We're Back

Molly is home and in great spirits. She is currently hanging out on the couch watching TV with Mom and Dad. She has assured us she has no desire to go to any hospitals for a while. Erin agrees.

Comments

I've gotten some questions lately about Comments in this space. Let me explain the process:

When you submit a comment you're given the option of doing so under a name (yours or a made up one, I suppose?), or anonymously (which should negate the need to make up a name). After you submit the comment I get an email telling me you have done so. I then have to make the decision to publish, reject, or moderate your comments. In most cases it's pretty clear to me what comments people want posted and what comments they want kept private. But I am only a recreational mind-reader, so, at times, I presume I could be mistaken. I will never moderate your comments - unless they're offensive - in which case you've probably wandered onto the wrong web space. If I select to publish, it forever becomes part of this travesty of modern technology and will be attached to its corresponding post for all to read.

So here is the deal: If you click the profile link you will find my personal email address. If there is something not for public consumption that you wish to share, please do so using that address. If it's something you're comfortable publicizing, please submit it as a Comment. From this point forward I will publish all Comment submissions.

The fact that people have been asking leads me to believe some of you out there may have something to say. If you have a question, or a suggestion, or advice, please feel free to share. By all means, let's make this interactive. Even I get tired of just listening to myself.

This is Harder Than I Thought

It's been difficult to avoid the negative comments lately. Particularly with Molly ending up back in the hospital; and a new hospital at that. What's going to be even more difficult - and I should have thought of this sooner - is keeping to my previous years' sacrifices. Remember, I mentioned the altered driving behavior and the disappearing F word? Well those things seem to be related to one another, and with all the driving I have been doing lately it seems that I have more to think about than I ever imagined. But I can do it.

Also, at the end of my previous post it seems I may have suggested we're not happy with the medical care at RWJ. This could not be farther from the truth. They are a tremendous bunch of doctors and nurses and their facility is top-notch. We've just gotten used to the way things happen at CHoP and we began to take for granted the fact that virtually everyone who we came in contact with knew everything there was to know about Molly and her needs. Now we go to another facility and they need to know everything from square one.

It gets very frustrating when you have to answer very basic questions. It's obviously for the patients own good and the medical staff's preparation, but it will never get less annoying when someone asks, "does she have any medical conditions we should know about?". We also tend to forget that we spend every minute specifically dealing with Molly and her needs. These people see hundreds of patients every day. I suppose they're entitled to a few questions.

We did get a compliment from the pediatric ER doc the other night. After going through the Q&A with us and gathering as much intel as possible he shook his head a little and asked "are you health care related? I mean are you physicians or something?" We're not foolish enough to suggest we could be, but it was nice to hear. Erin and I got a laugh out of it later. I said, "You would have to be a nurse and me a doctor. You know all the gritty details, know how to do all the hard stuff, you keep track of her meds and all that. I just come in, ask a bunch of questions, and then leave."

At any rate, what I should have said at the end of that post was that it resembled going to a new tax guy. With a new tax guy you have to start from scratch: How many children? Household income? Charitable contributions? It's always more time-consuming and a little bit frustrating as compared to going to the guy who has been doing your taxes since you were single and renting an apartment for $750/month. And, more than likely, just because the new guy has a shorter waiting list it wouldn't justify making the switch.

I'm Too Old for This

Why would I be sitting at the kitchen table, with a Miller Lite and a deli bag of roast beef, typing on my wife's new laptop, at 2:20 am? It's certainly not because I just got home from a frat party.

It took Baltimore twelve years to replace the vanishing Colts with the expansion Ravens (and they had to steal them from Cleveland). It took Molly less than 24 hours to end up back in the hospital.

At around 4 pm on Saturday Molly had a relatively high fever. We called the pediatrician who sent us to the ER at Robert Wood in New Brunswick. We arrived there around 5:30.

I don't have the energy to describe the visit in detail, but I will say that it took several hours to collect blood and urine to send out for lab results. We were told the labs would take one to two hours, which would have been great had the samples been taken right when we arrived.

Just after midnight we were told we'd be sent home. There was nothing in the test results that indicated anything too abnormal. Her fever was down; she was calm. I took Gavin out to the car so that we could pull around and wait for Mom and Molly. He promptly fell asleep (after all he had been stuck in an ER pod for six hours). After waiting outside for 30 minutes I decided to scoop Gavin up and head back in to check on the girls. Molly had a temperature even higher than the one that led us there in the first place.

The doctor reversed her decision, and Gavin and I drove home. He is asleep. I am not so much. Who knows what the girls are doing.

Oh yes, and in the spirit of my Lenten sacrifice: It may be wise to stick with one hospital and one set of care-givers, especially if they're as great as those at CHoP. If you decide to switch for some reason, you may be disappointed.

Bears and Colts

On March 29, 1984, under cover of snow and darkness, Robert Isray, owner of the Baltimore Colts, packed the entire organization into Mayflower trucks and relocated to Indianapolis. On February 23, 2007, minus the snow, Erin and I busted Molly Bear out of the Children's Hospital of Philadelphia and relocated to central New Jersey. In both cases, the move was kept a big secret until the next morning.

Around dinner time last night Erin was informed that Molly would be discharged after she had her evening meds and her 6 pm feed. So I arrived around 7:30, made two trips to the car with all the stuff we accumulated over nearly three weeks there, and by 8:30 we were all on our way home.

Molly had a good night sleep last night, in her own bed. Same goes for everyone else in the house (well, except Gavin because he slept at Grandma and Grandpa's).

She brought some oxygen home with her, which we're only going to use as necessary. This, of course, requires another monitor and some wires. So the home care company delivered two huge oxygen tanks and they will deliver this machine to monitor her breathing. We'll have a regular hospital room set up here in no time.

Molly is also on a whole bunch of medication. I am not sure what they all do, but there are five of them. I am quite certain I have never picked up five prescriptions from Walgreens before.

More to come. Right now we're just all enjoying being home.

A Little Superstitious

Anyone who knows me knows that I am slightly superstitious. I have been this way my whole life. It's another one of those things I could control, but choose not to. What none of you know is that just now is the first time I have ever written that word. I even had to look it up to make sure I spelled it right.

At any rate, because I am slightly superstitious, I have been hesitating to post an update.

So there is this baby I know. She has apparently been doing well the last couple days. I haven't seen her myself, but this friend has seen her a lot and from what she tells me the little girl is doing really well. The hypothetical consensus is that this little girl might be discharged tomorrow morning. This would be great for her parents, so let's keep our fingers crossed. I mean hypothetically...for this little girl I know.

On a personal note [you know, since everything above is hypothetical and about someone else], I gave up making negative comments for Lent. Many of you know that I have this thing about coming up with things to give up for Lent that might make me a better person. To me, giving up cheese, while certainly sacrificial, does not do anything for me except keep me from eating cheese for six weeks. This is not to take anything away from those who choose to give up cheese, it's just not for me. So, for example, last year I gave up aggressive driving/yelling at other cars, etc. It has changed the way I behave in an automobile, even now a year later. A couple of years ago I gave up the F word. Granted I didn't say it often, but it is now virtually eliminated from my vocabulary (with the exception of about a four hour window every Sunday, and usually one or two Monday nights, from September to January).

This year I am giving up making negative comments. This will be even more difficult than last year. And I am actually going to need some help. In fact, right now I am going back through everything I have written so far and trying to ensure there are none there. Where you can help is by pointing them out if you find them (not just now but for the next six weeks). I am not sure I will even recognize them. But I must warn you: there is a difference between negative and cynical (look it up), and there is a difference between negative and sarcastic. If you're going to call me on it please make sure it's not one of the other two things. For the record, I would sooner give up exhaling than cynicism or sarcasm.

Maybe I should have given up being superstitious?

She Should Be Home Already

Molly had a really good weekend. She was back to full strength, full volume feeds for the better part of Saturday and all day Sunday. She was being weaned off oxygen, and was comfortably working down to none. On Monday morning it seemed that the most likely scenario was that she would be going home that afternoon, and taking some oxygen with her.

Then she spit up.

A lot.

And her belly got really big and hard as a rock.

So I left the hospital knowing she would have to stay another day. But I didn't realize they had taken her from full feeds to IV fluids only. They also took her for a procedure to check on her colon and intestines, to find out what was going on in that big, solid belly. All of this made for a very trying day for the Bear and her mother. And getting all worked up makes it more difficult to breathe, and thus unlikely they would try weaning her from oxygen. In fact, they gave her a bit more to keep her comfortable.

You see how quickly things spiral out of control?

Ultimately she had a pretty good night last night and has been doing well today. Unfortunately, as of this afternoon, she is still on IV fluids only. The build-up from there to full strength/full volume feeds takes a day and a half. So if all goes well we would be looking at a Thursday discharge.

But we know better.

The good news is that she is feeling well and is in good spirits.

Uneventful

Sadly, and miraculously, the class this morning yielded very little material.

Erin and I decided yesterday to switch it up and I ended up going home for the night. I came back to CHoP early this morning in time for the class. Erin thought it would be a good idea for both of us to go. She says it's so she feels more comfortable with the information, and since she is a visual learner she'll understand it better with first-hand experience. I think it's because she was afraid I'd come back from the class and tell her that she could only flush the tube using her left hand and that it would be more effective if she did it wearing a wool hat. How could she argue if she wasn't there?

But what really happened was pretty status quo. It was basically like a CPR class. There was a realistic-looking toddler dummy with a g tube in its stomach. The nurse showed us how to secure it; then she made us do it; then she made us repeat everything she told us about cleaning and caring for the stoma, which is apparently Greek for mouth, "like the mouth of the stomach." ["Scholars maintain that the translation was lost hundreds of years ago."] I half expected to get a sticker at the end of it. Instead the nurse wished us luck and then told us she needed to use the ladies room.

Molly had a great day today. I'll be amazed if she sleeps all night since she has been sleeping most of the day. Keeping my fingers crossed. She had one spell where she got really mad and seemed generally uncomfortable, but aside from that she hasn't even really made any noise. She is on split feeds (half formula/half Pedialyte) at full volume and they are going to keep her on that plan for the next day or so. She seems satisfied with that. She has not gotten any pain medication since 7 am. Tomorrow morning general surgery will come by to change the dressing on her incision. Can't complain.

Ironically, I am exhausted from doing nothing all day. I like to think I am going to bed soon, but there are factors that may prohibit this from happening. Be on the lookout for a future post outlining these factors.

Back in the Room and Resting

Molly had a great night of sleep last night and was taken from the room this morning while she was still sleeping. They very briefly wheeled her into a pre-op room where she woke up momentarily and then fell back to sleep. I think she was too tired to realize what was going on and, thus, was unable to fabricate a fever, cough or sneeze, or spit up. Bottom line: they got Molly in for surgery right on schedule.

By 8:45 the doctor had come out to tell us the procedure went smoothly and there were no surprises. A few minutes later we were up in the recovery area with Molly. We were surprised at how large the tube is but since it will later be replaced by a small button that sits flush against the skin, it's not a big deal. She was a little groggy from the meds, but she opened her eyes when she heard our voices.

Now we're back in the room [the shared room we've been in for the last week] and Molly Bear is sleeping. She'll get pain medication as necessary, but all in all she is doing really well.

I'll post another update later. If not today, then certainly after I take the G Tube class tomorrow morning. I am spending the night here tonight and the class is at 9 am tomorrow. So I'll be solo. I will be on my best behavior for class, but you'd have to be crazy to think I am getting through that session without some valuable fodder for a future post.

Surgery: Take, I Don't Know, Five?

Molly is on the schedule for 7:30 tomorrow morning.

I don't want to jinx it.

There was a good chance the surgery was going to happen this afternoon, but then Molly went ahead and gave herself a fever. So the doctors postponed it. By the time I got down there she was smiling and spitting bubbles. Yeah, pretty much laughing.

Her temperature went back down to normal at around 6 pm and by 7 pm she was on the schedule for tomorrow morning.

Erin and I had our romantic post-Valentine's Day dinner in the cafeteria. We had talked about going to PF Chang's [we planned to go for my birthday in October and still haven't been] but this only cost us 26 cents; well, two vouchers and 26 cents.

I am going to take a nap and then head back down there.

This is Interesting

So I made a joke in my last post about getting my information via my wife's web site and suggested perhaps there was someone out there who could fill me in on how my daughter was doing. Imagine my surprise when a call comes in from a CHoP number and someone other than my wife is on the other end. Actually that's not that weird, but what follows is. Here is my best attempt at a transcript of the phone call:

"This is Dr. Yang from the anesthesiology department at Children's Hospital."

"Hello."

"I have a few questions to ask you about your daughter. You know she is here in the hospital?And we're trying to squeeze her in for surgery tomorrow."

"Ok well you are aware that my wife is actually in the room with my daughter and while I am happy to answer any questions you have it may be easier from a logistical point-of-view if you just go and talk to her."

"Well I went to the room and no one was there. And we need a consent in case we can get her on the schedule tomorrow."

"Blah. Blah. Blah."

"Blah. Blah. Blah."

"Ok. Thank you. Goodbye."

So half way through I realized the call wasn't that funny or weird and I changed my plan. But the point is that someone from the hospital called to get consent from me when Erin is already down there. It seems silly.

And it just goes to show you that we're often as in the dark as anyone because after I talked to the doctor I called Erin and, although she knew there was a consult planned, she had no idea they were talking about tomorrow.

What I got from the doctor was that Molly is doing pretty well. In fact, according to Dr. Yang's boss, she is "the healthiest she's been in a long time." So they want to get her in for surgery because if they don't she is going to be sent home.

So let's hope she gets in tomorrow afternoon [Dr. Yang gave me a 40% chance it'll happen tomorrow] and then has a speedy recovery.

Not the Spider, the City.

Charlotte. This wouldn't happen if we lived in Charlotte. Don't get me wrong, I don't really know anything about Charlotte. But I do know it's the farthest south I would consider moving, and there are probably very few ice storms there.

This weather is awful.

Gavin and I are currently hanging out in our PJs, which is cool, but we were planning to go see Mom and Molly for Valentine's Day and with the current state of meteorology and the forecast for the rest of the day, it's not looking good. I was supposed to relieve Erin for the night and, if I don't get down there at all, that's pretty much impossible. Then tomorrow I have to go to NYC for an afternoon meeting and that makes it unlikely I can get down there then. So poor Erin will have to spend five straight nights there. Plus she won't get her Valentine's Day gift until Friday [and those of you who know what it is know how excited I am to give it to her].

So it may not seem like it, but all these concerns are completely selfish. Ultimately what's going to happen is I am going to have to stay down at the hospital all weekend (which will likely include Monday since I am off for President's Day and three nights still doesn't compare to five).

Hey while I am thinking of it, if any of you have any insight into when Molly might be sent home please let me know. That would be great.

As for medical updates, as far as I know Molly is doing ok. Yesterday they lowered her oxygen levels a bit and she was still breathing well. Hopefully they lower it some more soon, and ultimately take her off completely. There was also a plan to put Molly back on some formula (in conjunction with the Pedialyte). All signs of improvement. Of course, I'll have to talk to Erin to find out if any of this information is still accurate. Or maybe she'll post something on the CaringBridge site. I am not averse to getting my information that way; it is the technology era after all.

Kids Say the Darndest Things

By now you all probably know that Gavin frequently says things that make me laugh out loud, but I am not so used to something that does the complete opposite. Here are the two ends of the spectrum, both events occuring in the last sixteen hours:

Laugh out loud:
I walked in to Grandma and Grandpa's house after being at the hospital for two days. After hugging me and telling me how happy he is to see me, Gavin starts to take my hat off my head. I assured him I did not want to take my hat off (I'd been at the hospital for two days, remember, and I need a haircut pretty badly). My grandmother always told me to take my hat off in a building. I usually obeyed, but most times reluctantly. We've decided to instill this habit in Gavin at a very young age, and he is very good about it. Recently he tried to get me to take off my hat at home and I told him it was ok to wear your hat in your own house. So as I am begging him not to take off my hat last night he reminds me, "Daddy it's rude to wear your hat in someone else's house." How can you argue with that.

The complete opposite:
Grandma and Grandpa took Gavin to see Charlotte's Web yesterday. On the way to school this morning he was telling me all about it. I don't recall this, but it seems the spider dies at the end. I asked him if that made him sad and he said, "no, because I was just watching the movie. But it made the pig sad because he was the spider's friend." I asked if he knew why the spider died and he said "because I think she was just getting a little old. I don't have to worry because I am just starting to grow big."

In hindsight that may have been a good time to address the fact that sometimes spiders die from things other than "just getting a little old." Instead I said nothing.

A Shared Room

Molly spent her six month birthday at CHoP, much like she spent her three month birthday there. Except back then she had a private room. I spent the weekend down there with her and I was surprised by the fact that it really wasn't as bad as I thought it would be. First of all we had the far bed in the room, so by default we get more space and additional privacy (no one has to walk through our area to get to the other person in the room). Second of all, the parents of the other baby were only there for a total of six hours during the 48 hours I was there.

Molly slept a lot during the day, so I caught up on movies. At night, she was up a lot, but the nurses were so on top of things that by the time I heard her cry and looked up, someone was already there. The biggest problem about the shared room is that the babies are never on the same schedule. So when Molly was up the other was sleeping. When Molly was sleeping the other was up. When one monitor was going off it was inevitably while the other baby - and by extension her dad - was sleeping.

From a medical perspective there is very little to report. Molly continues to be congested and therefore occasionally spits up after eating. They have put her on an additional acid reflux medication (this one deals with the reflux part, her other deals with the acid part), but since she spit up this morning I guess that is not going to totally solve the problem. She is still getting some oxygen, but it is just to keep her levels up without working too hard. Erin tells me she had to have a new IV put in last night, so I am sure she is a little agitated today after getting yet another needle stuck in her.

No word on her release date, or a date for surgery. You'll be the first to know - after the others.

Journalistic Integrity

Don't get me wrong this space is filled with contradiction and creative exaggeration, but it's been brought to my attention that there are some blatant inaccuracies in my recent posts, and additionally some confusing medical information. For the sake of journalistic integrity I will attempt to clear these up through the following addendums:

1. The flood. As it turns out the flood only effected a couple offices on this floor. When my colleague called to ask what I needed from my office it was purely precautionary. There were offices actively flooding, and there was an inch of water on the floor in certain spots. Neither of these things apply to me. In fact, as I survey my office for the first time since the incident, with the exception of a variety of personal items missing, there is no indication of any tpe of disaster.

2. Pneumonia. Molly officially does NOT have pneumonia. The x-ray from Princeton showed a spot that the technician assumed to be pneumonia - based on the diagnosis from our cardiologist/pediatrician. When we got to CHoP and the doctors compared her x-rays with those taken during her last stay, it seemed there was very little difference. When they took a new set of x-rays they confirmed that there was no change since her stay just after heart surgery.

3. The spot presumed to be pneumonia. This spot is actually a small section of her left lung, which partially collapsed after heart surgery. In some cases they spring back. In her case it likely will not. We knew about the collapsed lung all along but it appears I never mentioned it.

4. How sick is she currently? Molly has a lower respiratory infection, which is viral. It could be any number of actual viruses, and we will probably find out exactly which one soon. For now all that is really important to know is that since it is viral it is not likely to respond to any medication. It just needs to run its course. She is breathing comfortably with the help of some oxygen. She is eating normally. She doesn't seem particularly uncomfortable.

Last night they moved Molly to a shared room. This is the first time since her immediate recovery from surgery that she has been in a room that was not private. Tonight I am going to stay down there and I would be lying if I said I was the slightest bit happy about being in a shared room. Erin says it's not so bad, but I don't really believe her.

Back at CHoP

So we're back down at Children's Hospital now and Molly did not have a very good night. It seems she was having some trouble breathing, even with the help of the oxygen, and required some additional assistance. They put her in a little tent that acts like a humidifier, and traps all the oxygen in so she can use it more effectively. Unfortunately it's like sitting in a greenhouse so it's fairly uncomfortable for her as far as body temperature. They removed the tent a little while ago and she is breathing more or less entirely on her own. She seems a bit more comfortable as well.

The doctors mentioned something fairly interesting this morning. Apparently the fluid in the left lung that they detected on the x-ray may well have been the partially collapsed lung she has had all along. It seems odd that the cardiologist would have heard what she thought to be fluid, when no one else had, and actually be wrong. But that remains a possibility. The doctors here are monitoring the situation. If it';s not pneumonia, and just the collapsed lung, then they'll have to keep working to find the actual cause of this long illness.

She is currently on fluid only and no formula. There is some concern that the milk-based formula can add to her congestion, and there is also a concern about aspiration since she is so congested and tends to spit up more feeds as a result. Part of the discomfort she is experiencing right now may well be hunger.

That's the latest update from down here. I'll post again when I have some more information.

When It Rains, It Pours

I've used that before, you may recall, when our refrigerator broke and Molly was at CHoP recovering from heart surgery. It's cliche, yes. It's also offensively accurate.

Today I fully intended to write a post about Molly's trip to the cardiologist. Her appointment was at 9:15, so I figured by 11 am I could post something about something.

At 4:04 pm I got a call from a friend at work asking me what I needed from my office. She was slightly frantic.

"I got all the pictures from the bookshelf, what else do you need?" she asked.

"Umm, excuse me?"

"From your office. What do you need from your office?"

I was thinking, have I been fired?

Apparently the first thing she said was that there was a flood. My office was one of many currently flooding. Cell phones being as reliable as they are, I missed the key to the whole conversation. Fortunately I have not been fired. Unfortunately there is an inch of water on my floor. But why wasn't I in the office when it flooded, you may ask?

When the cardiologist listened to Molly's lungs this morning she heard some fluid in the left lung. She's been sick for nearly six weeks now, but every time she was examined her lungs were clear. This time not so much. Since we were in Princeton, the doctor recommended we go to Princeton Hospital (UMCP) for an X-ray. Before we headed out to the hospital she did another ecko and let us know that the heart looked pretty normal, she just wanted to check on the lungs. We were fast-tracked at Princeton and ended up back at the cardiologists office by a little after 1 pm. The x-ray confirmed a little pneumonia in Molly's left lung and the cardiologist told us she had called ahead to reserve a bed for her at CHoP.

So by 3 pm we were settled into the room right next door to the last room Molly inhabited before she left in November. Weird actually. It's literally next door. The room she is in shares a bathroom with the room she was in last time.

Bottom line is that she has pneumonia and she'll require some in-house treatment for a few days at least. We're not sure exactly what the course of action will be; we'll know more after all the tests are done. The doctors seemed generally positive - well one of them did, the other may have actually been a robot.

It's nearly midnight and I am wondering if any of this even makes sense. I'm sorry if it doesn't, but there's nothing much I can do about it. I am going to bed now.

On a much more bizarre note, someone in the elevator was saturated in Southern Comfort and now all I can smell is SoCo. I nearly had to pull over on 95 because it kept making me gag. All you kids out there: drinking to the point of near-blind intoxication will haunt you not only for the following 36 hours, but periodically for the rest of your life.

BLOG

The Washington Post's Style Invitational asked readers to take any word from the dictionary, alter it by adding, subtracting, or changing one letter, and supply a new definition. Here are a few of this year's winners - ones that are relevant to me and/or this space:

Sarchasm (n): The gulf between the author of sarcastic wit and the person who doesn't get it.

Inoculatte (v): To take coffee intravenously when you are running late.

Karmageddon (n): its like, when everybody is sending off all these really bad vibes, right? And then, like, the Earth explodes and it's like, a serious bummer.

Decafalon (n.): The grueling event of getting through the day consuming only things that are good for you.

I found the email from which these were taken to be highly amusing, and timely. If I recall it came on a particularly reflective day. I thought about trying to come up with a catchy name for a BLOG in this same manner. But apparently the word BLOG stems from "web log" and thus already basically is one of these words. But that wasn't good enough for me, so here I go [with my own artistic leniancies; I'm not trying to win anything from the Post] in no particular order:

Blaahhg (n): an especially tiresome web log.

Bulletin bored (n): A place to read notices that make one weary and restless through lack of interest.

Diaryhea (n): a daily record with an excessive flow of personal activities, refelctions, or feelings.

And my personal favorite:

Jourinal (n): a record of experiences, ideas, or reflections intended for private use yet stored in a public recepticle.

Anyway that was hardly the point of this post - although I must admit it was kind of fun. When I remember how I even got to that, I will post something about it. But I must warn you, I started this post nearly two months ago and it's just now gotten this far.