Monday, August 17, 2015

Spongebob is Evil and Nothing Makes Sense

Poor Max has had a rough weekend. On top of being sick and having to deal with fevers (thankfully not high enough to warrant going to the hospital), poor Max has been dealing with a diaper rash which has made it incredibly painful for him to pee--he screams and writhes in pain every time he urinates. We've started applying some Neosporin which is definitely helping but the area appears to have a way to go before it stops hurting so much. Overnight, Max woke up about every 30-40 minutes screaming in pain and we took turns walking with him as the pain subsided before he fell back asleep.

This is normally the part of my post where I'd insert an amusing picture with a witty caption but there's nothing even vaguely funny about having your baby scream and cry until he's hoarse because it hurt so much and there's nothing we could do except hold him as he rode it out. 

This morning, we loaded Max into the car and took him down to Phoenix to get his blood draws at Phoenix Children's. He managed to nap for about 20 minutes or so in the car but it was really rough for him considering all of his diaper issues. Then, when we got there, we took Max in for his labs and I have to say, I hate taking him into the lab draw station. The staff is really nice and they're excellent at always remembering to wear masks around Max,but none of that is enough to balance out how miserable Max is as soon as we walk in. I'm usually carrying him when we go in and when he recognizes where we are, he clings tighter and tighter to me and sometimes starts to cry even before I put him down on the table for the blood draw. Thankfully, the nurses are quick and so sweet to him although I'm pretty sure the Spongebob Squarepants wall decals in the draw station are going to give him some weird PTSD when he's older.

Like this kid doesn't have enough to deal with.

After the lab draw, we put Max back in the car and drove him back to Flagstaff. We had the option to have him seen in the emergency department at PCH but after our last traumatic experience there in February, we decided to see his pediatrician in Flagstaff instead with the approval of our transplant coordinator. While we were with Max's doctor, she did a urine test to check for a UTI in addition to looking him over. After the results came back, the pediatrician called our transplant coordinator to not only fill in the team but also to check on Max's blood work results. They're not all back, but here's what we know:

1. Max's urine sample is clean and he doesn't have a UTI--the pain seems to be a result of the diaper rash.

2. Over the last week, Max's neutrophil levels (bacterial infection fighting white blood cells) have jumped from 0.1 to 0.6.

Wut

My jaw nearly hit the floor. We even increased his dose of anti-rejection med over the last week (a possible cause of the decreased neutrophils that we discussed with the hematologist) and his neutrophils still jumped up.

As usual, Max continue to defy medical logic like the snowflake he is.

We're still waiting on several tests, including one to check for a developed autoimmune disorder that means Max is producing antibodies to his own neutrophils as well as cultures on his blood and urine, but for the time being Max is at home with us and we've started a seven day run of antibiotics. Despite all the vomiting he's been doing over the weekend, the doctor said he looks well hydrated and he's only thrown up twice today (it's all about the small victories). Depending on what the other lab work says and what his temperature does over the next couple days, we might still have to check him into the hospital but at the moment, he's sleeping and we're really thankful he's able to finally get some rest.

We should probably get some sleep too.


Just to top it off, our dog was sprayed by a skunk in the face for the third time since we moved back up here in October because of course she did.

This is not the face of a dog who learns from her mistakes.

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