All That Turkey Made Her Chubby

We couldn't have been happier to have Molly home in time for Thanksgiving. It made for an even nicer holiday.

Once a week is certainly not an acceptable quantity of posts, so I promise to do a better job. And don't forget, since Erin and I do not coordinate even a little bit, you can always check her CaringBridge site for updates as well.

At any rate, our visiting nurse came to the house on Thursday morning to check in and see how Molly was doing. We're happy to announce that on Thursday Molly weighed in at a whopping six pounds and fifteen ounces. You may recall that was her birth weight? So after three and a half months she is back to where she started. We always joked around that we'd throw a party when she got back up to 6.15, but we just had a big dinner instead. You know, since it was Thanksgiving and all.

The yesterday Molly went to her pediatrician and weighed in at seven pounds two ounces. A healthy increase after a big weekend of eating with the rest of us. She also got some shots, which she was not a huge fan of.

This morning she went to the cardiologist who said her lungs are clear and her heart sounds good. Her incision is healing nicely. Everyone is pretty happy with her progress.

Next step is going to be to change from an NG tube to a G tube. My understanding is that the G tube goes directly into her stomach rather than through her nose and down her throat. I'm sure she'll be happy about that. More to come when I figure out what all this means.

MOLLY IS HOME!

After three weeks, Molly is finally home. She was discharged this afternoon around 3:30. Unfortunately I was unable to get back from Boston in time to bring them home from the hospital, but what a great "welcome home" to have the whole family home again.

Thanks to all of you who have been so caring and supportive of us during the last few weeks (and months). We're very lucky to have such wonderful friends.

You Might Live in a Hospital If – You know your best friend’s name because it’s on his uniform.

Joe works in Environmental Services at CHoP. He was a boxer for nine years and I would guess he was pretty good. He likes the Colts and the Cowboys, “straight down the middle.” I don’t understand it, but I respect it. He hates the Eagles, which is tough to do when you live in Phila – and enough to catapult you to the top of my list any day. We talk about football and PlayStation. He waited in line for three days this week to get PS3. He was the sixteenth person to get a PS3 at the store where he waited. The store only had twenty units. The kid who got unit number six was robbed at gunpoint in the parking lot. Joe and his cousins went out the side door. His biggest complaints were that he could only get one game (they started selling games three days before consoles, so now 800 people have games for a console they couldn’t get because they didn’t sleep outside for three days) and the tax on the console was $56. I told him he should have gone to Delaware where there is no sales tax. He told me his sister lives in Delaware and the store near her was giving away t-shirts. Joe and I agreed we would not wear those t-shirts. That’s like holding up a sign displaying the balance in your checking account as you walk into an ATM vestibule. I asked him if the t-shirt said, “I got a PS3 and didn’t get jacked in the parking lot.” Joe thought that was funny.

He also thought it was funny that I went to the Giants game last weekend in the freezing rain. He thought it was funny when the guy on the Bears ran a missed field goal back 108 yards. He still thinks it’s funny that Peyton is way better than Eli. He opined that, “every family has a frick-up in it.” Joe and I still have some differences to work out.

But Joe is very friendly. The Environmental Services group out numbers most other departments in the hospital and for the most part they don’t say much. When Joe rolls in I am afraid he is going to get in trouble for spending too much time in our room.

Erin says the Environmental Services guy who comes on weekdays is Moses. But her best friend is Walt: He gives us food vouchers for the cafeteria, checks in on Erin on a regular basis, and calls me Mr. Brown even though I have asked him not to. I passed him in a completely different part of the hospital last week, as he was leaving to go home, and he still took the time to stop me and ask how I was doing. Good people.

You Might Live in a Hospital If – The Concept

For almost three weeks we have been essentially living in the Children’s Hospital of Philadelphia. For a week before that we lived at Robert Wood in New Brunswick. For three days at the beginning of October we lived at St. Peter’s in New Brunswick. For the couple days after Molly was born we lived at University Medical Center of Princeton. With the exception of this 18 stint at CHoP, they’ve basically been layovers. But when you spend a full 24 hour period somewhere, you get to think like an insider. When you bring a suitcase, you’re living there.

I have mentioned people, places and things from the various medical institutions throughout the existence of this blog. I had an idea to write a post about the different types of nurses you encounter; the doctors; something about the food. Then I thought Why not make it a series?

So I will continue to post updates and other tidbits of information as well. But occasionally I will write about something that relates to life in a hospital. I’ll entitle these posts “You Might Live in a Hospital If – insert potentially clever but likely straightforward descriptor here” Since we’ll be going home Tuesday (see paragraph two of previous post re: my plan for rounds this morning) I will likely be writing about things that have happened in the past. I’ll do my best to have it make chronological sense, but since this is my blog I don’t have to.

These are in no way intended to incite sympathy. I don’t want anyone to feel bad that we have to live here. Remember, it’s always about perspective. I just want to give some in-depth insight [how do you like that? Incite and insight in the span of four sentences.] to what happens when you spend this much time in a hospital/(s). You know those guys who are always on Good Morning America or the Today Show, who give tips on how to travel? Tell you which rooms in the hotel have the best water pressure; suggest which airline to fly based on where you’re going, and what seat to get for the most legroom; teach you who to grease and how to grease them to get better seats at a game or a table with a view in a restaurant. I’m going to be those guys – but for less fun stuff.

If it doesn’t work, I’ll stop.

I'm Lovin' It

I’m just returning from the highest grossing McDonald’s in the US. After I wrote the last post about McDonald’s I had a friend tell me how the journal he kept while traveling in Europe talked about how he ate in McDonald’s everywhere he went, and even told what he ate. I would hate for this space to turn into that, but I couldn’t let this go.

You may recall me describing the scene from my last visit: A young lady handed me milk and coffee and I wondered if she actually thought I ordered milk and coffee. Just now I went down and ordered, “a large coffee with milk and two apple pies.” A completely different young lady asked me if I wanted a milk and a coffee. I guess that answers my question.

Incidentally it also came out to $1.82. The other night it was $1.75 for the exact same thing. Highest grossing McDonald’s in the US.

I Was Minding My Own Business, I Swear.

It seems actually being in the hospital gives me a) more material and b) more time to post. Unfortunately it also seems to provide opportunities to write about things other than Molly. That doesn’t make the site less about Molly, it just makes it more about what’s going on in our lives as a result of Molly.

This post is certainly no epiphany. It’s not even that interesting. I am having a hard time convincing myself to even publish it.

A story for you: I am walking into the cafeteria and I end up behind an employee in all black, head-to-toe. He is a food service employee; they all dress like that. I guess in an effort to support the home team, and break up the black floor-to-ceiling, he put an Eagles sticker on the back of his hat. I wondered silently if I could unpeel it without him knowing. But I was six feet behind him.

Now I am standing in line waiting for my sandwich. I hear, “nice hat, dude.” I am rocking the white, flex-fit, mesh-back sideline cap from this season. It is a nice hat, but I am not foolish enough to believe that the owner of this voice is genuine. I nod slowly as I look up and see Johnny Cash spinning his hat around to display his sticker.

“Yeah thanks. I saw that on the way in and thought about pulling it off.” He replies with something about wanting to see me try it or some such thing, and then walks away muttering something that ended with, “Eli, wee-lie.” I wish I could tell you what he said, but he appeared to be speaking with this bizarre accent that is indigenous to a 40-mile radius around Pattison and Broad.

Then a little while later I am waiting for an elevator on Molly’s floor. It was taking forever because, as I found out later, there was an incident on the seventh floor that left us with one shut down elevator, one stuck elevator, and one operable elevator. Apparently a woman on the seventh floor was in an altercation with an employee that resulted in the dispatch of security. By the time they arrived the husband was involved as well. They tackled him. She came to his aid. They both got cuffed. Eight security guards dragged them into an elevator; they fought in the elevator – eventually stopping it between floors. Elevators one and three shut down automatically. Then they got one working again. But I literally stood there for eight minutes waiting for an elevator. This was before I knew the story.

In the waiting area behind where I am standing there is a twelve year old kid. I hear him start going “oh my god, oh no, oh no.” His parents are naturally concerned. “That guy is a Giants fan,” he says. “That guy has a Giants hat on and I have a Cowboys hat on and Giants fans hate Cowboys fans.” I am not the only one standing there. I am sure I am not the only one hearing this. He keeps going. “Oh my god I can’t believe there is a Giants fan.” Strange. Like he’d actually never seen a Giants fan before.

The elevator finally arrives and as the doors open I turn to offer the young man some words of wisdom. I tell him, “Cowboys fans hate Giants fans. Giants fans don’t pay any attention to Cowboys fans because we’re all too busy hating Eagles fans.” I slide into the crowded elevator, next to a big food cart and from the other side all I can hear is somebody mumbling in a strange accent something about injuries and “being all done.”

Freakin’ Johnny Cash.

Freakin’ karma.

Freakin’ Eagles fans.

Quick Molly Update

Molly is progressing very nicely. Slowly - but nicely. As I type this they are administering her pain medication, from which they are starting to wean her. She is still eating continuously, at full volume (18 mls/hr), at 22 calories. The plan is to increase her calories to 24 this morning [As of two seconds ago when I asked the nurse if that had been done – it hadn’t. We’ll get to the bottom of that. We are beyond being passive observers; we now drive the bus]. After it’s determined that she can tolerate full volume/full calories, they will begin feeding her on a normal schedule – one which we can maintain once we leave: 72 mls/hr, every four hours. As a frame of reference, she was eating about 48 mls/hr, every four hours, before we came in for surgery. She has been tolerating feeds well since she started eating again on Wednesday. No reason to think she won’t do well, but we’re beyond assumptions.

Somehow I missed rounds this morning. I think the docs hide out in the hallway and jump from room to room based on which parents have vacated the area. They want to avoid the barrage of questions they receive from parents who have been here long enough to catch on to how things work. We’ve been here now for 18 days; long enough to catch on. Incidentally I wanted to be here for rounds this morning as much to meet the doctor as to fill them all in on my perceived plan of action for the next three days, which culminates in us walking out the door Tuesday afternoon.

The attending on this weekend is a Lawrentian. Erin had a Lawrenceville t-shirt on the other day, so they made the connection. She told him I went there. Then she told him I worked there. Then she told him what I did. Word is he isn’t psyched to meet me. SLC, he is your prospect, I’ll qualify him for you.

I have no internet access in Molly’s room. There is a jack, and I have an Ethernet cable, but according the IT guy who was here a few minutes ago it may be disabled. He is working on it, which I appreciate, because it is Saturday and there aren’t usually IT people here on the weekends (or at night). I have some work to do, so that would be nice to have. There are three computers in the lounge, but people are always waiting to use them so I don’t want to take one over for two hours while I work. Not that I could even get my work done in there with a hundred people.

Last night Erin and I stayed in the Penn Tower hotel across the street. I wouldn’t recommend it for a vacation, but it’s not nearly as bad as the reviews I read said it was. It was nowhere near the worst hotel I ever stayed in. It was relatively clean. But you can’t beat the location, or the price. We got a full, uninterrupted night of sleep while only leaving Molly for about 9 hours. And we were right across the street in case anything happened. For the record the Penn Tower gets two full stars more than Allegro pizza. We should have stuck with The Greek Lady.

Top Ten Reasons Gavin Kicks A$$

We’ve been concerned about how Gavin would respond to Molly since her diagnosis in March. How will we explain everything to him? Obviously we were concerned when she was born. Will he resent her for getting too much attention? And we’ve been very conscious of him during the last several weeks while Molly has been in and out of hospitals, particularly the last two weeks while she has been here. I took him to a Giants game a couple weekends ago, just the two of us. Erin and I took him to the Please Touch Museum on Saturday. We try as often as possible to have him sleep at home in his own bed, but when he can’t he loves spending the night at Grandma and Grandpa’s house. All in all he has been incredible. He amazes me on a daily basis.

So I offer my son a tribute. Gavo, you might just be my hero and these are the top ten reasons you kick a$$:

10. We go to the Please Touch Museum and afterwards all you want to talk about is the taxi. Last year when we took you to see Santa in NYC you would have been satisfied if we’d gotten right back on the train in Penn Station and headed back home. Someday I will take you to London, like you’ve been asking, and when I do all you’ll want to talk about is the big, big plane that takes us there.

9. Your favorite part of going on trips, admittedly, is eating Pop-Tarts.

8. At your first live Giants game you fell asleep on my lap for a solid hour, which included the eventual game-winning drive and accompanying crowd noise. You never once asked to leave until five minutes remained in the fourth quarter, which was about the same time everyone else was leaving anyway. And now, over a week later, you’re still telling me how “Shockey got hammered” and dropped the ball in the end zone.

7. You like eating everything bagels with cream cheese. Or everything bagels with egg and cheese. And you’ve even gone so far as to ask for an everything bagel with egg and cream cheese. Oh yeah, and eat it when I made it for you.

6. You can identify Kurt Busch’s #2 car as “the beer car” because it looks just like the bottles in our fridge. You can also identify Junior’s car, but you call him Dale Frunham Junior.

5. Last night when we went to the grocery store you actually picked the menu, pushed the cart, filled the cart, and scanned the groceries. Too bad you couldn’t buy them. But you did give me a hug, and since I would pay for those hugs it seems you sort of did.

4. Your favorite songs over the last six months have been Bad Day, Hips Don’t Lie, and Sexy Back. You have no idea what they mean and you make up your own words anyway, but you can identify the songs and tell me they’re your favorite.

3. The other day when you were playing on the floor you noticed that your knee hurt because it had a rugburn. You said you couldn’t play with your cars and push them around on the floor because it hurt when you did. You asked me to kiss it to make it better and I did. You haven’t even mentioned the rugburn since.

2. When we were leaving the hospital one of the first nights and you didn’t understand why mommy had to stay you started to cry. I told you to try not to cry because it would make mommy sad. You actually stood yourself up, wiped off your tears and gave mommy a big hug goodbye. Then when we got around the corner, out of her sight, you started crying again

1. You’ve never once asked why Molly is in the hospital. You're always anxious to see her and give her a kiss. You don’t even know she is sick. You know the tube in her nose is so she can eat, but you’ve never asked why no other babies have them. None of that matters to you. You just love her because she is your baby sister and you’re her big brother.

Incidentally, this post may lead to a follow-up:"Top Ten Things Gavin Says That Make Me Laugh Out Loud." Oh and also, this list could have been a Top Fifty. He is definitely my hero.

Delayed Reaction

It’s been a few days since I have added anything to this space. In that time a few people – more people than days have passed – have asked me when there will be another update. I guess people actually read this occasionally? I am not going to be so foolish as to claim an audience, but I will be sure to watch my language, and change names of people who may not want to be mentioned. I should probably be careful not to insult anyone I work with; try not to point out the annoying habits of people I interact with daily. It’s a good thing this is about Molly.

If you’ve never been to the Children’s Hospital of Philadelphia you probably don’t know it’s home to a 24 hour McDonald’s that is said to generate more revenue than any other in the country. It’s also notorious for having the worst service of any service-based establishment. I must say though, my last two visits (there have been three total: one the very first time we came here – 10/17, I believe, one Saturday evening when I realized the cafeteria closed an hour early on weekends, and one just a few minutes ago) have proven the poor service label unwarranted. Granted the first time we waited 12 minutes for a cup of coffee and an employee berated a customer who claimed not to have enough strawberry in his chocolate/strawberry shake, but seriously the last two times have been great. Actually the most recent one was also just plain weird. I went down for coffee. I ordered a large coffee with milk. The young lady went to the refrigerator and took out milk that would go in a Kid’s Meal and handed it to me. Then she grabbed a large cup and said, “you know this one is 75 cents? The small is free.” You’re telling me the highest grossing McDonald’s in the US would just hand me a coffee if I walked in and asked for a small coffee? And could she have possibly thought when I said “coffee with milk” that I meant a coffee and a milk? Then I asked for an apple pie. She said, “two for a dollar?” I said sure. So I am standing there confused for a lot of reasons. First, I am sure the commercial says you get any size coffee for 69 cents. But apparently the small is free and large is 75. I still can’t figure out why she has handed me a plastic container of milk, but I use it for my coffee and leave the rest on the counter, and now I have two apple pies when I wasn’t even sure I really wanted the one I ordered. Bottom line I spent $1.75. If I had gone with the small coffee and walked out before succumbing to the urge of a tasty apple pie I would have spent nothing. Even if I had gone for the single apple pie I could have snuck out for 50 cents. Highest grossing McDonald’s in the US.

So what’s going on with Molly Bear? Well she is currently sleeping comfortably. She didn’t have a great night last night so I am hoping she has a better one tonight. She started eating on Saturday afternoon and they’ve been increasing her volume every twelve hours. After three days she is up to 13 mls/hour. A normal feed is 60 mls/hour so we have a ways to go. But the good news is that she is tolerating the feeding well, she hasn’t had a fever, and in general she seems comfortable. No one seems in any rush to make predictions on when she will be going home. Today they mentioned that they wanted to keep a closer eye on her incision as it is starting to look more red than they’d like. Since immediately following surgery we’ve heard nothing but good things about the way her incision was healing, so it’s a little frustrating to have it flipped when you’ve started to focus on the road toward home.

Molly’s three month birthday was last Friday - pretty cool. Today we’ve been in the hospital for two weeks – not as cool.

How About Some Good News?

Molly Bear moved into a step-down room in the CCU this morning. That means after eight days she is no longer in the Intensive Care Unit. I haven't seen her yet, but Erin called as soon as she heard the news. I am heading down there this evening to spend the night.

The tests she had yesterday revealed that nothing is consistent with the colon disease they were concerned she had. She also had a PICC line put in yesterday so she can receive meds and nutrients without having to constantly remove and re-insert IVs in her hands and feet. Last night when I was there she looked better than she has in days. And Erin says she slept pretty well, too. She is going to start on formula soon, and her course of antibiotics ends tomorrow.

Perspective, I know, but the drive is BRUTAL. I am so tired of I-95. Whatever. Tonight I am looking forward to it.

Meeting of the Minds

Erin and I are completely fried. Luckily Erin writes things down or I'd be totally lost. I had a surgeon tell me last night we had met already yesterday morning. I do recall meeting someone, and that he was a surgeon, but if you had lined him up with nine other people I wouldn't have been able to pick him out.

So there are a few reasons for my long break without an update. Number one is above.

Number two is my trip to Boston; it totally threw me off schedule. Forty-two hours away from the hospital and I lost all track of what was going on. I really thought I would be able to update on Saturday afternoon but so many new medical developments arose that I didn't feel in the loop enough to write anything. I am slowly catching up.

Number three is that I was in a bitter spell: probably the result of numbers one and two. I think I may have caught up on sleep enough to overcome this now. However, I saw no point in writing something that was laced with bitterness and anger (sarcasm and cynicism I have no problem with). Sure we like to share things, but why bum everyone out when most of what you have is bad news?

So for updates on things that may have happened since Friday, check Erin's journal here.

Sunday night Erin went home to get some decent sleep. She hadn't had a good night sleep since before Molly's surgery. I stayed at the hospital with Molly. When Erin got back to the hospital Monday morning I headed to work. By 3 pm I was back at the hospital because one of the surgeons, an attending cardiologist, our nurse, and a social worker had scheduled a meeting with us for "between 3 and 4." At 4:48 our nurse brought us into a conference room where the social worker was waiting. At 4:50 the surgeon came in (the one who told me we'd met that morning) and told us he had five minutes. I actually had to physically stuff the words back into my mouth as they came out so as not to upset anyone right off the bat. I actually decided at that point to say very little for the rest of this meeting. Surgeon started talking and then the cardiologist joined us.

Basically the surgeon told us they needed to perform one test to rule out something and then after that they'd do a biopsy that would test for something else [I'm sparing you the details, but all these tests involve intestines, bowels and colons - so you're welcome]. Apparently they felt the need to get us all in a room to share their "planned course of action".

Then the surgeon excused himself, kindly gave us the go-ahead to page him any time, 24-7, and left the meeting in the hands of the cardiology attending. He then said something about how the cardiologists would proceed in treating Molly "medically" after the surgeons had explored all their "surgical" treatments.

Bottom line: Molly's heart and lungs look good. Heart surgery did what it was supposed. But other issues have arisen that they are treating now. More surgery (for things other than her heart) don't seem likely right now, but she is pretty uncomfortable. She is being treated with antibiotics, this is day five of seven. After all the tests are done, and the antibiotics are finished, they will slowly begin feeding her again. The schedule for going home is not even on the table right now. I'd guess at least five more days.

Erin and I were talking about the Jerry Springer show yesterday. In college I used to skip a Philosophy 101 class at least once a week to watch Springer. I tried to explain to Erin how it was a better show then: real people, fewer fights, and thought provoking "Final Thoughts" from Jerry that could be applied to real life, even if you weren't an exotic dancer toying with the idea of becoming a man. So in honor of the Jerry Springer Show circa 1995, my final thought:

When your actions have a direct impact on others, it's even more important to keep open lines of communication. Sometimes we get so wrapped up in our own desire to complete a task or reach a goal that we forget to keep the people informed who will be imperative assistants along the way. Inevitably something falls through the cracks and fingers begin to be pointed. Then we actually take two steps back. If we'd all just work together from the beginning we could avoid a lot of frustration and missed opportunities. When you sense someone's frustration, bring them in the loop right away. A lot of things can be worked out over an impromptu discussion of what you're planning and how you plan to get there. It doesn't always have to be a meeting. But if it is a meeting, make sure the agenda is clear and concise. Don't be late. And by all means, make sure you actually accomplish something before the meeting breaks. Until next time take care of yourself, and each other.

A Single Room

After some extended periods of fussiness, and a skyrocketing 104 fever, the doctors decided to move Molly to a private room at about 8 pm last night. They were thinking she may be getting too much stimulation with all the lights and alarms and people hustling about in the four-pod room she was in. Erin and I returned from dinner to an empty pod, and were quickly ushered to her new location. I'd be lying if I told you my heart didn't drop in that few seconds it took for someone to tell us what was going on. Her fever broke at about 4 am. She has been pretty good since then.

Her new room is huge. However, she won't be there long. After morning rounds the doctors decided to move her from the CICU and into a regular room at some point today. Erin got to stay with her last night, and I enjoyed one more night in a Sleep Room. Unfortunately the combination of karma (you'll recall I badmouthed these rooms in this space yesterday) and a new couple who were obviously not apprised of procedure, almost prohibited me from sleeping at all. You fill out an application in the morning and by 2 pm they determine who will be offered the five available rooms. That room is then yours from 7 to 7. Yesterday mine was room #4. At 10:30 pm when I went in to go to sleep, the door was locked. Someone decided to just go ahead and take a room. Fortunately there was another empty and they offered me that one. So even though I plan to go home tonight I went ahead and filled out an application for a room this morning. Challenging karma yet again. Erin says there is something wrong with me.

Luckily my mom has been staying at our house and taking care of Dublin. Also, since she is there, she was able to deal with our broken refrigerator. When it rains it pours they say, and in this case it poured from the full ice bin that melted once the freezer stopped working. Someone is going out to look at it this morning, but doesn't it just figure? Thank goodness for moms.

Back to Molly Bear. She is now resting comfortably in her huge room. Erin is sitting with her enjoying the quiet. I'll head home tonight, into work tomorrow morning, and up to Boston tomorrow afternoon. I'll be back here by lunch on Saturday and will try to write an update then...once I figure out what's going on. In the absolute best case, I'll be able to write it from home - with everyone there.

The Day After Surgery

Molly had a good night last night. She has not as good a day today. I think, like anything else, it hurts more the day after. They have taken her off morphine and started her on a lesser pain medication. Obviously they don't want her to be in pain, but they can't overdo the pain meds either. She is currently in Erin's arms - screaming her head off.

All in all she looks good though. There is some talk of moving her to a step-down room tonight, but we'll have to wait and see. If she is still as uncomfortable as she is now, it seems odd they'd move her. Hopefully she'll be able to come home by the weekend.

She started on formula last night and has been tolerating her feeds well. Some of her discomfort could be from the food - starting again after not eating for almost an entire day? I'm not a doctor, what do I know?

Miraculously, in this gigantic hospital there is no place to pick up a wireless signal.

Erin and I got to stay in a Family Sleep Room last night. It's a little misleading. If they were to call it a Medium-sized Individual Sleep Closet you'd have a better idea of what it looked like: twin bed, chair (basically on the bed), one light. I could touch all four walls from the center of the room. But I slept like a rock - at least from 8 pm until 9:30 and then from 10 -3. Otheriwse not so much. But I shouldn't complain because the alternative to a FSR is a recliner in a public lounge or a bench down in the lobby.

Highlight of the night was dinner. The Greek Lady delivered up a gyro, souvlaki and some baklava. She will be called upon again tonight. If you're ever in the neighborhood, I highly recommend it.