One Year Ago Today: 02/01/2013 - Discharge Date Set!

(02/01/2013, Friday) I must apologize for my recent lack of information sharing. Last week was rough--particularly unpleasant to endure. This week was not without its challenges, but gratefully significantly better than last week--its just been hard to find/make the time to post about it.

I suppose part of my lack of posting is due to the looming possibility of discharge--didn't want to jinx it by talking about it--and honestly it seems a bit futile to discuss it as we've had **SO** many set dates which we've already missed. Mostly though, there have been so many times throughout this experience where we had a good day or two followed by the proverbial wheels coming off in some other aspect--it seemed typical to have an awful week followed by a few good days, so I've just been holding my breath waiting for the inevitable kidney punch*       *pun not originally intended, but left behind for posterity's sake.

All that said, for now, it appears that Evie's body may have run out of "other shoe(s)" to drop. I'm trepidatious, yet giddy with enthusiasm just at the idea that there may not be anything else significant that we need to plan for, resolve, or adapt to.

Evie:

• Receives 660 ml's of nutrition via feeding tube at night--roughly 700 calories.
• Weighed 18.35 kilograms at the end of dialysis today. (A 0.3 kg gain... most of it not likely to be permanent, but some fraction of it could be, so that is great news.)
• Still doesn't tend to manage to hit daily caloric intake targets on dialysis days, but is certainly doing better.
• Still no need for oxygen!
• Blood sugars are still a bit curious, but we haven't seen many crazy high numbers.
• Seems to have recovered from last week, and has not even napped the last two days (unless you count the 15 minutes we both fell asleep for while waiting for a technician in x-ray today.)
• ***Is scheduled to begin the offsite peritoneal dialysis training on 2/11/2013--and on a related note is scheduled for discharge from the hospital on the same day!***  We won't actually be home home until around 2/15/2013 or so.

One of the side benefits of her having been here so long, and finally appearing to be more stable, is that it has provided the opportunity to track down the local Osteogenesis Imperfecta (OI) specialst(s). We've talked to one of them at length a couple times now.

She's been experiencing some acute pain which they are testing her for a potential bladder/urinary tract infection. She's also been having a bit of intense discomfort due to the placement of the inside-the-stomach portion peritoneal dialysis (PD) catheter--they assume this will go way once she begins PD.

In short, she is bouncing back well from the physical/emotional trauma that was inflicted upon her last week.

And now, a few photos... Evie's little brother was able to come visit yesterday for the first time in a while. They both enjoyed it immensely. The last photo is a picture of the clip-on earrings she made this evening (we do a lot of crafts.)

 

DISCLAIMER: Posts Labeled "One Year Ago Today" are a record of what transpired when Evie first became ill.  The slightly edited text comes from emails which we sent to family to let them know what was happening, and to keep them updated.  These posts are usually long, but if you want to truly understand what life was like for us, and what led to this point, it makes for great "light" reading.

One Year Ago Today: 12/31/2012 - The Difference a Day Makes

(12/31/2012, Monday) Evie slept well last night, but her sleep was cut short this morning by the sliding door of her room coming off the track. Between me trying to fix it with my bare hands, and the maintenance guy coming to fix it with the necessary tools, she woke up too early because of the noise.

By 0800, we began plasmapheresis, which was done around 1100. During the course of which, I had a chance to have a lengthy discussion with one of her nephrologists. Discussion highlights include:

• After today, no more plasmapheresis (unless something changes, again.)
• No dialysis today.
• Convert the continuous Nexium drip to a twice a day IV (Nexium doesn't just help with acid reflux -- the magic purple pill also helps your GI tract heal itself.
• No more assisted breathing -- we're back on room air :-)
• It is the belief of the nephrologist that Evie is considered most certainly to be in the HUS crowd, not aHUS... we've done a few things (primarily the Lamborghini Juice and Plasmapheresis) which are typically reserved for an aHUS patient, but they have been used elsewhere (namely Germany) to great effect for regular old HUS folk.
• It is also the belief of the nephrologist that Evie's GI bleed is also par for the course for a patient with a severe case of HUS and she believes that Evie clearly falls into this category.
• We're still in "Wait and See" mode when it comes to her GI bleeding but the Nephrologist feels like if we still haven't seen anything (bloody stool-wise) by the time dialysis is done tomorrow, we may be able to move back to the regular floor (out of PICU) tomorrow!!!
• Green light for clear liquids today, in very small quantities.
• We again discussed how very badly Evie needs time with the Physical Therapists (because of her OI.)
• We discussed how long Evie will likely require dialysis. The nephrologist is hopeful that she may not require dialysis, and or a transplant later in life, but hangs to the hope that instead enough kidney function will return that she could filter her own blood and produce urine. Even if that becomes reality she will likely spend the rest of her life taking medication for regulating blood pressure and other things that her kidneys will likely not be capable of doing any more.
• We also discussed the possibility of several more weeks in the hospital, or potentially living somewhere nearby and coming to the hospital 3 times a week. (Essentially trying to decide between doing peritoneal dialysis, and staying with standard hemodialysis.)

The rest of our day consisted of working with physical therapists and recreational therapists. We got to put her in a wheelchair and take her on a walk today before Heather had to leave. We had to stay in PICU though, and she is itching to make it back to the playroom. She enjoyed the food she got to eat, but struggles with the limitations of type and quantity. It is really important that we don't go too fast though, as too much or too complex of food in her belly could re-aggravate both her pancreatitis and possibly more GI bleeding.

The gastroenterologists and pediatric surgeons seem to still be interested in performing a colonoscopy to take a look at things that yesterday's procedure couldn't view... we'll see if and when that happens. It has been 24 hours since we had a bloody stool, and at the last check of her hemoglobin and hematacrit, both were stable (and had raised slightly) compared to yesterday after surgery -- so everything is looking up. Let's all hope it isn't another peak in the rollercoaster, but rather just another vista toward the top of the mountain.

DISCLAIMER: Posts Labeled "One Year Ago Today" are a record of what transpired when Evie first became ill.  The slightly edited text comes from emails which we sent to family to let them know what was happening, and to keep them updated.  These posts are usually long, but if you want to truly understand what life was like for us, and what led to this point, it makes for great "light" reading.