Our first extra hospital stay

First, I'd like to thank all of you who come here to check up on Mark. In the past I have had a bad habit of posting quick updates to facebook and then popping over here when I had more time. I realize that makes it harder for people who are trying to follow Mark's journey from here. Largely this has been an issue of  my comfort level with the how of quickly posting here. I was finding it overwhelming. However, I have made some changes to our setup today so that this will now be easier. I have also decided to leave facebook for awhile for various reasons, therefor this will now be my main vehicle for communicating about how things are going here. I have added an option to subscribe to the feed through blogger services, so that you can have updates delivered directly to your device. There is also an option to sign up for email updates. That all being said, it also means I will not see your comments on facebook. This will be our official record, so please post and comment here. Mark will try to get on his facebook once we're home, and we will read the comments there to him as he feels up to it.

So now for the update. This will be the last time I copy from facebook (at least for awhile). If you've already read the facebook posts, please scroll down to the dotted line for today's update.
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July 3, 2:13pm

More good news /bad news.

Good news is that my awesome son-in-law, Eugene, passed his driver's test today to get his Class A CDL. He only started school about a month ago, and has pretty much been doing full-time work/full-time school ever since. We are so, so proud of him!!!!!

Bad news is Mark spent the night vomiting more than he was taking in, so we're back in the hospital, admitted at least overnight, maybe longer. He's miserable. He hasn't eaten since Monday, and he's lost three pounds so far since then. He is in pain (headache, throat, eyes, and stomach) and very weak.

July 4, 12:31 pm

I am sending this from the hospital room. We found out this morning that Mark may be getting a feeding tube today. He still hasn't eaten since Monday. He completely lost it - he feels as though this means he's failed in some way. He just kept saying, "I'm really trying" over and over again. I explained all the reasons it was a good idea, and how it's not his fault and he hasn't done anything wrong. He finally asked me to just put on Pandora with Christian music (when he's resting he usually listens to Irish Folk music). This song came on, and I had to share it.
This is an important song that really touched my heart. Our pain is real, and that's ok. God has got this. He's big enough to handle our cries. This is for all my friends and family walking hard roads right now.

Need You Now by Plumb
https://m.youtube.com/?#/watch?v=9ylnx0NA9X4

July 4, 8:40pm

It's been a hard night. Just a short update because I have to hold it together for Mark. Can I just say, having to hold your child down during three attempts to insert a feeding tube through his nose while he screams, kicks, claws and begs you to stop it (and then it never does work so we get to do it all over again in the morning), and then having to wake him an hour later so you can give him a shot that he hates and dreads but that he won't let anyone else give him - this is not my idea of a good night. I'm going to binge watch Grey's Anatomy now for a bit. Happy fourth to you all.

July 5, 9:06 am

Guess who just finished a half piece of French toast?!

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That was yesterday morning, and the last update on facebook. 

Because of the french toast it was agreed that we would wait out the day and see if his appetite might be returning. I suggested putting in a g-tube (a tube that goes directly into the stomach through the abdomen instead of through his nose and throat). The on-call doctor said she would want to see this happen again next cycle before she went that route.

After the french toast he fell back asleep. At lunch he tried to eat some chicken noodle soup, but he couldn't tolerate the noodles. We poured the broth in a cup. Nope. We asked if there was anything, anything at all that sounded good. Maybe clam chowder, he thought. But for right then, he just wanted to sleep. 

My sister came later in the day, and brought his favorite clam chowder. Early in the evening he woke up enough to try it. He took one sip. It doesn't taste the same, he said, tears in his eyes. He shook his head, laid back down, and fell back to sleep.

Later in the evening he awoke so I could give him his nightly shot. No appetite. Slight nausea. Complete despair.

Two hours of crying and distress ensued, during which I put on music, attempted to encourage and reason with him, held him, read him Bible stories, and finally resorted to silly cat videos. The silly cat videos did the trick, calming him down enough to fall back to sleep.

This morning our normal care team came to visit us. Obviously, yesterday had not panned out the way anyone had hoped, so something needed to be done. Today. They began to tell Mark that he needed to stop thinking about whether he liked the food or not and he needed to think of it as medicine, something he just had to do. I could see the tears welling up in his eyes. This had to stop. Now.

"Can we please continue this conversation in the hall." 

In the hall I explained to them that Mark was not being willful; he just could not eat anything right now. Pushing him was only going to make him feel worse and increase his already overly intense guilt complex (no idea where he inherited that from-lol). Everyone was using the same words, but they were defining them differently (thanks CC for Challenge I debate). When Mark said the food wasn't making him nauseated, he simply meant he different feel like he was going to immediately vomit after eating it. It did not mean that he was simply being picky. The food was making his stomach "uncomfortable", "achy", "not feel right". They were including all of those things in their definition of nausea, but he was not. They were not trying to make him feel bad, but he's a people-pleaser and he doesn't want to disappoint anyone ((another trait of completely unknown origin...no one else in our family is like that...ahem). The more they pushed, the more he would feel like he had failed and the worse his depression would get. I also told them there was no way he was going to allow them to place an ng tube, so that was not an option that could be tried again (i.e. don't even think about it). 

Unfortunately, since yesterday his WBC has dropped sharply, so he is neutropenic again. Our Dr. was fine doing a g-tube, but it can't be done now because of the drop. Sigh. Sounds like it will be done before we enter round 3. In the meantime, they are putting him on TPN (nutrition through his port directly into his blood stream) and an anti-depressant, which together mean another 3-5 days here in the hospital. 

Now that he knows the food thing isn't going to be pushed anymore, he is in a much better mood. He's laughing, quoting movies, and even met with art therapy briefly this morning ("They wanted me to evaluate him to see if he was depressed," she told me later. "I don't need to do art with him to tell that. It's obvious." She just shook her head).

So that is where we stand. Here in the hospital for a while longer. Thank you if you managed to make it all the way through this post. They will usually be shorter and more frequent now that I know how to post from my phone :). 

God bless you all.

God is good. All the time.

And Mark says, "Thanks for the support." Those were his exact words.

Hugs,

Wendi

P.S. If posting, please sign your first and last name so we can keep everyone straight :).