Friday, February 27, 2015

The Altitude Test

Yesterday was a pretty good day for Max. He seemed more like himself and spent the bulk of the day just playing and hanging out. His favorite game in the hospital is to see how many lead he can pull off to make the monitor beep so we played that. A lot.


His nurse found out Max loves balloons so she got him a heart shaped balloon to make up for the fact that she had to draw blood from him in the morning. Max was thrilled with the balloon and he forgave the nurse . . . for now. 

Yesterday's big event was the altitude test. In order to simulate Max's body's reaction to the thinner air at a higher elevation, they put him in a plastic box and pump in the modified air. Initially, when a respiratory therapist stopped by to talk to us, she told us that the test would take six hours.

Have you ever seen a baby sit quietly still for six hours without needing food or a diaper change? Because I sure haven't. They said they'd try to do it at night while Max was sleeping which would help but we also weren't excited about the idea of Max falling asleep cuddling up to one of us and then waking up alone in a weird plastic box.

Fast forward to about midnight. The night shift respiratory tech came by to start the altitude test. Beccause he'd only taken about a half hour nap in the afternoon, Max was very deeply asleep which made it easier to slide him into the box. When I initially heard about the test, I thought the sides would be a harder plastic but they're not, they're more like the thick, clear plastic packaging that bedsheets come in. Or, as I first thought, it's made out of the same stuff as all the packing materials that are usually stamped with warnings that say, "Don't let your baby play with this!"

Max made it through about two and a half hours of his test before he woke up and started to get really fussy but at that point, the doctors said that was good enough and they felt like they had a good enough idea of how he'd react at altitude. Max passed the test jut fine and in their assessment, respiratory said that he should be fine but if he needs it, we have a tank of oxygen and we can put him on 0.1L but they don't expect him to need it. Jon and I feel much better having the tank just in case something unexpected happens again.


At the moment, Max is kicking his feet and playing with his balloon while we wait for rounds. Once they come by, we'll have a better idea about whether or not we're actually getting discharged today but so far, it's looking good. Of course, Flag is supposed to be hit with epic snowstorms this weekend so if we're discharged too late in the day, we might try to stay down here and then drive up in the morning. But we'll see how it goes. As of yesterday, everyone seemed motivated to get Max out of the hospital so fingers crossed that we're heading home!

Wednesday, February 25, 2015

Blood Oxygen, Crazy Coughs, and No Sleep Till Ever

Just as I finished typing a huge blog post, my iPad decided it would be best if it deleted it and made me start over from scratch.

Stupid technology.

Take two . . . as I mentioned, I'm writing this on my iPad so if there are any wonky formatting issues, that's why.

Since the last post, Max has been a busy little bee. Right after we celebrated being one year post-transplant, Max got sick (of course). He seemed to have caught a bug of some kind plus the extra iron he was on was irritating his stomach. He needed to be on such a high dose of iron to help combat his severe anemia but it was only supposed to be temporary. We pulled him off the extra iron and after a few days of adjusting, he seemed to feel better. He also started to gain more weight and we're now up over 7kg! That's still pretty skinny for his age/height, but he's definitely heading in the right direction.


Now that he's finally doing well, let's ruin it by going to the hospital!

Yesterday was Max's one year post-transplant heart catheter and biopsy. His procedure was scheduled for 7:30am which meant we had to check in at 5:30am which meant we had to leave Flagstaff around 3am. Could we have stayed down here the night before? Sure, but we were worried about exposing him to any kind of sickness right before his biopsy (this will be funny later--not funny ha-ha, more like funny FML).

 The procedure went well except our cardiologist told us that Max's blood oxygen levels had been a little low during the procedure, around the mid-80s, whereas he's usually 98-100% in Phoenix (92-96% in Flagstaff at altitude). But after the procedure, his blood oxygen level was at 98% and after the requisite six hours of waiting, a chest x-ray, and the one bang MRI neurology had requested, we were given the green light to go back to Flagstaff.

Once we got home, we used our home machine to check his blood oxygen levels and were surprised to find them ata 85%. We called the transplant team and they said we were fine to stay in Flag as long as Max's numbers didn't go any lower. Within 30 minutes, his numbers had dropped to the mid-70s and the team told us to drive down to PCH. We didn't feel good about driving down to PCH instead of going to Flagstaff Medical Center to get him oxygen but they insisted so we did as we were told. When we started driving, Max's numbers were in the low 60s. They quickly dropped to 55% and I had Jon pull over so I could get Max out of his car seat. The anesthesia from his procedure made him throw up and although we didn't think he had, it's possible Max could have aspirated some of the vomit. I thumped him on the back a few times and he coughed wetly and heavily. Immediately after that, his numbers jumped up to the mid-80s for the rest of the drive.

Since it was 3am when we got to PCH (that's 24 hours without sleep for those of you keeping track), we had to go through the Emergency Department (ED). They were full so we ended up having to share a room with a child whom I believe to be patient zero for a new super strain of tuberculosis or the plague. Luckily, Max was on board with wearing a mask the whole time we had to be in the ED which helped. He's never done that before but this was an excellent time to start.

What he wasn't on board with, however, was everything else. He kept shouting, "This is bad! This is bad! I'm sad!" which was compeltely devastating. The only thing sadder was the way he kept asking, "Bye-bye? Bye-bye?" because he wanted to go home.

                                                                        I can't even.

When we were finally transferred up to the CVICU around 5am (26 hours awake), we were assigned the same nurse we had the night of Max's transplant. I can't tell you what a huge relief it was to see a familiar, friendly face. Max was also quite popular amongst some of the other nurses who all wanted to stop by and say hi. None of them saw him when Max was inpatient in November so this was the first time they'd seen him in a year. Needless to say, he looks a little different now. Around 6am, we were finally able to lie down and try to get some rest. Max, however, decided that sleep is for the weak after about 30 minutes so we had to turn to coffee for comfort.


During our brief nap, Max's blood oxygen levels dropped to the 80s so he was put on 0.5L of oxygen. He's already been weaned down to 0.1L by tonight with a blood oxygen level of 96% so hopefully we'll get him back on room air tomorrow.

Thankfully, Max decided to take a huge nap this afternoon which meant Jon and I got to finally take naps, too. We're nowhere near caught up to the amount of sleep we need, but at least we slept enough to stop hallucinating from exhaustion.

                                                      It's been a weird couple of days.

As for what's wrong with Max . . . we don't know yet. On the more benign end, this could be a combination of anesthesia aftereffects mixed with a cold. On the bad end, it's the beginning of pneumonia coupled with organ rejection which is problematic because we can manage the rejection by upping his immune suppressor medication but that would make it more difficult for him to fight off an infection. Hopeefully it's the former and it's something that's easy to work out.

                                    Please, please, please, please, please, please, please . . .

Right now, Max is on a 48 hour run of antibiotics so we'll be here until at least Friday, barring any bad test results. We're still waiting for the results of his biopsy; we were supposed to hear back by noon today but in hospital time, "noon" is anytime between actual noon and Christmas of next year.


Sunday, February 8, 2015


On Tuesday, we celebrated Max's first birthday!

To a certain extent, the day felt a little surreal. When I was pregnant and we got Max's HLHS diagnosis, we were warned that Max might not survive the pregnancy. Then we were made aware of the reality that Max might not survive to transplant or through it--crazy things happen during minor surgery and they were replacing his heart. But Max earned his nickname of Mighty Max and to me, he makes it look effortless. The kid is a rockstar.

We weren't able to do as much to celebrate Max's birthday as we wanted because we're still in the midst of his first cold and flu season. But we decorated the kitchen and I baked some cupcakes for Max. He wasn't very interested in eating his cupcake but he seemed to enjoy smushing the frosting around his high chair tray.

The frosting is obviously the best part.

After we finished playing with our food, Jon and I helped Max open his presents. He had a lot of fun! Sure, the wrapping paper was the best part, but he's been having a lot of fun playing with his new toys this week.

Since we weren't able to celebrate Max's first birthday with everyone the way we wanted to, we're planning on doing a barbecue at the park this summer so everyone can come (as long as everyone's healthy)!

Today is another celebration for our family because one year ago today, Max received his new heart. To date, that was the scariest and hardest day of my life but I am so grateful. I'm grateful for my fighter of a son, I'm grateful for all the love and support of our family and friends, I'm grateful for the medical team who saved our son, and most of all, I'm so thankful to Max's donor family. In a time of grief, they made an incredibly generous decision that gave us our son. I have so much love and respect for them and there is no way I could ever even begin to thank them for what they have given us.

This week is so special for us and I want to thank everyone who has stuck by us and supports us. I wish I could say something more eloquent but this week I feel like I'm at a loss for words. I'm just so in awe of my son, my superhero, my Mighty Max. Being his mother is such a gift and I am so appreciative of every day we have with him.