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.

---

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.

---

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

---

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: 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: 01/24/2013 - 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: 01/20/2013 - 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: 01/16/2013 - 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: 01/14/2013 - 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.

One Year Ago Today: 01/10/2013 - Baby Steps Across the Room

(01/10/2013, Thursday) Today was a non-dialysis day for Evie, so we slept in until nearly 1000. After that, it was a non-stop stream of doctors, nurses, physical therapists, nutritionist, child psychologists, etc.

As rough as it is transitioning to home life with a bit of work peppered in there, transitioning back to hospital living was more tough. The doctors have been used to me being a constant figure that is fairly up-to-speed on things, and after having been gone for four days, I no longer had a good bead on where things were at. It was like high school physics class all over again:

Challenge: "What (insert random question here I should know the answer to)?"
Response: "I don't know."

Since Evie's TPN was turned off a few days prior, there is now concern that she isn't getting sufficient liquid or nutrition, so Thursday -- Saturday it is my task to document everything she eats and drinks. The conversation with her nutritionist was more confusing than it was helpful--I *SO* wish I'd followed through with the impulse to make the nutritionist order Evie's brunch that day. Any attempt to acquire "appropriate" food by ordering through hospital food services is laughable.

PT helped Evie replicate her success from a few days prior, and she crossed the room using her walker twice! The first time she cried. The second time her joints had warmed up a little, and although she was clearly pained, she gritted her teeth, and got it done without a peep.

Now that we aren't in Pediatric ICU, we don't often get to have the x-ray come to bedside, so we made a trip down to the basement to take a few good shots of her chest (checking on her lungs and the fluid which surrounds her heart.) After that, we came upstairs and removed her PICC line, which had been in long enough that there were worries of possible infection. With all that going on, we didn't make it to school, but it turns out it may not have happened anyhow, as all but one of the teachers were out with the flu (and they'd all had flu shots--so encouraging!)

The biggest news of the day is that she has crossed the line of demarcation and is no longer insulin dependent. Shutting off her TPN seems to have resolved the matter. The rest of the day was uneventful, but due to a late nap we didn't manage to get to bed until after 2200.

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: 01/05/2013 - Hospital Hijinks

(01/05/2013, Saturday) Saturday kicked off about as well as you can expect a dialysis day to go, which is to say not too smoothly. Here's a picture of the breakfast that was delivered (we aren't able to choose what comes for breakfast on dialysis days due to the early hour.)

As a reminder, we're on a "Low fat, Low Sugar, Low Salt, Kidney Friendly, Soft Diet". Keep in mind that this is for breakfast. What we have here is:

• Grilled cheese sandwich
• Rold Gold Pretzels
• Banana
• Vanilla cupcake with sugar cream frosting

Evie is allowed to eat: Nothing pictured. That's right. She can't eat the grilled cheese sandwich (even if she enjoyed those for breakfast... c'mon now, who doesn't?) because of the cheese (the grease/fat is bad too.) No pretzels, too much salt, too hard. No banana -- Potassium is a no-no for those with punked kidneys. The vanilla cupcake isn't exactly what I'd call low sugar. I tell you what, if what we're going through is ever made into a movie, they'll have to alter the facts to make it more believable.

So after skipping breakfast, Evie tried to sleep through dialysis for 4 hours. She was moderately successful. Once we got back to the room she enjoyed the early lunch that I was able to order (peaches, yogurt, etc.) After that it was time for a sponge bath, and washing her hair. Luckily the nurse's assistant came and rescued me because I was in a bit in over my head. Shortly after that Heather and the kids were able to come visit.

We hung out in the playroom--the girls worked on craft projects with the sorority girls that volunteer on Saturdays--meanwhile, her little brother and I ran in circles around the room. Good times.

Afterwords Evie had another test, this one checking to make sure she didn't have any blood clots. She doesn't! While she was gone, I went through the massive headache to order her dinner. The doctors had changed the type of diet restrictions she was on--it was totally laughable, I couldn't order anything. It was even more precious because the doctor had specifically told me to order her peanut butter and beans/legumes to help her up her phosphorus... and both were blacklisted given our dietary restrictions. Epic. Once we completed those shenanigans, we did laps around the floor with a red wagon while we waited for Evie to get back.

Upon her return, we opened a package that the Lone Peak Lady Knight's Volleyball Team sent Evie -- it had arrived some time ago, but we hadn't managed to bring it to the hospital to open it until Saturday. It was full of all kinds of goodies for Evie, and her siblings. The thoughtfulness and generosity was simply staggering. I suppose it was a combination of human kindness, and sheer love that they have for my sister--and by extension us.

Shortly after that, the kids and I drove home. We got home at about 2200. First thing I saw? A big envelope from our health insurance provider stating that they wanted our permission to give us an individual case manager and specialized coverage due to "a catastrophic life event". Not sure how I feel about the label, or what they're proposing.

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: 01/04/2013 - Hooray For Soft Foods!

(01/04/2013, Friday) The night was fairly good. Evie vomited in the middle of the night (0300), but that was the only interruption aside from the frequent blood pressure checks due to her blood pressure being higher lately -- it leads one to wonder if her heart can't figure out why all the blood is staying within the circuit now. It makes me think it had gotten used to the "slow leak". We didn't truly get up to face the day until almost 1000. Since dialysis days start so early, it is nice to take a break when we can.

We had lots of visitors today as well. Her nephrologist (kidney doctor) came by first and we talked about her x-ray results (everything is looking better, from lungs to heart) followed by the nurse manager and floor supervisor (who among other things, came by to discuss "weigh-in gate".) We had lunch, and then it was back off to the hospital school for art and math. Afterwords she came back to the room and started to nap, but then they had to check her blood sugar, so the nap ended quite short.

She read through two of her books today and finished her weaving project before her "soft-foods" dinner (we graduated!) which included applesauce, peach slices, beef broth, a dinner roll, and a smoothie. She ate all the broth and the peaches, the rest of it (even the smoothie!) wasn't up to her standard. We spent time with an occupational therapist afterwords, and did some exercises. We had to change the dressing on her PICC line later on this evening, which was a bit traumatic, but other than that, it was a good day. Check out the sunset:

By the Numbers:

• She's required 5 units of insulin on average per day. Still. Worrisome. Blood Sugar range: 97-225.
• Hematocrit: 28.5%, Hemoglobin 10.0, Platelets 122
• Blood Pressure: Range 120/82 -- 139/107 (changing from 2.5g's of medicine twice a day to 5g's once a day.)
  
  
  

  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.