Update from Keith: August 23rd, 2008

Taylor is still in the hospital. She's been here for 9 days now. She will almost surely be here through her next chemo which is a week from now (8/29 is the scheduled date) so this will be her longest hospital stay since March.

The good news: Taylor's fever has finally gone. It broke on Tuesday, was spotty for the next day after that but she hasn't had one since Wednesday. She is no longer on anti-fungals and the doctors have taken her off the most powerful of the antibiotics. Thus, they were able to take out the extra IV they put in Taylor's arm on Saturday night to handle all of the meds, food, and blood products she needed. She's back to just geting everything through her port.

The not-so-good news: They imaged Taylor's tumor for the first time in months this week. She had a CT scan of her head neck and chest, with and without contrast. A resident delivered the news: the radiologist's report shows Taylor's tumor is shrinking except on the left where it is getting larger. This was devastating news. After all we've put Taylor through, for her tumor to continue to grow is unthinkable. Later in the day, her oncologist came to see us and told us that he looked at the scans himself and feels that the radiologist was either wrong or dictated the report wrong and that in his opinion the tumor is clearly shrinking and the scans are extremely positive. Needless to say, this version sounded much better and we're going with it for now although we will seek a second opinion once Taylor is discharged, just to be safe.

We spent much of the latter part of the week in consultation with various doctors and nurses about what to do concerning Taylor's feeding tube. Since she threw it up last week, she has been geting feeds intravenously which is a temporary solution. We need something more permanent before taking her home so we can deliver her meds. The obvious answer is just to give her another NG tube, but we prefer just a G tube which goes from her abdomen into her stomach.

We've thought for a long time that we would go with a G tube once she finished her treatments. For one, she'll no longer have a tube taped to her face which was a source of self-consiousness for her. It was also a source of constant worry for us as it sometimes caught on things and bulged out whenever she threw up (which continues to be often). Taylor is wholeheartedly behind the idea of not having an NG tube anymore.

Taylor's oncologist agreed that a G tube is the way to go. Other doctors aren't so sure. She'll need surgery and there was some question if she would have to undergo a number of studies before the surgeons would agree to do it. They've evaluated her a couple of times now, and we are told that surgery will do it without subjecting her to whatever studies they would otherwise want. If that changes or any problems come up, Taylor will get another NG tube instead. Right now, the G tube surgery is scheduled for Wednesday so hopefully she'll hold up until then.

The last week has felt like it did in the dark days of January, February and March. Taylor's been mostly sick and entirely in the hospital. She's now better but we'll still be here until the next chemo (she has to stay here until she gets a feeding tube and since that's not until Wednesday, she'll have to recover here until that Friday's chemo). It's been a hard week and next week will probably be little better. At least she'll hopefully feel better.

Update from Keith: August 17th, 2008

Taylor is a very sick little girl. She has been in the hospital since early Thursday morning. Last night (Saturday night; technically Sunday morning), Taylor was transferred to the Pediatric Intensive Care Unit (PICU). When we got there, Taylor turned to us and said, "I'm scared."

It's a scary place. For some patients, the PICU represents the last stage of a declining life. Taylor arrived with an extremely elevated heart rate, one lung full of infection, and a fever so high it maxed out the thermometers the hospital uses. We were scared, too.

Taylor's fever began at 4 am on Thursday morning. I had to fly to Phoenix later that day, so my Dad went down with Kris to the Emergency Department. They spent most of the next 12 hours there. Taylor's fever remained strong despite doses of antibiotics. This is abnormal for Taylor; generally her fever recedes not long after she gets antibiotics and fluids. Nothing seemed to work this time.

That night, my Mom stayed with Taylor. Early the next morning, Taylor threw up violently. So violently that she threw up her NG tube. This is a significant problem. Not only was the NG tube the only source for Taylor's nutrition, but it is the only way to deliver oral medicines to her. With her fever continuing to rage, she needs Tylenol through her tube. That has not been an option since Friday morning.

Taylor's fever consumes her platelets voraciously. Her platelets have been far too low to attempt surgery for placement of a new tube. I can't say when it will be replaced. For now she gets nutrition intravenously. Intravenous feeds are a long term problem but a short term solution. Hopefully her platelets will improve and they can replace her tube this week.

After her fever continued unabated Friday, the doctors took a chest x-ray on Saturday. I spent most of Saturday with her. For most of the day her fever exceeded their ability to measure it; the thermometers they use to record her vitals only go to 40.5 (104.9) and it recorded that level for her nearly every time. We used cold packs and cold washcloths to try and cool her off. She suffered chills, though, which made that difficult. While her trunk and head are burning up her extremities are cold to the touch. Her feet, especially, have been cold. They gave her medicine to try and reduce her chills. It worked intermittently.

She went back on Dilaudid for her pain starting Friday. She has the ability to push a button every 30 minutes which will deliver her a dose of Dilaudid. She's clearly uncomfortable all of the time because of her fever, but the Dilaudid has seemed to help her head pain.

When the chest x-ray came back on Friday night it showed one lung with considerable infection. Her platelets are way too low for anyone to send a tube into her lungs to identify what infects her. They believe it to be fungal so they have started her on anti-fungals. These fun drugs have symptoms not unlike chemo. Following that diagnosis, it became clear that she would need anti-fungals, red blood cells (to help her infected lung carry oxygen around her body), platelets, antibiotics, and close monitoring because of her fever. The sheer number of nurses needed to care for Taylor (she had three for most of the evening Saturday), combined with how sick she was necessitated the trip to the PICU.

In the PICU T developed diarrhea (who knew that was possible even without anything going through her gastro-intestinal tract). This just added further insult to injury.

Taylor turned a bit in the PICU, though. Enough that they sent her back upstairs earlier today. She's even had a few readings that are not considered feverish. Her heart rate has slowed from a resting rate in the 160's to the 110's where Taylor has often been during her cancer. She is still uncomfortable. This has been really hard for her.

Both Kris and I spent Saturday night at the hospital. I stayed by Taylor's bedside; Kris went to a parent room and caught 3 and a half hours of sleep. I slept during the day and went back to the hospital. Kris is spending the night there again tonight.

Poor Charlie has been lost in this. It breaks my heart. Every time I come home I get huge hugs. When I look to leave, he clings close by hoping I'll stay. I'm sure it's even worse for Kris who's Charlie's favorite. He's off of pre-school the rest of the month. It's going to be hard for him.

I have no idea how long Taylor will be in the hospital. I've heard 10 days is a possibility. That would take us virtually to the next scheduled chemo. I just want her to get better.

Everything had seemed to be going so well. This is a terrible reminder of what can happen. Everything feels like it did back in January, February, March. Hopefully they are right and this is a fungus which the drugs, along with her white blood cells (which should rebound soon), will resolve. I can't consider the alternatives.

Update from Keith: August 7th, 2008

I purposely waited a week to update the blog. I didn't want to post another update when I was still cranky about an experience in the Emergency Department. No more "circle of hell" blasts or poking fun at doctors. Unfortunately, waiting a week hasn't done the trick. I am still cranky.

Last Wednesday Taylor got another fever. She's had a lot of fevers this cycle. The good news this time was that she actually demonstrated an ability to get a fever before 11:00 at night. Even better, it was 6:15 when Kris discovered Taylor's fever. She called me at work and I agreed to meet them at the hospital. Thus began another Emergency Department odyssey.

Discovering Taylor's fever so early in the evening seemed a really good thing. Whether she needed to be admitted or could come home, things seemed teed up just right for us to be able to get a decent night's sleep. If she would be admitted, hopefully we could accomplish that early, by 10 or so, and one of us could spend the night with Taylor and sleep in her room upstairs and the other could go home. Likewise, if she was sent home, hopefully they could treat her with a course of antibiotics and discharge us before 11 so we could be in bed by midnight. Either way it seemed like events were timed perfectly to allow us a good night sleep. We were so confident, we didn't even bother with dinner, figuring we would have time to eat later. I was so confident that things would unfold smoothly for once that it bordered on hubris.

I arrived at the hospital just before 7:30. My Dad drove Taylor and Kris down and I met them in the hospital driveway. I lifted Taylor from her seat, Kris lugged our stuff out of the back of the car and we entered the hospital. My Dad went back home to pack for a trip he and my Mom were taking the next day. Charlie spent the night with my brother and sister-in-law.

Things went pretty smoothly at first. We quickly gained access to the triage area. Having been there twice in the last week or so, the triage nurse recognized us and immediately evaluated Taylor's condition (ahead of a few other kids in line). Taylor's fever raged. I think it was in the high 39's (103 something). That didn't seem good. The triage nurse finished processing Taylor, administered some Tylenol to quell her fever, and admitted us to the Emergency Department.

I immediately recognized the room she was assigned. I had spent 30 hours or so with Taylor in that room back in February or March. That was a miserable trip where we were stuck waiting for a bed upstairs and Taylor just felt awful. There's no parent beds (or even comfortable chairs) in that room, so I caught fitful minutes of sleep when I could. I remember trying to watch a DVD on the TV in the room and it kept stopping after each 30 minutes or so. At least now there was a sign in the room explaining why: "This DVD player overheats halfway through any movie. Please turn off the TV, wait a half-hour and resume playing to finish your movie." (The sign would be more accurate if it said that the DVD player overheats every 20 minutes, but whatever). Being back in this room was no happy reunion.

Not long after we got settled, the resident came in. She was very nice. She remembered having seen Taylor the Thursday before (when my Dad and Kris brought Taylor down and she was admitted for the weekend). That made things a lot easier. She took a history without asking anything about Kristin's pregnancy or Taylor's birth (this was a real breakthrough; I'm starting to think they read the blog). I explained that whether she would be admitted or treated and released, I wanted the decision to be made sooner rather than later for the comfort of all of us, including Taylor. The doctor agreed with that plan and left. She ordered a cbc, some antibiotics and some fluids for T.

The first step in the treatment plan involved the nurse accessing Taylor's port. Because Taylor had just been released from the hospital on Monday night (2 nights before), her port proved difficult to access. (For whatever reason the nurses always seem to have more trouble accessing her port if she has recently been de-accessed; I don't know if there is scar tissue that forms or some other explanation but this has been our experience). The nurse got the needle in, was sure it was in the right place, but there was no "return," i.e. no blood came flooding out as he pulled out the stopper in the syringe. His solution was to rotate the needle in Taylor's chest and keep trying to get a return. He kept at this solution for 5 minutes or more despite Taylor's crying and discomfort. Finally, we convinced him that he would have to pull it out and try again. He agreed and called another nurse in for the second try.

The second try worked. Taylor was very brave and hardly flinched even after all of the pain from the first try. She was just relieved to have it finished. It can't be fun to be feverish and have people poking needles in you, twisting them all around, pushing them in and out all the while propping her up and keeping her from getting comfortable. I was really proud that she was so good about the second try.

They took her blood and it came back that her white counts were actually pretty high for her. They had gone from 780 on Monday to 9. To we laymen that sounds like a sharp decrease, but to medical professionals it's a substantial increase. It turns out that in medicine 780=0.78. I continue to contend that medical practitioners create a ridiculous jargon to prevent the rest of us from making meaningful contributions to our care (or the care of our loved ones in this case). Changing around numbers just seems to me another way to accomplish this. The upshot of her new count was that she was not neutrapenic. This meant that they could release her after completing treatment.

Thus, they gave her a course of antibiotics. They also gave her a "bolus" dose (more ridiculous jargon indicating a larger than normal dose; next time I go to McDonald's I'm going to try ordering a bolus Diet Coke and see what happens) of fluids. Typically when Taylor is in the hospital she gets IV saline (actually I think it's potassium chloride now that I think of it but it's some type of clear fluids that comes in a 800 cc bag) at a rate of between 60 or 70 cc's per hour (this is true if she is not on her feeds; if she is on her feeds she gets hydration from that as well so they turn down the fluids). The bolus they gave her was 400 cc's per hour and they let it run the entire hour.

By the time she finished the bolus and the antibiotics, it was around 11:00. We were ready to go. All that remained was taking Taylor's vitals, getting the doctor to order the discharge, and de-accessing her port. The nurse came in to take her vitals so the doctor could order the discharge. Taylor's blood pressure was low. Moreover, her heart rate was elevated (it was in the 120's) and her fever was back after being gone for a few hours. These were worrisome signs.

In retrospect, I should have spoken up at this time and demanded admission. I didn't. We were focused on getting home. It was late. The path of least resistance was to listen to the doctor's orders and follow them. I stumbled down that path.

The doctor took a look at Taylor's numbers and ordered another bolus. Keep in mind that this did not happen instantaneously. There are a lot of kids in the ED on any given night. Some have traumatic injuries which obviously take precedence. By the time the nurse learned that the doctor ordered another bolus and actually started it going through T's veins, it was midnight, or maybe later. We kept the lights off in the room as Taylor slept on the exam table (Kris knows by now to bring a pillow from home as they lack pillows in those rooms). Kris and I sat in the silent dark as the fluid flooded in to Taylor's veins. I also watched Return of the Jedi in 20 minute bursts (this is all the overheating DVD player would allow). As the hour wound down, I actually ejected the movie from the player and prepared to go home. It was late. At least we could still salvage some sleep from this night.

When the bolus finished we turned off the alarm on the pump and let the nurse know. It took him a while to talk to the doctor. The nurse knew we wanted to leave and he did the best he could. Finally, he took her vitals again to prepare for discharge. Uh-oh.

Taylor's blood pressure was a little better (after all they just pumped in 800 cc's of volume into her veins over the course of a few hours) but her heart continued racing. Her temperature was borderline. The resident came in. She wanted to give Taylor another bolus. By now it was after 2 in the morning. Another bolus sounded ridiculous. I put my foot down and said no way. I told the resident that I didn't think treating her with another bolus was a good idea and that I thought she should be admitted. The resident didn't know what to do. She summoned the attending.

The attending came to see us for the first time that night. He started off saying something to the effect of, "I'm here to convince you why getting another bolus and leaving tonight is the right course of treatment." His arguments essentially were that the bolus would work and she'd be able to go home rather than stay in the hospital.

None of this made sense to me. Is there a class on stubbornness in medical school? The bolus didn't work the first time, didn't work the second time, and now they thought it was some panacea the third time? I didn't have to go to Harvard to figure out that if it didn't solve the problem the first two times, it wasn't going to work the third.

I'm trying to get better about calling them names or bad-mouthing the ED. I have come to realize that the ED at CHLA is a fabulous place to bring your child if he or she has a broken bone, or a traumatic cut, or for any of the things that parents want to bring their kids to an ER. It is not a good place to bring your kid if she has rhabdomyosarcoma.

Wasn't Einstein's definition of insanity, doing the same thing over and over again and expecting different results? There, I didn't say it; Einstein did. Einstein called the ED doctors insane. Treating her with a third bolus was insane (again this is Einstein saying this, not me).

I had a spirited discussion with the attending wherein I indicated that I thought Taylor was better served by admission to the hospital. She could move upstairs to 4W where the nurse and doctors are used to treating kids who present her symptoms and who have similar problems. Moreover, they clearly felt that she couldn't leave the hospital yet (her heart was racing) so all would be better off if she spent the night upstairs where they could monitor her carefully and ensure that she was OK. I also told him that I thought treating her with an additional bolus was ridiculous. (I didn't mention what Einstein said about him.)

The attending was in the rather bizarre position of explaining how much better off Taylor would be by not spending time in his hospital (where she spends virtually every weekend anyway). We went back and forth for what seemed like a long time both reiterating the same points: he claiming that a third bolus and discharge was the answer, I maintaining she should be admitted. Finally, I told him that I couldn't admit her myself even though I thought it the best option and that clearly he wasn't going to admit her and I could not make him do so. Therefore, I told him, let's just get on with it.

Kris spoke up then. Earlier in the night they had placed leads on Taylor's chest to monitor her heart and respiration. Since they cited her elevated heart rate as the need for bolus three, Kris felt T's heart should be back on the monitor. The attending agreed. That's when he saw that Taylor's pulse ox was hovering around 90. That's low. Doh! Guess what, she needed to be admitted (who's your daddy, now?).

Still, the wheels turn slow at the hospital. They started bolus number three. The attending was called away and I think too scared to come back and confront me as events had proven me right. Instead, he sent another resident over to take a history to prepare for T being admitted.

While she didn't ask about Taylor's birth experience or Kristin's pregnancy with T (another small victory) her questions were mostly asinine and reflected her failure to read even a sentence of T's file. An example: Her: "She has a regular diet, right?" Me: "If you call Peptamen Jr. through an NG tube a regluar diet then yes." Her: "Oh, I'm asking about the food she eats through her mouth." Me: "She hasn't eaten food through her mouth since January." In fairness, I think she had already heard that I had faced (in the 80's meaning of the word) the attending and she seemed cowed the moment she began talking to me. To me it was just another useless ED Taylor medical history. It's the rhabdomyosarcoma, stupids. (That's Carville talking; again not me).

They also took a chest x-ray (after all, what's a trip to the ED without a chest x-ray). This time it was good that they did; it showed that Taylor might be developing pneumonia in her lungs. This just furthered the need for admitting her.

I finally left just before 5. Taylor and Kris were still in the ED waiting to go upstairs. I confirmed that someone would assist them in transporting upstairs before I left, but I had to go home. I had to get some sleep before work. When I finally went to bed just before 6 I had been awake for 24 hours (it was the same for Kris at the hospital). I spent nine and a half of those hours in the ED. My initial giddiness at discovering Taylor's fever so early had long since vanished. It merely served to subject us to further insanity. (Einstein really should stop that).

The next day the hem/onc doctor who saw Taylor mentioned that treating her with so much fluid probably exacerbated her condition, not helped it. I'm not surprised.

Taylor spent the next few days in the hospital, including last Friday which was Kristin's birthday. Taylor was discharged midday on Saturday, though, so we finally got to spend a weekend (or at least most of a weekend) at home as a family. This week has mostly been good for Taylor. Her mouth is a little worse than usual. The doctor noticed a huge scab at the back of her mouth when she was in on Tuesday. She is throwing up a bit more than usual for a third week, but it seems to be due to mucus in her throat rather than any nausea. Her spirits have been great, though.

Friday is another chemo day. Those are hellish nights. None of us look forward to it. Another child died this week. It's a sobering reminder of the fiendish nature of Taylor's disease.