The week of the NG tube

We've been inpatient at the hospital six times in the last month. Last Thursday we went in for a fever, discharged Saturday night and readmitted by Monday afternoon. She wasn't allowed food until Wednesday, and even then it was chicken broth and jello only. Thursday her Thanksgiving feast was made of super-soft foods such as Talapia, chicken soup and jello in her hospital room. But you've never seen a child so thrilled with food.

This week was shaped by lack of real food. Grace chose her cartoons and movies based on if they showed food or not...and if food was presented, off the TV went. She was hooked up to a suction NG tube, so she spent most of this week coloring in bed and telling me how hungry she was.

I think I've been worn down just from the lack of sleep. The night normally looks like:

8:30pm Grace fights taking her meds. Finally does and goes to sleep
9:00 I resolve to go to bed early
9:30 Cleaning lady comes in and takes out the trash
11:00pm Grace has to go to the bathroom because they have her pumped with fluids and needs help
12:00am Grace gets a midnight does of oral medicine which she fights for 1/2 hour
3:00am Grace has to use the bathroom again
4:00 Nurse assistant comes to take her blood pressure and temperature
5:00am Nurse assistant comes to empty urine out of bathroom
6:00am Grace gets her morning dose of oral meds. Declares she can't go back to sleep
6:30am We're up and Grace is watching cartoons while we wait for her jello to arrive

After a week of this I just shut down...but in reality it's been more like a month of this with a few days off here and there. I'm so thankful that Chad offered to cover for me since he had time off work. I came home yesterday and played with Luke and had Thanksgiving with my family and went to bed early and took a nap today. I feel like a new mom.

It's probably just the lack of sleep that had me very emotional this week, but I think there's more to it. Thanksgiving made it glaringly obvious that our family was separated and because it's flu season, Luke couldn't even come up to her room to hug her. That was really hard on me.

Also I've felt very responsible for Grace's constipation. The doctors kept telling me to do this, and do that to help her and I assumed that I had failed since she kept getting hospitalized. We had a really nice Doctor who explained to me that GI Neuropathy isn't something that I could have fixed no matter how hard I tried and that it wasn't a failure on my part. I burst into tears and she hugged me for a while.

Later that day Grace had art therapy and her therapist talked to me about Grace maybe not expressing her needs or wants. Normally I'd say this isn't common but it worried me. I have such a hard time expressing my needs or voicing my pain. I'm always fighting to be positive and sometimes I don't allow myself to hurt. I worry that I'm forcing this on Grace too.

The therapist suggested that I also work on feeling more while at the hospital. But I can't. When I'm there, I'm "MOM."  I have to be strong because I don't want Grace to have to be the strong one. And even if I were to be scared or sad or angry or any other emotion, it doesn't change anything. Even if I'm mad enough to swear that I have to pin my daughter down for yet another NG tube, I have to still pin her down. I felt furious that I told her if she worked hard to take her laxatives she wouldn't have to do this again, but it didn't stop it. I felt like I had betrayed her. But being angry or sad or scared doesn't stop it. I still had to hold down my screaming daughter while hoping that lots of hugs after might somehow compensate.

Sometimes I want to be forcefully happy because it's the only thing I can actually control and also I want to piss off the "bad." Sometimes I want to be happy because life is continually hard lately and I'm scared I'm going to be a continually sad or angry person. Sometimes I'm scared to sad will take me over and I won't be able to escape it. Sometimes I'm scared being sad will make people not want to be around me. And most of all, I don't want Grace to see me sad and think that she's making me sad.

So I bottle it up, at least while we're in the hospital. The problem was I was so tired that it kept leaking out. And though I fight for faith in times like this, I remember all the ways He has protected us and brought us this far.

Now that I'm home the pain is still here, but bearable again. And now that I can go into my own room at night I can deal with the pain without worrying I'll wake Grace up. With some of the tears gone there's starting to be room for genuine happiness again. Luke has been providing laughs in excess. Grace's NG tube is out. That makes me very happy. Grace and Chad are on their way home makes me extremely happy. The uncertainty is hard, but I'm glad the doctors are getting better at figuring her out. I know that we can be back in the hospital again at any time. Day by day I have to trust God to get us through it.

And I think happy will be my natural state again soon and fear and sadness will be the exception.

P.S. There is a study at CHLA that is trying to see why the chemo Vincristine (the very one that started all this trouble for Grace) effects some children more than others. They have a theory that it might have a harder time exiting the body for some kids, thus making their exposure to the drug much higher. They think this may have been true with Grace as she's had SO many reactions and side effects including not being able to walk, the constipation, GI neuorpathy and possibly even the mucisatis. These kinds of studies could make a HUGE difference for children getting chemo. These are the studies that only happen with mostly private funding. If you're looking to donate to GivingTuesday, please consider childhood cancer research. Thanks.