Just another day...

Today has been pretty slow. Arthur is a little fussy today. He was okay this morning but after that, most times when he is awake he seems uncomfortable. We wonder if the antibiotics are making him gassy, or if just being a newborn baby is causing it, or if it's something I'm eating...or if it's not gas...but then what would it be? 

Yesterday. A father/son nap.

It makes me sad, because he was so content all the days before, a calm and easy baby. So, I'm just not sure what to make of it. We can sooth him, so that's good, but it's not lasting. He is calm for a little while but then he is crying in a pained manner again. When he is sleeping he is fine.

As for the waiting for tomorrow's neutrophil count...it's so hard. I have butterflies in my stomach who have butterflies in their stomachs. Tomorrow's number feels like more than I might be able to handle. I haven't even asked the doctors any "what if" questions. Usually I do...usually I want to get a handle on every possible outcome and an idea of what is next IF... if we don't hit 1,000 tomorrow, or the next
day, or....

But my mind can't handle the thought...so I don't go there...

All I know is we are waiting for his ANC (actual Neutrophil count) to rise to 1,000. Then we can leave the hospital and monitor his levels via clinic visits starting with once a week. Probably GCS-F shots will be part of the picture as well - which we'll give at home. Also I just was told they'd like him has to run his "full course" of iv antibiotics, so we can have more peace of mind when we leave here. I need to find out what the "full course" is (somehow, yes, I didn't think to ask that at the time).

I'm relieved, to say the least, that his belly button looks healed...actually healed in my opinion. That's half our ticket home. But, I know that until he has more neutrophils his ugly little stump won't fall off. Poor little belly button.

His platelet count has stabilized but not returned to normal. Nor is it alarmingly low. However the hematologist believes it could be due to the infection or possibly the antibiotics and she isn't
concerned about it at the moment. She will be watching it over the weeks ahead. I asked if he may actually need another treatment of IVIG if in 6-8 weeks we get into "severely neutropenic" land again and (if we do IVIG again that's another jugular PICC and a hospital stay). So I have to just get comfortable with that possibility.

And when we leave, we are ever aware that his "newt" count could drop at anytime between clinic visits. Yet we've been told we don't need to be in a bubble - just common sense precautions -hand washing and avoid being around sick people or going to close to him if we are sick. We have to be ever vigilant about infections. And I have to accept that, for his own good, we could be back here at anytime (thinking how Lil will feel about that makes me sad).

In other news:

I'm relieved to hear that the reports on Gwen's bone marrow have been reviewed by my hematologist and they feel further confidence in this diagnosis of Arthur based on that.

I'm curious to hear what Gwen's daily CBC's showed while at CHOP. It won't mean much for Arthur, but I'm curious.

I'm still waiting for the antibody test on Arthurs blood that may help confirm this diagnosis.

I'm also waiting for now the third test to see if he has or is lacking a specific immunogloblin called IgA. This is one of the tests immunology ordered. The first one gave inconclusive/confusing results.
The second test showed he is completely lacking IgA's. Now this test will go to the Mayo Clinic and won't be back till sometime next week. At this moment, IgA deficiency just is not something we are going to worry about until we are told he has it. Even then, it's something that as we understand, he can grow out of and isn't life-threatening but rather really annoying (more prone to ear infections and a whole list of other things...it won't be okay if he has it, because neutropenia is enough and it would be a totally unrelated separate condition...but right now I just can't let it in my head).

In yet other "news" I finally learned a little more about how Alloimmune Neutropenia "works" that is our chances of successive children having this condition, as again, CHOP dropped that ball big-time so this was news to me. Here goes: it depends on which antigen Myers has - there is one kind that would have mean it was a 50/50 chances that my children after Lil would have this condition. There is another that would have meant 100%.

My hematologist would not have counseled us against having more children because they consider it manageable and alloimmune neutropenia is absolutely self-limiting, that is once my antibodies are out of his system he is just fine (again in 2-6 months). They have many patients with neutropenia of various forms and it even those kids live out in the real world, no bubble, and most of the time manage not to get an infection or if they do, they get help with antibiotics and the like.

How are we? Emotionally this is grueling, as I'm sure you are not surprised. We are holding up okay enough, I don't feel like there is much choice. Our hearts are weary and heavy. But we get through the
day...I have my moments. I break down. I am full of fear. But the clock ticks on...and you just do what's in front of you. Taking care a newborn keeps me busy and occupied, so that's a "helpful" distraction. The evenings are the hardest for me - it's never easy saying goodbye again to Myers or if Lil is here, to Lil. I don't like him being on the road that much knowing he's gotta be so tired.

I'm not strong, believe me, I'm not - I don't have a choice but to exist in this, as I did in everything that went before, oh how familiar it is...and I'm not stronger for having "been" here in a different way before. I'm not more "able" to do this sort of thing than anyone else... and I know there are others here in the hospital who have way, way, more unbearable situations... I know that the support and love from so many people in my life helps me, and yet is overwhelming because I can't possibly express how grateful nor return it beyond saying thank you, again...

Final "other" notes... just to note it here for myself: I had recently was if I had made his condition worse by my choice of delayed cord cutting (supposed to be potentially beneficial for newborns to let the cord finish pulsing before clipping). The reason you do it is to let the placenta dump every last bit of antibodies and such into the newborn... See why I feel like I might have made his situation worse? I may have really loaded him with the antibodies that are causing the problem. Hematologist said it's all throughout pregnancy that my antibodies are going into him...but I can't help but feel like I gave him an needless extra boost. But in the end it really doesn't matter anymore, they are there and there to stay until they die off.