The Virginia Witmers

What's Happening and What We're Learning


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There’s No Place

Like HOME!

It’s hard to believe, but after an intense but relatively short 10 day stay in Charlottesville we are back in our sweet house. After John’s chest tube was removed on Thursday evening, things started to move quickly. Once he started acting more like himself, eating, sleeping, using the bathroom, taking his medicines by mouth and taking walks, the doctors and nurses wondered what was keeping him in the hospital. When they couldn’t answer that question, they all agreed it was time to discharge! It all felt very fast but we also saw that he was healing well and knew that he would heal even better at home. So for the first time since 5:30am last Thursday, John experienced the fresh air of a beautiful June day.

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While John is healing quickly physically, we are seeing the effects of all he’s gone through in other ways. Last night, he had 2 night terrors. He could not be calmed and was yelling some of the same things he yelled when he was having those traumatic procedures. We know that we will need to acknowledge and talk through his fear and pain for a long time to come.

We are thrilled to be in our own space and our own beds tonight. We could not be more grateful for the excellent care we received at UVA. Seriously, it’s amazing the amount of knowledge and kindness that exists in that place! And we are exceedingly grateful for your support (more on this in our next post) and prayers. The Lord hears and answers abundantly!

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What a Day!

Phew! Our heads are reeling from a day full of activity and progress.

The day started off with John waking up to a lot of tears. His mornings and later evenings have been filled with complaints of sharp and intense back pain, belly pain, and almost certainly fear, anxiety, and general grumpiness about still being here (and we don’t blame him one bit). We came up with another pain management plan and hoped for relief, mainly via narcotics and general pain meds.

Somewhere along the way, the nurse noticed that John’s chest tube output had dropped dramatically. He’d been trending down but it became clear that things were really slowing down. Our Nurse Practitioner told us that the lungs eventually just give in to the new pressures and stop creating and draining fluid. I’ve heard that it can take weeks, and even months. We are so thankful that this what seemed to have happened today. At 5:30 our NP said she felt comfortable removing both chest tubes! It seemed sudden to us but she said she saw lots of signs that made her comfortable with going forward.

They gave John some strong meds so he was pretty loopy. We had to leave the room (and stand outside praying and wincing with every scream) but within a few minutes the dreaded chest tubes were out! Within 30 minutes he was playing “Crocodile Dentist” (thank you, church friends for the incredible daily gifts! This was the one he opened today!) with the NP, making sure she got chomped on after what she did to him 🙂

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We also had a sweet visit from our neighbors who gave Ben an art lesson on UVA’s lawn and took Katie to a bookstore.  They had all our neighbors sign a canvas that says “John Strong and Courageous Witmer”. We feel so loved and generously supported.

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We anticipate a night with much less heavy pain meds and back pain. There’s even some talk of going home in a few days! We’ll definitely leave the ICU tomorrow and move to the step down unit.

What a difference a week makes!


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Slow and Steady

Today was a good day overall for our John. It started out well because last night, for the first time since surgery, our whole family was together in one room! Katie’s cold finally subsided and she was cleared for a visit. We were all smiles 🙂 IMG_5049

John ate pretty well today (including nearly a whole piece of Mellow Mushroom pizza!), had 2 bowel movements, and went for 4 walks! We’re still dealing with two big things that are very much related- pain control and his chest tubes. He was in quite a lot of pain today, especially in his lower back and belly. We know that’s due in large part to the chest tubes wrapping around his insides. It will be a happy day when they come out. Sadly, he’s still draining a lot of fluid from his lungs so that day won’t be any time too soon. We’re hoping that with each walk and each passing day his lungs dry up. Please pray with us that the fluid stops draining in good time and we get those painful tubes out. In the meantime, please pray we can find the right meds to keep him comfortable but able to be up and around (because that’s how the fluid moves).

One bright spot today was a long afternoon visit from Ben. Megan Huffman, our dear friend who is hanging out in town with Katie and Ben for a few days, took them to a toy store and they chose some perfect gifts for John. Fake mustaches make everything better!


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Up and Down

It was another day full of ups and downs. The big up is that John literally got up out of bed! He took two walks without any high heart rate issues! With Andrew and I each holding a hand, and a team of at least 4 people carrying all his tubes and wires, he walked through the whole unit once and halfway the second time. He was screaming in pain the entire time but he did it.

The plan was to walk a third time in the evening but he was clearly in terrible pain. He feels it all over- his back, his chest, his belly, etc. Part of it is that he has only had that one bowel movement and he’s still clogged up but the other is those awful chest tubes. They wrap around the inside of his body so no wonder he’s uncomfortable!

We’re in that cycle of knowing he needs to walk, so that he can get the fluid out of his chest tubes, so we can get the chest tubes out. But he’s in too much pain to walk because of the tubes.

It’s been heartbreaking to watch him at times today. He’s taking more medicines by mouth and hates it. So many people are in and out looking him over, listening here, poking there, and he hates it. He’s being forced to walk with these crazy painful tubes coming out of his chest and he hates it. We know he’s in a lot of physical pain but we all agree that he has some real fear and anxiety going on- and with good reason. We’re hoping to work with Child Life tomorrow to figure out some ways to cope with that side of things.

Please continue to pray for his fear, movement in his system, and the right pain regimen.


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A Father’s Day Prayer

John had a rough night. It seems like his belly hasn’t woken up yet from surgery. He has not had a bowel movement and is very uncomfortable. Andrew stayed the night and said John would wake up often, screaming and writhing in pain. They’ve done lots of tests to rule out other things and, at least for now, it looks like it’s a very backed up bowel. He doesn’t want to eat anything. They’ve done a suppository and enema without much relief. The doctor just came to remind me that he’s still less than 48 hours post-op and overall he’s doing well. They’re hoping to get him up and walking soon. Please pray that doesn’t cause him too much pain and that gets things moving.

There was also some concern last night about excessive and additional chest tube drainage. The doctor said his was a bit unusual because it was so much, tinged with blood, and outside the timeframe they typically see it after this particular surgery. They did a belly x-ray and consulted with the surgeon but it’s stopped for now so everyone is okay with it. Please pray the drainage stops or at least continues but at the rate and consistency they want to see.

5 years ago, John got me the perfect gift for Mother’s Day that year- a big bag of pee. On this Father’s Day weekend, please pray with us that John gives Andrew lots of poop.


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We’re Thankful

for MANY things right now but most of all- surgery day is behind us! After 5 long years of anticipating this day it’s a relief to have it done. We’re certainly not out of the woods but I am looking at an extubated boy with o2 sats at 97 (this morning it was 84). We have excellent doctors and nurses (including his nurse tonight who was one of my sorority sisters!) and feel extremely well cared for. John, so far, did not throw any curveballs and the surgery went as they hoped it would.

Tonight and tomorrow we’ll dance the dance of weaning sedation and heavy pain meds, taking out tubes and lines as soon as we’re able, getting levels where they need to be, etc. They even hope to have John out walking around the halls tomorrow! We’ll take everything as it comes and celebrate each small victory.

At the end of an extremely long day, our hearts are filled with thanks. And John’s heart is filled with properly separated oxygenated and deoxygenated blood so we’ll call today a win 🙂


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The Night Before Surgery

John, Andrew, and I are all settled into the Ronald McDonald house tonight (PTL!) after a full day. It was a hard day in some ways, but we saw God’s hand all over it. The first thing we did was meet with Dr. Gangemi, the amazing cardiac surgeon who did both of John’s past surgeries. As usual, he was incredible and gave us a detailed account of his plans. He said right away that the team decided NO pacemaker for now! He may change his mind once he’s in there if John has any rhythm issues but the plan is not to install one during this surgery. We check into the hospital at 6am and he told us that they will take John back around 7am. Please pray for this time specifically. We love and trust his team but words can’t explain how heartbreaking and scary it is to hand over your precious child.

The next 4 hours (!) were filled with lots of meetings and tests. John did very well, except for those pesky EKG stickers and of course the blood draws. We were so thankful to have one of our dear friends here to hang out with John (out of earshot) during the hour-long meeting where we discussed all the risks and signed the consent forms. And we’re grateful that Katie and Ben are hanging out around Charlottesville with my parents.

One interesting and hopeful thing we learned today is that John’s surgery is going to be less involved than a typical Fontan surgery. Usually, the surgeon takes all the blood flow from the whole lower half of the body and reroutes it directly to the lungs. In John’s case, because of his anatomy, they’ve already done most of this in his last procedure so they only need to take the hepatic veins (liver) off of his heart and connect them to his lungs. Even though this means less of an obvious change (i.e. his oxygen levels will not rise much), we trust that this is the right time and right course of action for John.

The highlight of the day came around 7pm tonight. One of our amazing neighbors read our blog and was struck by John’s love for Rob Gronkowski 🙂 She was on a mission to connect John with Gronk, and we can’t believe that it worked! Rob took 30 seconds out of his day to send John a video (below) and John.Is.Thrilled. This will be watched over and over. The Lord is so kind to give us good times in the midst of hard situations.

Here are some specific ways you can pray for us tomorrow-

-Peace for John, throughout all of this but especially as he’s waking from the anesthesia
-That John would be extubated by the time we see him right after surgery in the PICU (not essential but would be wonderful!)
-That he would get the painful and cumbersome chest tubes removed as quickly as possible so he can move freely. Movement and getting fluid off his lungs is the key to leaving the ICU
-That the Lord would protect all of John’s organs, esp. his liver and his brain against a stroke, and that he would be just as sharp mentally, emotionally, and physically as he is now. It’s one of my greatest fears that he will go backward in some way or that his sweet personality will be altered
– For no heart rhythm issues. This has happened in the past so the doctors know to watch for it
-For Katie and Ben to talk and share their worries with us freely
-For rest and energy for Andrew and me. We won’t be leaving John’s side and don’t anticipate getting much good sleep in the hospital room