Thankful

by Evan Posted on November 27, 2010

Thanksgiving came and went in a flash this year. It seems like there is so much going on here, but each time someone asks I’m at a loss to describe where we are.

Michelle and the girls are back in the house now. Major renovations to make the house Zoe-ready have completed, and so they were finally able to return full time to our home. We’ve been living elsewhere out of suitcases in apartments or relatives’ homes for most of the year, and the State of the Family reflects that. Our clothes are spread far and wide, our linens and half the components of our house in storage or bags from the renovations, and our routines are in shambles.

We’re doing our best to relearn what it is to have all of us under one roof. Zoe was born and entered the hospital shortly thereafter as a 2 month old, and we have had little opportunity to settle our daily routines with her in a more “normal” state — a state that doesn’t include hospital stays, hours of meds, daily clinic visits and/or physical therapy, finally.

Despite the chaos, we are thankful. Thankful above all that Zoe appears to be making her way clear of this horrible disease, and that we’re well on our way through the long span of time where she has to be kept away from so much of life. Thankful that she is young enough not to remember any of this when we finally exit the tunnel. Thankful that our family is still intact, given how hard this year has been. Thankful for our relatives and friends for supporting us.

Zoe is doing very well right now. Her White Blood Cell count is remaining stable around 4.5 without any medications to boost it, and her other indicators are great. Her height and weight have finally returned to something more reasonable, she’s sitting right around 40th percentile for both now. Her height continues to climb in the percentiles over time, we believe she lost some growth time during her treatments and she’s beginning to catch up now. In time perhaps she will be able to make up for the months she has lost. Her weight was really high, then low after she came off her IV nutrition, and now she is on solids and it seems to have stabilized.

In terms of development, Zoe is moving along pretty well. She is not yet walking or crawling, but she is doing some scooching and little fish flop-crawls where she gets up on all fours, flops forward and then repeats to reach something. We’re excited that we may see some actual crawling in the coming weeks. It’s taken a long time to build up her core strength after so much time on her back and unable to develop her abdomen.

She is also getting increasingly verbal with her babbling. Michelle is convinced that her first word will be Mama from the sounds she’s making, but I like to tell her I think it’s going to be Grizzly, our dog. She’s doesn’t find that very amusing. :)

We haven’t had any more big scares lately, though we do see some rashes now and then that cause no end of stress until they go away. Right now she has a little bit of rash around her nose and under her eyes, but we believe (as do her docs) that it’s new foods and allergens being rubbed there by little paws. We try to keep on top of keeping her hands clean, but with babies it’s hard. She will rub food in her eye in a flash. Hopefully this will clear up soon so that we can stop jumping at shadows.

As Michelle and I begin to look forward, we’ve begun to start new creative projects. Michelle has begun keeping a journal online at a site called ClunkyShoe (it’s a little joke we have), where she is writing about her experiences and thoughts on family and life, with less emphasis on disease.

I have been putting occasional updates on my old blog at evanz.org, however I suspect some of my time may end up going to another site called HLHForum.com. I’ll be writing more about it in the near future, but in short I’m trying to provide a place for parents, family and folks interested in supporting patients with similar disorders to meet, discuss information, and hopefully support one another. I don’t want it to be about any one child, hence a separate site from this one. Please feel free to take a look if you are interested, I’ll be trying to update it more when I can find time.

I’ll continue to update this site whenever there is new news about Zoe, hopefully every few weeks or on special occasions.

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30 Days of Light

by Evan Posted on October 31, 2010

We’ve now gone 30 days since Day +100, and things continue to slowly improve. Our last few visits have seen Zoe’s WBC counts between 5.5 and 6.0, holding fairly steady. That puts her in the low normal range, and she hasn’t had any growth medication since that last time.

The biggest improvement overall has come in the form of a medication, one that we wished we had started months ago, called Reglan. It’s a bowel treatment medication that suppresses spit-ups and speeds along digestion. Zoe has had the worst time transitioning to solid foods while still healing from her chemotherapy, and as a result we’ve really struggled with her ability to keep food down.

Since the introduction of Reglan, however, she has had almost no major incidents and has gained some weight and is growing consistently. She began this medication after we pushed for a solution to her bowel issues, which is why I mention it. I’m not sure it’s standard treatment in these cases, but the results we’ve seen have been fantastic. I know I sound like a commercial, but this was a really big leap forward for us and I want to mention it in case others have this issue.

We have finally left Durham, and the girls and Michelle are currently staying in Asheville with family while some work is done on our house. I’m back home for the moment trying to make sure things move along with the renovations — we had to have some things done to our older home before Zoe could safely return.

It’s been a huge relief to leave Durham, we had really begun to feel we’d forgotten what it was like to be anywhere else. We are grateful for the “clean” apartments set up by the Evanosky Foundation for the use of transplant families, but as nice as they were, they weren’t home. Another couple weeks and we hope to all be in one place again.

Zoe is progressing well developmentally. She’s not crawling yet, and we’re beginning to think she may just skip it. My mother tells me I did at her age, so who knows. Zoe is able to stand when held or against something supporting her for decent amounts of time now, but she is also rocking on her hips a lot and scootching around. We’ll see soon what path she decides to take.

All in all, things are progressing well. With the continuing construction on our house and the lateness of the year though, it’s quickly becoming clear that by the time we’re all back together and healthy, this entire year can be written off to getting Zoe through this. It’s better than the alternative of course, but it’s still hard to believe the year is almost over and we’re just now on our way home. If it weren’t for writing it all down, I’m not sure I could tell you exactly what all happened, it’s been such a blur.

PS – Please excuse the horror movie reference in the title, but it is Halloween, after all.

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Post-transplant Work-up

by Evan Posted on October 11, 2010

Today was Zoe’s 100 day post-transplant “work-up”, which means we shuffled through a long day at the Duke Children’s Hospital clinic subjecting Zoe to the same battery of tests that she received before her transplant. She had an echo-cardiogram, the “scream” test for pulmonary function, full blood draws and x-rays. We did not have to have another CT scan, nor did we have to do the nuclear kidney/liver function test. Zoe’s Creatinine and Bilirubin (markers of kidney and liver function) give us no reason to believe she isn’t recovering or fully recovered from her cyclosporine treatments.

The good news is that everything came back just fine so far. Zoe is a fine screamer, her pulmonary test came back better than it did pre-transplant, her xrays looked fine, and her blood counts were almost all in the normal range. The great news is that she did not need “G”, her WBC count is up to 5.6 on it’s own. She’s gone 2 weeks now without a boost, and the counts went up not down. We’re optimistic this means she’ll never need it again.

The visit felt very much like a cap to our experience at Duke. Most of the same tests, only this time with an eye toward making sure everything is fine so we can go home, rather than being fine so that she can be admitted and subjected to chemotherapy. The feeling was entirely different.

Zoe still has a bit of thrush, but given her newfound love of spitting out her medications, we decided to pursue the nuclear option to clearing it up. They gave her a purple dye-like medication that coats the inside of her mouth and throat and suppresses the thrush. The upside to this is it only takes 3 applications over 3 days, the downside is that it is really strong dye.

It’s permanent on pretty much everything except skin I’m told, so Zoe has to wear a little bib for the next few days, and everything she puts near her mouth will end up purple. As we were finishing up the application of it, the nurse lifted Zoe up to a sitting position a little too quickly and she spit up a bit. In a heroic attempt to save her clothes from the purple menace, I caught the spitup in my hand, and was rewarded with a purple hand for my troubles. The dress still didn’t make it. After that, we put on her bib and I gave up any hopes of joining the secret service.

There was a bluegrass band playing in the lobby for the duration of our visit, giving an interesting soundtrack to our Family Circle trek all over the hospital for our tests. There were definitely more smiles than usual everywhere we went, as a result. All in all, a great day.

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Programming Notes

by Evan Posted on October 5, 2010

If you haven’t seen it yet, please check out the most recent update on Zoe — she’s had a big week.

We’ve reached our biggest milestone along the way to being able to say we’ve beat this thing, the 100 days post-transplant without incident. No infections, no resurgence of the disease, no loss of graft, and a 100% donor cell immune system. In addition to reaching that milestone, she has now had her central lines removed and a portacath installed. The porta-cath is a smaller site for IV access that does not require daily care, flushes, cleaning, or otherwise risky access to her body, each of which poses a risk of infection. She can now go into a (clean) pool, a real bath, and roll over with abandon.

Our next steps are to make it to her first birthday in January, and then a year post-transplant. We fully expect things to continue as they have been at this point, we’ve seen no reason to fear her disease will come back, and now we just need to keep the whole family healthy until her immune system is robust enough to fight off infections on it’s own. She will still need regular hospital visits, blood draws, and “G” to maintain her white blood cell count until it maintains itself, but these are minor chores when compared to what we’ve been through until now.

I’m not sure it’s hit us yet, but I imagine one day we’ll wake up and realize what we’ve been through. Until then, we’ll just keep moving forward and try to get back to a happy place — right now I’d say we’re exhausted and dazed, ready for the stress to pass.

What does that mean for this site? Well, I began this site as a leap of faith. I wanted to document an experience with this deadly disease and hoped that in the end things would work out for us, and that a positive and successful story would be easily found and accessible for parents coming along behind us who have to face what we have faced. This site will remain as it is indefinitely, and I’ll continue to be in contact with anyone who has questions about HLH and our story should they need us.

I will be updating periodically when we have news to share, but not nearly as often as we have been. I would think that once a week or every other week is more likely, and in time that will drag out even further as we resume a normal life. I’ll post milestones and pictures when I have them, particularly when Zoe has grown up a little more. I want parents to see that a child can make it through this and be just fine. Hope is a very important thing to have.

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Day +100

by Evan Posted on October 1, 2010

It’s been an incredibly long year. We’ve largely set aside our lives as we turned our focus to seeing our newborn through a terrible, rare and unforeseeable disease and all of it’s consequences. When we began this journey, I honestly didn’t think we’d be where we are today. I didn’t think Zoe would make it through this nearly unscathed. I feared for her very life based on the statistics, feared she would develop a neurological disability, feared she would suffer from any number of other permanent side effects to her treatment.

Today, Day +100, I can say that it appears we have made it. Zoe is bright and healthy, eating on her own, off most of her medications, and officially an HLH survivor. There continue to be worries, but increasingly they stem from having an infant and all of the peculiarities that each child has, and not from having a sick infant specifically.

On Monday she is scheduled to get her central lines removed, which is another very big day. She’s had lines in her chest now since she was about 2 1/2 months old, the majority of her life. We’re hopeful that, once they are out, she’ll feel much more spry and ready to work on her crawling. As of now, she doesn’t like being on her belly for very long, the lines and clips dig into her chest a bit.

It’s a little hard to say where we go from here. Both Michelle and I are looking at life changes as a result of this, and both of us, and Maya, feel irrevocably changed by the entire experience. I wouldn’t wish it on anyone, but it has been an amazing experience in both the highs and the lows. We’ve found new ways to bond as a family even as we’ve been forced to spend too much time apart. We’ve found ways to grow as people as anyone might, faced with unexpected hardship. We’ve watched our girls grow up even as the world seems out of control around them, and come out of it, well, just fine to our amazement.

I started out writing this blog without having much idea of where we were going. It was, and is, a way to cope with what we’re experiencing. I’ve always been better at coping by writing more than by talking or exercising, drinking, what have you. When I began, I decided that the best way to handle things would be with a bit of anonymity, so that if something bad did happen, I was not writing something that could become problematic for the doctors and others working hard to help us. We have made it through the gauntlet at this point, and so I’d like to offer a few thanks. There have been so many people we have encountered who have helped even in small but important ways, and I can’t thank everyone enough. Please know that we appreciate all of you and all of your help more than we could even convey.

We’d like to thank Dr. Dave Anderson of Forsyth Pediatrics, the doctor who first saw Zoe and trusted his gut to send her to the hospital earlier than expected or “required”, and in doing may have prevented major damage from the disease. Dr. Mike Kidder, who couldn’t sleep at night while he worried about Zoe and worked on her diagnosis tirelessly. The ER doctor who happened to have seen HLH before and, we’re told, first suggested it on rounds when her diagnosis continued to be elusive.

Dr. Thomas McLean and Dr. Marcia Wofford, Zoe’s primary doctors at Wake Forest University Hospital, who managed rapid and effective treatment of her disease and her recovery, putting her in a position to go into her transplant in the best possible condition.

Dr. Paul Martin and Jayne Cash, the primary transplant doctor and nurse coordinator at Duke, both of whom suffered my nearly endless questioning, pushing and challenges as we tried to be sure we were on the right course. Their patience with us was boundless. And, as silly as it sounds, the World Wide Web for existing and allowing me to give myself a crash course on this disease, ultimately helping us make good decisions where, even a decade before, we’d have been in the dark.

The entire nursing team at the Pediatric Blood and Marrow Transplant Unit at Duke University Hospital, particularly Jess, Luke, Courtney and Tameka. The transplant doctors who we saw on rotation, Drs. Parikh, Prasad, Szabolcs, Page-Chartrand, and Driscoll.

The transplant families who found us through this website, followed our progress, cheered us and advised us both publicly and privately, particularly David, Andrea, Shana and Michelle. Your counsel and support were invaluable.

Our friends and family, you know who you are, but particularly Sandra and Larry, who have set aside their lives just as we have ours, moved into our home, put thousands of miles on their cars, and taken on care of our dog, Zoe, Maya, Michelle and I whenever we needed them. We never could have done this without you.

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Day +90 All About the Eating

by Evan Posted on September 21, 2010

Day +90 All About the Eating

Zoe’s clinic visit yesterday went well overall.  We have been sweating bullets  about her eating after “threats” that she would go back on TPN if her intake did not increase and her weight kept dropping.  Legitimate concern, I suppose, as Zoe had lost about two and a half pounds.  She did have a little extra to spare, and I definitely felt that the extra pounds were protective for her.

I had no idea that her eating was going to be such a stressor!  If you think about it, though, she’s had a lot of work to do to get to a normal place of consumption.  She pretty much exclusively nursed for five months, then was on TPN while she healed from mucouscitis, then never resumed nursing.  So, that left us with having to introduce drinking from a bottle and a cup as well as eating in close proximity.

We tried a bottle, a sippy cup and a cutaway cup for drinking.  We tried rice cereal, sweet potatoes, bananas, teething crackers, formula and Pedialyte for nutrition.  You get my drift, I’m sure.  She was on the Introduction to Solids FastTrack!  Of course, we tried this in moderation, introducing about one to two new items per week.

After weeks of working on this, she is sucking down two ounces in a sitting, a considerable improvement over the half ounce to ounce she was intaking recently.  She is having her meals about sixteen times per day out of necessity, as we have been trying to avoid dehydration and further weight loss.  The docs kept telling us  Zoe needed to drink 20 ounces per day to stay hydrated and more than that to maintain her weight.  Getting her to drink 20 ounces had really been a challenge!

Zoe has been gradually improving that intake level and has been eating about an ounce and a half of solids, most recently, bananas, daily.  Her latest favorite food is  toasted bread sticks because she can feed herself, which she is pretty pleased about. She also likes to feed herself with the spoon.  Can you blame her after all the med syringes that have been put in her mouth?

The good news is that her weight is holding steady at 7.7 kilograms, about 17 pounds.  She is in the twenty-seventh percentile for her weight where at one time she was in the 98th.  Her peak weight was around 19 pounds.  Maya has always been a string bean, so we are not completely alarmed that Zoe may tend to be on the slimmer side.

Where did all of her weight go?  I’m sure she has lost about a pound in each cheek.  Have you noticed her eyes are bigger now that her cheeks have gone down?

Regarding her counts and chemistries, Zoe’s magnesium has been a little on the low side, probably due to the Tacrolimus she takes.  She is taking a magnesium supplement for this.  Too bad bananas weren’t a great source of potassium and magnesium, because then she would have it covered!

Zoe’s platelet and red blood cell counts have been in normal range consistently for weeks now.  Once the white blood cells are producing well and sticking around she will be doing great.

Other news items: we are scheduled to have her lines out on the 6th of October.  Replacing them will be a  port-a-cath access placed under her skin. That will surely be a happy day. IV med pushes, pump drips, TPN, home blood draws, cap changes and home sterile dressing changes will all will be a thing of the past. No more worries about crossing lines and exploding babies!

Losing those three appendages that have been attached to her since March and May respectively?  That will be a day to celebrate!

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Day +82: Talking About Release

by Evan Posted on September 13, 2010

Today’s clinic visit brought interesting news, there was talk for the first time about a release date. Release at this point means being allowed to return home and switching our long term care to Wake Forest University Hospital (Brenner). They suggested we could be released as early as two weeks from now, but I don’t think that it’s likely to happen that soon, mostly for our own reasons.

Michelle and I want to be sure, absolutely sure, that before we leave Duke’s care and the care of the doctors who now know Zoe best, that she has no dangers remaining, beyond the normal risk of infection. We want her graft to be firmly in place (it is), her counts to be at a stable level (not quite yet), and more than anything, her lines to come out.

Right now we’re having a very messy time with her feeding and medication. Zoe came off of the IV nutrition very recently, but we’re still struggling to get her intake up to where she is supposed to be. She has lost a little weight — which is probably a good thing — but we don’t want her to lose any more.

Generally at this age kids are supposed to be taking in around 30oz per day, however Zoe is closer to 15-20 most days, not including her meds. Her meds add another few oz, but the concern remains that she hasn’t found her groove yet with feeding.

In addition, her meds are a mess. We have a terrible time getting her to keep the oral meds down, but the only way to get her lines out is to go on all oral meds. A conundrum. We’ve asked to have her go back on Zofran for spit-ups in order to try and keep more of her fluids and oral meds down.

In general, her age is such that she has suddenly found her voice (fussing more than she used to), her strength (she yanks at everything, swats away syringes, etc), and her will to drool. Suddenly nothing can be easy, as if it ever was.

If I stand back, I begin to realize how far we’ve come. We’re talking about going home at some point in the next month or two, and that wouldn’t happen if she were in serious danger. Zoe’s growing up really fast now, someone opened the gates while we weren’t looking and she is off and running.

These are great things, but somehow, no matter how many steps forward we take, there still seems to be something to fret about.

I suppose at least the things we’re fretting about now are much more reasonable than life or death. I have a feeling that, once these few weeks of rough travel pass and Zoe has learned to eat her solids and her med situation is stable again, the rest will sort itself out.

It’s very hard to shift out of emergency gear though.

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Day +75: Finding a Natural Weight

by Evan Posted on September 6, 2010

As most of you know who have checked in with us at one time or another, Zoe has been on steroids for most of her life at this point. She gained a great deal of weight pre-transplant due to them, and has since retained a decent amount of it. Her percentiles for her age and size put her in the ~90%, meaning she is larger than most babies her age and length.

We’ve been slowly creeping back down from that as she started to grow again and become more mobile, she seemed to stop gaining height for a couple months during the worst of chemo and steroids. Now, she really only retains her steroid cheeks, and even those are in slow decline finally.

During this process we’ve had a heck of a time getting her meds right, as we’ve moved from IV nutrition to milk and solid foods. Zoe’s weight has gone down, her Tacrolimus level (immuno-suppressant chemo) has shot up, and her Magnesium has dropped considerably. Last week and this week have been all about trying to get her eating, trying to figure out if her Tacrolimus readings are “real” or an error of the test, trying to get her Magnesium back up.

Where we are at the moment is, Zoe’s weight is around 8.2 kilos, which is pretty close to where she should be for her size, around the 50th percentile. I’ve come to feel that she’s trying to find her “natural” weight, the weight she would be were it not for all of this mess she’s had to endure. She seems to be much spunkier than she was even a week ago, and feel more comfortable moving around. She sits up easier, rolls on her side easier, and holds herself up on her belly with ease. All part of growing up, of course, but the change seems to be related to the weight. We can feel that she’s lighter. She seems to feel it too.

Zoe’s Tacrolimus level has shot up very high, and they’re inclined to believe it is accurate now — 1800, where normal is 500 for her. This can cause all manner of problems if it continues, so we’re going to suspend it for now, until we figure out the new dosage. Her Creatinine is up as a result, and because the Tacrolimus leeches Magnesium, that is very low. She’s getting supplements of Magnesium now 3 times a day, but she has gotten so proficient at spitting it out that we are struggling to get the levels up.

nom nom

We’re crossing our fingers that all of this settles out once her weight stabilizes. She’s eating pretty well, but the change in diet has definitely wreaked havoc on her med situation. If we can get it figured out without any seizures from too much Tacrolimus, or GVHD from too little, all will be well. We’re a little anxious, however, since those two situations are a possibility at this point.

On the bright side, she is eating solids quite well, her spirits are high, and her personality is really starting to shine through with little happy noises, laughter and cute little eyebrow maneuvers whenever she’s listening to us speak.

Oh, and she’s cutting 3 teeth now.

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Day +68: Changes Afoot

by Evan Posted on August 30, 2010

Zoe had a great day at clinic — or is having, I should say. We’re still here, getting the last of her Monday infusions.

WBC count was at 2.4, so she did get GCSF again, but as I mentioned previously it seems a matter of routine now, not concern. No one is worried that she will not eventually grow her own WBC more quickly.

The big news of the day is that we’re going to try to get off of TPN. Zoe has been eating more voraciously these past few days, particularly in the evening as the effects of the TPN wane over the course of the day.

We’ll be really pushing to get her eating as much as possible so that our trial run is successful, and she does not need to return to it (ever!).

In addition we’re moving to oral steroid (hydrocortisone), which the doctor indicated may accelerate her loss of cheeks and such a little more. We have the option of trying her off of the Zofran as well, which we’ll be taking. If she has increased spit-ups and nausea, we can always go back.

Next week if all goes well we can move her to oral Tacrolimus, which would have her completely off of IV meds, setting us up to get the lines out and a porta-cath in. That would mean real baths and even some pool action, which would be exciting indeed.

Dr. P stopped by to go over everything, and when I asked confirmed that her chimera results remain at >98%. He was very non-chalant, and indicated that he has no concerns about her graft whatsoever at this point. “It would be rare indeed” were she to have a graft problem with where she is at this point, he said. That’s a big relief, I’ve been anxious, constantly waiting for something to take a turn for the worse with that. I will (try to) stop stressing now.

All of this together means we’re one step closer to that normalcy thing I’ve been talking about. Get her to oral medications, eating on her own, lines out of her chest, and she’ll be much better off. I would say much happier, but honestly I’m not sure there is such a thing as a happier baby.

And that, friends, makes me happy too.

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Day +65: Line Breach

by Evan Posted on August 27, 2010

We’re still waiting on the chimerism results. It’s a test that they like to discuss, and since results were not expected until this afternoon, we won’t hear about them until Monday. Crossing fingers that we’re at 100%.

Dr. P was very enthusiastic this week about Zoe, he feels that she has been a great case, given how well she’s done with everything, and that by her first birthday, she will be completely normal again. Rockstar is the word he likes to use. Normal is still the word that sticks in my head though, that’s essentially what we’re striving for here — a normal life for our girl.

Thursday’s labs looked good. No chemistry issues other than a drop in glucose related to her reduction in TPN. They’re working on weaning her nutrition so that we can get her off IV meds, the hope is that we’ll be on oral only before long and get her tubes out. A heel stick (blood test) came back normal for the glucose, so no worries there at the moment. WBC was at 3.4, which is where she seems to settle pretty often. She may drop again and need GCSF on Monday, but we appear to be out of the phase of stressing quite as much about that count. No one at the hospital seems worried about it, they’re much more focused on her chemistry’s at this point it seems.

We had our first true snafu this morning. We were closing up her lines (flush with saline, lock with heparin) after her night’s TPN, and when the tube was unscrewed her “cap” came off, leaving her central line open directly into her chest. The “cap” as it’s called is the barrier between her bloodstream and the big bad germy world — having it off for even a few moments is a bit scary. We do cap changes regularly, but we wear masks and Maya has to stay out of the room entirely, the cap is off for a matter of moments only while Michelle and I essentially hold our breath, so anxious are we not to have anything enter that line.

So having the cap come off and go unnoticed as it bumped around in her nightie is, well, not ideal. We noticed it was off when it was time to hook up her Tacrolimus, so it was a matter of a few minutes that it was open. A quick call into the hospital revealed that it was not something we leave unexamined and go on about our day, so Zoe had an unexpected trip to the clinic this morning.

At the clinic they did a line culture, which they’ll test to see if anything is growing in the line that could cause infection, and gave her a dose of Vancomycin, a fairly hefty antibiotic given preventatively in the case of a line breach. Hopefully nothing more comes of it, so far she has no fever or other symptoms of sepsis. That’s what we’ll be watching her for this weekend.

Having something like that happen really brings home how tenuous all of this is at times. Any little infection in her line can really cause huge problems. All the more reasons to get those things out of her.

On a lighter note, being back in Durham has given us a chance to revisit what we liked about the Triangle when we lived here. On Wednesday Maya and I went to (what used to be) Exploris, now known as Marble Kids Museum, and after about 2.5 hours of all-out-play-frenzy, took in an IMAX movie. Great fun. It’s a little strange to be a tourist in a place you used to live on the one hand, but on the other, we know some of the best spots already and can make the best of our free time.

Next week could be a big one. We’re hoping to hear back great news on the chimerism, get her off TPN, and potentially schedule a date to get her lines out. If we can move her Tacrolimus to oral, she will be free finally, having spent now 5+ of her 7+ months with tubes in her chest.

We’ll have to have a party. :)

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