Wednesday, September 30, 2015

Little man's liver

Will's liver levels are back to normal!

He's still a little "off" but is making a nice recovery. When Will starts to lose his balance he compensates by taking steps backwards. This can result in some nasty falls, but thankfully he isn't falling as much and seems to be doing less stumbling around.

He's been going to school for about 2 hours every day this week. Next week, we'll try to do half days - so I'll pick him up after lunch. I really want to "ease" back into school so his stamina and endurance has a chance to catch up before cold and flu season.

Just a little PSA on cold and flu season... if you choose to get the flu shot and you are around Will or other immune compromised kiddos, please consider doing the flu SHOT and not the MIST. The mist is actually a LIVE strain of the flu, meaning it's communicable to those who may have a harder time fighting illnesses. Not looking for a debate on vaccines, just simply asking those who decide to do the flu shot and for those who are around Will to please consider doing a flu SHOT, not the mist.

A few pics from the hospital...
Playing the drums, one handed and with his left hand at that!

My incredible hulk dealing with an IV and other unpleasantness. 

A visit from Mike - Will was more animated during Mike's visit than he was the four miserable days we were in the hospital. 

Will made a friend, "G" was quite possibly one of the sweetest kiddos we've ever met. They shared a love of playing the Wii and being highly informed on all that is happening. There also was another new friend we met who also has mito. Will and "M" went to a puppet show together one evening.  

More than halfway there!

Monday, September 21, 2015

Liver malfunction

Two weeks ago (9/8) Will tested positive for strep and started on an antibiotic, amoxicillin. Later that week he seemed a little off, but had a pretty good weekend. Monday was not great and Tuesday he was obviously not right.

He wasn't showing strep symptoms, but rather (what I call) mito symptoms. When his body is trying really hard to fight something off or protect itself he starts physically falling apart. For example, his balance and coordination is way off and he also starts having some cognitive processing issues. 

There were just too many odd things. So, I called the neurologist and she said to head to the ER. Neil has been out of town since 9/11. So, I made arrangements for Quinn to go home to my parents house then Will and I packed up and got to the ER around 5 p.m. 

This was by far our worst experience at the ER yet. We got stuck in a room with two beds and a curtain divider... So we had many loud crying baby visitors. I will stop there. :-) 

Got hooked up on fluids and labs came back indicating a problem with the liver. No one could say why, how or when... 

It was obvious we were going to be admitted, but no one could tell me for sure, or even if there were beds available upstairs. We finally made it upstairs around 11:30 p.m. Will had not slept (see above crying babies). 

After getting through all the admitting stuff - endless medical questions, poking, prodding and vitals - we drifted off to sleep around 12:30 a.m. 

I will complain about one item - this night nurse was so incredibly not aware. I told her Will was going to use the rest room then we could do vitals. She runs out, we go to the bathroom and she comes back in with a bed pan. Didn't ask, just assumed for whatever reason Will couldn't walk to the toilet. I'm guessing it's his medical stroller. 

Then she starts asking me questions in such an inappropriate way. "Well, can he even walk? Does he talk?" This went on a few more questions and I finally stopped her and said something along the lines of, We talk about our son in a much brighter and more positive way. I would appreciate if you could rethink how you are asking your questions and find a more positive way to address any concerns or questions you have. 

I'm pretty confident she just thought I was crazy, but she did leave the room politely. 

The next few days we basically were dealing with understanding what was going on in the liver. The normal level for one particular liver enzyme, ALT, is 60. In the ER his level was 550. That's nearly 10 times the amount it should have been. It was finally revealed that his liver function enzymes were normal. The enzymes that are high show that the liver is inflamed and angry.

At first no one seemed to think that the amoxicillin would have done this, but that's what the final theory was... 

There were a lot of scenarios discussed as possibilities - the scariest one being that he was in early stage liver failure. As a side note, Will would never qualify for a transplant of any sort because of his diagnosis. However, for a liver if me, Neil or Quinn were a match we could attempt a live liver transplant. Hopefully if it ever comes to that my liver has had a chance to recover from college antics. :-) 

At any rate, GI was finally called in and they decided that the amoxicillin was acting as some sort of toxin in the liver. His liver function enzymes were normal. The enzymes that are high show that the liver is inflamed and angry. 

We did an ultrasound of the liver and it seemed okay and his labs kept going down. So we were released Friday around 6 p.m. 

Thanks to our family, I was able to find someone to hang out with Will at the hospital every afternoon while I went home, got Quinn from school, fed, bathed and put her to bed. Then someone would stay at the house overnight with Quinn while I went back up to the hospital with Will. 

I can't imagine how crazy Neil must have been going this week. He has been overseas traveling and there is a 12 hour time difference, not to mention not being able to just fly home. It obviously would have been easier to manage two kids with him home, but the worst part is just not being able to hug Will. We are all excited to have him home soon! 

Will made a friend in the hospital this time. A little guy who is a few years older and very kind. They played the Wii together, rolled a ball and just enjoyed visiting with each other. 

I think everyone was happy to be home Friday. Quinn seemed pretty angry with Will at first, then after a bit she just attacked him with hugs and kisses. Just kept hugging him over and over again. 

We left the hospital and his labs were steadily coming down, but still very high, in the 300s. 

It's Monday and he did lab work. Down to 249. So that's good, but still not right. 

You can tell he is still pretty off balance and having some coordination issues.

I don't know when he will go back to school. Definitely not till his liver is functioning properly. 

I have some photos to upload, but for whatever reason it's not working. I will try and update it later. 

Tuesday, September 8, 2015

Lollipops for everyone

Quinn has had a bad run here lately. Her second ear infection in August and now.... strep throat in September.

She spiked a temperature this weekend and has been sporting a snotty nose for a bit too. I kept her home today and took her to the doctor.

She tested positive for strep. After a fun filled two hour visit we left and picked up Will.

While en route to car pool, I checked in with his immunologist. She said go get him tested and called in some antibiotics just in case. So... Will hopped in and back to the pedi we went. He ZERO symptoms - no fever, runny nose, cough, throat pain etc. But, tested positive for strep as well.

The doctor thought maybe his throat looked a little red, but she never would have diagnosed it as strep. I am just so relieved he doesn't have symptoms and we were hopefully able to nip this in the bud. Please say a quick prayer for Will that this is as far as it goes for him and that the antibiotics do their job.

So after I got medicine, the kids fed, bathed and in bed I headed to a doc in the box and was tested. The biggest shocker of all, I'm negative! So relieved. I figured I would have it too and it would just further complicate our lives.

I have spent the better part of the past 24 hours just troubleshooting how this would all work out and just sort of panicking. I'm relieved that we know what's going on with Quinn and I guess relieved to know that for now, Will seems to be okay.

He had a great morning at school, then a pretty bad afternoon. I also feel terrible having even sent him to school, but I didn't know so I can't fix that. One big indicator something is off with him is not only his energy level, but his coordination - or lack thereof. We have seen a little fatigue and slightly more balance issues but nothing alarming.

At any rate, after holding both kids down for their throat swabs it was lollipops for everyone.... I think the nurse felt horrible after doing Will's and left the entire basket just for him.

Will was so upset after his; I don't think I prepared him for it very well and he sort of kept falling apart the rest of the day. 

It was everything from not being able to kiss Quinn, to missing his show and tell tomorrow, to wanting to use my phone while it was charging. He also was really angry at the CVS drive thru line and how the cars were taking forever. He basically said and acted exactly how I wanted to do :-) 

(He will be able to do show and tell a different day!)

I should note, I'm also shocked Quinn didn't somehow manage to choke on that lollipop. At least we were in hands reach of multiple CPR trained staff so I just let that one go. She licked it till it tasted like cardboard.