Monday, July 6, 2015

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.



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 :).

12 comments:

  1. So many things I wish I could say or do to help but all I can offer are my prayers and love from here. Give Mark a hug and hug yourself. Hospital stays are horrendous for adults but as a parent with a child in the hospital it is a miilion times worse. Hang in there hun. -Debra-

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  2. I wouldn't be "Anonymous" if "Grandma Crook" was one of the options. Thank you for this, Wendi. I am so glad they won't be torturing him with the ng tube again. And that they are not insisting that he eat when the very thought of food upsets him. I am all for anything that makes life easier for him. And when he feels better so do you, I'm sure. I wish I could be there in person to hug both of you. Love, Mom

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  3. Erin Lund JohnsonJuly 6, 2015 at 2:21 PM

    The feeding through the port sounds like the winning option. Well done Mama for standing up for your boy! That's what we're for. Authority figures need to stop using shaming tactics to control people, youth and adult alike. So distressing when your son is traumatized! So very glad to hear he is improving now. Much love to you both! You're in my prayers daily.

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  4. Love and prayers always to Mark for his battle with this terrible thing called cancer. Hugs to you for being so strong for him (and your family). We appreciate the updates no matter how short or long. You have a plate full with what you need to do for Mark and your family. Hopefully soon this will be all done and he can get back to some type of normal.

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  5. I agree with Erin... well done for standing up for him and finding a solution that will work for everyone. I am proud of you. Sending our love as always.

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  6. I am so proud of you for calling the meeting out in the hallway. Jake said that the TPN is a fantastic way to go for now. He actually said that yesterday before I read this post. He said that it can not be a long term option because it contains sugar and can cause infection at the portal site. Jake loves the anti-depression meds and the G-Tube idea. You are so smart. Jake also said that a lot of these "boxes," the Doctors are checking off are simply hoops they are jumping through for insurance. (boxes being -trying again to place the NG-tube, art therapy checking to see if he is depressed.) So sorry this is happening, but I am so thankful you are there for him. We love you Mark.-Shelley Rose

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  7. Sorry to hear you're off FB for awhile, but I hope you're able to feel the support from here, too! I am glad he's in better spirits.You're a strong mom for stepping in and telling them what was what! Great job. <3 -Kirstie

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  8. Thank you for the update Wendi. Please tell Mark that I am praying for him.
    love, Aunt Susie

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  9. Wendi BillingtonJuly 7, 2015 at 11:20 AM

    Thank you all for your comments. It's like you're here with me, and the encouragement is helpful when the days get tough and lonely.

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  10. My comment apparently just disappeared into thin air. I don't remember what exactly I said, but it was along the lines of... Wendi I am so glad that you did not allow the powers that be to attempt an Ng tube, again. I am also glad that you told them exactly how their words and tactics were harming Mark. I think you have found a winning solution. Please have my brother hug you for me and then you can hug him for me too, and please hug Mark from his Aunt Karen. I love you all SO much.

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  11. Thank you for the detailed post Wendi - I've been distracted lately and not able to check so this is very helpful. Do NOT feel like you have to keep it short - use the space as you see fit - for your needs, for Mark's - and rest assured everyone will gladly read ALL of it.

    Poor Mark! I feel so bad for him. You are a fantastic Mom to understand what was really going on and advocate for him appropriately. Hospitals are so procedures-driven. The healthcare is amazingly good, but sometimes you feel like if you don't fit into the box then . . . They should have put something in the IV from the get-go. Every woman with severe pregnancy-related nausea is given that. Any kid who is STARVING will say I'M STARVING . . . lack of appetite is a sign something is wrong but is rarely depression in an otherwise normal kid - even a kid facing an amazingly difficult trial. Thank goodness you have access to therapists etc. Yes, G-tube all the way!!!! God bless you all!!!!

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