Tuesday, April 22, 2014

Blood Count Update, PT, and a Baby Bunny

Happy (belated) Easter, everyone!

After a week of house arrest, we went in to the hospital yesterday for more blood draws to check Max's blood counts and various medicine levels. Luckily we didn't have an appointment after the lab draws and the IV team showed up very quickly. Instead of using the usual lab techs, Max has to use the IV team because he's so little and because they have to draw from the big vein on his head. However, the IV team has to take care of the inpatient orders first so we can end up waiting anywhere from fifteen minutes to two and a half hours--it all just depends on what's going on in the hospital that day. But like I said, we were able to get in and out within thirty minutes which was awesome.

We got some lab results back today and not only did our transplant coordinator up Max's anti-rejection/immune suppressor dosage, she said his blood counts are still low. She didn't go into a lot of detail at the time but she said she was planning on consulting with the hematologist to try and come up with a course of action before our clinic appointment next week.

Jon and I were pretty bummed out by that news. House arrest has to continue and we're worried about his levels. But we trust that the doctors will be able to come up with something. After all, they figured out a course of action to stop him from being a magnesium hostage when he was inpatient so I'm sure they'll figure out a solution.

Pictured: not our doctors.

This is also something that we kind of anticipated because of Max's age with the transplant. Because he's so little, he has much less of a chance of rejection because he doesn't have an established immune system to reject the foreign organ. However, this means that his risk of infection is higher. If he'd been older when he received his transplant, his risk of infection could be lower but his risk of rejection would be higher. It's a trade-off, much like with everything involving the transplant. As Jon mentioned in the last post, as a result of the transplant Max is at a much higher risk for certain cancers. However, as our transplant cardiologist put it, "yeah, Max will be at a higher risk for certain cancers, GI issues, and a whole mess of other problems but when you're holding him and he's got a heart with four chambers that beats the way it's supposed to, do you really care about any of that right now?"

We didn't have to think about that for very long.

On the bright side, Max had a physical therapy appointment today and he kicked ass. He's met all of the regular developmental milestones and he's doing incredibly well at holding up his head and strengthening his neck. The physical therapist was blown away by his progress and told us that she was extremely impressed with him.

His left shoulder is still a little tight but it's very much improved from the last time she saw him which is great. She also gave us a few more tips for things to do with Max to help keep his development moving forward.

We're done with appointments until next Wednesday for speech therapy and Thursday for clinic so we'll continue to lay low at home because of his blood counts. But we have some new physical therapy exercises to do with Max and then Jon and I have restarted our yoga practice so that should hopefully keep the cabin fever at bay.

Thursday, April 17, 2014

It's in the Blood

Today, we had our appointment with the hematologist (a doctor who specializes in blood). This was a follow-up to help determine what is causing the decrease in Max's white and red blood cell count and to make sure the drop in those levels are not a sign of something more acute.

Wrong type of blood specialist. 

They took a quick blood smear and discussed a number of things with us about Max's blood history. This was the same physician we consulted with about Max's blood clot after surgery, so the physician was already familiar with Max's situation. The hematologist was less concerned with Max's white blood cell count than he was with his red cells. Last week, we found that Max was slightly anemic, but he was put on an iron supplement and we didn't think anything of it. However, his red count is still low and it is something that needs to be closely monitored. The test today showed a slight increase in both red and white counts as well as positive signs that Max is creating new "baby" red blood cells. This is good news.

"The red circles are your red blood cells. The white circles are your white blood cells. The brown circles are donuts. We need to talk."

While his numbers are still lower than average, they are not in the "danger" zone as of yet. Although, he is close to that threshold, so if they start to drop again it could cause some serious complications. Max's cocktail of medications has countless potential side effects, two of them being neutropenia (low white blood cells) and anemia (decreased red blood cells). After the results of Monday's blood draw, we stopped a couple medications that often cause these types of side effects. Even though the counts were up today, the hematologist explained that it was far too soon for those medications to have left the body, so it is even more promising that the counts were up even with those medications still in Max's system. The physician also explained that for babies of this age--around 10 weeks and up--the natural physiology of the body suppresses red and white blood cell counts as the body is still learning to regulate itself. This is a natural phenomenon in all children, but since Max is immunosuppressed and is on medications that have undesirable side effects, it is likely that everything is compounding together and altering his blood composition in a negative way. Max has so many forces affecting his physiology, that it isn't surprising something like this happened. Luckily, the doctors are on top of his testing and are constantly watching for any changes in his internal composition.

We have to test his blood again on Monday and hope that everything is still looking better. He usually has a blood draw every 1-2 weeks, so this will only be a slight increase for him. We also have to look and make sure that Max's body isn't creating antibodies to his own blood cells, because this is a situation that can sometimes arise with transplant patients. In this type of situation, the body would basically start destroying its own cells, which is a potential cause of the lower white and red blood counts. This likely isn't the case, but we always have to cover every base.

This picture is guaranteed to be scientifically accurate. 

No matter how much time we spend in that hospital, it never gets any easier seeing sick kids, especially those with cancer. Since our appointment was at the office of hematology and oncology, this is where all the other kids with blood disorders go and this is the main area for outpatient chemotherapy. It is easy to forget that Max is sick because other than his rapidly fading scars, he has no outward physical ailments to suggest that he is different, let alone in a constantly precarious situation. Not only is this a reminder that Max is different, but it also a little reminder that as Max ages, his risk for developing cancer is drastically higher than average because of his transplant and suppressed immune system. Unfortunately, there is nothing we can do other than teach him how to be healthy, be wary of the sun, and to also monitor him very closely. These are things that every person should be doing--especially those of us that grew up at a high altitude--but it can sometimes start to feel a bit overwhelming. The last month and a half has been so incredible and we couldn't be happier to have our whole family at home. However, it has been easy to forget what it was like to cut through rough waters and to live at the hospital. This week was a wake up call that even though Max is doing better than we could have ever dreamed of, he is still fresh off a heart transplant and we will always have bumps in the road. There will always be good days, and there will always be bad days. Let's just hope the former vastly outnumber the latter.

In other news, Max officially outgrew his first onesie (and it happened to be one of our favorites)! This was kind of a big deal for us and slightly bittersweet. It's awesome that he is putting on weight so quickly and this means that he is almost into the next clothing size bracket.

The little man is growing up so quickly already. Even though we really want this first year behind us so Max will have less risk of infection and rejection, we also want to savor each moment with our adorable little guy. Before we know it, we'll be at his high school graduation. Until next time.

Monday, April 14, 2014

Big Weight Gain . . . and a Step Backwards

It's time for a new blog post!

Today we went in for Max's routine blood draws and clinic visit. Everything looked great through his echo and his EKG and our transplant coordinator was really happy with his progress. Not only did his tests look good, but he's been gaining weight--Max now weighs over nine pounds!

We were feeling really great about Max's appointment . . . until we heard from the transplant coordinator. Apparently Max's white blood cell count is really low which means he's at a much higher risk for infection than he already is. He's always immune suppressed because of the risk of rejection but now it's low enough that the doctors are taking him off two medications and we'll have to go in for additional blood draws on Monday to check his levels.

Sigh . . . sometimes it feels like we're taking giant leaps forward and then we have to take a step backwards. Having his blood count so low is really serious because if he catches anything, Max will most likely have to be re-hospitalized.

For the week, we're going to have to be extra vigilant about how much Jon and I are exposed to so that we don't accidentally bring something home that we could give to Max. This essentially means that the three of us are going to need to be on house arrest until we get his labs drawn again on Monday.

Good thing we like each other.

Sunday, April 6, 2014

Two Months Old with LOTS of Updates!

Hi, everyone!

Sorry for the recent delay in updates . . . Max's dad and I have been a little sleep deprived which has caused us to be a little scatterbrained.

Pictured: Jon and me
Max turned two months old on Thursday! And then as of yesterday, he's been home for a month already. I can't believe how quickly the time has flown by. Pretty soon, he'll be applying to college and trying to move out of the house (which will be difficult considering I will be hanging on to his foot like dead weight).

Over the last couple weeks, Max has had several appointments at the hospital with various therapists. First, we met with the speech therapist who is checking on Max's progress with feeding orally. She was completely blown away by the fact that he is free of his NG tube and that he's doing so well and has been taking all of his food and meds by mouth for weeks. She watched him take a bottle to make sure he was eating properly and then scheduled an appointment with us in a month just to follow up on his progress. However, if he's still doing as well as he is at our follow up, we'll probably discontinue speech therapy unless we encounter any feeding issues.

The day after speech therapy, we met with an occupational therapist to see how Max is doing with hitting his developmental milestones. Again, he did extremely well and at seven weeks, he'd already hit all of his eight week milestones (because it's not enough for this kid to survive a transplant, he also has to be an overachiever). She mentioned that his left shoulder seemed a little stiff from surgery but it was an issue we were already aware of. The therapist gave us a few simple stretches we can do to help loosen up his shoulder but other than that, she said he looked good. We'll probably have a follow up with her in about a month or so as well.

This week, we also met with a physical therapist. It was kind of difficult to get Max to wake up for that appointment because he was in a really deep sleep but when we did, she was very happy with his progress so far. She gave us a few more suggestions about working with his tight shoulder as well as some advice about tummy time (since he wasn't able to lay on his chest for so long) but overall, she was very impressed. She was even more impressed when he told her that Max had rolled over from his back to his front--apparently most babies don't do that until they're 5-7 months old (they usually roll front to back first).

Max is moving along well with his milestones and really doesn't seem like he's behind in development which was a big concern for us, so we're happy he's doing so well.

We've also been in to the heart clinic for his checkups and he's continuing to exceed expectations. In fact, he's doing so well that we're going to move to only having clinic visits every other week. Not only are we stoked because this means he's doing well, but we also don't have to go to the hospital all the time. We love the doctors and nurses but there are a lot of other people there who don't cover their mouths when they cough.

My only problem with this picture is the lack of a face mask.

Max is doing so well right now and we couldn't be happier. The best part is, as of this week, Max is completely wire free! He was on a remote heart monitor since leaving the hospital to watch for any episodes of tachycardia but his heart rhythms have been perfect so we got to lose what we nicknamed his "battery pack" this week!

This is the first time since birth that Max has been totally tube and wire free so we're thrilled that he just looks like a baby now.

In other news, Jon and I are going to try and update the blog's appearance. We're going to be experimenting with different layouts and backgrounds to try and find one that fits the best and we've recently changed the web address to http://www.mightymaxbannon.com (but if you type in the old blogger address, it'll redirect to the new one). More to come, stay tuned!