One Year Ago Today: 02/11-15/2013 - Discharge!!!

Evie 02/11-15/2013 Update

Bottom Line Up Front: Evie is ***FINALLY*** home!

I dropped Evie's baby brother off early Monday morning (2/11) with one of our church friends, then drove to the hospital to pick up Heather and Evie. Evie was discharged a bit later in the morning than we'd hoped so we were in a mad rush to get out of there, but not without having a few triumphant moments.

We arrived to dialysis training at the offsite dialysis training facility (near Chapel Hill) late. Monday & Tuesday (2/11-2/12) to learn how to perform CAPD (Continuous Ambulatory Peritoneal Dialysis) a manual method of peritoneal dialysis which requires only gravity, not a machine to function. It is our fallback plan for when the power goes out.

We will receive 700 lbs of supplies each month.

Wednesday (2/13) we were at our house by 0700 to receive our shipment of peritoneal dialysis supplies via 18 wheeler -- about 50 boxes or so that will last us one month (we are storing them in her brother's closet, he doesn't need the space right now. Since we had not yet received the machine, nor had training on how to use it, we completed 5 sessions/exchanges via CAPD 3 hours apart throughout the day. Evie enjoyed the time she was able to spend with her sisters.

We drove back to Chapel Hill and did the last exchange after watching UNC fall to Duke :-(

Thursday & Friday (2/14-2/15) we had more training, this time with the CCPD (Continuous Cycling Peritoneal Dialysis) machine (cycler). We officially signed the paperwork to get Evie approved for Medicare. I hope it is as awesome as they make it sound, because I had quite the sticker shock earlier in the week while at the pharmacy as they filled over a dozen prescriptions. After a longer than anticipated day on Friday, we were finally able to come home (for reals!)

The Rap Sheet

• Kidney Failure: Evie is connected to a CCPD machine each night for 10 hours. It takes me half an hour or so to set it up, and about as long each morning to take it down. To avoid giving her an infection:
  • I turn off all heating/air conditioning 30 minutes prior to and while connecting or disconnecting.
  • Anyone present in her room at the time must wear a mask.
  • The door to her room must remain closed.
  • I wash my hands with anti-bacterial soap for a few minutes, then use Nitrile gloves which have been covered with hand sanitizer.
  • I disinfect the room (and every doorknob and light switch nearby) with a bleach water solution once a week.
  
  All that being said, they estimate she has 12 months or less on average before she contracts her first case of Peritonitis. Here's to hoping we're above average.
  
  The treatments are going well, with the exception of the acute pain it creates in her shoulder toward the end of treatment. We've been tweaking things a bit, but have not yet figured out a way to lessen the pain--it seems to be severe, and as of yet, unavoidable.
• Diabetes: Evie takes a long-lasting (24 hour) insulin shot each night, and checks her blood sugars prior to each meal and before bed--they're still tweaking how to handle this. It is impacted by how we tweak her nightly dialysis routine, as the solution she is treated with contains significant amounts of dextrose (sugar).
• Nutrition: Evie is receiving liquid nutrition via g-tube for 12 hours each night, providing the entirety of her daily caloric requirements. Unfortunately, the liquid curdles if at room temperature longer than four hours, so that means Heather or I must refill it at the 4 and 8 hour marks. Good times. Her appetite has not yet bounced back, but she is eating, and anything she eats is weight she will gain back.
• Mobility: As you can see from the photos, Evie has made huge progress since I last sent an update in this regard -- once she began receiving the necessary nourishment to survive, she quickly became more capable and willing to move around. She currently weighs 19.2 kilograms. It is debatable whether she really weighs that much, or whether she is not *dry* enough (from a dialysis standpoint) but that is where she's hovering at this point. She's looking forward to a prescribed aqua-therapy class which ought to be perfect for helping her get stronger.
• Energy: She requires at least one nap a day. Sometimes she doesn't take it, but she certainly needs one.
• Random Thoughts:
  • It has been unbelievably wonderful to be together again as a family. We missed each other.
  • It has been extremely difficult to be together again. It had been too long. We're all trying to readjust, but with all the things Evie requires, it is very difficult to feel like a good enough parent when it comes to effectively nurturing the other three kids--Particularly when two of those are sick, and one of them can't speak any English, and is quickly approaching the terrible two's.
  • It is overwhelming to think about a newborn being added to this mix, but we have about three months before it happens.
  • I spent more time at the hospital so far than I had been in our house since it was built. We have Christmas decorations that I had gotten out right after Thanksgiving that never got put up that I need to put away. That is the how close to "order" our house is.
  • Some of you who receive these updates via email have been asking me if sending money would help... my answer remains the same -- times are tough for everyone, and so far things are pretty okay, but thanks for the offer. Since Evie was only discharged on Monday, the bills are only just beginning to trickle in--(beware the spring thaw!) I have not yet received the bill for her stay. If our new budget items become more like millstones than not, I'll let you know. I do get the impression from what I can glean from others in similar circumstances that I may need to start planting money trees. (However, I like to think I'm more fiscally responsible / tight-fisted than "those" people.)
  • I must particularly call your attention to the gratitude which I have for our church members and neighbors who so fully stepped in to take care of our other kids during this past week. When the girls weren't at school, they were either with church friends, or neighbors. Likewise, we were able to spend our evenings this week at the home of one of my co-workers parents who live in Chapel Hill who graciously opened their doors (and cupboards) to us. Between them, our neighbors, and friends from church, we witnessed a great deal of charity -- the pure love of Christ. Who says there are no angels among us? I will never be able to repay the kindness, and hesitate to put any further strain on the cruse of oil, although we are admittedly overwhelmed.

  TL;DR

  
  
  Evie is home. She'll require dialysis every night until she is well enough to qualify for and receives a kidney transplant. The doctors say a live donor is her best chance. She now has type 1 diabetes. She receives her nutrition every night while she sleeps. She won't be allowed to go to school for the next six weeks. She is a cheerful, thoughtful soul who sincerely enjoyed watching (and briefly being out in) the snow that we had on Saturday, which seemed to have been saved special, just for her.
  
  
  
  

  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: 02/05-09/2013 - An Impromptu Changing of the Guard

(02/05-09/2013, Tuesday - Saturday) I (Evie's Daddy) originally left the hospital on 2/5 for what should have been a couple hours to take care of a few pressing things in person at work. I ended up being there for several hours so Heather spent the night at the hospital and I went home to take care of the kids. While home, I promptly got sick, and was banned from returning to the hospital, for fear that Evie would catch what I had. So Heather was unexpectedly stranded at the hospital while the plan to discharge Evie on the 11th moved forward. Heather received lots of training, some of which I tried to receive as well via Skype.

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Ty asked me to try to update everyone on how Evie is doing. Ty and I traded places on Tuesday Feb 5th. I have really enjoyed being with Evie. This week Evie has gotten noticeably stronger. She is venturing from her bed unaided fairly frequently.

Tuesday February 5th

Evie officially began Peritoneal Dialysis (PD) on Tuesday soon after I arrived! She dialyzed for 5 hours, half of a full session. She isn't allowed to move much while connected, so we stayed in our room and hung out doing crafts and watching movies. Everything went very well.

Wednesday February 6th

We spent the bulk of the day on Wednesday also doing PD. This time the doctors wanted to do a 12 hour session because they wanted to try to take as much fluid off as they could. Unfortunately, she began having a lot of pain as the day progressed. During the time that the dialysis fluid was being removed from her abdomen in preparation to refill it with fresh fluid she began to have quite a bit of what they call "drain pain." They discontinued the treatment at 10 hours instead of completing it at 12 hours. Despite the shortened session her body gave up nearly a liter of excess fluid! :-) All in all we were happy with how things went.

Thursday February 7th

Evie had been scheduled for Friday February 8th to have a Gastrostomy or G-tube placed in her abdomen. She currently has a Nasogastric or NG-Tube, which enters her body through her nose, and runs down her throat to her stomach. It is uncomfortable, makes her self-conscious, and is a bit too temporary. Due to the upcoming surgery the doctors wanted to make sure that she was in optimal condition. Therefore, she had an early session of hemodialysis. She still had quite a bit of fluid to give so they chose to dialyze her for 4 hours. We finished in dialysis around noon. Due to the troubles we had the night before the doctors wanted to try a different type of PD called the Tidal Method. Instead of filling her abdomen with PD fluid and then completely draining the fluid every hour as is done in the regular method the machine fills the abdomen the solution sits for a while and then half the fluid is drained. The abdomen is then refilled to its original capacity. This process is continued throughout the session until the last drain when the abdomen is then fully drained of the PD fluid. Evie tolerated this method much, much better. As her catheter site heals more the original method will likely work fine.

We initially did 5 hours of PD using the Tidal Method. Finding that this method worked better it was decided to continue thru the night. So, she went down to hemodialysis at 7:00am did a 4 hour session then a 5 hour session of PD in the afternoon to the evening and then did PD thru the night lasting about 13 hours. So after 22 hours of dialysis in 24 hours she was *VERY* well dialyzed for her surgery on Friday morning. Evie has been a trooper throughout all of this. She has been in very high spirits. I think she’s seeing the light at the end of the tunnel.

Friday February 8th

Evie continued dialysis until 9:30am when she was scheduled to go down to have her procedure. She was happy and spunky. She was hoping to be able the ride one of the tricycles around the unit before transport came for her. Unfortunately, they were a little too quick for her. When we arrived at pediatric surgery we were told that we had been bumped to a later time because an emergency case had come in. So we headed back up stairs. Evie was perfectly happy about this because it gave her the chance to ride the tricycle. She found a friend, a couple of years younger than her, to ride with. They spent the next 30 minutes riding around and around the unit. For the first 15 minutes I tried to keep up with them but failed miserably. (In my defense I am 6 months pregnant!) I began cutting through the door in the middle of the unit that connects the one side of the unit to the other. I was pretty tuckered out by the end of the half hour.  But Evie was still going strong. The girls decided they wanted to play in the little girl’s room. They worked to put a 100 piece puzzle together while her mom and I talked and shared stories. At 11:30 they came back for Evie and we headed back down to surgery.

Evie was grateful to have been able to play and was happy to go to her surgery. She was looking forward to having the G-tube placed and getting the NG-tube out of her nose. Everything went beautifully. She was doing well waking up from the anesthesia until she saw the IV they had placed in her arm while she was asleep. Let me just say she was one angry little girl. I had failed her! She has been through so many surgeries it didn’t even occur to me to bring up the fact that she would be getting an IV after they put her to sleep for surgery.

She gave me the consequence for my actions: she said that if I ever did that again I would not be allowed to talk to daddy for a whole day not even if he called me. I told her that sounded fair. I felt so bad! She had a good rest of the day/night. We kept her well medicated so her pain was minimal. She was allowed to eat dinner, she did a good job of it. The day was not without its bumps in the road.  While she was in the recovery room I realized she looked kind of puffy. I asked how much fluid she was given (intravenously) and they told me around 650 ml’s. To me that sounded like too much.

The anesthesiologist came to talk to me just as we were headed back to Evie’s room. She apologized and told me that a miscommunication had occurred between her and her assistant. The anesthesiologist had told her assistant that Evie was “dry” and then proceeded to tell her “and we are going to keep her that way.” The assistant didn’t hear the last part of the sentence so she assumed that like a “normal” child that might come to them dehydrated she needed to rehydrate her, and she proceeded to do so. So the benefits of yesterday's marathon dialysis session were erased. The only upside to this part of the story is that the doctors had changed their minds and decided not to remove her hemodialysis catheter yet, so hemodialysis is still an option for fluid removal.

Saturday February 9th

I was woken up by the nurse at around 8:20am to let me know they had decided to send Evie back to dialysis between 9am and 10am. Transport came at around 9am and we headed down. Evie had slept very well and was feeling well and happy. We had a good session but it tuckered her out. She had not received a night feeding because the NG-tube in her nose had been removed and the G-tube needed a little more time before being used. No food through the night and dialysis again made her tired. She took a 4 hour nap this afternoon and woke up happy. They began feeding her through the new G-tube this afternoon and will continue through the night.

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A Few Thoughts

Evie is doing great and making the progress that everyone is hoping for. We are planning on being discharged early on Monday morning February 11th and going from here to the offsite dialysis center to be trained on how to safely administer peritoneal dialysis (PD).

Life has changed, yes. But that’s OK. Evie is still with us and that is all that matters. Live is all about change and how we choose to act and adapt to those changes. We love you all and thank you so much for your loving, never failing support. We know that the many countless prayers that have been given and are still being given have been answered and will be answered! We don’t know all things or why things happen but we do know that Heavenly Father loves us even if things may seem “unfair.” The Lord rarely takes our trials from us but He will always be there to lift us up and strengthen us (and others) through them

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Here are a few pictures of the rest of us during my 5 day ban from the hospital... the first two are from a "date" at the local disc golf course. The last one is our pre-dinner festivities at the end of the date.

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: 02/02-03/2013 - Saturday & Sunday

(02/02-03/2013, Saturday & Sunday)

Evie's highlight of the day Saturday (and most Saturday's post-PICU) is that her sisters were able to visit.  She decided to surprise them by planning what she called a scavenger hunt for them, and her little brother.  She had a few toys that she wanted to give to them, so she hid them in her hospital room, and they had to find them.

Sunday we followed our typical hospital Sunday routine, which was to listen to church music, watch a few short videos, and read scriptures in between the non-stop flow of doctors, nurses, and other personnel (nurse-assistants, nutrionists, physical therapists, etc.) It is hard to make Sunday feel like the Sabbath at a hospital, but we tried.

The highlight from a medical standpoint for the day was the Superbowl, or more accurately, the food that Evie ate for dinner. I know, that sounds odd.  It was a highlight because the day before Evie's mom had thoughtfully dropped off numerous homemade goodies the day before to effectively cater an in-room party for the big game and momentarily, Evie was excited to eat!

Here is a bit of dialogue from a chat conversion between Evie's mom and I during half-time:
Mom: Would the two of you like to Skype?
Dad: [Evie is] Sleeping.
Mom: Asleep for the night? Did she watch any of the game?
Dad: Maybe the first 5 minutes. She had about a dozen Doritos, quite a few vegetables, a couple crackers and cheeseball, then passed out clutching her little cup full of M&Ms. I don't know if she'll stay asleep or not...

She did.

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: 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: 01/30-31/2013 - The Exclusive 8 & Under Medicare Crowd

(01/30-31/2013, Wednesday & Thursday) Evie:

• Is not consuming enough calories -- she does not eat without external motivation.
• Does not require oxygen (has not had enough fluid intake to challenge this.)
• Has had blood sugars of 160+ since we started keeping track again.
• Continues to be exhausted because of:
  • Dialysis itself
  • The build-up of toxins in the bloodstream between dialysis appointments
  • Side effects of her medication
  • Glucose/insulin imbalance
  • Insufficient caloric intake
  • Lack of deep restful sleep
  • She's sick.
• Has been officially declared to have Stage 5 Kidney Failure (you guessed it, there are only 5 stages.) I've been told that on the plus side, this means that at the ripe age of 8, she qualifies for Medicare. 
  
  

  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: 01/29/2013 - Schooled & Cookies

(01/29/2013, Tuesday) Evie made it to the hospital school today for the first time in over a week. We went there first thing in the morning, right after breakfast. After 50 minutes she was entirely spent, and ready to go back to sleep. We'd planned to go to the playroom, so she fought through it. We ended up making pumpkin chocolate chip cookies--or at least I did while she slumped over the table. She went to bed. When she woke up nearly three hours later she had a cookie and declared herself full. After she was awake we were able to spend time with an endocrinologist as one of my items the day prior was to have her assessed for diabetes, so we're back to blood sugar checks prior to meals. She weighed 18.2 kg this morning.

Her high point today was making friendship bracelets while we watched the Disney Channel.

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: 01/28/2013 - Talkin' 'bout Discharge

(01/28/2013, Monday) Dialysis is life-saving. This is a mantra one must repeat when the patient has been dialyzed to the point of vomiting one too many times. Evie used to view it as an annoying or unpleasant stop in her day. All the other patients are 60 years or more her senior, but we still managed to do kid things there: homework, TV, games, books, etc. She now views it as a place of suffering. Dry weight 18.0 kg.

She slept upon her return--she did not get much food today, so it is certainly a good thing she has a feeding tube to provide her with nutrition, regardless of how scant it may be. Meanwhile, I met with the nurse practitioners in charge of orchestrating discharge while she slept. We discussed possible discharge time-frames, and I reiterated the list of things I believe must be dealt with prior to a successful discharge with no touch-backs (re-admissions).

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: 01/27/2013 - Nearly speechless

(01/27/2013, Sunday)

On the Home-front -- More strep-throat, so no visitors, no relief, no reinforcements. Bummer.

Evie weighed 18.1 kilograms today, further illustrating how small her food/fluid intake was during the 48 hours since she was weighed last. She didn't talk much at all until it was time for sleep (not too uncommon, I've been told that a feeding tube makes speaking unpleasant.) I can summarize our nocturnal discussion in a sad sentence: She no longer views the hospital as a place of healing, but rather in her view it has become a place of torture which she cannot seem to escape. I continue to try to console her, but her perspective comes from sad experience, not a flair for the dramatic.

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: 01/26/2013 - NG Tube The 2nd Step Closer to Home

(01/26/2013, Saturday) Last night was rough. The peak occurred around 0200 when we suffered a bout of very liquidous diarrhea which necessitated the lights being turned on and a partial bedding change. It was likely more traumatizing to me than her as it brought back memories of roughly nine weeks ago when my otherwise healthy child began having similar issues, namely vomiting, loss of appetite, and violent diarrhea. I do not believe she is having a recurrence, but with how hard the last few days have been, I'm not quite in the stoic place that I like to find myself in times of trial.

I don't have much to provide for an update today. My Evie bear was awake for about four hours total today. She didn't wake up until sometime after 1100. Meanwhile, gratefully, a different nephrologist (kidney doctor) had come on shift. I spent over an hour recounting the events of the last week since she'd been here. Then Heather woke up and we re-hashed a few of the more important topics for nearly another hour. My heart flows with gratitude for this doctor who actually wanted to hear me out.

Once Evie was awake, she ate a half cup of marshmallow mateys and declared she was full. She had a nap for a few hours, and when she woke up, we placed an NG tube (feeding tube). (You're welcome to hit YouTube if you want to see what its like--if watching it makes you queezy, just imagine experiencing it personally!) Not surprisingly Evie didn't enjoy it, but she held very still, and it was done and over before she had a chance to get worked up. She ate a popsicle and was determined to make it to the playroom for a few minutes, in spite of near exhaustion. The three of us played Qwirkle, then came back to the room.

Heather then left to reclaim the rest of our kids from neighbors, and church members homes. So grateful for people who step in to help us stay afloat. Heather had driven up Friday morning and planned to go home that afternoon, but the procedure had run long, and it snowed here so the road home was a parking lot, so she stayed. (Well, they call it snow here -- it was cold, and there were ice particles in the air.) I don't know if Evie was awake enough of the time to appreciate having both of us here for a whole day and a half, but it meant the world to me--and left me in a better place.

Evie ate another popsicle while I read her part one of "The Ordinary Princess", and then promptly fell asleep. Her feeding tube has been running since around 1730. It's now 2030 and I'm not sure if I should try to wake her up, or let her continue to sleep. Between the sore throat, the sore stomach, and the gauntlet that was the last three days, I think I'll vote for sleep. Here's to hoping that when tomorrow morning dawns, she'll again be ready to face it with determination.

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: 01/25/2013 - One Step Closer to Home!

(01/25/2013, Friday) Due to her scheduled procedure (to add a peritoneal dialysis catheter), Evie did not eat or drink after her late dinner last night, around 2100. We had dialysis from 0700-1100. She slept through most of it. They filtered her blood, and removed a whopping 0.1 liters of fluid, because her "wet weight" (her weight prior to dialysis) today was exactly the same as yesterday's "dry weight" -- This is due to her schedule yesterday precluding her from having an opportunity to eat, drink, or sleep whether she desired to or not. My sister asked me, how I was doing today. My response? Things are definitely better than yesterday. I'm not motivated nor prepared to be arrested for assault/battery today, so clearly I'm in a much better place mentally. Heather arrived as dialysis completed. Evie began watching something on Disney Channel while Heather and I had a meeting with "The team" to discuss "the plan" and talk about "the issues". Shortly after the meeting was over, it was time to go down for the procedure. We spent a fair amount of time waiting, but eventually at 1345 or so, the anesthesiologist gave her medicine that made her sleepy and giggly and took her away. At nearly 1600 we were told that the procedure went well, but we had to wait for her to wake up so that we could visit her one at a time in the recovery room. The procedure and recovery was supposed to take about an hour from start to finish. It took more than two. Everything went well, but there was a larger than expected bit of tissue which had to be removed that was essentially just a strip of fat (hard to imagine she still had any.) I'm sure it had a purpose, but in weighed priorities, it lost, and now she doesn't have it. I don't know if it'll grow back. She's got a fair amount of abdominal pain, but it was all to be expected, given the type of surgery it was. She's got a baseball style set of 8 stitches covering the inch or so incision which will be taken out in a couple weeks. (For orientation purposes, you can't see Evie's belly button in the picture below, but it is just out of frame past the top right hand corner.) Eating is a chore. Evie was not hungry when we came back to the room, so we let her sleep. Once dinner came (around 1945) she threw up--three bites into her first meal of the day--admittedly I provoked her, being agitated that she was not making any effort to eat. Afterwards we had a good discussion and we hugged it out. The trouble is by tomorrow, she'll likely have forgotten her new resolve, and the cycle will repeat. At least for now she's eating the rest of her dinner well (on her own). Its a pity she threw up her medicine, but not the end of the world--they re-dosed her.

At this point, they've thrown the kidney patient diet (low phosphorus, low potassium, low sodium, low sugar) out the window in favor of trying to get her to eat *anything*. Trouble is, dairy is bad for her as it contains things her kidneys can't process on a molecular level, so dialysis can't fix it. But she needs Calcium. But she can't eat many other (non-dairy) calcium rich foods. Once she's fully recovered, meal planning and nutrition for her are going to be brutal. We're crossing our fingers that Evie doesn't develop gluten allergy too, because at that point, just about the only thing she'd have left to eat is straight protein.

We'll be allowed to go home when

• The cause of her diarrhea is diagnosed, and/or it goes away
• We're able to stabilize her from a daily caloric/nutrition requirement standpoint
• We're able to determine once and for all whether she is diabetic
• We're confident that her oxygenation issues have been dealt with

I think that is everything. That could all happen this week. We'll be driving up here to check in and out of the hospital every other day until her peritoneal access is ready for prime time, about mid-February, at which point we'll be up here for about a week for training. Ideally that means we will be doing home dialysis prior to the three month anniversary of when Evie became sick.

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: 01/24/2013 - Rough Day

(01/24/2013, Thursday)

Today was hell.

I'm not going to drag you all through the emotional cesspool that was our day--rather I'll just shift perspective a bit--Evie:

• Isn't paralyzed.
• Appears to have no lasting heart issues.
• Has no brain damage. (Probably unnecessarily tying things in here, but she's not a Ute fan or a Pittsburgh fan.)
• Is more like Cinderella than her stepsisters Drizella and Anastasia (she's kind, caring, and helpful.)
• In spite of everything, she still trusts me.
• More importantly, she still trusts her Heavenly Father.
• Has not given up.

So today was okay.


Evie:

• Is not on a feeding tube, and is not consuming nor retaining enough calories.
• Currently weighs 17.9 kilograms, or 39.5 lbs.
• Will endure her 3rd day in a row of dialysis from 0700-1100 Friday, with the current total of this streak being 2.2 Liters removed.
• Is not currently on oxygen, as the theory is that if we get her and keep her "dry enough" she won't need it.
• Is physically exhausted, and would sleep the majority of the day if left undisturbed.
• Has no appetite. (In spite of the appetite stimulant she's been receiving, which has a side-affect of potentially causing "night-terrors")
• Will have surgery tomorrow after dialysis (most likely around noon) for peritoneal dialysis access.

Things to Hope and/or Pray for

• That she regains her appetite, and her ability to keep her food down.
• That we'll adequately resolve the oxygenation/breathing issues.
• Better doctor/patient family relations/communication
• Penetration of the bureaucracy.

I realize that my first set of bullets may have concerned you, so please, let me clarify: I was trying to get myself in a more positive mindset. The first set of bullets are all things that are not an issue, nor have they been. Nothing traumatic brain/heart/nerve system happened... this was just my poorly written way of saying, "We'll, at least we don't have these problems."

Make sense? Sorry if I gave you undue cause for concern.

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: 01/21/2013 - Recognizing the Realities of End Stage Renal Disease

(01/21/2013, Monday)

DISCLAIMER: This post is not intended to be a pity party (I certainly hope it doesn't seem like one.) Rather, it is just my thoughts and shifting perspective.)

Evie weighed 18.1 kilograms (39.9 lbs) at the end of today's dialysis, wherein, as I am told they removed 1.5 liters of fluid (12 hours previously that had removed 0.8). I don't think I have to tell you if you've been reading any of these updates that this isn't good. That being said, she feels much better having had all that fluid gone, and was decidedly vivacious tonight as we watched a movie.

I keep telling myself if we can just overcome the current struggles, the rest of this will be easy. I do the same thing when I exercise (at least I used to, back in the day when I exercised) -- sometimes you know that you are effectively lying to yourself... "Just 2 more minutes at 8 mph, then it'll be easy."--that sort of thing. Sometimes you know your plan is to increase the elevation, or to crank it up another 0.5 mph, but you convince yourself that things will be better in two minutes anyway. This whole ordeal has been a bit like that, meanwhile focusing on the end target the whole time. "We just need to fix _________ and then within a few days we should be able to go home, and then things will become more normal."--I know that it won't be normal, but more normal is acceptable.

However, today was a bit hard with its heart aching, gut wrenching, bone crushing (loss) moments. Like watching a slideshow of pictures from Evie's life so far, and seeing:

• A: The number of pictures that involved hospitalization (related to her Osteogenesis Imperfecta)
• B: The number of pictures she was having fun in water (lakes, rivers, ocean) that she is not allowed to be in any more.

I am adept at handling item A. I've known her since she was in the belly forming, and I knew her journey would not be light on doctor and hospital visits. But seeing pictures of her enjoying the water, and knowing that without additional divine intervention she simply can't do it anymore hurts. It doesn't help that I spent time talking with one of the more knowledgeable dialysis nurses Sunday night / Monday morning about the potential riskiness of swimming even in treated water.


Sad.


But this is a new limitation that I've known about for weeks, and am mostly adjusted to. Evie and I talked about it at length over a month ago.

Although I tried my best to help her stave off muscle and bone loss, it is clear that it has occurred, and that it is significant. She is emaciated, and dwindling. She will likely have a feeding tube placed before Tuesday is over. I guess I've been so worried about the effects of long term immobilization (today marks 8 weeks of illness), that I hadn't considered the impact of kidney failure itself. In the last day or so, I've realized just how damaging kidney failure is to bones. Bad news. If Evie were a camel, she'd need to carry something lighter than straw.

The thing that really has me feeling as though I have a pit of despair in my stomach though was having my wife kindly share with me knowledge that I just hadn't been tracking. Here's an excerpt from "CURRENT Diagnosis & Treatment Nephrology & Hypertension", Chapter 55 on Pregnancy & Renal Disease:

If you'd like more information, choose your own adventure:

• Light Reading: The National Kidney Foundation
• Heavy Reading: UpToDate

Somehow, I'd missed this, although I'm sure on the fringe it may have been casually discussed... In my mind it was a lingering wonder... "How will kidney failure impact her adult life?" I've still been in triage mode, still trying to endure 8 mph. Grant you, some may say that I am either naive or hopefully optimistic to simply assume that adult life is guaranteed. Fair enough, call me either. I operate under more of a guise of a plan than a real plan... As I struggle through our run, regardless of how difficult this information is, it doesn't change blessings which are hers to claim. God has a plan, and that is all that matters. We'll be okay so long as we pay attention and follow it.

So I keep my hand to the plow. No need to look over my shoulder--I must cut a straight row. I focus my eyes on the eternal target, and press forward.

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: 01/20/2013 - Urgent Late Night Dialysis Session

(01/20/2013, Sunday) [Today's update was originally multiple emails, thus the timestamps.]

09:32PM Evie's ability to oxygenate her blood deteriorated steadily throughout the day -- if she gets much worse, she will be moved back to Pediatric ICU. She had an echocardiogram and an x-ray. Both indicate that she has fluid in her lungs again.

They have called dialysis nurses back to the hospital to facilitate Evie having dialysis tonight, starting at about 2300 or so -- she'll simultaneously get a blood transfusion in attempt to get more hemoglobin into her (the transportation mechanism for oxygen in the bloodstream.)           

09:45PM Evie's doctor just arrived: They will not be truly dialyzing her tonight, but rather it will strictly be a fluid pull.   Evie will have dialysis as scheduled tomorrow morning at 0900ish. The transfusion will occur in tandem with tomorrow morning's dialysis.

11:00PM Evie's hooked up.   She'll be here for 1.5 hours, the target removal is around 500-1000 ml's.   The bumpy bed ride down to the dialysis center stressed her out, and her oxygen went further down... Evie ended up in a coughing fit and lost her dinner. :-(

12:43AM We're done, just waiting for transport back to the room... they removed 800 ml's. Evie watched Curious George, and now she has passed out. Waking her up to feed her prior to dialysis in hopes of catching up on what she lost tonight will be difficult, if not entirely fruitless, but I have to try.

---

Epilogue: Evie only requires 1 liter of oxygen, as opposed to 3 when she started. We'll see what tomorrow brings. In other news, Larry (Evie's equivalent to Christopher Robin's Pooh Bear) took the brunt of the blast when Evie lost her dinner, so once Evie was stabilized and connected for the fluid pull from the dialysis machine, I went about damage control.

Unfortunately for Larry (and me since I have laundry I need to do here) this is what I found in the only patient/family laundry area I know of in this complex:

So I went about washing Larry in the sink by hand.

Gratefully Larry seems to have made a full recovery.

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: 01/19/2013 - Probably Need a Transplant

(01/19/2013, Saturday) Early this morning I met with one of Evie's nephrologists (kidney doctor) and conferenced Heather in via Skype. We talked through several of the issues (having the surgery for a peritoneal dialysis catheter, possibly placing an NG-Tube, etc), and we officially discussed kidney transplant for the first time. Wa-hoo.

Two hours later, the family came to visit today although without Evie's younger sister (who was well enough to stay at a friend's house, but certainly not germ-free enough that it would be worth it to risk having her near Evie.) Having the rest of the family visit did Evie a lot of good today. Evie also enjoyed (she ate!) the homemade food that mom brought (Stroganoff & Chocolate Peanut Butter Chip Cookies).

Before Evie became ill, she was 44 lbs. She was weighed minutes before she had her seizure the day she arrived here, 7 weeks ago Sunday afternoon, and weighed 40 lbs. I'd say Evie doesn't have much more weight to lose, even though she is heavier (41.4 lbs.) than she was when she checked in. This is because when she checked in, she was severely dehydrated, but not enough time had passed that muscle or bone loss could have played much of a factor. If Evie dips below 40 lbs now, it would most certainly be the result of muscle and bone loss, not dehydration.

My last post probably didn't make much sense because I tend to be writing when I'm overtired. I do think I pushed her too hard doing homework on Wednesday, and doing physical therapy things on Thursday. The whole eating thing is stressful, and while I had good intentions, the conversations she and I had on Thursday night and Friday morning did nothing to make it less hard, if anything, I did a brilliant job of traumatizing her, which left both of us in a bad place on Friday.

Every decision made regarding her care is difficult. We don't want Evie to be insulin dependent, so we don't give her the one thing that has helped her effusion shrink in the past (steroid). We don't want to hurt her kidneys (which according to the test have no significant chance of recovery) so we don't give her ibuprofen, which may or may not help with the effusion. They started giving her aspirin, because neither of the other options sounded good -- but oh, yeah, this is the girl who needed half of her blood swapped out in 24 hours, so thinning her blood doesn't quite seem brilliant, does it? So today they killed the Aspirin, and went back to Ibuprofen, but a lower dose. Is that wise? It depends on if you believe in miracles. If you think her kidneys still have a chance of recovering, it is a dumb move. I'd argue though that if you have the faith to ask for functioning kidneys, surely that can overcome a little Vitamin I.

Last but not least, I'll share a couple snapshots of Evie's journey thus far. The time lapse is almost exactly 8 years. She's 10 months old in the first photo, and 3 months shy of 9 in the second.

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: 01/17-18/2013 - Pesky Pericardial-Effusion and PT: We Done Overdid It.

(01/17-18/2013, Thursday & Friday)
I know it wouldn't work, but the logical/sensible side of me checked out a long time ago. Have you ever had the fleeting thought that if you did everything backwards, perhaps you could have 20/20 foresight instead of hindsight? At 0200, it seems like a perfectly credible idea, just sayin'.

The last two days have been rough. Evie pushed herself rather hard while she was feeling well, and I didn't stop her. If anything, I was Mr. Encouragement coupled with Uncle Instigator. Thursday morning I let her use her walker to walk much too far. It seemed like amazing progress at the time -- Evie was in a great mood, and thanks to "Vitamin I" (Ibuprofen) she was feeling better than she had in weeks.

Here she is feeling totally chipper in the playroom.

The purpose of the Vitamin I is to reduce swelling -- In Evie's case we were hoping it would cause a decrease in the size of the effusion (liquid) surrounding her heart. Vitamin I also does wonders for joint pain which Evie has always had plenty of, but has typically just dealt with it in the past--that pain is much more severe during this hospitalization because of how long she's been immobile. The downside of Vitamin I is that it is rough on your kidneys, even when you are healthy. (So I s'pose I need to change my ways, and stop considering it as a post workout vitamin.) They'd hoped it wouldn't impact Evie much, but while it made her feel like a million bucks, they say her urine production tanked, so she was only on it for a couple days.

The next alternative would have been to give her a steroid, but that would have made Evie insulin dependent again, which we'd desperately like to avoid. The only other alternative I've heard is to try to drain the effusion, but it is in a difficult area and they don't want to risk that as long as it isn't affecting her heart's ability to squeeze. Unfortunately, the effusion does have a rather adverse impact on Evie's ability to breathe.  The fallout from quitting the Vitam** * Ibuprofen is that she'd gotten used to not having joint pain, and now it is back with a vengeance thanks to the all the exercise she got while she was feeling well.

A quick dash of good news: Our ex-girlfriend the cough moved on to other fish in the sea, and we haven't heard or seen her in two days -- here's to hoping that she doesn't come back for anything she may have left behind.

More good news: I think the flu has moved on from the homefront too. Bad news: it sounds as though Evie's younger sister caught something else while at school on Friday. What I don't get is how these things manage to spread in NC -- it isn't -15 outside, it hits the 60's and 70's more frequently than I expect it to, so how come school is such a disease factory? Just sayin'.

---

******At this point I fell asleep at the keyboard, so I apologize for the delayed update, but at least I didn't keep the several pages worth of mistakenly pressed keys*****

---

And I'm back. So Evie was on oxygen prior to dialysis Friday. Lately dialysis has given her a reprieve from breathing/oxygenation issues for about a day and a half, and then the night before dialysis, she requires oxygen. Friday was different though. She had dialysis Friday afternoon--they removed 800 ml's and finished around 1800. By 2200, she was already having problems breathing and as a result she had to get back on oxygen.

The effusion (liquid) surrounding her heart is causing her to not get enough sleep, which impacts the rest of her recovery. She sleeps until 1000, and doesn't tend to eat her first meal until 1100. That means she really only eats twice a day. And what she does eat is so far not enough--she is losing more weight. It is very possible that within the next few days she'll have to get a feeding tube.

The current expectation is that we'll be here at the hospital for another two weeks or so. If her urine production isn't able to ramp up, she'll have a peritoneal dialysis access put in.

Evie:

• Had 0.8 liters of fluid removed friday via dialysis
• Is back on oxygen, and requires it 24 hours a day.
• Is cough free
• Sleeping well? No. If I stay awake long enough to watch her, I can see that I was naive to think so.
• Is not getting enough calories in, and is losing weight...     It isn't for lack of trying, last night she had a ¹/₂ a piece of lasagna, ¹/₂ a quesadilla, most of a large piece of cheesecake, and most of a piece of chocolate pie. Problem, she didn't eat much the rest of the day.
• Weighs 18.8 kilograms, or 41.4 pounds
• Is able to move about well short distances with her walker, although at times she's too fatigued to do so. If her food intake doesn't pick up, the exercise will be detrimental as she has no fat to burn, so her body will start robbing what little muscle she has left.

In short, she could use more prayers on her behalf.

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: 01/16/2013 - Schedule Mishaps & Unplanned Successes

(01/16/2013, Wednesday) At 0200, the nurse informed me that we would in fact be picked up at 0700 for dialysis. Seemed odd, given the conversation that I'd had with the kidney team (deciding that from now on she'd do dialysis in the afternoons.) I questioned the nurse, but she sheepishly exuded confidence, so I just accepted it, and figured there must have been a new patient with more acute needs which altered the schedule.

I woke Evie at 0630 in an attempt to get food in her (microwaved oatmeal). At 0800, we were still waiting for the transporter to take us to dialysis. Our day-shift nurse called to discover that dialysis had never intended for her to go to dialysis at 0700, but rather had been planning for an afternoon appointment as we had discussed (in effort to avoid compromising her sleeping/eating schedules). Since we were already awake, they squeezed us in at 0930, and I managed to get Evie to eat more while we waited.

Evie was a homework track-star during dialysis--she did about 20 pages of homework while they removed a liter of fluid. Due to our late morning dialysis, we went straight to school even though Evie hadn't had lunch yet. I went back down to her room to collect her meal, and took it upstairs to the school so she could eat while she worked. We certainly could have skipped school given how hard she worked in dialysis, but I figured it would be a good distraction since today marked the 3rd day in a row that she thought mom would be able to come, but wasn't able to do so, and we'd already missed school on Tuesday.

While she was still at school I came back downstairs to talk with our case manager/social worker about what we'll do after we check out. It is looking like it may get ugly from a co-pay perspective... need to do more research in that area though.

When Evie returned from school we had another echocardiogram, after which we both took a nap, roughly 1630. We didn't wake up until almost 2000. The nap was good, the timing not so good. We woke up too late to order dinner, but the grill in the cafeteria was still open... and her nurse was able to order her a grilled chicken sandwich. Shortly before dinner arrived she vomited again (too much liquid drunk too fast) this time losing the majority of her evening's medicine. The up side is she hadn't eaten yet, so what she did eat for dinner, she kept down.

Due to the late nap, we stayed up and watched Disney Fairies "Secret of the Wings," (which she loved) and then Skyped with Aunt Angela and family. She really enjoyed it--particularly the inquisitive questions that her cousins asked which her sisters have never managed to ask. By the time she got to bed and was truly asleep it was closer to 0200. Bummer. She's desperate to go to the morning playroom session, but I'm not sure how solid of a plan that is.

Just before bed, she surprised me with a very epic achievement (100% her idea with no prompting from me): She used her walker to go from her bed to the bathroom, then stood UNAIDED for nearly a minute while washing her hands. She had a hard time falling asleep as she was giddy with excitement which she justly felt over the milestone.

Evie:

• Is keeping food down "better" and her appetite is improving.
• Had 1 liter of fluid removed today via dialysis
• Weighs 42.4 pounds.
• Still has a cough, but it has been merely an acquaintance the last day or two... here's to hoping it will become more of a bad ex-girlfriend that you remember, but you never hear from or see anymore.
• Balanced and stood on her own for a minute today!
• Looks forward to trying to use her walker a bit in the playroom tomorrow.
• Is getting her indomitable spirit and swagger back.   :-)

On the Homefront

My poor angel of a spouse continues to suffer while I am away, and sadly there is nothing I can do about it. Heather wanted to visit us on Monday, but little brother came down with the flu very suddenly that morning, while eating breakfast prior to being dropped off at a friend from church's house. Babysitting arrangements had already been made for him on Tuesday as well, but he continued to vomit through the night, so Heather couldn't come on Tuesday either. Surely she'd be able to come Wednesday... but it turns out she caught what he had, and got sick in the wee hours of Wednesday morning as well.

How does the phrase go, when it rains it projectile vom***? Never mind. Anyhow, while at home sick herself, blanketed by my still recovering toddler (recently re-monikered "King Cling") the school called to tell Heather that Evie's younger sister had just lost her breakfast on her desk in the classroom. Heather was too out of sorts to manage to wrangle little brother into the car--luckily one of our church friends was only a phone call away to lend a helping hand. Hopefully Evie's older sister will miss out on the fun--wish I could help, yet so glad I'm not near enough to contract it

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: 01/15/2013 - Inspirational People

(01/15/2013, Tuesday) Evie woke up around 1000 to discover that the extra dialysis session scheduled for today had been canceled. (Hooray!) Likewise, her mom's visit was canceled for the 2^nd day in a row. (Boo!) So after doing a bit of in room PT and eating, it was great to have one of the child psychologists drop by for a crafting/chatting session to make the day more exciting.

Regrettably it caused her to miss school, but I'll call it a mental victory-- although it seemed rather light on the talking about feelings side of things, and much more like a visit by recreational therapy. It is what she needed.

Afterwords she took a bath, and we found a nurse to french braid her hair for us. We ate a late lunch/early dinner as tonight was the movie night activity she'd planned with recreational therapy in the playroom. We enjoyed making little eye masks and watching Disney's "The Incredibles" with a bunch of other kids.

I got talking to the mom of one of the kids we play with in the playroom more--a 6 or 7 year old seemingly care free happy go-lucky fellow with lots of energy that doesn't seem sick at all--turns out in his entire life, he's never spent more than a month away from UNC Chapel Hill before being hospitalized for this, that, or the other thing. Poor guy has no colon, amongst other things. The mom was telling me about her other kid, his sister who sounds suspiciously like an OI patient. The mom seemed much more well adjusted than a few of the parents I've met here--lucky for the little guy that is the case, it sounded like a tremendous load to bear. Inspirational people.

We got back to the room about 1930, ate a bit more food, and she got to bed around 2100. I spent an hour trying to get the nurses to confirm/deny the appointment time for dialysis Wednesday, but they seem unable to find out for certain. They told me to plan on the afternoon, as that was verbally the plan from the kidney team.

Evie is sleeping well.

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: 01/14/2013 - Hospital Living, A Day in the Life

(01/14/2013, Monday)

Yesterday's Extras

• Another vomiting spell claimed Evie's dinner during the night last night, which was particularly worrisome, given that it was the only meal she really ate much at all yesterday.
• Evie was able to Skype with her long lost best friend from Maryland last night before bed. She read the entirety of a bare-book she'd authored and illustrated over the summer which was based on their friendship. They talked for almost an hour. I think that conversation alone did more to buoy up her spirits than anything else that has happened lately.

Today

0630: Woke up Evie to try to get her to eat breakfast prior to dialysis. Helped her wake up happy by letting her play her My Little Pony app. She ate a quarter portion of oatmeal.

0700: Dialysis begins. During regular dialysis, they removed 0.5 liters of fluid. Then we extended by a half hour, and during the overtime we were no longer filtering the blood so fluid removal was the sole focus. We removed an additional 0.5 liters, for a total of 1.0 liter removed on the day, at which point we conveniently no longer required additional oxygen. Evie once again weighs just over 43 pounds.

1230: Got back to the room to eat breakfast/lunch which had already arrived and was getting cold due to our overtime play in dialysis. Shortly after our arrival, the nurse's assistant (NA) came in to get Evie's stats (blood pressure, temperature, heartrate). Prior to her arrival, I'd had Evie carefully use her walker to move from the bed to the chair to practice walking. The NA initiated the following conversation:

• NA: She needs to get over here and stand on the scale, I need to weigh her right now, and then get her stats.
• ME: She was weighed in dialysis twice. She doesn't need to be weighed again, she just really needs to eat.
• NA: No sir, she needs to walk over here, she has to be weighed here as well and I must get her vitals now also.
  
  (Enter Evie's nutritionist who has come to collect our food intake journal.)
• ME: [EYES BUGGING OUT OF MY HEAD] My child kept virtually no food down yesterday. She has been awake since 0630 this morning, and has eaten next to nothing. She MUST eat now -- leave the room now. There is nothing you need that cannot wait -- you will not weigh her. You will come back later if at all for the other things.
  (Exit NA)
• Nutritionist: [Shocked look on face] I'm glad food is the priority...
• ME: Evie will eat now. Food journal is on the door. Ask me questions while she eats.

1300: School. Dominantly a reading comprehension focus today, as we'd done lots of math during dialysis.

1345: Cardiologist comes by to talk to me about her pericardial effusion (liquid surrounding her heart). The average person has about a teaspoon of fluid, and is a good thing as it helps reduce friction. Evie has roughly 1/3 of a cup surrounding her heart right now. Currently isn't impacting the effectiveness of her heart's squeeze though, so hooray for that.

1400 -- 1600: Playroom: Played a kid's board game whose target audience is sick kids at the hospital -- you spend the whole thing collecting tokens, and sharing your feelings -- good chance to talk through some issues.

1630: Evie makes plans with the recreational therapists to host a movie night in the playroom... after deliberation she selects "The Incredibles"

1645: Pulmonologists (lung doctors) come by to discuss her recent oxygen need, and her cough. They theorize that the cough and oxygen need stemmed from fluid remaining where it shouldn't have been which made sense, given the fact that prior to today's session, no fluid had been removed since last Wednesday.

1705: Another Pulmonologist comes and talks more about it.

1715: Skyping with Grandparents.

1745: Eating -- Grilled Cheese Sandwich (That's right, they're not just for breakfast anymore!, Macaroni & Cheese, Chocolate Chip Cookie... I've been directed to have her eat whatever she'll eat, so long as she keeps it down.

1830: Skyping with her Maryland friend.

1900: Start getting ready for bed.

2100: Light's out--yeah, it took forever tonight.

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: 01/13/2013 - Discharge "Soon" (Whatever that Means)

(01/13/2013, Sunday) Today started off a bit rough due to the lousy sleep, and the flow of doctors that morning brings. By the third time someone with a stethoscope tries to wake you up to tell you "Hey honey, I'm just going to listen." You don't really care that they're only listening, you want them to go away and never come back. Her appetite today is significantly reduced, but I am not fighting it as I don't want another vomiting episode. We had an echocardiogram, the results of which I have not yet heard--which typically means relatively little change in status.

Evie has spent her day enjoying church music, reading a magic treehouse book, and playing various games. I have not yet found a way to coax her into doing PT as her appetite has been nearly non-existent, and her cough doesn't seem to be improving.


The past week's improvements include:

• Back on solid food.
• TPN (dinner in a bag) has been discontinued.
• Removal of PICC line -- only line still in is her dialysis line in her chest--they do blood draws for labs during dialysis now.
• No more blood sugar/insulin needs -- once the TPN stopped (25% of which was dextrose), magically her blood sugar seems to have righted itself.
• Her blood pressure seems is more in the realm of what it should be, dropping from the 140's over 100's to 100-110 range over 65-80's.

Between questioning the Nephrologist (kidney doctor) and her dialysis nurses, I've been told that she is quickly approaching being stable enough that she will be well enough for discharge "soon". (Such a relative term!)

Prior to discharge, she'll undergo a procedure to get an access/catheter put in for Peritoneal Dialysis. Unfortunately, the latest bit of information I have learned is that the standard wait time for its use is 4-6 weeks after surgery so that it can heal to the point it is ready for use. So unless we get to start early we'll be driving up here every Monday, Wednesday, and Friday for 4-6 weeks after discharge to have hemodialysis.

So, we are faced with a 1.5 hour drive each way, with 4-5 hours spent here, or we could stay somewhere in Chapel Hill for the next 4-6 weeks (but not the hospital.) Superb. There also remains the peritoneal training that Heather and I are both required to attend for 5 - 10 days at some point before we'll be allowed to do it at home on our own.

I was also informed today that since the hospital dialysis unit is in-patient only, we will have to check in and out each day we are here for dialysis. I have a meeting this week with the social worker to discuss this, as it poses a big problem if they bill the insurance company for it that way. I pay $150 a day to enjoy the hospital with Evie. If it is a continuous stay, that cost is capped. If it is several separate stays, it isn't (until I hit some ridiculously high number for the year.)

Things have most definitely improved, but given how things have gone, it is difficult to shake the "I wonder what will go wrong next" mentality.

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: 01/12/2013 - Family Play Time

(01/12/2013, Saturday) This morning we slept in until around 1000, and then we had breakfast (whole-oat oatmeal with craisins), then we did more in room PT, this time, just encouraging Evie to scoot from one end of her hospital bed to the other each time she passed a level on Unblock me (a block moving app, similar to the game "Rush Hour") She did this until she got tired from moving, then she played her My Little Pony app for a couple hours.

Evie fell asleep about 30 minutes before Heather and the other kids were due to arrive, so I met them downstairs, took the kids to the playroom, and Heather just hung out in Evie's room for not quite an hour, at which point she woke Evie up so she wouldn't miss her chance to play, as the playroom closes at 1600. Evie enjoyed playing on the floor with her little brother, and he was thrilled to be able to play with her and get so close. I entertained the other two while we played and made a giant wood block structure:

Afterwords we went back to the room, and the recreational therapist brought us everything we needed to make Vanilla Ice Cream by rolling around a ball on the floor to each other. It was messy fun, and we wished we had something other than a plastic cereal spoon and plastic knife to get it out with when we were done, but it turned out pretty good.

At that point I should have gone home, but we had a brief family council (prompted by Evie) and after hearing everyone's thoughts on the matter, we decided it would be best if I stayed here. She misses her mother, but she is less stressed/anxious when I am here I guess. I miss the other kids, but at least I had a few days with them last week, even if we were mostly doing chores together when I was home.

Most of all, I think the lack of time Heather and I have had to spend hanging out together, even to do something as rudimentary as talking about what to eat for dinner is taking its toll. Don't get me wrong, we're grateful for phones and Skype, as well as the chance to see each other, but it is still rough. Not quite sure what to do about that, and it is looking like life won't settle for a while yet.

In the later evening Evie ate her dinner. Unfortunately, she promptly vomited it back up. I think this one was my fault, I was trying to make sure she ate enough, and I think she was trying to make me happy, and I think her shrunken tummy got overstretched.

Another downer was that the cough she's had since the day she left Pediatric ICU has become more and more pronounced. Luckily, it isn't particularly severe, but like bad hiccups, you can't make it stop when you want it to. She also started to complain of chest pain. She'd been disconnected from all monitoring/lead lines, and when we hooked her back up before bed, her oxygenation rate was low, hovering around 89%. So she went back on oxygen, this time though only at 0.4 liters, so it isn't severe, just not the trend I wanted to start. Due to the chest pain, we had a late night in-room chest x-ray, but initial feedback is that nothing looks particularly interesting. She is not sleeping particularly well.

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.