Jonah waits for everything to get ready. So far he's been really good with his new regimen, as in no puking and not fighting too bad. As soon as we cut back on some of his electrolyte supplements the total # of meds should be more manageable.
Oxygen at home has been going alright. Jonah is very active and can easily get up & quickly take off in one direction while we try to react fast enough to bring his O2 tank along. He is very good about keeping the cannula in his nose and doesn't seem to mind the tubing trailing behind him, that is not the hard part. Keeping up with him has been a two person job for sure so it will be interesting when Rob goes back to work this week.
We gave Jonah a real bath for the first time in practically two weeks. We washed him up in the hospital but it's not the same. We were able to get all the adhesive off his body, cleaned up the "gunshot wounds" that are his chest tube sites, trimmed his nails and washed his hair (thank goodness we cut that mop before we went in!)

Jonah goes back on Tuesday for a full days appointment including a chest X-ray, blood work, and a full exam by the surgical nurses. Please please pray that Jonah's lungs continue to be free of fluid and that we may discontinue the oxygen during the day!! We know that each and every one of your prayers have been heard and that He has answered back in His own way, in His own time. God Is With Us! God Is Able! We have been abundantly blessed and know our Lord will continue to strengthen us!

Jonah's "coffee"...milk in a Caribou cup...

Home!!!

We received the good news this morning; Jonah's fluid around his lung was gone and his blood work was acceptable enough (low INR, low potassium) to go home! From then on, the day was a whirlwind of medication orders, pulling of Jonah's last IV, flu shot, packing, and checking out of the RMDH.

Jonah was happy to be in his car seat and immediately started pointing out all the trucks and buses he could find. But the excitement got the best of him and he was quickly asleep and slept the rest of the way home. Taking advantage of Jonah's nap, Stacie unpacked a bit and got organized once we got home while Rob stayed with a sleeping Jonah in the car running in the driveway. When we finally woke him up to tell him where he was, Jonah was all smiles. We sat him on the couch, turned on a favorite movie and let him wake up before having to cram the next round of meds down him. After a good snack, Jonah was ready to get down and play on the floor with his cars. It takes two people to get anything done now that he is connected to a the oxygen tank. Speaking of oxygen, Home Care dropped off more oxygen equipment and now we have half a dozen oxygen tanks and a giant electric beast that is the size of a mini-fridge hooked up in his bedroom.

After visits from our wonderful neighbors and Gaga and Papa, it was once again time for another round of meds, and before we knew it, bed time. He fell asleep in record time back in his old bed. Hopefully we all can get a full night's sleep. We have grown so accustomed to the 12pm, 2am, 4am, 5am, 6am vitals, labs, X-rays, meds, etc that we don't remember what a uninterrupted night of sleep is.

Check out the bag full of meds we had to pick up in the pic below.

So close, yet so far away

On Tues we were given the option to go home Tues night or Wed. We chose to play it safe and wait until Wed, and boy did this turn out to be a good decision. The docs had noticed a slight sliver of fluid around his right lung but at the time they were not concerned. However Wed's X-ray showed the fluid had dramatically increased, and therefore the dream of going home was crushed. But on the bright side, if we had not chosen to wait until Wed, we would have gone home without the morning X-ray and would have been oblivious to the growing fluid around his lungs. By the time we would have caught it (at next week's follow-up), it would have been a bad situation; he would have been re-admitted and had the chest tube put back in.

So yesterday they loaded up the diuretics once again in hope of drying up the fluid around Jonah's right lung. If that didn't work, they warned us that they would have to put a chest tube back in. Luckily the diuretics worked! The X-ray this morning showed good progress. Although there was still some fluid, we are hopeful that more of the same diuretics today will do the trick. The cardiologist won't commit to a discharge date yet, but hopefully it will be tomorrow or Saturday. It all depends on how his X-ray and blood work checks out.

The docs also have recommended that Jonah stay on 1 liter of oxygen 24/7 when we go home. At least for the first week and it can be reevaluated at the follow up appointments. It will be challenging to say the least to have a 2 year old hooked up to a big oxygen tank, but we are willing to do anything to help in Jonah's recovery. We are quickly realizing how long and treacherous the Fontan recovery can be. It will take months for Jonah's body to adjust to the insane re-plumbing of his heart. So if a week or so of oxygen will help, so be it.

As for Jonah himself, he is being a very good and patient little boy. He is playing well, and we are doing our best to keep him occupied and entertained. The last 2 days we have been getting out of the room and walking down the hallway to the play room. Today he took a wagon ride down to the main lobby to look at the fish tank, took a short stroll outside and stopped up on the 3rd floor to say hi to all his friends that took care of him on the PSHU.

Hopefully we can keep his spirits high, along with our own, so we can get out of here in the next day or so without too many more challenges.

Please pray for a good X-ray and blood work in the morning!!

No Discharge

More fluid built up in Jonah's right lung. We have been advised to stay for at LEAST 2 more days.

So hard. So sad.