Tuesday, June 17, 2014

Twelve Hours in the Life of a Transplant Parent

A while back, I did a post about what post-transplant life is really like. I talked about some of the dietary and lifestyle restrictions Max will have to follow throughout his life. However, I realized that most of that stuff is in the future--Max isn't being tempted to go to any salad bars now. So, I decided to illustrate what a day in the life of a transplant parent is like.

Here was my day yesterday. And in case you're wondering, no, I'm not exaggerating although I wish I was:

Monday Morning

12:15am: Look in on sleeping baby. Admire how sweet he looks.
12:45am: Notice that the baby hasn't woken up to nurse yet.
12:52am: Worry that the baby hasn't woken up to nurse yet.
12:53am: Become convinced the baby has stopped breathing and that's why he hasn't woken up to nurse yet.
12:54am: Hold finger under baby's nose. Feel baby breathing. Resume my breathing.
1:00am: Stare at ceiling, worrying about the baby.
1:30am: The baby still hasn't woken up to nurse yet. Worry.
1:31am: Fight the urge to stress eat.

1:32am: Remember that the baby took a bottle of breastmilk fortified with formula before bed. Remember that the addition of formula makes him sleep longer.
1:33am: Worry anyway.
2:00am: Stare at baby. Worry that he hasn't woken up to nurse yet.
2:01am: Check his breathing. Feel baby breathing. Exhale.

2:45am: Stare at baby. Worry that he hasn't woken up to nurse yet.
2:46am: Check his breathing. Feel baby breathing. Exhale.
3:17am: Baby wakes up. Somehow refrain from cheering so as to not surprise and/or scare baby. Wake up from shallow sleep and scramble out of bed to collect and feed baby.

3:18am: Nurse baby back to sleep.
3:40am: Put baby back in crib. Drop pacifier on floor. Swear quietly.

3:41am: Stumble blearily to the kitchen to get a sanitized pacifier.
3:42am: Bump into the wall in the hallway. Feel dumb.

3:43am: Look in crib. Baby is asleep. Leave new pacifier in crib and crawl into bed.
5:00am: Wake up and realize the baby is still sleeping. Worry.
5:01am: Check his breathing. Feel baby breathing. Exhale.
5:30am: Baby wakes up. Feel relieved.
5:31am: Nurse baby back to sleep.
6:00am: Put baby back in crib and crawl back into bed.
7:00am: Wake up and realize the baby is still sleeping. Worry.
7:01am: Check his breathing. Feel baby breathing. Exhale.
7:02am: Stare restlessly at ceiling while asshole brain runs through horrible scenarios.

7:50am: The alarm for the baby's morning medications goes off. Baby is still sleeping.
7:51am: Check his breathing. Feel baby breathing. Exhale.
8:00am: Pick up baby. Realize there's a diaper blowout situation. Swear silently.
8:02am: Worry that the consistency of the diaper is too loose.
8:03am: Remember that that's not unusual for a breastfed baby. Worry anyway.
8:10am: After somehow managing to successfully change the baby and keep him from kicking his feet in the dirty diaper, give the baby his morning medications.
8:11am: Notice the baby's breathing sounds phlegmy.
8:12am: Panic.

8:13am: Nurse the baby while husband takes the baby's temperature. Remember that a fever can be a big indicator of organ rejection.
8:14am: Take the baby's temperature.
8:15am: Take the baby's temperature.
8:16am: Decide the forehead thermometer is stupid and try one under his armpit.
8:17am: Take the baby's temperature.
8:18am: Take the baby's temperature.
8:19am: Decide the second thermometer is also stupid and try a different thermometer under his armpit.
8:20am: Worry that three thermometers aren't enough.
8:21am: Take the baby's temperature.
8:22am: Take the baby's temperature.
8:23am: Take the baby's temperature.
8:24am: After several readings ranging in degree from high 97s to high 99s, decide the baby doesn't have a fever.
8:25am: Wonder if you should call the heart center anyway. Decide against it when baby's disposition seems normal and he's his usual, happy, smiley self.

8:27am: Hook up the baby to the pulse oximeter to check his stats.
8:28am: Feel relieved that the baby's heart rate and blood oxygen levels are perfect.
8:29am: Take the baby's temperature.
8:35am: Burp the baby. Get covered in spit up.
8:40am: Hand off baby to husband and get in the shower.
8:41am: Decide to be ambitious and shave legs.
8:42am: Start worrying about baby. Forget to shave second leg.

8:50am: Get out of shower. See baby napping. Smile.
8:51am: Take the baby's temperature.
8:52am: Take the baby's temperature.
8:53am: Force yourself to go in the other room while the baby naps with husband.
8:55am: Worry.
8:56am: Wonder if you should call the heart center.
8:57am: Decide to wait it out and check his temperature at 10 when he gets his next medication.
8:58am: Take the baby's temperature.
9:00am: Decide to leave the baby alone and let him sleep.

9:01am: Worry that he's sleeping too much.
9:05am: Write down a detailed record of all of the baby's stats from the morning thus far. Realize it doesn't seem that scary when it's written down.
9:10am: Take the baby's temperature.
9:15am: Clean the kitchen. Worry about the baby.
9:30am: Wonder if you should call the heart center.
9:32am: Read the stats record you wrote. Feel better.
9:45am: Take the baby's temperature.
9:50am: Worry that you're officially losing your mind.

10:00am: Give the baby his next medication. Smile while you watch him take it like a champ and fall right back to sleep.
10:01am: Take the baby's temperature.
10:02am: Take the baby's temperature.
10:15am: Worry that you're becoming obsessive compulsive.
10:20am: Wonder if you should call the heart center.
10:21am: Read the stats record you wrote. Remember the baby's normal, happy, smiley disposition. Feel better.
10:22am: Decide to channel nervous energy into obsessively cleaning the house.

10:40am: Hear the baby sneeze in his sleep. Worry.
10:41am: Take the baby's temperature.
10:42am: Take the baby's temperature.
11:05am: The baby wakes up. Nurse the baby.
11:15am: Worry that the baby doesn't seem to want to eat very much.
11:16am: Feel reassured by baby's normal, happy, smiley disposition.
11:17am: Wonder if you should call the heart center anyway.
11:18am: Take the baby's temperature.
11:19am: Take the baby's temperature.
11:35am: Try to nurse the baby again. He's not hungry. Worry.

11:38am: Put the baby in his bouncy seat. Watch him happily play with his toys.
11:43am: Take the baby's temperature.
11:44am: Take the baby's temperature.
11:45am: Take the baby's temperature.
11:52am: The baby coughs. Panic.
11:54am: The baby sneezes. Panic.
11:55am: Husband asks you what your gut feeling is. Acknowledge that you feel like the baby is actually fine.
11:56am: Worry your gut instinct is crap.
11:58am: Take the baby's temperature.
11:59am: Take the baby's temperature.
12:00pm: The baby smiles at you and for a minute, everything feels okay.

I could keep going but you get the idea and I'm sure you can imagine what the next twelve hours were like.

Max is fine. He hasn't exhibited any other symptoms other than the occasional cough and sneeze but we're thinking it's either dust or seasonal allergies. However, we have to be super vigilant because viruses and bacteria are so dangerous for him not only due to his suppressed immune system but additionally because of his lowered blood counts. A diaper rash could get him re-hospitalized so a wet cough sets me on edge every time. We've also been taking his temperature so much because a fever can be a big indicator of organ rejection which is always in the back of my mind. We're trying so hard with his cocktail of medications to keep his body from rejecting his heart but that fear is there and it's very real.

He's also on a delayed vaccination schedule (the ones he can receive) due to all of his other medical issues and won't get them until late August or September. This just means that in addition to bathing in Purell, every sneeze makes my heart race. Am I being overly neurotic? Maybe, but I'd rather be overly cautious about nothing instead of dismissive of something that's an indicator of a more serious problem. Jon and Max are my whole heart and I don't know what I'd do if anything happened to either one of them.

The timetable I wrote up makes it seem like I spend my days in a constant state of worry and panic and to some extent, this is true. I'm always worried about Max and I don't see that changing in the future. But just because I'm concerned all the time doesn't mean I don't enjoy being with my son. I love being Max's mom and I am so lucky that I get to be home with him.

That being said, that doesn't mean that there aren't times when I feel like doing this:

Maybe I should just go buy a fourth thermometer instead.

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