Day +90 All About the Eating

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!

Day +82: Talking About Release

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.

Day +75: Finding a Natural Weight

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.