Update from Keith: March 27th, 2009

Over the last four months, I have sat down many times to update Taylor's blog. Each time, a flood of agonizing memories from last year prevented me from continuing. After a while, I began to put it off; it was a way to avoid bad memories. Worse than the memories are the emotions from those timeless days and nights in the hospital. I can still feel them when I think back to that time. It was not a happy time.

I recognize, though, that I have let down all of the readers of Taylor's blog. For that, I apologize. I will now update the last four months.

When last I left off, Taylor returned home from the hospital on my birthday. It was truly the best birthday present I ever had. She spent the remaining weeks in November still in a cast and beginning to re-acclimate to life at home after spending nearly all of the past 3+ months in the hospital.

In mid-December, I received a call at the office on a Friday evening. It was Kris. Taylor had a fever. At first, I was annoyed. I was already starting to transition mentally to Taylor not being sick. What would a fever matter since she was no longer neutrapenic? It was Friday night. I had no interest in going to the Emergency department at CHLA on Friday night (of course, one common theme of the blog is my lack of interest in ever going to the emergency room--Friday night or otherwise).

Kris and I discussed not doing anything about Taylor's fever. Maybe it was transitory and would be gone later. Who wants to go to the emergency room if the fever doesn't even last? Maybe we could just let her sleep and take her to the hospital Saturday morning if the fever remained. We also worried that bringing her to the hospital so close to Christmas would force her to spend the holiday in the hospital.

Fortunately, reason vanquished convenience. I came home from the office, picked up Taylor and Kris, and headed for the hospital. It may have saved Taylor's life.

When we got to the emergency department and answered all of their ridiculous questions about Taylor's history, her blood pressure began to crash. Pretty soon, the staffing in her room in the emergency department went from one nurse peeking in on us periodically to having three nurses and some doctors in there constantly. At one point her blood pressure was 70 over 19. I don't remember it getting lower than that, but it didn't rise appreciably, either. To boost her blood pressure, the nurses were literally squeezing bags of fluids into Taylor's port as fast as possible. Nothing seemed to work. Finally, Taylor was sent back to the PICU. At least that's better than the Emergency Department (they have special rooms with beds for parents).

I'm sure that for most parents the ICU is a frightening place. For some kids, it is the last place they go in the hospital. I remember the fear I felt the first time Taylor went there. But, as she came and went and had subsequent visits, I began to realize that as sick as Taylor was, she was often the healthiest kid in the PICU. She would go from being the sickest kid in whichever ward she came from (usually 4W, but on this occasion the Emergency Department), to the most well kid. Somehow, trips to the PICU became oddly comforting as Taylor was no longer the sickest kid around. I felt like that on that December night when we brought her up to PICU. I knew they would have the answers and would be able to monitor her closely enough to ensure she got better.

Taylor turned out to have an infection. She had been colonized with Pseudomonas when she was neutrapenic weeks before and it never entirely went away. Apparently it built up again and she got a fever and then her blood pressure crashed. All from the infection.

Taylor remained in the PICU for a couple of days and was released upstairs to the fifth floor. For the first time in months, Taylor had a roommate. Recall that she had picked up a Vanco-resistant bug at some point. The hospital isolates all such patients to keep it from spreading. This time, there was another kid with a Vanco-resistant bug, so Taylor got to be her roommate. I had forgotten how miserable it can be to sleep in those convertible chairs in the hospital. That trip reminded me. Taylor received IV antibiotics for about 10 days and was discharged to come home.

Taylor stayed home for a week or so and was back in the hospital. Same problem. She had a fever and it was from a pseudomonas infection. She needed more IV antibiotics. At least she spent Christmas at home.

Taylor needed a long course of antibiotics. In the past, we always resisted giving her IV drugs at home. We worried about infection or doing something wrong. It's like when they say, "Don't try this at home," on TV, "we're trained professionals." We felt the trained professionals should administer her IV drugs at the hospital. This time, though, they wanted the antibiotics to take weeks. It made no sense to leave her in the hospital for weeks if we could do it at home. So, she was discharged after a couple of days and we continued her antibiotics regimen at home, delivering a dose over a 30 minute period every 8 hours.

New Year's Day was especially welcome this year. Kris and I had our 20 year anniversary (from when we first started dating). More importantly, Taylor stayed home from the hospital. She had an MRI the day after USC pummelled Penn State in the Rose Bowl. The MRI results were just fine. She still has a small residual mass (this was expected) but as long as it does not grow, everything should be fine.

We (and when I say we, I mean Kris) adjusted to the IV antibiotics regimen. The drug came in huge syringe-like tubes with small, narrow tubing coming out of it that connected to Taylor's port (which remain accessed). We were provided a syringe pump that would pump the drug through over 30 minutes. Only it rarely seemed to work. The damn thing would beep and stop working every 30 seconds some times. Other times, it would go through all 30 minutes without stopping at all. It drove us (and again by "us," I mean Kris) crazy with its unpredictability. Eventually we (Kris) recognized a correlation between the temperature of the antibiotic and the pump's ability to function properly. The antibiotic needed to be stored in the refrigerator, making it fairly cold. If we let it sit out for about a half-hour or so before pumping it into Taylor, the pump seemed to work much better. It certainly wasn't as easy as having nurses give the drugs in the hospital, but it allowed Taylor to be home. That made it well worth the effort.

Also in the new year, Taylor resumed regular school attendance. Taylor's stamina is still limited but she can manage most of school day. So, she gets to school around 10 am and stays until school finishes just before three. Taylor is so happy to be back at school! She loves her school and has made new friends. She is going back to kindergarten rather than moving to first grade. As she missed most of the school year last year, it made more sense to have her go back to kindergarten. Kris tapes Taylor's g-tube to her body so it does not get in her way at school. In fact, the other kids probably have no idea that she has one. Being back at school gives her a chance to be a regular kid again. We're ecstatic that she has been able to do so.

Taylor still has her g-tube and gets the majority of her nutrition through it (usually in the late afternoons and overnight). But, Taylor has also started to eat again! After almost a year of not eating, Taylor now eats again. She tends to chew her food for a very long time. She doesn't always swallow her food (preferring to spit it out on a napkin). In the beginning, she did not seem to swallow anything. Now, I would say that she swallows more than she spits out. We are extremely proud of how hard Taylor is trying to eat food again.

We had an occupational therapist evaluate Taylor's eating. We were concerned that her failure to swallow was the sign of medical problems. The therapist's conclusion, though, is that Taylor can eat and swallow with no problem. Her experiences over the last year have simply made swallowing a difficult mental proposition. Time and practice will teach Taylor that she can swallow food without throwing up or feeling pain. As long as she keeps trying as hard as she has, it will come.

Taylor received IV antibiotics until mid-February. By then she had received enough to hopefully deal with the pseudomonas. She needed to be off then because we were off--to Disneyworld, courtesy of the Make-a-Wish foundation.

Taylor had wished for Disneyworld last year when she was still in treatment. We wanted to go at a time when she could enjoy it so we asked to do it this year when we knew (hoped) she'd be feeling better. So, the four of us went to Disneyworld for the week of President's Day.

It was a fantastic trip. We stayed (at Taylor's request) at Disney's Polynesian Resort. We went to one or more of the Disneyworld parks all but one day of the six we spent in Orlando. We had a pass which allowed us to use the fastpass entrance at each ride. Thus, we rarely waited in any significant lines. Taylor was too scared to ride Pirates of the Caribbean, the Haunted Mansion, or the Twilight Zone Tower of Terror, but Charlie agreed to ride each of those with me (he liked Pirates, he liked the Haunted House, he's never going on the Tower of Terror again). Taylor did go on Space Mountain and Big Thunder Mountain (she liked Big Thunder Mountain better). The kids' favorite ride seemed to be Test Track at Epcot. They had a lot of fun on that ride each of the many times we went on it.

Poor Kris could not participate in nearly any of the rides. Her pregnancy is 32 weeks now, then it was in the mid-20's (the baby is due on May 5 as Kristin's doctor has scheduled her for a C-section that day). Pretty much any of the fun rides have warnings that pregnant women should not ride. So, Kris had to wait around for us over and over and over again. She never complained about it.

Two weeks after we came back home, we went to Cal Poly Pomona where the Chi Omega sorority chapter was putting on a philanthropic event benefiting Make-a-Wish and specifically sponsoring Taylor's trip. Taylor got to meet the girls in the chapter and we were able to thank them for their efforts. Taylor enjoys being the center of attention, so I think she liked it.

Earlier this week, Taylor threw up at school and complained of head pain. It is the first incident she's had there since coming back. I think it probably scared everyone. She stayed home for a day and was back at school again. All seems fine again.

Complaints of head pain cause us significant worry. That's how this all started last year when we thought it was just a sinus infection. Her head pain from earlier this week went away, but my heart skips a beat every time she complains of it. I suppose it will for years to come.

Taylor will have another MRI on April 7. I'm sure I am leaving out some events from the last few months, but I covered the basics. The most important thing is that Taylor is happy, home, and healthy (or at least as healthy as she can be under the circumstances). Her speech is still difficult to understand, but probably will remain so until she has surgery to correct some problems in her mouth. Her walking is not perfect but it is much better than it was. Her eating continues to improve. Right now, things seem pretty great.


Kori said...

This is wonderful to hear; thank you for posting this excellent update. Tell Taylor that there is a little guy in Idaho called Sam who says prayers for her regualrly; this post will make him happy.

Heather said...

I'm so happy to hear what's been going on for the past several months. I kept hoping that no news was good news! I think about you guys often and wish you strength and happiness on Taylor's road to health!