I sent this out last year following Jasmine’s transplant. Most of you probably read it then. I post it in memory of a great event in Jasmine’s life. Jeff asked me today how it is that there could be so many.
“I can breathe!” This delivered in an incredulous and breathy little voice… These words have never had the significance they had for us on Saturday, March 29.
The end stage of our journey towards Jasmine’s new lungs started the evening of Wednesday, March 26 at about 10:30. Jeff and I had just finished watching the news and were getting ready to go to bed when the phone rang. Neither of us thought much of it — it could have been any one of you, calling to check in on how we’re doing. Except it wasn’t.
Jeff answered the phone and it became clear very quickly as I listened to his end of the conversation that he was talking about lungs for Jasmine. The initial phone call was relatively short and we immediately began to run around like maniacs trying to get everything ready to go. It’s funny — being pregnant, I’m aware that most books tell you to keep a bag ready for the trip to the hospital. In retrospect, I realize we should have done the same for Jasmine’s transplant as it was a chaotic 15 minute rush to try to get out the door.
We’d been waiting for this moment for so long, I was taken aback by my initial reaction to the news. I was terrified and I remember thinking, “Wait, I’m not ready yet!” As I was rushing around trying to gather what we needed, I looked for a moment at my bed and wanted nothing more than to bury my head in the pillow and cry. What if we weren’t making the right decision? What if she died while they were operating or soon after? What if, what if, what if. The doctors had assured us that this wasn’t very likely, but I was totally gripped by fear. At Diana’s Grove, there’s a saying for when you’re asked to do something that pushes you into scary territory — “Do it afraid.” That’s what I did that night.. I don’t know how I found the strength, but I did.
Jasmine, on the other hand, was totally excited. She was groggy when I went in to wake her. “Jasmine,” I said, shaking her. “You have to wake up. Daddy’s on the phone and they might have a set of lungs for you.” She stirred a little and I repeated myself. Suddenly, her eyes popped open, so wide I thought they might pop right out of their sockets. Wanting to take my cue from her, not wanting to project my own fear on her, I asked her what she thought about that. She said she was so excited, she was shaking. I let her excitement be infectious and we moved on in our preparations to go to the hospital. I explained to her that there was a chance she could go to the hospital, be totally ready for surgery and then get sent home. It’s not at all uncommon for this to happen to transplant patients and I wanted to make sure she was prepared for the possibility.
Gabrielle woke up with a tummy ache — too much excitement, I think — and was afraid of throwing up, so I elected to stay home with her for the first part of the night as we knew the actual transplant wouldn’t happen for awhile.. (Again, there was even a chance it wouldn’t happen at all, as sometimes they find problems when they actually take the organs from the donor. This is why I didn’t call anyone right away.) In addition, I started having contractions and I was determined to prove the doctor wrong — he’d told me a couple weeks prior that I would go into labor when Jasmine had her transplant. So I decided to stay home with Gab, lay down and TRY to calm down, drinking lots of water and writing in my journal. While I waited, I prayed for our family, but also for the family of the donor. The decision they made touched so many lives.
Initially, when Jeff got Jasmine to the hospital, they told us surgery would start at 4:00 AM on Thursday, March 27. Gabrielle went right back to sleep, but Jeff, Jasmine and I sat up for quite some time, they at the hospital and me at “home.” At about 2:30 AM, they alerted Jeff that the surgery was going to need to be rescheduled to 4:45 AM due to the fact that the donor family had decided to donate all the organs from their child, meaning several surgical teams had to work at once. Half an hour later, they let us know it was going to be postponed again, to 6:00 AM. Jasmine went to sleep after the 2:30 notification, but Jeff and I only got spotty sleep as we waited to see when surgery would actually happen. When I didn’t hear from anyone by about 5:30, I assumed it was actually going to happen and sure enough, Jeff called about 45 minutes later after he’d walked Jasmine to the OR. Finally, I called my mom and told her the news, then I woke Gabrielle up and went to the hospital to wait with Jeff.
The surgery was estimated to take anywhere from 6-8 hours and we settled into our waiting room. The surgical staff made sure we had hourly updates on her progress. Waiting was tense, but punctuated by good news from the OR. Finally, at 12:30 PM, she finished. Her surgeon, Dr. Eric Mendeloff, came in to let us know Jasmine’s surgery had gone very well, and that she’d be moved up to the Pediatric Intensive Care Unit (PICU) within about 45 minutes. We moved upstairs to wait.
Gabrielle was a wonderful trooper while all this was going on. It could be that she was the only one of us who’d had a full night’s sleep, but I think it’s more that she’s a great team player. Normally, we call Gab “Tigger” because she simply cannot stay still. It’s against her nature to be static as long as she is conscious. Still, on Thursday, she did a great job of asking questions when she had them, coloring pictures for Jasmine and watching DVDs on Jeff’s computer as we waited. She kept herself occupied while Jeff and I took turns napping and was generally a great source of smiles and support.
I was able to see Jasmine for the first time at about 2:00 PM. I had to suit up as she was (and is) in isolation, requiring masks, gloves and gowns to keep her as germ-free as possible. As I approached her bed, I was filled with relief as she was breathing and her color was actually pretty good. She looked like a little pin cushion with a ventilator. She was covered head to toe — literally — in betadine, with multiple IV lines in both arms and even one in her neck. The ventilator tube was actually quite a bit smaller than I’d imagined, and her breathing was kind of jerky (Jeff called it “carp breathing”) as the ventilator was doing almost all the breathing. She was kept deeply sedated so that her lungs would have a bit of time to heal before she began trying to breathe on her own. She had four tubes coming out of her chest to allow for drainage from the surgery, but all in all, she looked better than I’d thought she would as she embarked on what has been a remarkable recovery (though it’s not over and we remain cautiously exuberant, if you can imagine that).
We were not allowed to stay overnight with Jasmine while she was in PICU, which was maybe the hardest part about her stay there for all of us. When we arrived at the hospital on Friday morning, we were surprised to see her somewhat awake. The first thing she wanted was the ventilator tube out. We’d been told prior to surgery that this tube could be in for as many as three days — more if things didn’t progress well. We were astonished to find that Jasmine was doing so well they were already planning to extubate her — to take her off the ventilator. Almost exactly 24 hours after her surgery, Jasmine was taken off the ventilator. Her surgeon told us that if it wasn’t actually a record, it was pretty darned close. Her recovery was so remarkable that PICU nurses were telling us hers was the best they’d ever seen. She was still heavily sedated for pain, but continued to improve.
On Saturday, the doctor decided to remove two of her four chest tubes. This was another significant step in her recovery. For many transplant patients, the main source of discomfort is not the actually incision in the chest — it’s the tubes. Waiting to get them taken out can be excruciating. This was another speedy development. Some people have their tubes in for weeks. She also got rid of some of her IV lines on Saturday — it seems like we’ve lost one a day since her surgery, with the last non-permanent line coming out yesterday, Monday the 31st. Every day we’d hear from her staff how well she was doing and every day she would be a little more alert.
My mom flew in on Sunday and is a great help to us, as Gab has only been able to visit Jasmine once. This is hard on both of them. After Jasmine gets her remaining chest tubes out, we’ll be able to arrange a meeting for them elsewhere in the hospital, but for now, they have to remain separated. Mom stays until next Sunday, when she’ll fly home, likely returning with Dad in June.
Yesterday (Monday), Jasmine was moved from the PICU to a “regular” ward. She’s doing extremely well by all measures. She now has a phone in her room and can receive phone calls. Her contact info is as follows:
I’m not sure exactly how much longer we’ll be here, but I’d hazard a guess that it will be at least until next Monday.
Today, they changed Jasmine’s pain medication and she is much more alert and awake. I’m really looking forward to what tomorrow brings. We go home every night tired (though now one of us stays with her), but every day is good.
Tomorrow we have our first appointment to begin learning how to care for her post-transplant — this will be an ongoing process for all of us. On Thursday Jasmine will have a biopsy of her lungs to see what, if any, rejection is happening. This will be another big hurdle for us, and I don’t mind saying I’m nervous about it.
We could never have made it through this process without the support of everyone out there — our community that literally spans the US. We have had prayers from coast to coast, covering just about every tradition and denomination and I know that is a huge part of Jasmine’s recovery. We are reminded every day now how small the words “thank you” are in comparison to what we feel.
I will try to update within the next week, but I can’t make any promises. Things are so hectic right now and it’s physically and emotionally exhausting. I wanted to get this one out though — I wanted to make sure you all know the waiting is finally over.
Monica, Jeff, Jasmine and Gabrielle
PS: I plan to thumb my nose at the doctor who told me I WOULD go into labor when Jasmine had her transplant. I’ll be seeing him on Monday. Baby is still right where she belongs, inside my womb, and hopefully won’t make an appearance until early May.