I posted fairly frequently on Facebook about our experiences beginning on the second day of Shawn’s first admission. These are most of those posts, from mid September 2015 to mid January 2016. They are mostly unedited (some names and details have been removed.)

September 9, 2015

View from my window at CHOP. We’re not yet sure what’s going on with Shawn but I’m glad our pediatrician sent him here to find out. I love every single person I’ve met here. Posting this while he’s sleeping and I’m waiting for the birthday girl to arrive. One moment of calm.

September 12, 2015

An update on Shawn and our four days in the hospital:

He’s ok in terms of anything urgently wrong. Our pediatrician suspected a neurological cause of his symptoms but the array of tests we had mostly ruled that out. We still don’t know exactly what IS wrong but we’ll continue to pursue it on an outpatient basis, with the reassurance that all the really scary stuff has been ruled out.

Every single member of the staff at the Children’s Hospital of Philadelphia is top notch. This includes the maintenance staff, housekeeping, nurses, doctors, technicians, parking attendants, volunteers, medical students, and every other person we encountered. I can’t say enough about their professionalism and, maybe more importantly, their niceness and kindness in the presence of confused and concerned parents. If you do this type of work, please know that we on the other side notice and appreciate it.

Doctors and medical staff don’t like to say that they don’t know what’s wrong. Parents don’t like that either. Parents are ok with “we don’t know” as long as “we don’t know” doesn’t include gas-lighting. Mentioning the words “Lyme Disease” even when the doctors and medical staff brought it up first can exacerbate this.

When you spend four days on a pediatric floor of one of the top children’s hospitals in the world, you have the opportunity to meet a lot of different people. This becomes more true after the first two days when you finally venture out of your kid’s room because you’re hungry and/or cold. This moment becomes one of gratitude and sadness as you meet parents who’s kids will not likely walk or talk or live very long. Sometimes you share a room with those kids.

Those of us who are privileged (that word, it’s become an anthem lately, it does mean something) enough to have a salaried job in which we can take days off work and get paid anyway (even if your employer probably isn’t thrilled with you being off during a very busy time in which vacation time is not normally allowed), and have someone to watch our other child(ren) while we’re in the hospital with them do not deal with this stuff in the same way as those who are not in such privileged position. Those people do not love their children any less. Sometimes you share a room with their kids.

When we were told that we’d be rooming with a baby who might cry and make noise and keep us awake, I said, compassionately, “that’s ok, I don’t mind crying kids as long as I don’t have to DO anything for them.” I said that before I became aware that I might not be ALLOWED to do anything for them. That I might have to sit there and listen to them cry, waiting for someone else to pick them up and comfort them, and that person wasn’t allowed to be me, even though my own kid was sleeping, because I didn’t have the right clearance. When I retire, I want to volunteer to be a “bedside buddy” who volunteers to sit with and play with and talk to babies, toddlers, and kids who otherwise don’t have anyone else there with them at various times of the day. This week was especially lacking in bedside buddies because most of the high school and college students who aspire to med school and nursing school and want to get volunteer hours toward those goals were back at school.

We’re glad to be home.

 

September 14, 2015

Back at CHOP. New symptoms, more tests, but I’m really getting the hang of this. I know where to park and eat and where they keep the sheets in the ER and how to use the play station to charge my phone. Much different than last week.

 

September 15, 2015

After more than a year of trying to sell my house, I just signed an agreement of sale contract on a hospital computer while my son is recovering from the sedation used for the latest round of tests. Closing will be October 30th. I think this all falls into the sometimes life is strange category.

And finally a diagnosis for Shawn. Pseudotumor cerebri, a.k.a. idiopathic intracranial hypertension. It took a while to get here, a month of symptoms, two hospitalizations, and about 5 specialists, but we finally did. The lumbar puncture relieved some of the symptoms like the double vision already. He’ll be on medication for a short term and possible more lumbar punctures and then should be fine, no long term effects. Thanks for everyone’s nice words and thoughts. We really appreciate it.

 

September 16, 2015

Two more pictures from our second round at CHOP:

-The first is a sunset picture was taken last night. This was one of about ten pictures that me and Lilly and Bill took (she and Bill visited) and neither of us got a clean shot of this beautiful sunset through the glass with the crescent moon between the buildings. There was too much glare and reflection from the room. Shawn came over to the window to look when Bill, Lilly, and I encouraged him to do so. He had been burying his head in the bed, refusing to do much of anything, hating every second of being at the hospital. When he did finally come over he said “wowww! That’s really pretty! I’m glad we’re here or else we wouldn’t be able to see that.” I didn’t initially want to post this picture because it isn’t clean, you can see our hospital room reflected in it. But nothing about the past month has been clean, especially the times in the hospital.

– The second is a picture of Maddie. Maddie is a dog owned by a woman who’s name I forget and who is learning to be a therapy dog for kids at the hospital. I also forget the names of most doctors, nurses, and volunteers that I met in the past week. Maddie is owned by an independent volunteer and is in training to be a therapy dog. Maddie and her person came in to our room this morning. Shawn loves dogs but resisted allowing her into his room. He pushed them both out of the room and then a few minutes later begged me to bring them back. I walked up and down the hall trying to find them. I finally did. They came back. He then threw ketchup packets at them and said that he only wanted to see the dog, not the mean woman with her. He hid in the bathroom. They left again. The volunteer had given him a card with Maddie’s picture on it. He ripped it up and threw it on the floor. Then he asked me to get another card. I tracked her down again. She said I was a very persistent mom. I got another card. Shawn took it and said he wanted to see the dog but not the woman. She couldn’t do that so she stood in the corner and let Maddie climb into the bed with Shawn. He smiled at her. They licked each other. They enjoyed each other for about 60 seconds. I stood in the other corner, on hold with the pediatric neuro-ophthalmology department, trying to schedule an outpatient appointment with a particular doctor, and finding that it’s extraordinarily difficult to get the required “3-4 week follow up” with my current outpatient status than my previous inpatient status, glancing at Shawn trying to smile at this dog, forgetting that his owner is wearing a CHOP badge, not reading well enough to understand that it says “volunteer” and that she can’t possibly stick him with anything, make him swallow something disgusting, shine a painfully bright light into his eyes, give him drugs that cause a violent and unexpected reaction that involves security holding him down, or wake him up when he’s sleeping to take his blood or vital signs. I’m going to try to get him to be able to meet Maddie in another environment. Maybe this was a good learning experience for Maddie. Or maybe Shawn will just convince me to let him get a dog. Then his dog can be what the child-life specialist had convinced me to be (CHOP has such people), the one one who doesn’t hold him down and instead hangs back watching while others make him uncomfortable, becoming the unconditional comforting presence, no matter what else is happening.

September 26, 2015

My soup break thoughts during Shawn’s MRI:

– The more mysterious the combination of symptoms, the more adjectives there are in the doctors’ titles.

– For about 45 minutes this morning, Shawn found the pope’s arrival coverage more interesting than Nickelodeon.

– I think there are more police officers and national guard troops here than there are nurses and doctors.

– Hospital cafeterias should sell wine.

 

September 29, 2015

When we left the hospital after the second round, diagnosis in hand, a clean plan for recovery, I wrote a list of observations that seemed rather poignant and uplifting. I stand by those comments about hope and suffering and class and privilege and love. But here’s a few more less profound observations on the night of our third discharge with no diagnosis and a plan to return to the hospital when the symptoms return, or two weeks, whichever comes first. It will be the symptoms.

– The hospital’s guest wireless network considers a search for the nearest wine store to be “inappropriate content”. I disagree.

– CHOP was above and beyond ready for the Popacolypse/Popalooza/Popepurri. When Shawn’s symptoms worsened overnight on Thursday, the neurologist asked if I could bring him back to CHOP on Friday late morning. I said, “I don’t know, CAN we?” I had been planning to get out of town in the other direction, visiting some running friends in Northeast Pennsylvania on Saturday and had not paid a bit of attention to the road closure schedule for the weekend. The doctor checked for us and said, “just try to be here before 4PM when the major roads start closing. We came in through the Emergency Department at the direction of the Neurology Department on Friday. I asked our first nurse, “are you expecting to be really busy or really slow this weekend?” She said “we don’t know, but it will be one or the other, nothing in the middle.”

– While waiting to be admitted (5 hours into what would ultimately become a 9 hour wait, better than our 11 hours last time), I overheard one of the doctors discussing another patient and saying “it’s a tough call because if we admit tonight, we’re likely admitting until at least Monday.” I have no idea if that kid got admitted or not.

– My “these people walk on water” impression that I’ve had during our previous two admissions about the staff in general at CHOP got crushed a few times during the process. It’s confusing, disorienting, exhausting, and you talk to no less than 100 people, 30+ of whom are medical professionals, all trying to coordinate the care, diagnosis, and treatment of something that doesn’t make much sense to anyone. The other 70 are trying to clean your room, sell you coffee, make sure you belong there (during Popapalooza, no less) or entertain your kid. And that’s not even counting the other kids and families. At times, it got over-the-top frustrating. I still left feeling like these people walk on water.

– During our three admissions, I was asked at least ten times if I work there. When I said no, every one of these people told me that I look just like a resident physician at the hospital. This was true when I went in my work/professional clothes, shorts/t-shirt, hair up, hair down, whatever. I was asked this by nurses, technicians, custodians, you name it. Finally I found someone who told me the name of the person I look like. I asked if she could stop by if she has a chance. She didn’t. I guess I have a twin sister out there.

– Parents/guardians at CHOP wear a blue wristband. With this wristband, you can come and go as you please, even during Popapolooza, and people are generally really nice to you (I started to write “extra nice” but didn’t because I think people there are really nice to everyone). I watched blue wristband people really closely this time. I envied the women in running clothes with their blue wrist bands, on the elevator and obviously either going or coming back from running. Why hadn’t I brought running clothes? Next time I’ll bring running clothes. On Friday we were not admitted to the neurology floor as I’d expected but to the PICU, the pediatric intensive care unit. Machines beep all night and nurses poke kids every hour on the PICU floor. When we entered our room and I saw our roommate and his family, I was annoyed. We didn’t belong here. This kid has a tube in his throat. We don’t. Why are we here? It’s 1AM, I need to sleep. Shawn needs to sleep. I glanced at the kids’ parents. The odd thing about all of this is that I never saw a parent cry. Not once. I still think that’s odd. I had dinner with that kid’s father on Saturday night for about three minutes in the parent lounge before I was called back. We talked about the pope. His mother and I said goodbye on Sunday. We said “good luck” to each other. Today, another family was getting on the elevator at the same time as a family was getting off. There was some misunderstanding about who was coming and going and they snapped at each other. I talked to the people still on the elevator with me. I said, “everyone is pretty stressed here.” They agreed with that. It’s a mark of progress in my life that I don’t think I snapped at a single person. Well maybe the attending physician on Friday night and I apologized for it the next day.

– I thought we were giving up a ton of stuff this weekend. I really wanted to get together with those running friends. We still owed Lilly a family birthday meal at Friendly’s. The inspection on our house that we’re about to close on was on Sunday and Bill now had to prep for it solo. And geez, the lunar eclipse was on Sunday. Our PICU room did have a window but it faced a concrete wall. No eclipse for me. No blood moon. And I haven’t run since Thursday. But after seeing the eclipse afterall, meeting June the therapy dog, playing the guitar/drums/special effects instruments during a music therapy session, and winning not just one but TWO stuffed animals at Medical Terminology Bingo, Shawn declared this the “best weekend ever”. I wondered how many doctors were patients as kids.

OK, sorry, poignant and sappy again but it’s kind of a theme in my life right now. And a special thanks to all who offered to smuggle wine in to me tomorrow night when we thought we were staying til Thursday.

 

October 8, 2015

I may or may not continue with the long Night Of Discharge thoughts posts. This is becoming chronic (aka the “new normal”), and like everything that goes from actute crisis mode to routine life, the drama lessens as you go along. And this was our shortest inpatient stay at less than two full days. That is in part because we (the doctors and me) are figuring out what this IS, at least on the surface – what the important symptoms are, how to recognize them, how to treat the symptoms to keep him comfortable while every test under the sun is run. What we don’t know is WHY it’s happening. We revisited the neurosurgery option today in terms of vague discussion of what might be in the future (or not) of a shunt to drain the craniospinal fluid but no one wants to do that now, while we know that SOMETHING is causing it, we just don’t know exactly what yet.

So this afternoon I commented on my run today, my first run from the hospital. I’ve run tens of thousands of miles in and around Philadelphia over the 20 years that I’ve lived here but today I ran on roads that I’ve never run on before and saw things that I’ve never seen before. I’ve never run on the new SRT “concrete boardwalk” plunked in the middle of the Schuylkill River connecting University City to the largest completely urban park in the U.S. I spent some of this run trying to calculate how many total miles you can now run without crossing any streets with cars while being fully within city borders but I lost track. I’ll figure it out later.

I posted a second picture on that thread of Franklin Field. If you follow track and field history or Philadelphia history at all, you know Franklin Field. I wrote “here’s another one of Franklin Field on my way home.” Home? I wrote the word home? Really? I wasn’t going home. I was going back to the hospital, prepared to shower and be ready for the call that the tests were done by 2:15PM, the earliest that he’d be done. In reality he wasn’t done until about 4PM. I posted that second picture while Shawn was starting a temporary violent episode coming out of general anesthesia (they call it a paradoxical reaction to a drug intended to calm him). I recognized the signs. The nurses seemed to understand it, too. They said, “this must be hard to watch.” I told them that this is the fourth time that I’ve seen this and suggested that they get some Benedryl in his I.V. and call some friends (security, nurses, techs, doctors, whoever). I then pulled up that picture on my phone and posted it while Shawn punched them (he’d already done the same to me when I said hi), bit them, screamed at them, pulled the nearby computer mouse and keyboard and threw them across the room, and tried to pull out his IV. I remembered the words of one of the Child Life Specialists who told me early in this process to not be one of the people holding him down. Let the nurses, doctors, techs, and security guards do that. They are trained to do so without hurting him, let him hate them, you will be the constant comforting presence for him. The anesthesiologists had also told me that he wouldn’t remember anything about these crazy reactions following sedation or general anesthesia. So I posted my Blue Wristband Selfie of Franklin Field. Thirty minutes later (after the Benedryl) we were back in our room happily eating Goldfish Crackers and waiting for our discharge papers.

When we visited on Pope Weekend it was as slow as a major hospital can be. Twenty something rooms filled by maybe 4 or 5 families (probably more but that’s how it seemed). Our day nurse, MB, remembered us from our previous visit. We talked for a long time about her experiences as a nurse at that hospital for over 30 years (because I asked a ton of questions). Last night there were almost 30 patients for those 18 rooms and most of us were doubled up in rooms intended to be singles. MB saw us come in and came over to tell us how sorry she was that she wasn’t allowed to be Shawn’s nurse this time. Crap, I have nurses that know us which means that we are fixtures here and this is our new normal. But wow, I have nurses that know us and want to be with us.

In the past we’ve had roommates who were babies, toddlers, preschoolers, or young elementary age kids. This time our roommate was 16 years old. He was a fantastic roommate. When I couldn’t figure out what our room and bed number was to order food for Shawn, he heard me and called over the curtain to tell me. Shawn heard his TV with a show about ghosts and wanted to watch it too. So I asked him what channel it was. He told me. Shawn called Lilly and told her that HE is now the roommate because the other person is older than him, not really a kid but not really an adult. Indeed, that’s a teenager. Shawn adores teenage boys. I met that kid’s parents today after my run. Another family that I will wonder about but probably have no idea what happens to them.

The doctor who discharged us today looked almost apologetic. She assured me that the best minds in the world are thinking about Shawn and trying to figure out what is causing this. She gave me our current discharge papers, Shawn’s “return to school” note, my FMLA paperwork (time to get that started).

I want to try to figure out how to get a movement of Blue Wristband Selfies going but I have not a clue about how to start a social media movement. On our way literally out the door (just looking for security to validate our parking) I saw a guy wearing a Haddon Holiday Heart 5K t-shirt. At one point that race was my 5K PR race and it was the first race that I ever won an age group award, the day after my 40th birthday on what would become an amazing year of running for me. I almost said something to him but I couldn’t quite figure out what to say, even though I was also wearing running shoes and one of my Broad Street Run t-shirts and we were both wearing Blue Wristbands. It just seems like maybe we could organize. Run together. Post on Facebook together. Talk about our kids and our extraordinary momentary life circumstances together. I’ve spend 14 out of the last 30 days with Blue Wristband People but I have no idea how to find them. While I was running I looked for them. I found none.

And since so many of you have written to me privately and sometimes seemed hesitant to do so because you didn’t want to bother us or you didn’t quite know what to say, I’ll add that I absolutely appreciate all of it.

 

October 12, 2015

Our 5th CHOP Emergency Department trip and I’ve made some progress on tracking down my twin. The woman doing registration told me again that I look just like one of the physicians here and that my twin is working in the ED today and went off to get her. I was so excited to finally meet her but it turns out that she had just left. But now I have her name and looked up her bio which has a picture. I can see why people always ask me if I work here. They say that she is the same height and has similar mannerisms to me, too.

 

October 13, 2015

Fifth CHOP discharge: I think I’ve figured out how to avoid frustration. Here it is: When anyone here tells me that a thing will happen, expect one of the following to be true: (1) That thing will happen; (2) The opposite of that thing will happen; (3) Something completely different will happen; (4) Nothing will happen. And an unrelated lesson: IV caffeine is a thing. In this case it’s a thing used in combination with IV fluids to help manage a post LP headache but I can imagine other practical uses for it.

 

October 16, 2015

Best line of the day: “Mommy, does a cat scan involve real cats?”

 

October 19, 2015

There is no way to adequately express my experiences and frustration over the last 4 days here at the hospital with Shawn this time and I’m not all that interested in trying since still we are still in the middle of it. So I’ll say this – running helps but doesn’t turn off your mind all the way, just dulls it. Speed work on the other hand, and especially the really fast stuff, makes it impossible to focus on anything else for those seconds or minutes. So I’ve decided to train for the mile.

 

October 21, 2015

Since I’ve decided to learn how to train for and race the mile, I needed a baseline starting point. After rounds at 11:00 today, they told me that nothing else would happen for at least two hours. One of Shawn’s doctors commented on my race t-shirts that I’ve been living in here and encouraged me to start running every day that I can (which, she said, should be most days.) Armed with permission to not feel guilty about leaving or worried about missing something important (I actually carry my phone while running now), I headed to the Franklin Field track to discover that, despite what I’ve read online, it’s not actually open to the public from 11-2 on weekdays, those are the open hours for Penn employees and students. Even my CHOP Blue Wrist Band didn’t help, although the kind attendant called her manager to ask. So I headed to Kelly Drive and ran a mile time trial on a warm sunny fall day, having done no speed work or racing since March and relatively low mileage. Needless to say my mile time today was slower than my last 5K race pace but at least it still started with a 6 (barely). The starting point has been set. Now it’s time to get to work.

 

October 23, 2015

People pay big money for these views. Oh wait…

 

October 25, 2015

An update from me. We have been here at CHOP for 10 days this time. As recently as yesterday we were expecting to be discharged today. But things rarely go as planned with this and change very quickly. He got much worse overnight and we’re changing plans again. I think that at this point we are staying until we figure it out. Shawn’s dad and I have created a plan that will maximize each our days at work and with our other child, at least through next week. After that, shrug, we’ll figure it out then. Unpaid leave starts for both of us after this week.

So a couple comments from me:

– My iPhone autocorrect needs to catch up. When I type acidotic I do not mean acidification and when I type Diamox I did not intend to type diamond.

– I ran my first 7 day run since my Big Week 120 miles in July. This week was only 35 miles but I ran every day. Oddly, this was also during our first 7+ day admission. My mileage was low and some runs were only three miles but I ran every day, somehow. That’s an accomplishment. “Run every day” is one of my mantras at the moment. Sometimes I sit in the bathroom or stand in an elevator or sit on my bed listening to Shawn cry and just think, “run every day, run every day, run every day.” I had my doubts about today but it worked out and I took the opportunity when it came.

– My most long term friend in Philadelphia and I finally got together on/near South Street to celebrate our 20 year friend anniversary that we’ve been trying to do since August (although we didn’t acknowledge it as such but it did finally happen.) It’s also convenient at the moment to have a close friend who teaches at a local medical school who knows me as well as she does and could help put into perspective a lot of what I’ve been dealing with here at the hospital, put me in touch with people here who can help, and just listen to me vent about it and discuss it all in that academic/personal way that she and I have always done since we were 23 year old grad students.

 

October 29, 2015

I admit to some ageism here and when it comes to most of his actual medical care, all the nurses here are fantastic. But when it comes to administrative and certain other issues, I want nurses over the age of 50. They seem to know best how to get shit done. Plus nurses of any age with military experience, them too.

October 30, 2015

Things that have happened in the past 24 hours:

– A nurse told me she was envious of my legs and asked about my running.

– Shawn had “minor” brain surgery (which is, of course, never minor to us parents.)

– We finally closed on the house. I am no longer a homeowner. Yay.

– I worked a full eight hours. In a row.

– The kid in the room next to Shawn’s died.

– I’m heading back to the hospital now.

– I swear, there’s a book to be written in here somewhere.

 

October 31, 2015

Happy to be able to be at home for a few hours to spend time with Lilly and some friends and do some trick-or-treating with her. I carried Shawn’s bucket so he could get his candy, too. Lilly and I took turns explaining to people that he was sick and couldn’t go out (sometimes we mentioned the hospital, sometimes we didn’t). I promised Shawn’s dad that I’d be back at the hospital by 8 since he needs to work early in the morning so Bill and Lilly continued on while I walked back with his ninja turtle basket. On the way, a family with two preschoolers were sitting on their porch handing out candy and the kids called out to me to come over. I can’t say no to the kids so I did and explained that I am collecting candy for my sick son and had been with his sister and step father until just a moment ago but had to go home and thanked the kids for the candy for him, and laughing as I told the parents, “I’m really not trick-or-treating by myself!” The dad laughed too and added, “yeah you could have at least worn a costume!” Indeed.

 

November 1, 2015

 Every family has rules and expectations and just a general sense of normalcy and how things run from day to day. A routine that although might get changed or up-heaved every now and then remains generally consistent from one day to the next, one week to the next. The way you get meals, when you eat meals, how you bathe, when you brush your teeth, where you park your car, what time you get up, go to bed, go to work/school, do activities/hobbies, how major decisions are made and who makes them. Now imagine that those micro things change every 12 hours and then every week or two the ENTIRE game changes on a macro level and you have to adjust to a whole new set of micro changes. That has been our lives for the last two months. And it also explains why I did hill repeats today. Hill repeats are familiar. They do not change. They always suck. They’re also highly effective in improving strength and speed.

 

November 2, 2015

The hospital had their most recent “Shawn Meeting”, in which all the doctors who have seen him in the past two months get together and try to figure out what’s going on and what’s next. This group includes neurology, neurosurgery, neuro-oncology, neuro-opthamology, opthamology, infectious disease, oncology, rheumatology, and probably a couple others that I’ve forgotten plus the attending physician from the intensive care unit where we’ve been for the past week and will remain for at least another week and a half. The ICU doctor called Shawn “the most popular kid in the hospital at the moment” in the sense that most of the doctors here have heard about him. In addition to those doctors discussing the case, we’ve also seen physical therapists, occupational therapists, psychologists, social workers, and a wide variety of child life specialists and volunteers.

At this point, they do not know. Not only do they not know, they have said that none of them have ever seen this combination of symptoms in a patient that did not have a cause that they could figure out. Never. Not once for any of this wide range of doctors. They will keep him here for another 10 or so days while they run more tests to rule out as much as they can. Then they will place a permanent drainage shunt from his brain and he can go home and back to his life while they continue to try to figure it out on an outpatient basis. They encouraged us to seek a second opinion but not from another children’s hospital because he said that unless we lucked out and found that one doctor who might have had a similar case at some point in their career (and even then, who knows the outcome) it won’t be any different from here. So he recommended that I contact the NIH’s Undiagnosed Disease Network. When I asked if he’d referred parents there before, he said no because this hospital usually IS the second opinion. But he’s heard positive things about it.

So that’s where we’re at. And I write these long posts because I know that a lot of people are following and it’s the easiest way for me to update everyone at the same time. Since that discussion around 2:45PM today, we have all become oddly positive. We don’t have a diagnosis. We have stumped some of the best doctors in the world. But we have a plan and Shawn is comfortable and happy at the moment.

 

November 2, 2015

 One more from me.

These two pictures are:

(1) Shawn had a session today with the physical therapist and occupational therapist. As with everyone here with a CHOP badge, he screamed his way through it. But he’s been laying in the same position since the surgery on Friday and he needs to move. After the session, the OT said “I can bring him some Legos, they are good since it forces him to sit up and use both hands.” I pointed to this Lego boat and told him that Shawn build it this morning laying down with one hand. “Impressive” was his response.

(2) I asked Shawn for the millionth time what games/videos/books he would like. Usually he says nothing. Today he said “chess”. When the child life person came around I asked her for a chess board and pieces. She came back saying she couldn’t find one. She came back five hours later with a wooden chess board. Wood toys are not allowed here since they can’t be sanitized. I asked where she found it. She said they often get donated toys that for whatever reason (wood or otherwise) can’t be used on the floors. So they keep them for long term stay kids or special requests. Shawn is both and it means that he can keep it. So I’m thankful to whoever donated it, probably not knowing that wooden toys can’t be shared. And yes, he beat me. As usual.

 

November 6, 2015

Last Friday I posted a list of things that had happened in the past 24 hours. I’ll do the same this week. I suppose maybe this will replace the posts I used to make on the nights of our previous five discharges. We’re on our sixth admission now but have been here for 3 weeks this time, and discharge is not imminent. So here goes, things that have happened in the last 24 hours:

– We saw Nestle, our lost cat. But we don’t think anymore that he’s exactly lost. We think he’s hanging out with his new feral cat friends and being fed by the crazy cat lady up the street, the one who lives in the nice house next to the semi abandoned house where the cats appear to live. Nestle seems to have found a home there. Nestle was born a feral cat. I’ve never been convinced that he actually wanted to live inside with us. Maybe he’s happy now. I just hope that if the cat lady stops feeding him or if it gets too cold in the winter that he knows how to find his way back to us.

– In the past few weeks, I’ve received many many offers of help from friends, family, coworkers, and neighbors. Today I received a gift from my coworkers that left me speechless. It wasn’t just the dollar amount that they collectively contributed to help offset my unpaid leave to be with Shawn at the hospital, but that I was told that several of them had offered to transfer their vacation time to me so that I could continue paid leave. That’s not administratively possible, but what a concept. I would gladly do that for someone else in reverse circumstances, especially since we all get gobs of vacation time that we have no hope of using. That should be a thing.

– This one goes back 36 hours but while I was home from Tuesday night through Friday night, I actually got up at 3AM to drive 20 minutes in order to run just 8 miles and drive home. I realize that I could have run an extra 40-60 minutes in the time it took me to do all that and logged an extra 5-7 miles in the process but the catch is that if I hadn’t done this, I would have probably logged zero miles in that time. Special thanks to the people who met me before 5am each day to get this done. Because this needs to get done.

– Our new-to-us night nurse spent about an hour tonight talking to me about our experiences here. It turns out that he had been a patient here when he was 12 with a diagnosis that Shawn had at one point (but has since been revoked.) He and talked about the inconsistencies and frustrations of this place as a patient, a parent, and a nurse. He also told me about kids who have been in this exact room who have had undiagnosed and/or rare diseases, what happened to those kids, and how impressed he was that I (as a self-described “difficult parent”) has managed to get Shawn’s overnight neuro checks down to every 2 hours instead of every 1 hour ( which seem as much a prudent medical decision as a CYA decision at this point, a week after his surgery.) This was one of the best hour of conversation, all around, that I’ve had at this hospital over the last two months. Shawn even took notice of the fact that this person with a CHOP medical badge had been a patient with a similar condition as a child. He will be here for the next couple nights. I’m happy about that.

 

November 9, 2015

Another Big Test Day (3+ hours under general anesthesia) for Shawn = Mommy gets to run the Art Museum Loop. 12.5 miles including the 2-ish mile spurt from the hospital. We’re not expecting much new information from the tests, just another repeat of what’s been done several times already to see if anything has changed. My run was great. Easy paced and reflective, not specifically about what’s going on with Shawn but how running on that loop is one of those things I can track a lot of my adult life with. I lived a half mile from the art museum when I started running again 17 years ago and have run and raced there hundreds of times. Now that I don’t live here anymore (well I kinda have for these past two months) but still run there several times a year it’s both nostalgic and current. So that’s cool.

 

November 12, 2015

On the night that was supposed to be our sixth and most recent discharge, the one that started four weeks ago tonight:

– We’ve been living in the Pediatric Intensive Care Unit for about two and a half weeks now. We also spent most of Pope Weekend in the PICU. The PICU takes some getting used to. You live in a fishbowl. The nurses have to monitor the kids really intensively (hence the name of the unit).

– Every now and then a medevac helicopter lands on the roof above us. It’s loud. It’s dramatic. If it’s approaching from the south, I can see it hovering and lowering right above our window. It’s not terribly disruptive though. Overnight, I tend to sleep right thought it.

– When I have been there in my work clothes, people assume that I work there. They usually assume that I’m a doctor, and not just because my doppelganger is an ED doc there. Today my Blue Wrist Band had slid under my shirt when I went to the cafeteria and a frazzled parent stopped me and asked me if I could tell her how to get to some specific office. Sorry, I have no idea, but the info desk is right over there, they can help. Only later did I realize that she didn’t know that I was a parent like her.

– On Tuesday afternoon I went for a run while Shawn was happily playing games on his iPod and watching TV. When I got back, he asked me “What was that alarm that went off and why was everyone running down the hall? That was really scary. And there was a balloon in someone’s way.” That was a code blue. Kids die here. On a regular basis. Since this has become our home, we’ve experienced at least two deaths that we’ve been around to witness. I think that there are some sounds that are universal and although there are probably a million variations on this one, the sound that a mother makes at the moment that her child dies is probably somewhat universal, especially when her child is still a kid. I wonder if this is something that previous generations, or non-sanitized populations, experience on a regular basis from a young age. I am 42 years old and this is the first time that I’ve heard this sound.

– This morning while I was at work, Shawn’s dad texted me and told me that he was definitely being discharged. That neurosurgery cleared him and no other groups had a reason to keep him here. We’ll move to outpatient now. I told all my nearby coworkers that my son was being discharged today and drove down to CHOP. When I got there, he was happily finishing his school hour with the hospital teacher who told me that our school district was so easy to deal with compared to the Philadelphia district which rarely returns her calls. Yes, indeed, unequal tax revenue at work.

– His dad and I packed up his room, giddy to go home. Then he threw up. “Just the after effects of yesterday’s anesthesia” the neurosurgeons told us. Plus the narcotic pain medicine that he had a couple hours earlier. Yes, that’s what it is. This will just delay the discharge by an hour or two but no big deal. Then it happened again. And again. And again. “I don’t want to go home” Shawn told us. But we were still hopeful. The psychologist came by and encouraged me to let him know that everything will be fine and if I had any questions or doubts, to call the hospital privately. While I was talking to her, the entire “Shawn team” came back into the room. I excused myself from her and followed them in. Long story short, we’re not leaving. The PICU attending apologized for telling Steve that Shawn was “definitely going home” saying that nothing is ever definite here and that “you should never trust joy on the PICU” and everyone laughed in that it’s-not-really-funny sorta way. He is, however, most likely, leaving the PICU and going back to the neurology floor tonight. That’s good.

– I got home and did the most rational thing I could do. I ran 6 miles with 3 at tempo pace (since I’m still pretending to be training for this mile race). I’ve always wanted to run ANY speed workout with 100% consistent splits and hoped that tonight would finally be that workout. I felt great. But nope – 7:41, 7:40, 7:38. The bonus here is that the second mile wasn’t the slowest and I purposely didn’t run too fast on the last one, hoping to be closer to 7:41 just so I could make this post better.

 

November 13, 2015

We are home. Yesterday I was surprised to not be home. Today I’m surprised to be home. I have a lot more to say but I’ll let the pictures speak for themselves. Although I will mention that Shawn made it to the next round for the NIH Undiagnosed Disease Program so I’ll spend the next week or so collecting every medical record he’s ever had, from my pregnancy to now.

 

November 22, 2015

Although we’ve probably spent more one-one-one time together in the past 2.5 months than we have since my maternity leave when he was a baby, Shawn and I had a “Mommy Shawny” day together, following my “Mommy Lilly” day yesterday. We raced slot cars, ate pizza, said hi to Santa (yes, Santa is already in malls), used the massage chairs (that was one of the “Mommy” parts and included in the Mommy-Lilly day, too) and bought Star Wars shirts. Mommy-Shawny time is way better at the mall than at the hospital, and I don’t even like malls.

 

December 6, 2015

A doctor from the NIH UDP called me this afternoon to follow up with a voice mail that I left late on Friday. I told him that I didn’t expect to hear back until Monday and he said “yeah, sometimes we do things that aren’t scheduled that way. We know that you are have a lot on your plate so what can I do to help make it easier for you?” Wow. I’m impressed.

 

December 10, 2015

December 23, 2015

Shawn, along with other family members, has been slowly getting a minor cold in the last few days. It started with things that are similar to the early symptoms of his still undiagnosed neurological disorder. We knew this would eventually happen – he’d get a cold or a stomach bug and we (well, probably I) would freak out about it. I even had several conversations with his doctors about this exact situation. “You’ll know the difference” they told me. As it became clear that this is just a cold, Shawn said “yeah I’m not CHOP sick or chopsticks or chap stick, just regular sick.” And we are all oddly happy about “regular sick.”

 

December 31, 2015

My numbers for the year:

Total Miles Run: 2,435
Number of runs: 285
Highest mileage week: 120
Lowest mileage week: 8
Number of “0” weeks: 0
Number of injuries: 0
Number of races: 3
Number of days inpatient with Shawn: 45
Number of admissions at CHOP: 6
Shortest stay: 2 days
Longest stay: 29 days
Insurance claims paid: $905,168.39

Lowest yearly mileage since 2011. Lifetime highest mileage week. No zero weeks and no injuries. Not much focus on racing and a fair amount of apathy toward running which had started even before Shawn got sick (or whatever he got.) Huge amount of gratitude for everyone’s help and support.

 

January 4, 2016

Lilly has pneumonia. The doctor said, “it’s not that bad, you can treat it at home.” Well good because I never considered going down to CHOP today. Wrong kid. Although in related news, I guess my children just aren’t going to school this year.

 

January 7, 2016

ER selfies. It’s like those old photo booths. — at Children’s Hospital of Philadelphia.

 

January 8, 2016

This long post will serve the dual purpose of my annual running anniversary post (18 years now, in my adult life) and my observational CHOP discharge post.

– On Friday January 8, 1999, two months after quitting smoking, I began running again when I went to the gym after work with the goal of losing the 10 pounds I’d gained from that effort on top of the 10 pounds I’d gained in general. The treadmill was the only machine at the gym that I knew how to use so I ran a mile. To this day that mile remains among the hardest miles I’ve ever run… all 12 minutes of it. I’ve purposely run every January 8th since then. Some years in great shape, some years the only run I’d done in a month.

– Today, Friday January 8, 2016, Shawn was discharged from CHOP for the 7th time inpatient. This time was more or less a formality to get some tests scheduled more quickly than outpatient and to check for a possible VP shunt malfunction (it isn’t malfunctioning.)

– Both my “running anniversary” and Shawn’s visit to the Emergency Department and the neurology floor were uncharacteristically not nostalgic or emotional in any way.

– Until about 6PM, I wasn’t sure whether we were going home or not. Shawn took a long time to come out of sedation this time and around 4PM, I began to think that this might be the first year that I didn’t run on January 8th. I was fine with that. Things change. Things happen.

– Three things that stuck in my mind that I was thinking about while driving home from CHOP:

1. At rounds this morning, I walked out of his room to the usual group of attending physicians, fellows, residents, medical students, and his nurse. I looked around and said “wow, all new people!” followed by half of them reminding me of when we’d met. Oops. I tried to save face with “well then you all have new hair cuts.” I’ve met hundreds of doctors, nurses, and medical students. But they’ve all probably seen thousands of patients. They all remembered me and Shawn. I remembered some of them. As we were leaving tonight, one nurse talked to us in the elevator and said that she had been looking at Shawn’s chart weekly since we left in November and saw his name on the floor list this morning. She said we both looked very different. Since we were both wearing the exact same clothes we wore much of the time there before and haven’t gotten haircuts, I wish I asked her what she meant. Instead I just said “well it’s been two months.” I’ll ask her next time.

2. Shawn sometimes has over-the-top violent reactions to being at CHOP when he gets anxious. Despite our discussions this week in which he said he’d be ok, last night was among the most violent. He lunged at his primary neurologist with fists flying, he threw over chairs and equipment in the ED and the CT scan room, he punched and kicked me to the point where I had to call in help. I tearfully discussed all my past and present approaches to this problem with an ED doctor we’d worked with in the past who rescued me from a judgmental nurse. Later I threw out one unrehearsed line to Shawn – I told him that the doctors and nurses and hospital employees were just people, too, with kids and parents and brothers and sisters and friends. After that, there was very little violence. Name calling and stubbornness, yes, but not violence.

3. One of the new residents came in after rounds to discuss the procedures that Shawn would have today, discuss the risks, and get my signature on the consent form. Standard stuff that I’ve signed off on many times already. He seemed nervous and uncomfortable bedside. I smiled, nodded, and signed and felt like I was assuring him more than he was assuring me while wondering how old this guy was, thinking I am probably biologically old enough to be his mother. As much as I appreciate that CHOP is a top teaching hospital with nothing but the best, I was slightly relieved when he was tied up with another patient and therefore wouldn’t be doing Shawn’s lumbar puncture under the supervision of the attending and instead it would be the other way around with him observing when he got there with the attending doing the procedure. I got to watch this time. Yay! I love it when they let me be in the room. This half hour was among the most fun I’ve ever had at CHOP. There was a lot of humor in that half hour. I wish there was some sort of outlet that lets doctors, nurses, patients, and parents to just hang out together and joke about this shit. Because that would be fun. It was fun.

4. I ran 4 miles after we got home. I alternated strides and easy the entire way (I guess that’s called HIIT these days). 18 years and counting.

 

January 16, 2016

One minute you’re about to walk out the door, lubed up with Bag Balm for a 16 mile run, next minute you’re driving to CHOP. Ten hours later you’re eating a sandwich to the hypnotic beat of the MRI machine. I was flattered when the anesthesiologist called me a “laid back parent.” Hahahaha, silly doctor, although I guess I’ve gotten better at this.