This morning, I woke up at Shands Children’s Hospital in Gainesvile, Florida. Bleary-eyed and shrugging off sleep, I looked around from my pull-out chair of a bed, seeing Will sitting upright in his hospital bed, looking around for his iPod. I got up to help him and registered that it was about 4:30 a.m. The nurse had been in to take Will’s vitals about 15 minutes before. I must have sacked right out after she left, but apparently Will hadn’t.
With Will tended to, I looked at the sectioned-off, brightly colored white board on which our days are marked here in the hospital. What day is it? I checked my phone. Monday. It’s Monday the 26th. It’s Memorial Day. How long have we been here? Hmmm… I got here from Kansas City around 2:30 a.m. Thursday night, 10 hours after Will checked in here with Marty. It’s the fourth day.
The more I moved around, the more the weight of today’s decisions both pushed me down and rolled off my back. With the acceptance that we were going to spend today making choices, consulting again, and moving forward, I was both overwhelmed and relieved. Today, we would have a solid plan. It hasn’t felt this way for a week.
Last Monday, Marty called me at work, overcome and worried that Will had fallen down over the weekend. He seemed weak, not himself, and generally, “off,” Marty said. Of course, I rely fully on Marty’s reports to know what’s up with Will. When Julia, Will, and I moved to Pennsylvania after Marty and I divorced in December 2012, Will had the worst two weeks of his life. Marty came up to Pennsylvania, and Will was better right away. We decided to try letting Will live back in Gainesville with Marty, and over the last year and a half, unorthodox though it is (and through a second move for Julia and me to Kansas City) we’ve found that all four of us have flourished. We talk and Skype and text every day. We’re still a family, even if we live apart. It’s not ideal. It’s hard. Being separated from Will … Marty being separated from Julia … I don’t really have words for that. But we do what’s best for our kids, even when it’s not the best thing for ourselves. That’s parenting. The kids have both blossomed in single-parent households for different reasons, and so we’ve stuck with this.
But Monday, we were not talking about a flourishing child. Will, who has always had feeding challenges, had become increasingly narrow in his food choices. From his standard field of about 10 foods, he had dwindled down to eating five, then four, then three… Marty had been working hard, pushing foods, trying and trying and trying to get Will to eat. Finally, about two weeks prior to this call, however, Will had finally cut himself down to one food: gluten-free pretzels. When the choice is between having your child give himself a concussion banging his head on every available surface in protest of the foods you’re offering or letting him eat pretzels and at least knowing some food is getting in, you choose pretzels. Every day, every meal, Marty was pushing more foods, and nothing was getting in. Will had finally limited himself down to one thing.
I’ll be honest. I was mad at first. It was easy to blame Marty and be angry at him for letting this happen. But the truth is, Will would have done this if he had been with me, if we had all been together, if if if. This isn’t Marty’s fault. This is autism. And autism sucks.
Will, who is nonverbal and therefore unable to communicate nuanced issues such as mild stomach upset, may have narrowed his foods down for several reasons, the most likely of which, in no particular order, are listed here:
- Development of texture aversions
- Resurgence of oral hypersensitivity (issue from infancy)
- Resurgence of reflux (issue from infancy)
- Ongoing digestive distress, disease, infection, or other related problem
- Learned behavior lingering from a short-term digestive issue that has now cleared up
- Obsessive Compulsive Disorder resulting in a fixation on a single food
So Will and Marty headed to our pediatrician, who specializes in special kids like Will. I sat in by phone as they discussed the situation. Our very experienced autism specialist of a pediatrician looked at this child, hopping around her office like Tigger, and agreed that his food narrowing is a problem we need to address, but felt he was clearly in no immediate danger, and that the safe thing to do would be to draw labs and start looking for an underlying cause of his refusal to eat most of his foods. That was Tuesday. Wednesday, he had a great day at school. Thursday morning, Marty called and said, “Will’s potassium is dangerously low. He’s being admitted to the hospital.”
At that particular moment, my mom was en route from LA to visit Julia and me in Kansas City for Julia’s 7th birthday. So I had a nice 10 minutes picking her up from the airport, only to get to the car and tell her that basically, I was going to have to leave that night for Gainesville. We prepped. We went to Julia’s school for her annual IEP meeting. We did errands. I sat Julia down and explained, as simply as I could, why I was going to miss her birthday party. I packed. And then I left.
Three airports and one rental car later, I was rushing through the halls of Shands in the middle of the night, desperate to get Will in my arms. Even though it was 2:30 in the morning, he was awake, annoyed by all the tubes and beeping machinery. After about a half hour of snuggling, he fell asleep, and Marty was able to give me the full update.
Will had been admitted several hours earlier and they had run all new labs. Will’s potassium, upon admission (so a full two days after the last labs were drawn) was 1.6. If you’re like me and don’t know anything about potassium other than bananas have a lot of it, then this is meaningless. What I’ve learned is that potassium must be above 3 but below 5. Anything under 3 is bad. Under two is life-threatening because it can damage the heart muscle, causing heart dysrythmia, which basically means Will’s potassium was so low he was at high risk for a heart attack. He’s nine.
Will was on IV potassium, two bags in sequence, then a blood draw, then two more bags, then a blood draw, and so on, for two days until his levels were finally up to 3.2 and then 3.5. It was a long couple of days. In the meantime, we started giving Will syringes of protein powder mixed with rice milk. He continued to eat his pretzels and drink lots of water. He started to regain some color and perked up quite a bit. We switched to oral potassium and were told that if he could maintain his potassium levels for 24 hours on oral meds only, we would be released. That meant we planned to be heading home early Sunday, May 25.
So, why are we still here Monday afternoon? Well, throughout this ordeal, I have been pushing every resident and attending doctor to get us a GI (gastrointestinal) consult. They were very focused on Will’s potassium, and they seemed to think the feeding issue was entirely OCD/Autism-related. But I disagreed, as did Marty and our pediatrician. If it were OCD, he would have been more likely to fixate on what he was eating, not make changes. We felt it was much more likely that Will has (or had) a digestive problem or infection that was causing him distress, and the end result was that he cut out all foods that upset his stomach. So we advocated for a GI consult to help us look into the “why,” as opposed to band-aiding the situation and then finding ourselves back in the hospital when we get home and he’s still not eating.
After some long conversations with various pediatric specialists, we finally got our GI consult, which led to a consult with the Attending GI doctor. This doctor agreed with everyone else that we obviously need feeding aversion therapy (a months-to-years-long therapy process with a very long local waiting list), but he immediately pushed for what’s called a Gastrostomy Tube (G-Tube). This is a feeding tube that allows for food to be passed through a port on the abdomen directly into the stomach. It allows us to ensure that Will gets adequate nutrition to help him get well and be healthy while we go through the long process of teaching him to eat properly.
This is where I lost it. The GI people walked out of the room, and my friend, Sharon, who had been in the room with us, stayed with Will while Marty and I walked into the hall. I lashed out at Marty and collapsed into tears. Marty sat on the floor and then ran into Will’s bathroom to throw up. A nurse sat with me and handed me tissues while I blamed myself for everything from Will’s first stubbed toe to the blood draw needle bruises on his little arms.
I walked inside and sat with Marty. We let ourselves have our 5-minute pity party, and then we moved on.
A G-tube will give us some breathing room. It will allow us to know that Will has adequate nutrients and is getting healthier while we, in a non-pressured way, work with him and the therapists toward the goal of getting him to eat a proper diet of whole, healthy foods so that he can get rid of the G-tube. This will likely be a 6-month to 2-year process.
The next week will be hard. Will’s surgery is scheduled for Tuesday, May 27th, 2014. In another life, that would have been our 13th wedding anniversary. The 12th anniversary of buying our first house. The day Will got a feeding tube.
We are in for a very long night before the dawn will break. But this morning, when I realized this was the fourth day, it sounded so biblical. On the fourth day He… huh…what did He do on the fourth day? I had to look it up. And what do you know? Apparently, on the fourth day, G-d created the day and the night:
14And G-d said, Let there be lights in the firmament of the heaven to divide the day from the night; and let them be for signs, and for seasons, and for days, and years:
15And let them be for lights in the firmament of the heaven to give light upon the earth: and it was so.
16And G-d made two great lights; the greater light to rule the day, and the lesser light to rule the night: he made the stars also.
17And G-d set them in the firmament of the heaven to give light upon the earth,
18And to rule over the day and over the night, and to divide the light from the darkness: and G-d saw that it was good.
19And the evening and the morning were the fourth day.
So this is night. It feels like a days-long, everlasting, eternal night. But it isn’t. Day is coming, and things will be better.
My mother, who has been incredible, making Julia’s birthday a smashing success and keeping J busy and happy while this is all going on far away from her, will be bringing Julia to Gainesville before heading home to LA. Our dear friends, the Pirkles and Aschers, are looking out for our dog- and child-care needs, and my amazing girlfriends here in town are setting up a meal rotation with an online calendar for us while we are in the hospital and as we get settled back in at Marty’s apartment for Will’s recovery period. The phenomenal team at my office has been above-and-beyond supportive on both a personal and professional level, and my KC peeps have been so lovingly supportive and solicitous. CARD at UF is helping. Our families are behind us.
Marty and I appreciate your many calls, IMs, texts, and other messages. We are doing our best to read all of them. Please understand that our days are a constant blur right now, and while we truly are so thankful for your notes of encouragement, we aren’t able to respond individually to everyone. We are not ready to hear lots of stories about other people with G-Tubes, but we are certainly looking for resources and would appreciate emails with any information you might have. We will be updating this blog to keep you informed. Thank you.