The anatomy of a hospital stay

A hospital stay for us, usually begins with a debate. It usually goes like this, "He's not doing so well, should we take him to the ER?" "But in the ER he won't get any sleep at all and we'll expose him to all sorts of crud, let's wait it out." Minutes pass. "He's not doing any better, what about now?" "Maybe we can just pull him through, let's reposition him." No change. "Albuterol?" "He's up to 91!" (Cheering ensues.) A minute later, "And, we're back to 86. Boo." "What about a neb treatment?" No change. "Chest PT?" Nothing. "Change the trach?" No good. And sometimes, as a last resort, "Ambu-bag?" If the problem is a fever, we go back and forth with Tylenol and Ibuprofen, hoping the fever will come down. This debate usually lasts a few hours and nearly always happens when Timmy's asleep.

Most recently, this debate went on for a week. At one point we even loaded Timmy up in the car, only to haul him back in the house thirty minutes later. We spend a lot of time looking at our pulse ox (these numbers are actually not too bad, by the way):

Eventually, Timmy either gets better or we wind up in the ER. In the best case scenario, things are not quite critical, and we have time to pack the things that we will need for a several day long hospital stay. (We don't generally go to the ER unless we're sure that Timmy will be admitted--the only time we've been sent home from the ER we ended up turning around and coming back a day later, when he was admitted.) Usually we're both home when we make the decision.

Sometimes I'm at work already and I have time to come home. Most recently, we had to rely on a close friend who dropped everything, left work, and came to help Mark get Timmy to the ER. (If you ever want to know what love is, THIS is it.)

With Timmy, most ER visits follow a fairly similar pattern. First, we make an attempt to give a rather overwhelmed nurse a concise summary of Timmy's medical history. Failing this, we hand over our "Timmy in a Nutshell". (It's a document whose original intent was to give the highlights of Timmy's medical history on a single sheet of paper; it's now four pages long, but it's been a

lifesaver many times! We never go anywhere without a copy.) Then we usually deal with some questions from people who obviously think we're idiots. We desperately try to hold back the urge to respond sarcastically. For example, "Did you think to suction him?" "Suction? What's that? Oh, is THAT what this crazy machine is for that I haul around with me everywhere I go? Huh, no, never thought of that." Following this, usually the same three things happen: trach culture, bloodwork (usually accompanied by an IV), and a chest X-ray.

Then comes the waiting game. It usually doesn't take too long for the docs in the ER to make the determination that Timmy needs to be admitted. But the real waiting game comes when we're waiting on paperwork to process, orders to be signed, a bed to be prepared, transport to be ready to take us, etc.

This time around wasn't too bad. Time from original arrival in the ER to admission on the floor was about seven hours. (Plans for admission started less than an hour after we arrived.)

Next comes the settling in part. Usually when we arrive up on the floor, we give our story of Timmy's recent issues along with our medical synopsis to the nurse who will take care of him...then to the junior resident. Then we listen (inserting corrections at appropriate times) to the junior resident repeat our story to the senior resident. And then (but usually not until morning) we give the story to the attending. Usually this story-repeating happens in the wee hours of the morning, but if we're lucky, we'll be done and somewhat settled in by 11pm.

The next morning, the real fun begins. How many of you know how to keep a 17-month old entertained in the hospital? Keep in mind the following constraints:

1) You don't have your own room, so you have to stay pretty quiet to keep from waking the other babies up. (Wouldn't it be nice if other people followed this constraint?)

2) Your baby is most likely attached to a few different things--IVs, pulse ox leads, feeding pumps, mist collars, and the like, so you may be limited in the distance from the crib you can go. (This constraint is ameliorated by the freedom we now feel to unplug Timmy from anything we feel like unplugging him from.)

3) Even if you can go further from the crib, you don't have anywhere to go. Your space consists of a crib and a pull out chair-bed thing.

4) The hospital is full of nasty bugs. Sick people (like your child) go to hospitals. Sick people spread their germs around. Touching things can spread those germs. The floor is an especially nasty place, so if you drop anything on the floor, it can't be used again without some pretty intense cleaning. This means that a binkie that falls on the ground can't be used again. Clothes on the ground can't be worn. Toys that fall on the ground can't be played with. This also means (obviously) that crawling around on the floor is not an option for Timmy.

So how DO you keep an active 17-month old who starts to feel better the second the antibiotics hit his system entertained?

The absolute best hospital entertainment tool in the world is the iPad. It was originally given to us by our wonderful friends from our growing up church to help Timmy communicate. But it has come in so handy for so many other purposes. (We don't leave home without it!)

Another strategy (though we don't have a good picture of it), is to tie toys and binkies to strings and then safety pin them to his shirt. The best part comes when Timmy starts trying desperately to throw them over the side of the crib, and he can't figure out how we broke gravity.

Hospital cribs, for those of you who aren't acquainted with them, are quite wonderful inventions. Both sides (and both ends!) go up and down for easy access. The other great part is that they often have clear plastic that rolls down from the top.

One great entertainment strategy is to roll all the plastic down at the top, and then put Timmy in the crib with toys that are too big to fit through the bars. Then he can throw things to his heart's content. (Of course, there's always the odd soft toy that he figure out how to squish and stuff through the bar onto the floor, but 80% of his toys are safe using this method.)

One of the best strategies for entertaining a 17-month old in the hospital? Trash! If it falls on the floor, you can just throw it away!

Getting your child to sleep in the hospital is another challenge. Nights are rough--it's a new environment and it's really noisy. (I'm of the rather biased opinion that trached children shouldn't have to stay in the same pod with non-trached children. The other kids get to cry and wake Timmy up, but he doesn't get to do anything to get revenge!) During our most recent stay, Timmy got nebs every four hours, around the clock. It was even more difficult for him to sleep on the night that they tried to start four different IVs and failed every time, until someone thought to call a NICU nurse down to save the day.

If nights are hard, naps are even more impossible. In the NICU, the nurses usually went above and beyond to maintain a quiet environment. Not the case here. At one point, all the babies in the pod were napping (or trying to nap) and the nurses were carrying on a loud conversation with one another across the room. Then there's always the well-meaning but unthinking hospital professional who barges into the curtain enclosed cubicle, just after you spent two hours getting your child to sleep, and says in a booming voice, "Well, hello! I'm here to do X!!" And naptime is over. Here's what naptime in the hospital looks like:

Timmy's shirt in the second picture reads, rather appropriately, "Sleep is for Humans."

Sleep for us is also not such an easy thing to accomplish. But thankfully most hospital rooms have these chair bed pull-out things that work pretty well. Once we even stayed in a room that had a love-seat sized pull-out thing--now that was luxury!

Workspace is also a limited commodity in most hospital rooms. Usually we have a single table that serves as medical supply holder, trach care prep area, dining room table, surface to set stuff we don't want on the ground, etc. When we're really lucky, we have a small table AND a little set of drawers with a top.

The best part about our recent hospital stay was the fellowship. We had several friends from our church stop by the hospital to visit Timmy. One dear friend stayed for practically the whole time! I can't even begin to explain how much of a difference it made to have friends to help entertain Timmy when we were at the end of our ropes. It also gave us the chance to sneak downstairs (together!) to grab a much-needed bite to eat. (These days we don't ever leave Timmy alone in the hospital.) Friends gave us much-needed emotional support; they brought us food and crossword puzzles and books to read and balls for Timmy to play with; they took one of our cars all the way home for us so that we didn't have to worry about how to get the second car home; friends dropped off take-out Chinese the night we discharged so that we didn't have to worry about where our supper was coming from; friends even went grocery shopping for us so that we came home to a stocked fridge, complete with pot roast ready for reheating. Our move to Maryland has been difficult at times--it's easy to feel lonely when it's so difficult for us to get out and make friends. This weekend was a good reminder to us that there are people here who care for Timmy (and us!).

And finally, at the end of a hospital stay, the word "discharge" starts to pop up in conversations. Discharge might not happen for 187 days (in the case of Timmy's NICU stay), or it might happen after only a night or two. This time around we found ourselves headed home on the evening of our fourth day in the hospital.

Timmy's had three hospital stays in January and February. Our fingers are crossed that he won't have another one until the first week of April, when he's scheduled for surgery!