April 2020

Now that we're two months post-op, I think I can confidently say Job really truly is talking more! His voice is so much clearer and stronger. He has a huge vocabulary and it's as if all these words that had been stored up in his head the last 2-3 years are now just pouring out!

We've been really strict on our lockdown. We haven't gone anywhere or seen anyone. Walmart Grocery Pickup is really struggling to keep up with all the new orders, so that's been inconvenient and has meant a shopping trip or two. It's weird to mask and wear gloves and sanitize everything. Maybe it's all unnecessary but we're wanting some time for things to settle before we discard such precautions.

We've gone on a few little family excursions to find isolated places out in nature to get a break from the house. It's been pretty difficult, actually! Favorite haunts are overrun with people, so we've had to go out rather far.

Art class has moved to Zoom, which has been quite the experience. It's helped us to remember to pray for all of our friends who are struggling with their online school experience.

I keep finding weird selfies on my phone courtesy of Isaac.

And I picked up cross stitching again!

Just the smallest bit of sunshine inspired the boys to pull out the hose and pools.

JOB CAN RIDE HIS TRIKE!!!! Oh, I wish we were still in weekly PT to show off this long-fought-for skill to Miss Kendra.

We were really really sad to miss out on Job's elaborate birthday plan: everyone dress in green and go to a park. (He was really inspired by Delaney's pink party.) But sweetly his cousins and aunts and uncles all dressed in green and sent him photo/videos birthday wishes and his brothers decorated a cake for him.

March 2020 Update

 Wow, the world changed. I'm still in disbelief and really, I think most of the world is.

We bought a new van just a week before Job's hospitalization and it felt a little silly to have it sit in the parking lot all week, but how much more so now that we're on lockdown and hardly going anywhere?

Well, we did go up to Lake Bosworth and we have gone on two Sunday afternoon drives after watching the sermon online?!?! What is this world??

We've done quite a bit of baking and so many walks around the neighborhood. Seth has been playing some online games with the boys, like the old Oregon Trail game and some escape room games. And we've been sending and receiving quite a bit more mail!

February 2020 Update

Whelp, what a month.

Job started coughing with some clear snot about three weeks before his scheduled nerve re-innervation surgery (on February 26th). We kept in close contact with the PASS clinic (basically, the anesthesia and pre-op team) with phone calls every few days, monitoring his symptoms. I was absolutely sure the surgery would be cancelled. He sounded terrible. He looked terrible. And the rest of us were really sick too. It was the worst cold we've had in years, actually.

He maintained his oxygen saturations in the mid 90s and wasn't having particular difficulty breathing. If I wasn't so devastated at the prospect of cancelling a surgery I'd been waiting for on for nine months, I probably would have been really excited about how well he did navigating a nasty cold! Buuuttttttt I struggle to hold my plans with a loose grasp and remember all the ways we *are* blessed and all the ways God *has been* faithful to us and promises *to continue to be* faithful.

I had high hopes for this surgery. Too high, of course. I let my mind wander with thoughts that he'd never choke again! He'd speak so clearly! He'd get off thickened liquids immediately! I KNEW that if any of these things became even slightly realized it would just take time, but still. I had the date on my calendar and I didn't want to change it. I pouted and raged and wailed.

Because of the mold issues in the operating rooms and months of rescheduled surgeries, because of our surgeon's schedule, because of the UW surgeon who was coming over to assist on this surgery, because of Job's immunosuppression and fragility, the hospital was really reluctant to reschedule. I was actually very surprised. I've had to push harder for less complicated procedures to go through when he's had milder colds! I really wanted them to just cancel, but they kept telling me to call back in a few days. They said they'd decide on Monday (the 24th). I was really annoyed that they were even pretending they could go through with it because Job was too sick. I was resigned. It was cancelled. I made a new plan.

And then, as it turns out, he had a really good weekend. Monday he hardly coughed. The team met and discussed the viability of continuing with the surgery. They called me for an update. Then they said they'd call Tuesday. And sure enough, Tuesday they told me to just come on up for an assessment the next morning. We held meds, packed bags, arranged for activities and school for the big boys, but I drove up there fully expecting to turn around and come on home after they listened to his lungs.

As the various nurses and anesthesiologist and otolaryngologist fellows came in and out I kept emphasizing how sick Job had been, but after about 12 different people listened to his lungs and after the two surgeons and the attending anesthesiologist took a listen, we decided to proceed. The thing is, Job's lungs are so damaged and his vocal cord function is so inadequate, that he always coughs. His lungs always sound junky. And is there really going to be some time in his life (especially in cold/flu season?!) when he's three weeks removed from a cold? And the logistics of rescheduling with the surgeon from UW meant it might be another six months until we could make this surgery happen. I told the team that I felt comfortable proceeding if they did, but that I expected a greater oxygen requirement and a few extra days at the hospital. I saw the fellows smirk as I said that, but the attendings agreed with me. Job always always needs extra oxygen. He always needs extra recovery time.

Sure enough, though the procedure went well, he had a really rocky recovery and got to go up to the CICU on a ventilator. He actually was extubated fairly quickly once up there but it was pretty intense for a while.

Once he finally woke up, extubated, he had an ok night and was even pretty engaged the next morning. I'm always so grateful for Child Life's sweet care of us while we're inpatient. They always seem to find the perfect toys and crafts and activities from him.

We enjoyed watching the construction out our window.

And, of course, screen time is always a big hit.

And chocolate milkshakes!!

It took a few days to get out of there, as usual. It always feels like first days (sometimes weeks) we're there, when he's really sick, time races by and I'm just completely grateful to be there. But there's always a certain point when my gratitude turns to discontentment. A point where we both want out of the hospital and I struggle mightily to be thankful for their care.

I did listen to a couple podcasts about the "Coronavirus" people are starting to talk about and read a journal article about it. There was a big department meeting about whether or not to ration masks and whether to implement stricter iso regulations but final determinations were to be made by higher ups, so our unit didn't change policy. And, really, Job is already on strict regulations so likely nothing would have changed for us even if it did for the unit.

I think discharge day is always the hardest because it seems to drag, and the whole drive home is joyful, though impatient. I will continue to preach to myself to be thankful but I think this will always be a particular struggle for me.

And, of course, there's nothing sweeter than watching the boys exclaim over each other on our homecoming. They certainly argue and bicker and often sin against each other, but they truly love each other and are so very relieved to be reunited.

January 2020 Update

The dawn of 2020 brings us close to the fourth anniversary of so many notable dates in Job's life. I can't believe that in three short months he'll turn four years old!

He continues to do well. So well, in fact, that Seth and I both left him for 48 hours to go on a snow retreat with our church youth group. I got to go two years ago, about two weeks before he started walking and we therefore realized he was in heart failure. The last two years have been so intense, medically speaking, that it just feels like such a big big deal that he's stable enough to be cared for by other people!! We had a great time and felt so refreshed after a little break from medications and childcare.

Job gets to go longer and longer between blood draws now too. This is so exciting to me!! We did weekly labs for almost three years, so I definitely feel a little odd going in so "infrequently" but I'm so glad for his sake. We'd been going monthly this last 6 months but after our next clinic visit we should be able to wait three months!

We absolutely love the phlebotomist at the South Sound Clinic who does his draws but we like seeing her less and less! He's had at least a thousand draws and no one else has ever had such a rapport with him or such relatively easy pokes!! That's one of the strangest things about Job's care. The more he stabilizes the less we see the people on his care team who have been so very important to us. I remember our pastor saying something about crying at the retirement of one of his son's specialists. At the time I think I was only pregnant with Job and I at least mentally rolled by eyes at such sentimentality. But I had no idea how much Job's providers would come to mean to me. If we continue to just talk phlebotomy, we have had many absolutely horrendous draws (or failed attempts!) so to find someone who isn't just skilled at her job but who is also just lovely to Job? It took us a good two years to find her and I don't ever want anyone else to ever draw his blood again. Of course it's a wonderful thing to not need the services of all of these people! That, of course, means Job is thriving! But it's also jarring.

Job does pretty well with his draws. He recognizes the building when we pull up and begins to beg me to turn around and go home, but as we talk through it yet again he can calm himself down pretty well. His big brothers are usually along and they are just such a help. While I'm checking in at the front desk they can just continue our spiel about why draws are important and what the steps are. Lately Job has even been filling in some of the steps himself. It's so strange (and frankly heartbreaking) to hear his little voice talk about doctors needing to test his blood to know how much medicine he needs.

Next month he (finally) gets his vocal cord nerve re-innervation!! I am sooo excited!

October 2019 Update

Today is the one year anniversary of Job's heart transplant.

Seth wrote a letter to our donor family a few weeks ago and I got to hand it to our transplant team this week. It's up to them if they want to receive it or ever respond. We will be so happy to let them direct our interactions.

When we first started talking about heart failure and possible transplant I started wondering how to think about it. What to say about it.

How do you possibly ever articulate such immense gratitude?

We talked about having some sort of family celebration to acknowledge this day, because it feels like the most monumental day in our lives. The big boys were especially troubled by this idea, however, because how do you celebrate a day that is also such a monumental day of pain for another family?

Ultimately, we didn't really get to decide how to acknowledge this day because Job decided for us. He had his annual biopsy a few days ago and needed a great deal of oxygen during the procedure and then spiked fever after fever in the PACU and CICU. When febrile his heart rate and respiratory rate skyrocket, so we're still inpatient on quite a bit of oxygen and don't expect to go home for at least a few more days. Though he's not showing typical cold symptoms, he did swab positive for a virus so that seems to explain at least some of his recovery issues. It was a great relief to get a viral explanation because, of course, everyone's mind immediately flies to possible rejection. His biopsy results came back completely clean, however! No rejection.

He is terribly irritated to be in the hospital and to have extra cares and to feel so sick. This is the first time he's been able to express himself verbally while hospitalized, and so he's letting us know that he "really, really, really hates it". He mostly ignores his providers and me but if he does acknowledge us then he does so with utter scorn and derision.

I've joked to some of the transplant team that they're so nice to him that he keeps wanting to come back for more attention and to celebrate his transplant in the very place it took place. All "joking" aside, SCH takes such wonderful care of us; we're so very grateful for this place and these people.

I think this admit and its drastic change of plans for our week underscores what transplant life means. What CHD means. We are immensely grateful for this beautiful gift of a new heart. But it didn't fix Job. He will always struggle to stay marginally healthy. He will always be in and out of the hospital. He will always need close monitoring. He will always mess up my plans. We're so incredibly thankful to have this extra time with Job but it's still really hard and it will always be really hard. I've struggled for months to write any sort of update because of this tension but I've been realizing that this will always be a tension we will wrestle with and I won't ever be able to articulate it well.

If I'm being completely honest I don't feel very celebratory. I'm so frustrated to be at the hospital again. And that feels like such a betrayal to our donor family's sacrifice. I struggle to feel all my feelings and still hold them accountable for what I know to be true. This is really hard AND I'm really grateful. This really hurts AND God will use it for my good and His glory.

August 2019 Update

Job continues to do really well. We still have lots of concerns about his vocal cords but are working with Oto to schedule that nerve re innervation surgery this fall.

He's adding new words every day, which is just thrilling. It took him so so so long to say anything and now he just won't stop talking! It's very hard to understand him, but he is talking!

July 2019 Update

Job is now 9 months post-transplant and, in so many ways, really thriving.

His heart is so stable and we're just thrilled. We don't have to see cardiology until he has his annual biopsy in September! September!! That's two whole months between cardiac appointments! What is this?

The only other time we tried to go two months between appointments was back in January 2018, but we only made it a month because as soon as he started walking we knew something was wrong and indeed, he was in heart failure.

The main focus this summer is speech therapy and helping Job advance his expressive language capabilities. Weekly speech therapy has been very helpful but we're also working with Pulmonology and Otolaryngology to try to optimize his lung and throat capabilities before we hit cold and flu season.

His vocal cord gel injection back in June helped a great deal - he can now speak with more volume and perhaps a bit more clarity, he can now swallow safely although still on very thick fluids, he can move his body

We haven't hit any of his "transplant" anniversaries yet but we keep marveling that he can do xyz "summer thing" this summer because last summer he was declining so rapidly. We're just starting to write a letter to our donor family because we can send it to them in October, at the year mark. But how do you write such a letter?

We're well aware that this transplant won't last Job's whole life. It may not even last through his teens! We're well aware that he will continue to have many doctors appointments and he will always be on medications and he will need therapies for many more years. As he runs (he runs!!) and plays this summer and everyone around us is (rightly!) excited about his very good health, I struggle to know how to hold these things in tension. My excitement and oh such deep joy that he is still here for me to hold and play with is tempered by my awareness that this gift has come at great cost to our donor's family (and to our family).