Our delicate girl
First, if you get our blog updates from an email- it's come to my attention that you're getting a very limited version. So, please click here and it will take you to the actual blog- where you can see everything. Thanks!
Second, I'd like to apologize for weeks of radio silence. I guess I was waiting for things to "settle down," but the outside world went crazy just as Amri's body started to get on track.
A visit with a therapy doggo.
Last we spoke, Amri was inpatient, slowly recovering from the hideousness of Days +5 thru +14. She had to go everywhere in a wheelchair. I wheeled her to a Valentine's themed vendor event in one of the meeting spaces at the hospital- we smelled a lot of fancy soaps.
That week, I received a phone call from the Children's Inn about a special event that was happening on Valentine's Day. They told me that the First Lady would be coming to do activities and asked if Amri would like to be part of the event. Amri's medical team came up with a great plan to transition her so she could participate. She would spend the mornings in her hospital room, getting IV meds- and her evenings at the Inn- free from the IV and the wheelchair. That meant we got to sleep in REAL BEDS. EXCITING! At some point during the trasition week, we got a call stating the presidential team didn't want anyone over 18- so Amri was uninvited. So Valentine's Day didn't go how we thought, but we did see Melania from a distance and we got official Valentine's cards and fancy collectible FLOTUS coins. We also got scootched around by the Secret Service, so that was interesting.
Michael came up until the weekend after Valentine's, and Brad flew in for a little overlapping visit.
The next week, after proving she was ok to eat and walk and not fall down, Amri was officially discharged- she became an outpatient and no longer had a room in the hospital!
So happy to be officially outpatient!
She was switched to having appointments on Mondays and Thursdays. I decided we'd give her a little bit to settle into non-hospital life and then make a post so everyone who had expressed interest in coming out to visit could prepare.
This lil deer (in the Inn backyard) thinks she's a giraffe.
I started going to weekly fitness classes offered at the Inn, and I signed us up for our first Inn field trip. It was a short trip, just 5 minutes away, to the Strathmore- which is a small historic mansion that has been turned into an art museum. Through a mix up, Amri and I were the only residents on the trip. The only other people on the tour where a handful of Inn employees, so we got to go at a pace set by Amri. It was a good first outing.
This exhibit is about hopes and dreams. There's a bucket for patrons to add thiers.
Amri wrote: See all 50 states- along with their state treasures, steal food from someone's tray at a mall, meet my great grandchildren, grow my hair out to the back of my knees, go to Athens, Greece, write a novel, get all of my poetry and try to get it published, be a psychology professor
She had a lot of nausea the first few days of outpatient, but they got her meds figured out.
Amri crocheted a scarf for one of her favorite transplant nurses.
One of our friends at home had a baby, so Michael went to visit and video chatted with us so we could visit and coochycoo over the phone.
Amri got a hankering for a burger. She was sick of hospital food, and hadn't had much of an appetite, so with this craving, I tried to find a burger place we also have at home.
So then we planned an evening exursion to the Shake Shack in downtown DC.
Amri masks up for public places.
A view from the bottom of the Medical Center subway station, looking up the escalator.
Took the subway in, walked a couple cold and blustery blocks. Amri was sooooo happy to have a greasy little hamburger. It took her over an hour to eat it, but man- she had a joy about eating that she hadn't had in months.
"Pandy"
All done!
There was a lady in the booth behind us on her phone the whole time we were there. At first we didn't notice her, but whoever she was talking to made her start giggling, a perfectly delightful giggle that spilled over to us. Amri and I locked eyes and smiled. A few minutes later the lady went from giggling to side splitting laughter and Amri and I had the hardest time not joining in. We both covered our mouths and sat there silently laugh-shaking and gasping for air while this woman - this firework of happiness- exploded behind us. We literally wiped away tears when she left. It was a delightful meal.
The subway sytem is clean and spacious, so it was weird when we sat on a bench to wait for the train and some random man came and stood reaaaaally close to us. When I looked up, he saddled up right next to Amri and stared down at her. We immediately stood and went to go stand by a different group of people and he muttered some profanity at us. We made sure not to get in a car with him, and watched at each stop. I tried to report the strange behavior, but you have to know the car number the person got in, so no dice.
That week Amri developed a weird sensation in her hands, and sometimes her feet. They would occasionally get tingley, like there were numb or frozen. So to the hospital we went, where it was determined to be a side effect of one her medications.
One afternoon, as we were walking through the Inn lobby, one of the Inn staff surprised Amri by showing her they'd arranged for a marimba! It was in a programming room, and she could come down anytime she felt well and practice!
There's a lot of wildlife on the NIH campus. Prior to 9/11 there wasn't a fence around the campus, but when it went up, it inadvertently trapped a lot of critters- so there's a herd of deer that live in the woods behind the Children's Inn playground. This lovely lady came up to our window one morning.
Rare Disease Day is a global occurrence, at the 3nd of Febraury. NIH happened to be hosting an event on campus so I went while Amri was napping. There were booths for many different organizations that support patients. I picked up a card for one that supports clubs for students with rare diseases on college campuses. There were a lot of lectures for the medical community, and many of the booths were beyond my comprehension. There's also a Lymphedema Day, so maybe in the future our family will get more involved with the patient side of these events.
I was really feeling homesick one night and the therapy dog team happened to be in the lobby at the Inn. I got to love on this fur baby and it really helped me feel better. Missing the little things like sitting on a couch, or giving pats to my own dog. Therapy dogs are such a blessing.
Amri and I took one of the Inn's grocery shuttles and went to the weird mall (it's in the parking lot of a grocery store and the mall has a full sized Target and Costco INSIDE it, among other mall stores.) We went to the fabric store (weird mall!) and I got some fabric to start a project. When we first arrived at the Inn in January, I asked if they had a sewing machine in the craft room and they didn't, so they added it to their wishlist and someone gifted one that same week! Because I had asked for it, I got to use it first. So I got decided I would make Hava a robe similar to the one Amri got for her birthday.
My dad has severe COPD and was needing to change his living conditions, so with Michael working full time and keeping Hava snug and secure, and me taking care of Amri- we were trying to help him make arrangements.
Somewhere in there Michael called me and had to tell me my hermit crab died. We'd had that crab for TEN years. He was originally given to Hava- but she was two, so the crab was mine and I had become about as attached as one can be to a sea shell with legs.
Emmitt, our 14 year old black lab, died in the fall, the day before Amri and I went to NIH for her fertility preservation. I mourned his loss mostly in random intervals on the bathmat in our hotel room, not really having the mental space for it until we got home.
And my grandfather passed away in January, after Amri and I were at NIH- but due to issues with his estate, his funeral had to be delayed. My mom is the executor and trying to grieve and process the leftovers of loved one's life is not an easy process. I wanted to be home to help her.
So I definitely understand why Michael thought I'd be more upset when he called to tell me about the hermit crab. Honestly, I thought I would be, too. But of all the living creatures I love, he was definitely at the bottom of the list. So I didn't get upset. Maybe that's how it will be, or maybe I'll get home and go to clean out his elaborate antique birdcage and then I'll feel sad. Who knows.
One afternoon at the very end of February, we were hanging out in our room at the Inn, each laying in our own bed. Amri got up from her bed and as she walked by mine to get to the bathroom, she sort of dramatically tossed herself sideways onto the foot of my bed, like an old Hollywood starlet onto a fainting couch. It was weird.
"Are you ok?" I asked.
"Yeah. I just need to lean on this wall" she said.
Realizing something was off I walked around to face her. "You're not leaning on the wall. You're on my bed."
She was really confused. Apparently she stood and as she walked everything went woozy. She didn't lose consciousness. So I called the hospital and they told me to pack an overnight bag and head over. We can't have transplant patients out there falling down all over the place. A campus police officer drove us up the hill. We were put in a little room on her transplant floor. "Overnight" became 4 days, as they ran a million tests. Physically she felt fine, but she was very unhappy about being inpatient again.
The second day we were in, a Corona virus sign appeared in the hallway, asking patients to put on a mask of they have a fever or a cough, and also to let their team know if they'd been to China or Italy recently.
My brother flew to Texas for my grandfather's funeral. Michael video called, and I was able to watch the service from Amri's hospital room. And my cousins sent me a link to the tribute video. I wish I could have been there to support my family and visit with my brother, but technology sure is handy.
The next day, when I walked back to the Inn to shower, there was a sign on our door telling us to prepare for delayed entry to the hospital the next morning. The note had a similar tone as when the FLOTUS came, so I texted Michael and told him I felt like Trump was coming to visit. I googled it and the internet cofirmed he would be coming to talk to NIH for the first time... in the time window we were expecting to get discharged again. The next day we sat in our room forever. Our hospital window faced the Children's Inn and I could see bored security guards standing in the street. The campus is huge, but for some reason they came through the patient entrance. I was given a link so I could watch the presidential meeting live. I opted to finish my book instead.
When we first arrived in January, we stayed at a hotel just outside the edge of the NIH campus. There were bombings in Iraq and the military hospital across the street from NIH went on high security and closed all but one entrance. It backed the traffic up in an absurd way- we sat in it forever trying to get to NIH that day. I felt like my fragile daughter and I were way too close to any possible action.
So, no. In that moment, I did not want to watch the president talk to one of the heads of the hospital we were staying in...about a strange new virus...when we were there to have my daughter's immune system treated.
During those 4 days, they ran all sorts of tests to figure out what caused her woozy spell. One guess was dehydration and they pumped her full of fluids. Several times they did this blood pressure test where they take her BP laying down and then sitting and then standing. Laying down and sitting are fairly low and then when she stands it sky rockets (tachycardia), which makes her dizzy. The final decision was that it's caused by her immunosuppressing medication. But we did point out that the lightheadedness when standing is what led to her GATA2 diagnosis in the first place, so it's kind of normal for her- although she rarely realizes she's thirsty on her own, so dehydration could always have been a player.
Anyway, they let her out of the hospital with the promise that she drink a minimum of 64oz a day, and the belief that taking her off the immunosuppressant (at 6 months post transplant) will minimize the occassional wooziness. And when she's down to fewer daily meds, there's a medication people with tachycardia can take.
So it was back to the Inn! Our AC was on the fritz, and to fix it they'd have to get into the ceiling, so we moved! To the room next door. We were pretty happy about that- a working AC and the same lovely view of the woods and the occasional NIH deer that would wander into view.
On this trip we lived in 6 places!
Downtown Bethesda hotel room
Room 1 at Children's Inn
Hospital Room 1
Hospital Room 2
Hospital Room 3
Room 2 at Children's Inn
She couldn't decide if she was hot or cold. This was her solution.
Well the next chapter starts with Spring Break (second week of March), so now I'll go make that post!
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