Saturday, June 21, 2014

Blood Count Results

Hi, everyone!

I just wanted to post a quick update since I'd mentioned that Max was going in for lab work this week to check his blood counts.We got the results yesterday and . . .

. . . they're still low.

They're marginally higher but still not where we we want them to be. His white blood cell counts went from about 2,400 to 3,000 which is an improvement but ideally we'd like them to be closer to 5,000. We saw our transplant coordinator yesterday and she said that if Max were in the hospital, they'd require everyone who came into his room to wear a mask and gown which means that, you guessed it, we're still on house arrest.

We won't check his levels again until almost mid-July so we just have to keep on doing what we're doing. Thinking positively, at least we're at home with him and Max doesn't have to be in the hospital this whole time.

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.

Monday, June 16, 2014

Low Blood Counts are the Bane of My Existence

Hi, everyone!

Last week we had a couple of appointments for Max. The first one was a well-baby visit with his pediatrician on Tuesday. We ended up running a few minutes late and when we got there, we were seen by one of the pediatricians main nurses. Max looked great and the pediatrician said based on his nurse's assessment that he didn't feel like he needed to actually see Max. His next appointment will be in a couple months after his six month biopsy and we'll hopefully be able to start getting Max some of his vaccinations.

A couple days later on Thursday we went in for Max's heart clinic appointment. The IV team was very quick at arriving to do his lab draws and we then headed to the heart clinic. Max is weighing in at about 12 lbs now which is awesome but Jon and I had both expected him to weight closer to 13. He's filling out a lot more now and he's starting to get little baby fat rolls around his wrists and what were skinny little frog legs are now finally filling out to chubby baby legs.

Max's EKG and echo both look excellent. His heart function is great and one of our cardiologists who reviewed the echo told us that his aortic arch and his pulmonary veins are growing, which is amazing news since they were kind of small due to Max's HLHS.

And then there are his blood counts . . . after two months of this, we're still dealing with Max's low blood counts. His doctors have decided to change up his medications in an effort to elevate his counts. We've stopped three of his medications that can have side effects of lowering his white counts and we'll be going in for weekly blood draws for the next month.

"That should just about do it. See you next week!"

One of our biggest concerns is that one of the medications we're stopping is Valganciclovir which is used to treat cytomegalovirus infections, or CMV for short. The tricky part about CMV is that while Max is negative for it, his heart donor was positive . . . which means that a viral infection could develop at any time. Because of the difference between Max and his heart, there's really not a whole lot we can do other than use medication to to prevent an infection. But the medication, the Valganciclovir, has a side effect of lowering his blood counts which brings us to the trade off: if he's on the Valganciclovir, it helps prevent CMV but it further lowers his already suppressed immunity which exposes him to everything else. By taking him off of Valganciclovir for a while, his blood counts will (HOPEFULLY) go up but he'll be at a greater risk for CMV.

The doctors also told us to pause CellCept, which is one of his anti-rejection medications. Jon and I think this might be the culprit because if we remember correctly, it was soon after we started CellCept that his blood counts dropped. Hopefully taking him off the CellCept will help but again, it's a trade off because without it, he's at a higher risk for organ rejection.

Pictured: Max's immune system.

Unfortunately, there isn't a whole lot we can do right now. We trust our doctors and we're modifying his medications as per their instructions and we just have to keep on being cautious and bathing in Purell.

Seriously, you should all buy stock.

I'm trying to keep my stress levels down but I can't help it--I'm worried about him. His blood counts have been low for two months and I feel so helpless because I can't do anything other than what we're doing. I try not to focus on that but it's hard not to.

Enough of the worry--on to the fun stuff!

You might remember that a while ago, Max rolled from his back to his front. Last Wednesday, Max rolled from front to back! Ever since then, it's like a switch flipped and now he does it all the time (although I'd prefer he not try to do it during diaper changes . . .) He's such a funny kid because that seems to be the way. He did the same thing with breastfeeding--he was only nursing a couple times a day and taking a bottle the rest of the time and then all of a sudden, one day he was like, "No, I love this! I've always loved this!"

Yesterday we celebrated Jon's first Father's Day and we're limited in what we can do because of his blood counts but I think Jon still had a good day.

We'll have lab draws on Wednesday so keep your fingers crossed for Max that his blood counts go up!

Tuesday, June 10, 2014

5 Things that Change When You Have a Baby

It's no secret that having a baby drastically changes your life. Having a "heart baby" even more so, but that is a different topic entirely. Over the last four months, I have noticed my perspective shifting and learning a various life lessons each day.

Here are five specific things I've noticed that changed when the little one joined the family:

1. Things are not about you anymore.

Well, if I found it on the internet, that means it MUST be true. 

It may be tough to accept, but you are no longer the center of your own universe and every decision--and I mean every decision, from choosing where to live to deciding when to go to the bathroom--has to be made with someone else in mind. Your bladder may hate you for a few weeks, but like everything else, you get accustomed to this new lifestyle. It may sound depressing at face value that you will always take the back burner from now on, but that is parenthood, which is a required selflessness that changes one's life, values, and desires for the better.

2. You learn that you can actually function on three to four hours of sleep for months.

Pictured: everyone in this household

Before my son was born, I needed at least eight hours each night in order to properly function the next day. In fact, if I got under six hours, I felt sick all day; sleep depravation hit me way too hard. I had no idea how I was going to handle so many sleepless night, but thankfully, my body adjusted--to an extent. Sleep is a commodity and every five minutes of rest feels like a beautiful eternity. I was never one for naps, but I have a newfound love for the afternoon catnap, especially when that nap is accompanied by a sleeping baby. There is nothing better than family nap time.

3. A tiny human calls the shots and despite what you think, he/she is the new boss in town.

You may think that your many years on earth would have prepared you for this, but in all likelihood, nothing can prepare you for parenthood other than actually living through it. This is not to say that your beautiful child will always decide how each day goes down from here until eternity, but as long as there is no way to communicate with that tiny little ball of joy and explain to them that pushing the bottle away while hungry is the exact opposite is what is wanted, or that a clean diaper is better than a dirty diaper and changing them is not simply a form of baby torture, you have to get used to going with the flow.

4. Getting somewhere on time is a miracle.

Always late for something. 

Now, I was never truly punctual before having a child, but adding a baby to the mix only further complicates things. What once took 15 minutes now takes over an hour. Want a shower before going somewhere? Better add another hour on to ensure that you hopefully find five minutes to jump in the lukewarm water and jump back out. Not only are you responsible for making yourself presentable, you also have to ensure that your child doesn't look homeless or unkempt. Say goodbye to the days where everything you needed could likely fit into your pockets. The diaper bag is your new best friend and if you only have three diapers and two changes of clothes for that single-stop trip to the grocery store, you are going to have a bad time. In all the hustle and bustle of getting the baby ready for an external adventure, you will likely forget to brush your teeth or check your "clean" shirt for spit-up because I guarantee those spots show up regardless of if you held the baby or not. I think every article of clothing that a parent owns miraculously gets covered in some type of baby-slime the minute that infant comes through the door. It truly is a miracle of parenthood.

5. You understand and appreciate the little things.

Despite the chaos and rapid upheaval of everything you thought you knew, your life has a new found meaning and you never knew that a tiny person whom you just met could make you so incredibly happy. I have never fallen in love with someone so quickly than I did when I first made eye contact with my son. Things may be hectic and stressful at times and I may not be able to tell you when I last showered, but I now understand what it means to be in the presence of true unadulterated joy; and that is an extremely beautiful thing.

Friday, June 6, 2014

Four Months

It has been a little while since our last update, and we sincerely apologize to those who closely follow the life and times of Mighty Max. Time easily slips away from us and it seems that after two quick blinks a whole week passes. Even though things often feel stagnant on certain days, time is flying by so quickly that I hope it slows down before Max graduates high school. We have been trying to cherish every moment with the boy and appreciate the little things, such as his warm smile and afternoon naps. Oh man, do we love our naps. As long as we're able to piece together six hours of sleep in a 24-hour period that counts for something, right?

Speaking of time, Max turned four months old this week! It is hard to believe that it has already been four months since his birth, but at the same time, we can't remember life without Max. Things remain relatively similar as to our last update in terms of health, blood counts, medicines, and everything else related to his well being. For the first time since we brought Max home, we did not have a doctor's appointment for a solid week. It was surreal and it often felt like we were forgetting something important. This break was a beautiful glimpse into relative normalcy, which was a nice change of pace. We won't have another clinic appointment until next week, as well as a four-month check-up with our pediatrician, so we will have more information and hopefully some good news regarding blood counts by the end of next week. Not that we can really do anything in the nasty heat that is Phoenix, but we can't wait until we have the option to take Max to do things outside of the house that do not involve the hospital.

Time really is a funny thing. Not only did Max turn four months old, but this week also marks six months since Emily and I initially moved to Phoenix. It is hard to believe that it is well into June--well, hard to believe until you step outside--and that Max is doing so incredibly well. We never thought we would get to this point where our days are filled with smiles, playtime, diapers, crying that doesn't relate to pain, and family time. Our lives no longer revolve around the hospital every day and medications are simply a part of daily life. We don't have to wake Max up in the middle of the night to feed him and give him medications because we adapted his schedule to fit his needs. Outside of the couple two-hour blocks that Max has to be "NPO" (meaning Nil per os, or basically without oral feeds) because of his immunosuppressive medication, Max gets to set his own feeding schedule, and we love that (plus, it is obviously working with how much weight he has been packing on throughout previous weeks). Max has been tube-free for months and he is actually fitting into age-appropriate clothing (he still has a lot of room to grow in terms of girth, but his long torso has him fitting into clothes for infants of six months and up). Back in February, all of these milestones felt like impossible dreams, but here we are. It goes to show that despite how improbable and difficult a situation appears to be, there is always hope.

Even though we would all love a little more sleep and be able to do small things like see our friends, visit our hometown, or even go to the grocery store without worry of bringing a nasty bug home to Max, we couldn't be happier. It is easy to get bogged down in the daily grind and to let the exhaustion and isolation affect us more than it should, but when that baby looks at us with those eyes, nothing else matters.