Its Always Darkest before the Dawn.....

In the beginning of the last post I vowed to blog more....and it's the end of October....please join me in my laughter!!  It's because at that time I thought things were getting better, but its always darkest before the dawn, and there were darker times to come.

WARNING: This blog is not the best example of my literary genius...it is very rushed and with little detail, but hey, I am "putting" it out there and next post will be better, I promise!

July went about the same....there were hematology follow ups that lead to pediatrician follow ups that lead to ER visits where they would do tests and tell us to follow up with hematology on Monday.... We would and then they would call in the middle of the week say something is off and go do blood labs with our pediatrician...they would call and say things looked worse and to go to the ER....

Neal's BDay at Pancake Pantry, next to the hospital LOL!

We had a homeschool day at Nashville Shores...isn't she sweet?!?!

One of these times she was very swollen, we knew things were off, and the ER did as well but being it was a Friday evening there was nothing to do and we had a hematology follow up scheduled on Monday so they said let it ride...

Millie and Mom in the ER...you can see how swollen she is...

Let me explain that what we/they were watching was her creatinine levels...these show how well your kidneys are functioning...we were really struggling with metabolic acidosis, anemia and kidney function, it was a vicious cycle.

When we showed up at hematology on Monday (8/12), our doc (Dr. Snyder, LOVE her, she is fabulous!!!!) did NOT like what the labs were showing...

Millie was very swollen though her labs showed she was extremely dehydrated, her creatinine was extremely high, signifying kidney failure.  We also noticed at the dr office when we fed her there was blood in her stomach.  Another significant difference was she had gone from 1/4 liter of oxygen that morning to a whole liter of oxygen over the course of a few hours.  All of this into consideration Dr. Snyder sent us immediately to nephrology (kidneys) with a warning that they might admit us (DUH LOL!).

Dr. Jones (our nephrologist) really had no ideas other than the labs were critical, she wanted to get a urine sample but Millie hadn't peed in a little while.  We all decided to admit and take a deeper look at what was going on.

We went to ER and waited, Dr. Jones came by to check Millie's urine bag and there was a tiny bit, but there should have been MUCH more by that time.

We had a room, went upstairs, Mill was now on 2-2 1/2 liters of oxygen and more swollen (if that was possible!).  I went to feed her at 7P (she hadn't eaten since 11A) and there was a LOT of blood in her belly, we called the resident and she felt it was ok to feed so I did.  (my mistake!) 

Luckily, the head nurse that night was VERY familliar with Millie, we had had her several times :) I fed Millie and almost immediately her oxygen dropped, needing 3 liters to keep her numbers up.  (By this time she had not peed in nearly 8 hours aside from the tiny bit we collected.) I started gathering our things because I knew the situation would require PICU.  We tried to help her get comfy to improve numbers and then it went down hill.

I told the nurse that Millie suddenly looked very pale and bloated....and then her oxygen started going from 90 to 80 to 70 to 60 very quickly.  3 liters is the highest the regulators on the floor go so they started bagging her and called a "rapid" (which is basically 911 inside the hospital).

No one was coming....it took FOR. EVE. ER.  her oxygen was hanging in the 40's and so I picked up the phone and called again, the nurse said tell them the room number and tell them STAT.  About 5 seconds after I hung up the team came.  This is where it turned into something from TV.  

There were probably about 20-30 people in the room.  Millie was pale, bloated and lifeless as they were flopping her around on the bed trying to get an airway in her.  I just stood back and watched thinking "this is it."  

Finally after what felt like an eternity but was probably about 5 minutes they had her oxygen and pulse up and did not need to say anything to me, we all went to the elevator to go downstairs (to PICU).

They tried to get a blood sample, it was hard because she was so bloated.  When they finally did, her ph came back as incalculable, what this means is essentially her kidneys had stopped filtering and her blood was so acidic that the alkaline levels couldn't even be detected.  She needed a central line immediately to rectify the ph but in order to do that they had to put her on a ventilator.

A L O N G wait later, I was able to come back in the room.  IT looked nothing like sweet Millie there.  She was still so pale and bloated and had 6 different bags of stuff going in (which over the next 24 hours would take the swelling up), she had lines in and lines out and the breathing tube.

They said they were going to move us to the "red unit" so Millie could have her own team.  We got there and at this time it was 1:30 in the morning, I was drained and couldn't hold my eyes open so I passed out.  They woke me up briefly to get my signature for a blood transfusion (which at that point was her 5th, to be followed by 3 more during our month there).

I woke up in the morning, about 6 and asked how she was.  They said she had started peeing again (THANK GOD!!!) and she had stool, though the stool was extremely bloody.  This day, Tuesday, was critical.  They were monitoring her blood pressure closely, their goal at the time was 30-35.  Those numbers are very low, over the next few days the goal was raised to 40s, 50s all the way to 90s.  They put in an arterial line to keep a closer eye on the bp.  Along with the central line she had a picc line (and talks of a port).    

To be honest, there was SO MUCH going on I'm sure I'm leaving parts out. BUT (big but here, hehe!) each day she got better and better and the doctors were hopeful.  

I couldn't bring myself to take a picture of her because she was so swollen, I did not want that to be the last image I had of her.

It may not look like it but the swelling had gone down a great bit!!

There were discussions about her diet.  They asked if it was something I came up with on my own, I would tell them "No, it is from Cincinnati Children's Hospital and they have several patients on the natural keto diet."  There was talk of putting her back on the manufactured diet but the nutritionist at Cinci felt the manufactured diet didn't work (because her body wasn't accepting it) and the reason she was getting sick on the natural diet was because we pushed the ratio so high on the manufactured diet to get it to work that now that her body was accepting it (with natural foods) that it was too much.

SO, we decided to do a normal diet since her seizures had been well controlled.  THIS has made all the difference :)

Overall, 3 1/2 weeks in PICU (well, one night upstairs during that time but we were sent right back down!) and a week on the floor for monitoring and we are doing well!!  It was a very slow progression but her doc said he was very impressed with how well she recovered from where she had been!!  I don't have many pictures to show of just how swollen she was because I remember thinking "I will NOT let these be the last pictures I have of her!! THIS is not Millie!".

Millie's muscle tone has improved and she is very vocal.  She has grown a TREMENDOUS amount!! She went from 6-12 month clothing (what she wore when we went into the hospital) to a 12-18 month size and we are very close to needing 18-24 month!!  She went from 15-18 lbs in a month!!  She is now 21lbs!!  I knew the keto diet was not a healthy one but WOW!  

(The pictures below are in reverse order =/ so if you want to start from the bottom and scroll up, that will give a better idea of her progress!!)

PT Workout!

Home at LAST!!! Eating like a BIG GIRL!

Bath time Before and After :)

We are getting back into therapies and everyone from our home nurses to therapists are just amazed by how well she is doing :) We are really hopeful in making connections with a foundation in CO called the Realm of Caring Foundation...you may remember them from this story.  

As of today, Millie is doing great holding up her head, she has even been bouncing on a therapy ball and holding herself up!!! She has been pushing up with her arms and working VERY hard!!  She is such a fighter!  

One thing is her spasms have come back :( Thinking (PRAYING!) it is due to her issues with constipation, we go to Cinci Nov 14-15 for EEG and Neuro/Genetic follow up so while we may not get any new info but we can "check it off our list" and move on to other things.

Until then....Lot of LOVE!

XOXO Millie and Mom