How old am I?

Lilypie First Birthday tickers

Saturday, January 10, 2015

Jonah and Stella's Christmas Video

Better than a Christmas card, right?

Sunday, April 6, 2014

Jonah and The Jeep

Sunday, November 4, 2012

5 Weeks Post Fontan

Since we last talked...Jonah has been making slow and steady progress. After that horrible Tuesday he spent in the tank, I called his Cardiologist to explain the series of events from the day. As I mentioned before, it was decided that Jonah's diuretics should be cut in half. This was a big move in our minds because it meant testing the waters...rocking the boat...playing with fire, if you will. We knew that we couldn't keep slamming him with the "big dogs" forever, and clearly his body wasn't happy with them, but it still meant opening the door of potential fluid accumulation on the right lung. I think that we were even more nervous because we saw first hand how small changes result in big problems. Here, we were making a pretty big move in our minds.

Turns was just the right move at the right time. Since then, it seems we have more and more of the old Jonah back. He has had more good days than bad and he seems to be a little more predictable. Last Friday we saw our Cardiology team again and Jonah had the full battery of tests. His EKG was good. His Echo reinforced that with good overall function. But...they could see that the pressures were still high in the new circulation supporting Jonah's heart. We were mostly reassured that this is actually pretty typical at this point after surgery. The biggest sigh of relief came when there was no evidence of fluid building anywhere near his lungs. Praise God!!! There are a number of concerns that play a part in the potential for chronic pleural effusions post-Fontan but probably the biggest culprit is the location of the Gortex conduit used to bring up the inferior vena cava to the pulmonary arteries. It runs next to the right side of the heart very close to the right lung. It is also semi-permeable. As pressures increase, resistance builds, the natural exit would be leakage out of that conduit as well as back up in the pulmonary arteries. We have heard the adjustment the body needs to rest with this new "improved" blood flow can take anywhere from 3-6 months, up to one year!

Jonah's meds were left alone until we meet again in December. A few other considerations at the moment are 1) Jonah's INR and 2) his electrolytes. Both clearly affected by his diet and intake. On that front, Jonah is also much improved. There are a couple of old stand-by's that Jonah is not fond of right now but overall he is eating pretty well. His oxygen saturations have been consistently 96-98% while asleep without any supplemental O2.

These last 5 weeks, even these last 5 days, have brought their own set of challenges and changes. There are no words to explain what this experience has been like just standing by Jonah's side, just holding his hand through it. For him, we have certainly seen the physical impact, but the emotional impact has taken a serious toll also. For every smile, every laugh...for each and every new word/s Jonah has said since coming home...we count our blessings and thank God for His victory!!

Thursday, October 25, 2012

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...

Monday, October 22, 2012

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...

Friday, October 19, 2012

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!!!

Sunday, October 14, 2012

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...