Now You See It . . . Now You Don't!

Jan 11, 2020

Mornings are often very reflective for me, and as I'm writing this on an early Saturday morning, I can't help but think on the many blessings and miracles we've seen over the last five and half months since Aaron's diagnosis. 

For the first few months, it was all about adding things: transfusions, central lines, medications, food restrictions, appointments, chemotherapy, hand sanitizer, hospital stays, and stem cells. But now we've reached a point in treatment where we are gradually taking things away.

Yesterday we got rid of a big one: Aaron's broviac line was removed!

Even though it was literally a five-minute procedure, he still had to be put under general anesthesia to do it, which meant he had to be fasting. This would have been fine except that they had to add an emergency laparoscopy ahead of him, which set everything back by three hours. Aaron was a good sport about it until the iPad ran out of battery, and then all he could think about was his complaining stomach.

Everyone was so nice and apologetic about the delay, but I didn't feel even a little bit resentful about it. It felt like a privilege to be there for something so celebratory when another family was desperately trying to find answers for what was wrong with their baby. 

I was worried they might bump Aaron off the schedule completely. This would have been a bummer, but merely that--a bummer. Nothing tragic. But luckily, they eventually took him back, and everything went smoothly (including a bone marrow aspiration and biopsy, which we'll have the results from next week). 

Aaron came right out of the anesthesia, but he was the grumpiest he's ever been. He kept telling the nurse, "I want to go home." And if she asked him if he wanted anything, he would either close his eyes and rapidly shake his head or huff, "Okay." The ride home was worse as his displeasure turned into uncharacteristic wailing, but as soon as we convinced him to eat something, he calmed down, and his easy going mood was restored.

And now, the line is gone, leaving just a little scar behind as a souvenir. Actually, Aaron has two scars, one on each side, because, you might remember, his line had to be replaced awhile back after it inexplicably started to come out. 

Here are a few other facts about his line:

--It was removed four months to the day of when it was placed (the first one, that is).

--When Aaron was in the hospital, his line somehow got contaminated, and so it could no longer be used for blood draws (if they needed a tacro level). One benefit of having the line replaced was that it was once again clean and fully functioning. 

--Mike or I flushed and heparin locked his line every morning and evening. When they first showed me how to do it when Aaron was still in the hospital, I was scared and nervous. But by the end, I could pretty much do it in my sleep with Ian and Clark clustered around and Aaron trying to build Legos at the same time.

--We were also trained on how to change the claves and dressing (which had to be done every week), but I was never brave enough to try it at home. This was partly because we had such an excellent home health nurse who came to our house every Monday to do it, so I didn't feel any sort of motivation to do it myself.

--Aaron's line always flushed really smoothly. When we told Brooke (our home health nurse) that Aaron's line was coming out this week, she said, "It kind of pains me to get rid of a line that is working so well." 

--When Aaron was discharged from the hospital, he was taking all of his medication orally except for magnesium. So once a week, the pharmacy dropped off the next seven days of magnesium (little spheres the size of a tennis ball), which we hooked up to his line every night. Three weeks ago, we finally switched him to an oral magnesium, and he has done just fine with that.

--I've had an alarm set on my phone for 9:00 am and 9:00 pm so I could always remember to give Aaron his tacro and other medications and flush his line. It has become such a part of our routine that whenever it goes off, Ian says, "Oh, it's time for Aaron's medicine!" or "It's time to do Aaron's line!" 

--I have a feeling that even though the line is gone, I will still be finding blue caps and the tops of syringes under couch cushions or behind chairs for many months to come.

Last night, Mike's dad showed up with a pink box from Mrs. Backer's in celebration of the line removal. That pink box has somehow become a symbol to me of all that we've been through over the last few months, and it felt like a triumph to all gather around and gorge ourselves on yummy pastries, no restrictions attached.

P.S. We have felt so blessed by the thoughts and prayers of so many of you during these hard few months. A couple of nights ago, Mike told me, "When I thank someone for their prayers, I mean it. I really believe it's because of the prayers of others that Aaron has done so well." I agree with him completely.

Although Aaron is still on the road to recovery, it feels like he is on the home stretch. It has been a fairly smooth ride, and our hearts are continually drawn out in gratitude for our many blessings.

This week, I learned about a little girl who received a bone marrow transplant about six weeks ago. Last Friday, she suffered one of the rarest and most serious side effects of a bone marrow transplant when her lungs became inflamed and shut down. My heart is aching for this sweet family as nine different medical teams try to figure out how to help her. Our whole family has been praying for her this week, and I'd like to invite you to do the same. We have seen the power of prayer in Aaron's life and know it is the same for Indy. 

1 comment:

  1. Yay Aaron! He and his family have been so amazing through all this. I spent Christmas in Sandy so I was especially thinking of y'all, particularly when we went to see the lights at the downtown Temple. And it's so great that he can open a pink box and see actual Mrs Backer's pastries inside!


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