Thursday, November 27, 2014

A Thankful Thanksgiving

2014 for has been a wild year for our little family and when I reflect on everything, I am overwhelmingly grateful for so many things.

I'm grateful for our family and friends who have helped to carry us through this often traumatic year. The amount of love we've been shown is astounding and I am constantly humbled by the outpouring of support we receive. The methods may vary but at the core, it's people trying to make sure that Max, Jon, and I are doing okay and knowing there are people watching out for us has been so comforting during a year filled with so much house arrest and isolation. We may not have gotten to thank each of you individually but please know that this past year has been made possible through your support.

I'm incredibly grateful for Max's medical team. They've worked so hard with us to get Max to this point and their talent and vigilance continue to carry us forward.

There aren't adequate words to express how grateful I am to Max's heart donor and the donor's family. That family chose, in the midst of their own tragedy, to give our son the chance to live and that is something we can never even hope to repay or express how deeply grateful we are.

I'm extremely grateful for Jon, my husband, my love, my person, my best friend. I couldn't have made it through this year without him and Max and I are so lucky to have him. Jon is the single best person I know and he is the best dad Max could ever ask for.

Most of all, I'm thankful for Max. Today we got to spend our son's first Thanksgiving at home and today, while we ate pie and Max played the drums with spoons on his high chair tray, we got to just enjoy the holiday like normal people. I think I speak for both Jon and myself when I say that we didn't know it was possible to love someone this much. Max--this one's for you. You're the best thing that's ever happened to us and your strength and fight and continued good spirits are a daily inspiration to us. I have never been as happy as when I look at you and I am so grateful for the opportunity to be your mom. Max, we are so overcome with love for you and I only hope I can be the kind of mother you deserve to have.

I hope all of you have had a wonderful holiday full of turkey, pie, and lots of love :-)

Saturday, November 22, 2014

Pathology Results: I Have No Idea What's Going On

It occurred to me last night that we're way behind on our updates--we're so sorry! We've been worried about our little monster and between that and sleep deprivation, everything has started to blur together.

While we were in the hospital, we got the pathology results and everything viral, bacterial, and fungal cam back negative which was a huge relief, especially since that includes PTLD (post transplant lymphoproliferation disorder). However, because all the tests were negative, we really only know what it isn't. The best assessment pathology could come back with was to call the spot in his mouth atypical histiocytic granuloma which basically sent all of our doctors off to consult Dr. Google since they have no idea what that is. Apparently, it's basically a benign canker sore with inflamed cells . . . and they still have no idea what caused it.

Apparently this is a legitimate medical assessment.

Currently, the spot looks better than it did pre-biopsy but now it sort of looks like it's an indent in his mouth. It reminds me of when I took a big fall while rock climbing several years ago and I got a huge rope burn on my leg that was basically a divot. I could share a picture of Max's mouth spot but let's be real--even I don't want to look at it and I have multiple pictures of it on my phone for the various doctors to avoid them having to look at it in person since the only way to see it is to make Max cry (not on purpose but he hates tongue depressors almost as much as he hates Q-tips). You can tell no one has any idea what's going on when the head of cardio tells our transplant coordinator, "Well, I guess you're going to be the expert on atypical histiocytic granuloma in transplant kids," and she retorts with, "Hey! YOU are supposed to be the expert here!"

For now, we're just monitoring the spot to see what happens. There's limited information about these spots to begin with and no information about them in regards to transplant recipients because Max's system apparently has Brooks Wheelan's Disease.

On Tuesday, Max was supposed to get his Synagis shot but we had to cancel at the last minute because he had a fever for the first time in weeks (because every day he's supposed to get shots, he pops a fever). We took him to our Flagstaff pediatrician yesterday and she checked him out. The viral respiratory test we did at clinic on Wednesday was negative but our pediatrician said he still looks viral, like he has cold, due to his very congested nose and the fever. But those symptoms could also be a fever from teething and congestion from the air up here in Flagstaff. Of course, we can't brush off the symptoms  so we have to closely watch Max to make sure nothing spreads to his throat, lungs, or ears. He's still running a fever today but Tylenol seems to help make him comfortable. As our cardiologist says, with transplant kids you always have to prepare to see zebras every time you hear hoofbeats which certainly doesn't do anything to help our stress levels.

Stupid zebras.
For the time being, we're just watching his symptoms and hoping whatever is going on just passes so he doesn't have to end up back in the hospital. On the positive side of things, we got Max's lab results back from his blood draw this week and his hemoglobin and hematocrit results are improving which means the iron supplements we've been giving him are improving his anemia--yay! Hopefully some serious weight gain won't be far behind.

Max's goal weight.

On a lighter, much happier note, we are feeling very loved at the moment. In addition to the outpouring of love and support we've received since announcing Max's HLHS when I was pregnant and going through his subsequent transplant, we've received some amazing surprises on our doorstep: care packages! To our local friends who have been so kind to us, we want to thank you again. You guys are so wonderful and I don't know what we did to deserve such awesome friends but we love you so much and we're so grateful to have you in our lives.


Saturday, November 8, 2014

Hospital: Round 2

Hey everyone,

Even though we have a number of things to catch you all up on in the world of Max, let's start with the most pressing information.

As many of you know, we took Max to our new pediatrician in Flagstaff a couple weeks ago because he had been having a low-grade fever and a couple other minor symptoms that we figured were worth checking out. After our first appointment, everything looked good and it seemed as if Max was simply teething again (we'll get to that later). After another few days of lingering symptoms, we went in for a second visit and a few more followup tests. During this visit, Emily (the Wonder Mom) noticed that Max had developed a weird white spot in the back of his throat. If it were not for Emily spotting this, who knows how long it would have gone unnoticed. Our pediatrician wasn't sure what this spot was, but thought it may be a case of Thrush and we started treating as such. We discussed this with our team and decided this was the best initial course of action and we would follow up in a few days since we were going to be down in Phoenix for an appointment with the hematologist for Max's increasing anemia.

A few days later, we met with said hematologist and started Max on a triple dose of iron supplements to combat his severe anemia-the severity was a surprise to us because we thought his iron deficiency was subtle, not an actual problem that required immediate intervention. During that appointment, the hematologist also took a look at Max's throat and said that this mystery it was definitely NOT thrush, but he wasn't sure what was going on and wanted us to see an ear, nose, and throat specialist as soon as possible. The spot had grown a bit from the previous week and slightly changed its coloring, which is never something you want to see. We met with the transplant team and did a number of initial swabs and tests to attempt to diagnose the new development. Everyone agreed that we needed to see an additional specialist and we made made plans to do so.

Our initial appointment with the ENT was short wherein he decided that we needed to biopsy this lesion because he was not sure what it was by looking at it (which has been the trend this entire week. This lesion/ulcer/spot/growth looks like nothing specific, but it also could be a sign of various things). The procedure itself went well and Max did well, like usual. The ENT sent the specimen to pathology  and Max as admitted to the CVICU once again for monitoring and to help combat his growth stagnation, which is another issue that has been ongoing that may or may not be related to everything else that is going on. We thought we were going to be released from the hospital yesterday, but since no one knows exactly what is going on as of yet, Max's lead physician wanted to keep him here for additional monitoring and to have him here in case pathology discovers something.

The first round of testing was inconclusive and all of the surface swabs came back negative for any type of virus. The swaps showed a bit of bacterial growth, but this is to be expected with any mouth swab. We met with an infectious disease specialist, but he also could only tell us what it wasn't, not what it was. He doesn't think it is a virus, but he said it could easily be some type of fungus or mold infection, now this is rare, but possible. We won't know more until the second round of pathological testing comes back, which will not be until Monday at the earliest (since pathology doesn't work on the weekend, because we all know that medical issues take breaks over the weekend just like everyone else). A number of the stage two tests take a few days because they require cultures and petri growth, so there is nothing we can do to speed up those in-depth studies.

Without further testing, there is no definitive way to say what Max is dealing with. He has no other "sick" symptoms (other than no weight gain), which can be taken as a good sign. Plus he has been his usual happy, hungry self. This lesion could easily be a mouth wound gone array, or it could be a condition known as PTLD (Posttransplant lymphoproliferative disease). The latter is a precursor to lymphoma and is a condition that is the result of rampant production of B-cells as the direct result of a suppressed immune system. Lesions similar to the one Max is dealing with is a potential sign of PTLD. Now we obviously really hope it isn't PTLD and don't think it is since Max has no other related symptoms, but it is always a possibility with any transplant patient. PTLD is generally treatable, but that is a road we do not want to have to go down. Max has been through enough in his 9 months of life, so we hope this is something easily treatable or altogether benign.

Until the tests come back, we are stuck in the hospital, which is a bit frustrating, especially because we all know how well weekends go int he CVICU with the skeleton crew. We have had a number of issues already, especially with getting medications on time and a few other things. However, Max is a trooper like always and seems to be enjoying all the cuddle time. We will try and distract ourselves with football tomorrow and hope for good news on Monday. We can't wait to get back home, especially since we only brought down a a few things for what we thought was going to be an overnight stay.

We will update on Monday, but until then, we will be chilling in the CVICU for now.