An Apple 3 Times A Day? (D+39)

“An apple a day keeps the doctor away.” - Benjamin Franklin

Elise hasn't been officially discharged after the line infection incident, but she does get to come back to the apartment. However there are strings attached.

As I mentioned in my previous post, they removed her central line last Friday (D+35) and confirmed that it was infected with S.Aureus. They put her on some IV antibiotics which have cleared the infection and she's feeling great. But...she needs to stay on the IV antibiotics for 14 days following the line removal (ie last Friday). 

They tried to work out an antibiotics that would allow us to stay at the apartment and only come in when the infusion was scheduled. Initially they used a really strong antibiotic that was only required once every 24 hours. It would have been perfect except it started to elevate her liver enzymes significantly. So they've fallen back to a better tolerated med, but it's required 3x daily.

None of us, especially Elise, want to be at the hospital for the next week and a half, so we negotiated an IV schedule that will allow us to get some sleep between sessions. But it will mean 3 trips daily to NIH until the course of meds is done.

Elise was pretty upset with all the changes. She really wanted to get out of the hospital with no strings attached. But it's not to be.

The good news is that she's feeling great, eating great, and she's not showing any signs of an infection any longer. When we got home today she also had the surprise of a care package from friends at home. I'm not sure if she truly likes the big-eyed Ty plush animals, but she knows they creep me out so it was definitely a hit. Debra and Darla thanks for putting a smile on her face. Also all the arts and crafts items she's received are going to good use.

Float Like A Butterfly (D+35)

"If you even dream of beating me you'd better wake up and apologize." - Muhammad Ali

They managed to culture the bacteria that has infected Elise and it's Staphylococcus aureus which is a common bacteria on the skin and respiratory tract. They suspect that her central line was the point of infection so they decided to remove it. It's a minor surgical procedure to remove it and they wanted to do it yesterday but by the time they'd decided Elise had already eaten lunch, so they couldn't put her under until today.

So this morning they removed the suspect central line and put in a couple peripheral lines (in her wrists) so that she could continue to get IV antibiotics and get blood tests, etc. She was excited to get "happy juice" and the surgeon got a good laugh from things Elise said while she was going under. When she woke up Elise told me her hand wraps looked like a boxer's.

Her body temp continues to oscillate from normal to fever level and back again. And her liver function tests have crept back up again. Which all means she's a sick girl even if she's claiming to feel well. One clear way to tell she's sick is that she's napping and her hunger level is down.

So it sounds like Elise will stay in the hospital for a while until this infection clears. She isn't very happy about it even though we'd warned her this sort of thing was likely. It could have become very serious quickly and we're all real thankful we took her in when we did.

So Becky and I are back to the swapping nights at the hospital routine. Elise got another transplant room and its the mirror image of the one she was in before, so we're doing everything backwards. Thank God there is enough light that we don't end up in the hallway during the late night bathroom trips.

Paging Dr. House (D+34)

""We treat it. If she gets better we know that we're right." - Dr House, character from the series "House"

I have a long history of feeling too good about things. I should know by now that if my happy meter rises above a certain point then the universe is going to balance it out somehow. In this case, Elise is back in the hospital.

We'd been off to a good start out of the hospital, but then she woke up Wednesday morning with significant pain in her back like a muscle cramp. She was a little warm and the thermometer registered a slight rise in temp but nothing approaching the "call the team" level we'd been briefed on.  I gave her some Tylenol, rubbed her back for a while and she went back to sleep.

About 3 cups of coffee and some mindless web surfing later (for me), Elise woke up again nauseous, a little dizzy and with a slight headache. Still no significant fever and the back pain was gone, but we called the hospital anyhow and headed to the NIH Pediatric clinic to have her checked over.

They checked her vitals and the only unusual thing was a significantly elevated heart rate. After repeating the symptoms 10+ times to a steady parade of medical personnel, they drew blood, put Elise on IV fluids and sent us to the day hospital while they all conferred. Once in the day hospital they started broad spectrum antibiotics and continued the fluids.

Eventually they decided to readmit Elise to continue to the IV antibiotics while they waited for the blood cultures. By the time they'd decided this she was feeling fine and, of course, wasn't very happy about being back in the hospital.

Becky volunteered for the first night shift (not even a paper, scissors, rock contest!). She texted me saying one of the Drs had dropped by and said the preliminary culture indicated a bacteria and that the IV antibiotics ought to cover it. We don't know much more than that, but the Hickman catheter is a likely point of entry for bacteria and such. We should hear more today. 

Elise is obviously feeling well because she's texted me a McDonalds food order. A good sign from lots of different aspects.

Forecast is Hot and Sweaty (D+32)

"When eating an elephant take one bite at a time." - Creighton Abrams

They did formally discharge Elise yesterday from inpatient status. She's actually doing well enough that they are trying a Monday and Thursday outpatient check in instead of the everyday we'd expected to hear. So if things continue to go well she'll need to get blood work on Monday mornings at 7:30 am and Thursdays at 9 am. If there are any other appointments then they'll schedule them then.

We've coordinated with the tutor and she'll meet with Elise twice a week until school starts and then we'll transition to a 2 hour per day routine.

We did get a long talk about planning to stay until D+100. They said we'd really be getting antsy by D+80 but that we really do need to stick around because their experience shows that medical issues do arise.

Elise is doing well enough that I think we're all antsy now. Not sure what we're going to be like at D+80 or D+100!

As for medical stuff the ophthalmologist said Elise's vision blurriness probably isn't coming from any permanent physiological changes to her eyes. Probably just a short term reaction to the conditioning process. Chemo therapy can apparently affect the control of focusing much like happens as we age. So we bought Elise some readers for the short term and she'll get checked again in a few weeks.

Her blood levels continue to look good and her liver function continues to improve (she had elevated liver function counts on her recent blood tests).

Today we went to the National Harbor area for a while. It was pretty steamy but mostly overcast (which is good for Elise since she's sensitive to the sun for the next several months). We walked around and had lunch at a shady outdoor terrace. It was pretty steamy but I reminded Becky that we wouldn't even consider eating outdoors at noon in Ridgecrest during July, so it's all relative.

As you can see from the picture above, Elise's appetite is returning. She still has some issues with lack of certain types of taste (the taste of sweets isn't very strong), but she's increasingly interested in eating rather than us having to remind her all the time.

Escape from NIH (D+26)

"There is nothing like staying at home for real comfort." - Jane Austen

Elise continues to do well and they have let her leave the hospital and start spending the nights at our apartment in Rockville. Yeah! This is a little earlier than we'd anticipated - they'd told us it would be 30-45 days after the transplant and this is 26. So I take that as a good sign. We're all very happy about being back together as a family unit.

She's not officially discharged yet, rather she's on a pass. The lead Dr was out today so the team didn't want to make the discharge call, but they also didn't want to keep her in. So the compromise was to let her out for the weekend on pass and then if things go well she'll be discharged to outpatient status on Monday.

But we brought some lovely parting gifts back to the apartment with us: lots of medicines. You don't really notice when the nurse brings them in but when you've got to dole them out and keep track of them it sure seems like a lot. The first thing in the morning is the worst, she gets 7 different meds, a total of 10 tablets/capsules. This should taper off a bit in the next few weeks.

We'll be making daily trips back to NIH. They still need to get some of the medication levels stabilized and they are watching a few other things as well. Her liver function tests are elevated which is likely from the IV nutrition that they just discontinued yesterday, but its something that needs to be watched closely. And her ANC dropped today which could be a normal variation (it's still above the desired threshold for this point in time).  Finally, she needs to visit the tutor. This will be particularly important when the school year starts again in August. Right now she's doing math review to stay up to snuff.

Elise is going to see the ophthalmologist tomorrow because she's complained about "blurry" vision. She says she can't read because of it. It may be a side effect of the conditioning process. They did a good baseline on her before they started the process so they'll be better able to tell what's going on.

Despite these things, we're all very happy to be together in our home, even if it is temporary.

There's No Place Like Home (D+23)

"The ache for home lives in all of us, the safe place where we can go as we are and not be questioned." - Maya Angelou

Elise's condition continues to improve rapidly. Her absolute neutrophil count (ANC) continues to climb and passed into the "normal" range on Sunday morning's lab results! This is an important marker that they watch closely because it's a strong indicator of her ability to fight off infections. She's now able to leave her room and on Saturday we got a pass to go to the movies and yesterday we visited the apartment for most of the afternoon. Elise and I both watched perplexed (wir sprechen kein Futbol) as Germany and Argentina battled for the world cup.

But she's still in the "inpatient" status meaning she has to stay overnight at the hospital. There are still some immediate things that are being watched/worked. She needs to transition off the IV nutrition and back into the mode of feeding herself for all her calorie needs. Her weight is down about 10 lbs since she started the journey, but it seems to have bottomed out and is gradually climbing again. She has very little sense of taste and some foods she used to like don't taste good right now (chocolate doesn't taste good - say it isn't so!) And the IV nutrition dulls her sense of hunger. With those two combined it's hard for her to feel like eating, but she's working on it.

The GI problems she's really suffered with seem to be on the mend. She doesn't have pain anymore. In fact they've completely removed the morphine pump, both basal rate and PCA (the on-demand button). Now they'll just give it to her IV if she needs it, which she hasn't over the past few days. On the GI front, the better news is that the frequency of needing to use the bathroom has significantly dropped off. The urgency is still there, but I'd say frequency is back down to pre-hospital status. Of course pre-hospital status wasn't good given that she had colitis, but the current situation is way better than a week or even a few days ago. If she wasn't in a hospital (where they wake you up to see if you're sleeping okay), she might even sleep through the night.

The lagging marker is the platelet count. Platelets help your blood clot when you bleed. I'm told they are one of the last to recover. This count seems to be on the rise. Her platelet level is and has been high enough to prevent bleeding for quite a while. She only required one transfusion after the transplant when we'd expected many more. From what I've read there is a strong correlation between long term transplant success and the timely recovery of the platelet levels. The magic number is 50 within 30-60 days post transplant. Elise's counts rose into the 40's yesterday, so that's looking good.

The Drs are trying to stabilize the level of the immunosuppressant drug sirolimus in her blood stream. The use of a immunosuppressant is counter intuitive. It's used to prevent graft vs host disease (GVHD), essentially helping to prevent rejection of the transplant. Sirolimus dampens the activation of T Cells which reduces the body's immune response. Sirolimus is very hard to get leveled out so they take a blood sample each day and adjust the dose. She'll be taking this med for a long time, so getting the dosage leveled out is important if you don't want to visit the hospital every day. It seems like they are getting closer to the right level for Elise as the day to day variation seems to be narrowing down.

Now that Elise is feeling much better she's starting to get lonesome for the companionship of other kids. There aren't many in the hospital (a good thing!)We'll have to figure out how to counter that as we've still got a couple months here in MD before we can come home at day D+100.

So this week we'll be trying to get Elise released to outpatient status while continuing to watch for GVHD to rear its ugly head.

Thanks for the continued cards and letters. Elise enjoys them, even more so now that she's less distracted with medical complications. Being a teen, I think she like the text messages just as much.

Outside the Four Walls (D+20)

“It's a dangerous business, Frodo, going out your door. You step onto the road, and if you don't keep your feet, there's no knowing where you might be swept off to.” -  J.R.R. Tolkien, The Lord of the Rings

The past couple of days have shown great progress. Last night was my "night off" and when I returned to the hospital today Elise's room was vacant. The ubiquitous IV pole was still there but no Becky and no Elise. I would have thought she was out for tests except the IV pole was there and she'd normally just drag that along wherever she was going.

As it turns out, Elise's absolute neutrophil count (ANC) was up to 850 this morning and they said she could leave the room if she took some precautions. So they unhooked her temporarily and Becky and Elise decided to take a walk around the outside of the hospital which is a pretty good walk. I caught up with them near the entrance after they'd finished the loop. Elise was happy to get out of the room (but she should have had her mask on in the picture). Apparently she was also joking with the PA about catching the Metro to escape.

She said she'd decided to get up and out of bed today and she held to that. It was a real nice change and an indication that she's feeling much better. She even ate a bit more today.

She's still having some GI issues and her skin on her chest and neck is irritated from something (could be a lot of different things). She also had some nausea today but Becky thinks its because they've switched to mostly oral meds (vs IV) and Elise has an empty stomach. Needless to say everyone is keeping a close watch as both the GI and the skin issues could be graft vs host disease (GVHD) and that's the next concern, but they could also be a lot of other things too.

Her pain is almost gone. She's down to zero basal pain killers (ie no constant drip of painkillers), but still has the "on demand" ability if she needs it. I don't think she's used it much if any today, but they want to keep it hooked up for another day or so because if they go to the normal approach then they have to get it authorized and delivered from the pharmacy each time (which can be a 45-60 minute delay).

At the end of the day Elise wanted to go for another walk outside, but it started raining so we walked the hallways and then sat on a bench outside and watched the rain for a while.

Things are getting better each day.