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.