So let me catch you up :)
The diarrhea has stopped! Hallelujah!!! WHY? You might ask...we put Mills on a NATURAL form of the ketogenic diet! Her daily smoothie now consists of chicken, avocado, spinach, carrots, coconut oil and butter...lots of butter LOL! BUT its organic butter... I take about 3-5 hours one day a week and weight it all, cook it all, puree it all, measure it all and then freeze it. A labor of love to be SURE, but what the hell, I'd be making her baby food anyway so its all good. Not only is this food WONDERFUL for her little body, she has also gained a TON of weight :) Drs were concluding that her slow weight gain was due to neurological issues...not to the fact that the stuff she was eating was making her shit her pants 2-3 times a day...that couldn't have anything to do with it HUH?! So, once she got this yummy, holistic food in her belly she started waking up :) Her awareness increased, her muscle tone increased and she started vocalizing! NOT to mention she gained 2 lbs in 2 months!!! NO MORE awful pooptastrophies! GO MILLIE!!!
Sam made Mill a pretty bracelet, she LOVES it! |
"I found my finger!!" |
SUPER GIRL!! |
"Hello Buggy, wanna play?!" |
In addition to that, I guess May-June is worth mentioning....
So Mills went in on May 28th for a bone marrow biopsy for issues relating to her platelet count...
Sitting up like a BIG girl!! |
She was such a good girl, did GREAT! The results came back with low iron but no abnormalities in the marrow...good news! She was given sedation and slept for the next few days. We figured it was the anesthesia ..then a few days later, still sleeping so we figured it was because she had gained all that weight. So we let her sleep. This went on for about 2 weeks...
Then she started this dry, hacking coughing and needing more oxygen....a little off but not completely unusual for Mill. Her feet had swollen a bit but I simply figured this was because she hadn't been moving as much. I noticed her feet on a Friday...Saturday was "EH", no difference but no improvement. Sunday morning, at 3:32, I woke up to her coughing. I went to change her diaper and rolled her on her back and her face was COMPLETELY swollen!!!
And I thought "OH SHIT!!! She's weezing and swollen!! She's having an ALLERGIC REACTION!!!" So Penn and I rushed to the ER at 4 AM. (Luckily my dad and darling sis were in town so they stayed with the boys) The VERY short of that day was NOT an allergic reaction but EXTREMELY low electrolyte imbalance!! Millie's sodium was CRITICALLY low...to give you an idea, normal is 130, Mill was 108! It was the lowest any of the PICU docs had ever seen....
Like Will Smith in "Hitch" swollen! |
So they started several IVs with all different fluids....oh yeah, we were in PICU as well. So that was Sunday and Monday...then Tuesday they dropped a bomb on us...Millie needed a blood transfusion! Her red count was so low due to the imbalance that she could not continue producing blood...very scary to this mama and dad!! The process was far less scary than on tv though LOL! And within 12 hours her red cell levels were doing well :)
Father's Day in the ICU |
finally sleep very well :) |
2 weeks in PICU and then we were moved upstairs to the general floor...we were using pill supplements by this time and didn't need the constant iv treatments any more....on Friday (2 weeks later) we were ready to go home!!! They took out her pic line and we went home!!
Then that Saturday happened... Our long time fluffy companion Cortez "the Killer" passed away...we were heart broken.
We MISS you buddy!! |
We continued on, talking with friends and went out on the patio; as I put my phone on the table, it lit up (it was on silent). It looked like an automated number and I thought why would someone like that call this late (by now it was 9p), so I answered.
PHONE: "Is this Nicole?"
ME: "It is?!"
PHONE: "This is Susan with EMT, Gwen wanted me to let you know that Millie is being transported to Vanderbilt Children's Hospital by ambulance....blah blah blah......" It all faded out by that time....
So I listened to what she said and called mom. The EMTs were still working on Mill. She said the power went out and she was having trouble keeping her oxygen up and she looked a little swollen and blue (given she was working with a flashlight in the dark, bless her!!). The EMT said her oxygen was stable and they were about to load her up...we ended up beating them to the hospital by about 15 minutes... LONGEST. WAIT. EVER.
As the ambulance pulled up I could see her moving and I can not explain with words the amount of RELIEF I felt at that moment!!!
Waited and waited in the ER...she got there about 9:35P....finally about 2:30A I asked what the plan was (I sent Penn home at midnight) and they said they were going to release us.... I was not comfortable about this decision as her respiratory rate was in the 60s and 70s, her heart rate was also very high, 190s. Now of course, the ER docs said they felt her heart rate was a neurological issue....in laments terms "Get used to it"... I KNOW that was not true as she had a "normal" heart rate for a while. I said I wanted her observed, that she just wasn't acting right and they admitted us at 4A...
The situation gradually worsened Sunday and buy that afternoon Millie's heart rate was 238 and her respiratory was so high she was hyperventilating...
SUPER SUPER long story: She had a staph infection from the pic line removal.
I am just going to say I TOLD YOU SO!!! I can only imagine what would have happened had I taken her home and the infection would have completely taken over... THANK GOD I listened to my inner voice!!!
So, after another week at the hospital making sure that's under control, we went home on 7/1 with a pic line and iv antibiotics to finish.
Today: Millie is well :) She's cutting more teeth, poor baby!
She went on like this for 45 minutes that night LOL!!
Not sure what is in store now...we took the summer of from therapies, may look to pick some of those up. We now have a wonderful high chair for her to sit in (thanks to a swap from a high school friend!!) and a play saucer to sit in and look at all the fun things to play with :) Muscle tone has really increased so we are excited about that!! Still lots to pray for: we would love for her eyes to be open more, more alertness and movement, increased muscle tone...we are going to start working on reaching for toys and sucking/swallowing. She is making great improvement on her own on the latter but I'm hoping with some OT she can maybe start taking her water from a bottle!! Of course, that's like a 6-12 month goal....she'll get there :)
I also started a Facebook page for families in the Mid TN area (and elsewhere) who are looking to help heal the special needs child in their life with a holistic approach. The page is called Holistic Healing for Special Needs. I am hoping to meet parents on a similar journey for advice, ideas, support and community. Please feel free to share.
XOXO Millie and Mom
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