I guess the vacation from the hospital turned into an internet vacation, too.
But have you ever taken a vacation and thought to yourself, "I could live like this. Everyday. I really really could."? But then you start to wonder if maybe you would eventually take all that sun and sea and loveliness for granted, and find yourself vaguely dissatisfied once again. Just because that's exactly how perverse you have become in your need to whine, every single day. That the umbrella in your cocktail is annoyingly gauche. That the sand from the beach irritates the space between your toes. That the sun is unrelenting and is it really too much to ask for a little cloud cover every few days? And that the chocolate on your pillow every night makes so little sense because haven't you always already brushed your teeth before climbing into bed?
Well, then, this is the post for you!
So I meant to post some sort of update so many times, but it felt like some irritatingly yappy little poodle had taken up residence in my soul, and every time I sat down to write all that came out was so much yap, yap, yap. Shudder.
For instance, when we were preparing to leave the hospital for the Kohl's house, all I could think of was the fact that there was some sort of screw-up with Annika's labs on Thursday. So the resident proposed that she have some of the labs done that morning and the rest (the time-sensitive ones) be done the following morning. And I was going to rail on about the fact that all these years post-transplant I have never had to ask Anni to be poked twice simply because I couldn't get my act together enough to get her to the lab on time, and here we were inpatient
in a hospital with loads of people in blue jackets running around with blood draw supplies and the very lab to run the results in the basement just 6 floors below us, and somehow
they can't work the schedule to avoid two sticks.
But instead I just found our nurse and told her to beg whoever she had to in order to get a phlebotomist up to our room. Soon. And I made a back-up plan to steal a wheelchair and roll her on down to the lab myself to get the labs drawn all at once. All
of them. Two sticks, my ass.
Luckily for all parties involved, plan B did not have to go into effect. But, really, how silly is it to obsess over the number of needle pokes when the big picture is blinking right in front of me: LEAVING HOSPITAL! OFF TO KOHL'S HOUSE! PARTY! WOO HOO!
And don't even get me going on the diplomatic intricacies and persistence involved in getting a lousy packet of Carnation Instant Breakfast (vanilla, please) to the girl who, in the past 6 weeks, lost 8 pounds (or nearly 20% of her body weight, and that's not counting the fluid weight she lost from her highest weight in the PICU).
So we left the hospital and headed for the Kohl's House. We again borrowed the Gwyneth-Paltrow-Mega-Fancy Stroller to use for Annika, still without use of her legs. I had spent the morning hounding our poor nurse to get us discharged, even proposing she start paging (repeatedly) if the hold-up was lack of doctor's signatures on the discharge papers. But, of course, I still needed to get us moved in to the Kohl's House room, make sure we had groceries, and, very most importantly, fill the new prescriptions Annika was leaving on. The filling of the prescriptions can sometimes take some fancy footwork, and I needed all the time I could get to get the job done. What with the little poodle yapping away in my soul, and all.
We got ourselves set up in the Kohl's House in record time, but Annika, unsurprisingly, had no interest whatsoever in accompanying me to Osco to pick up yet more pills to swallow. I bribed her with something or other, and we set off in the cold and biting wind. I wrapped Annika's bony little legs up in a blanket and wrapped a scarf around any skin left bare where hat and coat met, but she still shivered a bit on the way.
We went to the new Osco, and I at least had the grace to be thankful that there was finally a pharmacy closer to the Kohl's House. But, of course, it took some 20 minutes of waiting and fruitless computer-searching and telephone transfers before the pharmacist could confirm that we were actually known to the company listed on our insurance card.
At the end of those long 20 minutes, there was much regret expressed, but sadly the pharmacy didn't stock two of the three medicines and would Monday be soon enough? In blatant defiance of the "Please no cell phones" sign at the counter, I took my phone out and tracked down our long-suffering nurse from that morning to ask the resident to call in a prescription for just enough pills to carry us through the weekend from the hospital pharmacy, with which, unfortunately, our insurance company is not on speaking terms. And which was, also unfortunately, about to close for the weekend.
About this time, Annika awoke from the little snooze she had been taking in the stroller. As was usual, she awoke crying and confused. Kneeling down beside her and hugging her, she clenched her legs and told me that she had to use the toilet. Now. I looked around for a sign and, seeing none, asked the pharmacist if there was a toilet she could use. "No, we don't have any for public use." Again, many regrets and all.
I contemplated making a scene. Shouting at her impassive face, "Oh. OK. So she's made it through two transplants, repeated acute bleeds, a major shunt surgery which may well have not been successful given two subsequent post-op bleeds, 6 weeks in intensive care with an open abdominal wound, 1 month on a ventilator, for a lifetime total of 18 months or so in the hospital, 2 months of those with a machine breathing for her, but you think it's okey-dokey for her to JUST HOLD IT
Maybe making a scene like that would have made me feel better, but instead I just jogged back to the Kohl's House. On the way back I imagined the scene unfolding with my Big Speech (above). Then I imagined that it was my PICU buddy, Angela
, in line behind me. Angela in real life would never roll her eyes at me, but she would have had every right. And then to follow it up with her own Big Speech, ending with a request for me to move it on and let her fill her own prescriptions. And then, because I can never stop once I get going, I imagined the pharmacist herself rolling her eyes at both of us and making her own Big Speech, because the world is oh so full of sadness.
At this point you may be realizing why it's taken me so long to post, and perhaps even thinking that a few more days' time might have been well-advised, Little Miss Woe is Me Sadsack.
Before leaving the hospital, I talked strategy with one of Anni's G.I.s, Dr. Emerick. She proposed scheduling the endoscopy to check out the state of Annika's esophageal varices
for 11 days later, rather than during the next week. Her thinking was simply that Annika needed more of a break from the medical world than just a weekend would provide. If the scope showed more varices, despite the fact that her shunt appeared open on all the imaging, then we would be in for a serious excursion into the world of uncharted medical issues.
"But," I had to ask, "if the scope shows no
varices, would we be able to go home sooner if we went ahead and did it next week?"
"Most likely. Yes."
After that, there wasn't really much question. The Kohl's House is great and all, but it's not home. We scheduled it for the following Tuesday. I knew that if the news was bad, that I might regret not giving Annika one extra week to get back on her feet before pulling her right back into it all. But I was just that desperate to get back home, and I knew she was, too.
Friday night, after all prescriptions had been secured, Jörg and Frankie and my mom arrived. The girls had a lovely reunion, with gentle pats on the head all around and much smiling.
Saturday we had our long-awaited Christmas celebration. Michelle put up a tree in the upstairs lounge, and gave the girls some ornaments to decorate it themselves. We had to put a little chair beside the tree for Annika to do her share sitting down, since there was a more than halfway chance she would topple forward right on into the tree if left on her own feet. After lifting her arms to hang just a few ornaments, Annika was exhausted and we returned her to the sofa, where she supervised me finishing up the task.
Her energy returned in enough time to open presents, albeit with perhaps a bit less gusto than in previous years. Still, it was an altogether satisfying afternoon.
By Sunday it was time for me to get a bit depressed watching her attempt to stand, her legs quivering like a newborn colt's. With enough support under the armpits holding her up, she could move her legs in something that was close to walking, but with a stiff-legged gait that often resulted in crossed feet and collapses. And the crying. Oh, there was an awful lot of crying going on. And none from me, I'll have you know. Annika sobbed over every last little thing. Her milk was too cold. Or too warm. Her feet were too cold. Her socks felt funny. Her sister was touching her too much. Her sheet didn't feel right under her. It was too bright, or not bright enough, in the room.
I suppose that I wanted to take her over to the Kohl's House and have the change of environment work magically to restore my old spunky Annika, with her fight and her humor and her general zestiness. Instead, I had something like a 5-year-old going through menopause on my hands. And it was all totally understandable. Jörg and I know better than anyone else all she has gone through, much of which I have reported here, but really not all
, much as it may seem that way sometimes. If anyone deserves crying fits and hypersensitivity, it's her. But it just wasn't what I was hoping for, and I was starting to feel a bit bleary with it all myself.
And then, of course, I was dreading the scope on Tuesday. Having had two acute bleeds from esophageal varices after an apparently successful distal splenorenal shunt surgery
was just not very encouraging, even though she had not had a bleed in 3 weeks. "This will be our National Geographic Expedition scope," pronounced Dr. Emerick, emphasizing the whole uncharted territory nature of the procedure.
Annika didn't protest heading back to the hospital early that morning, and she even requested that Dr. Emerick make a copy of the pictures of her throat for her. At least then she could see for herself what all the fuss was about. But then when they tried to give her the gas to put her to sleep back in the procedure room, she turned back into my old fireball, fighting and screaming. It broke my heart and gave me hope at the same time.
Dr. Emerick came out to see me much more quickly than she ever had with any of the previous scopes, which should have been my tip-off, even if her huge smile of relief wasn't. "It looks just beautiful in there!" she exclaimed. "They're all gone, total decompression. Well, maybe one that you might
call a Grade One, but nothing of what she had before. It's a sight to behold." And then she offered to remove Annika's staples while she was still asleep, and I remembered to let her know Annika's request that they also remove the tape covering her old JP drain site, as well, when she was under.
And so that was it. Months of stress and worry and unexpected complications, and then they were just...gone.
Later that afternoon I called around to give the news, and I was bursting with it, once it finally dawned on me that we could go home. That it was finally finished.
By that time, the poodle in my soul was finally silenced and I probably could have written a very lovely and uplifting post, except for the fact that I was too busy packing and snuggling with my two girls who didn't want me out of a 6-inch radius at any point during the day or night.
So a few days later I called Angela to check up on how she and Brad and Lauren were doing, and to give her our news, as well. Talking to Angela again, I realized how surreal all this was. That just a few weeks ago we were waving at one another through glass doors, watching each other's kids laying in beds in rooms crammed with medical equipment. And now we were going home with Annika, and they had been forced to arrange their own burial plots already to make sure that the space in the earth surrounding Matthew would be reserved for them to share with him someday. It was all happening too fast for the general terms "happy" or "sad" to be large enough categories to capture the feelings. On the one hand, I felt like I should be overjoyed that we were going home far sooner than anyone had anticipated. But it's not as if The Joy just comes over you naturally after such a long time spent in The Land of The-Very-Opposite-of-Joy. And how could there be something like joy when Brad and Angela had just let go of their own Matthew just days ago? How could there be joy, knowing that Annika may have to keep going through shit like this, all her life?
But we all know that there will be joy. That there will come a day when Annika is laughing more than crying. That my posts will once more be posts like those of millions of other moms, full of poop and snot and cuddles and cute stories that are destined to be mostly cute to me, because they are about my own kids, the most lovably entertaining beings on the planet.
So here's to the end of the hospital saga. May its continuation be a long time coming.