Her Story Is Long….But She Will Be Taken Of Of Life Support Soon.

I know I’ve been away for a bit, but I truly need to post this and need lots and lots of prayers, thoughts, etc going up to the Heavens for this family!! This dear family lives in my town. My husband & I know them. Dasa, the mom, grew up in the same town I did. It’s just really sad! Thanks in advance for reading, and praying! My RB family are awesome. You have my permission to send this on to your friends, etc. Thanks, ~Sheila

Her Story Is Long….But She Will Be Taken Of Of Life Support Soon.
Here Is Her Story…


Mikayla Gain (I didn’t take this picture. It’s from Dasa)

A bit about The Gain Family……

We are a family of 5 who until November 6th, 2009 felt like we lived a semi-normal life. John and I have been married for 5 years and have three vibrant, beautiful little girls. The oldest being Mikayla Paige (she’ll be 5 in Feb 2010! time flies), who was diagnosed with Alpers on 11/6/09 , Morgan Cheyenne, age 3 (who has a rare symptom and is awaiting testing for the same disorder) and Madison Nicole age 1. (who is also awaiting testing, but is symptom free)

We truly cherish every single moment, every single hug, and every single kiss. Our girls are our world and we are dedicated to doing anything it takes to keeping them healthy, and happy.

John and I both stay at home with the girls and have dedicated our lives to them, and researching for a way to slow this disease-one that is robbing our daughter of her childhood.

We reside in Stephenville, Texas and have extended family at First Assembly, where we’d started attending a few months ago. Another group of great people!

We’ve been so blessed to have so many in our community, and everyday lives rooting for our cause!!!!

Mikayla is back in Cook’s 2010-02-20 20:18

I sit here looking across at Mikayla, once again in a hospital bed. We came back to Cook’s yesterday after multiple complications at home. When Mikayla went home back in January, exactly one month ago today, we didn’t even know if she would survive the transport home. However God looked over her and protected her and she slept all of the way home. For the next 3 weeks, she got better and better. Okay-Yes I know, sometimes there’s a “calm before the storm” and people get better at home, before they get worse. However, I am VERY attuned to my daughter. I watch her like a hawk night and day. Mikayla had started to recover from her brain surgery, and she was improving. It wasn’t just an improvement you see in a child who perks up from going home and being back in her environment- it was an improvement as in- She might not ever be able to run and play- but she was getting to where she would communicate more and more with us.

We know for a fact that Mikayla was still “mentally” normal. I made sure we showed everyone the way she’d try to blow bubbles when we’d sneak up and just put the bubble wand in front of her mouth without saying anything, and when things hurt she would say ouch. She knew. We could ask her if she wanted to watch TV and she’d look up at it and nod her head yes….So many things. She even ate a tub of yogurt and some of apple juice. Even the day we got Mikayla home her twitching stopped…Slowly she was working on getting back to as good as she possibly could, and we never gave up on her. Even if it never got better- She’s out little girl and she was there. Sure, her quality of life was not what we wanted it to be for her- but she was able to enjoy little things, like her daddy tickling her, and the new puppy Anne gave her….She’d smile from time to time and home was home again- because she was there with us.

One of her biggest feats was not needing oxygen anymore! She maintained her O2 and never got under 94 for 2 weeks straight!

So we fast forward to this past Monday, when Mikayla caught the cold. She was the first to come down with it, then Morgan and Madison followed. On top of that, She also caught a flu bug and was vomiting. It physically wore her out and she went from being awake 8-9 hours a day. to being asleep 22 or more. She’d yawn and move around a little, but that was it-up to Friday.

We spent a lot of time doing breathing treatments and CPT on her, patting her back, and trying to loosen up everything in her lungs because it was just building up so fast.

One thing I would do constantly is check Mikayla’s eyes…..which I did Thursday night, and they looked fine. Then Friday I checked them and they were yellow. I knew then that her liver was involved and waited on our home health nurse to get there….She agreed with me that it was just too much to deal with at home, and we did not want to take a chance on Mikayla having something out of whack as far as a blood level, and that be what took her.

So even though she was sent home to pass away- We wanted to know for sure that it was not due to something as simple as a severe kidney infection or something of the sorts.

When we got to the ER her liver level was in the 700’s for one that should be around 56 or so. The other one was high also. So Harris asked us if we wanted to get Cook’s on the way and take her back there, and we said yes. We are very use to and comfortable with Cook’s by now, and that is where we wanted her. We knew they would check her with a “fine toothed comb” and in the end there would be no doubts as to whether or not we could fix this again.

So- they said she had pneumonia in Stephenville, and it was confirmed at Cook’s….we did also confirm later that it was from her having RSV…..If you don’t know what it is, it’s a virus like the flu- it’s just harder for her to fight off due to her condition. So she is now on antibiotics.

They also checked her liver levels, and the 700+ one is down to the 500’s. As with the other levels. Now, we are not sure if it is fluctuating or if it is going down from recovering back to it’s “normal” state. The doctor did say that from dehydration, liver counts can go up- maybe not that high- but it’s “possible.” So she’s on a constant IV of fluids, an antibiotic for the RSV, among other things.

We hate to have had to bring her back, but she has been re-intubated and is not struggling to breath….her heart rate is stable and not high again, and she is asleep again from the meds. She is peaceful and it makes us feel better knowing she is not in a state of suffering from her body overworking itself.

I do know that no matter how tough you want to be, no matter how you want your terminally ill child to pass at home- As a parent, and as a mother- I could not “do nothing.” I could not just give her meds to make her comfortable and watch her pass…..So maybe in that aspect I failed- But as Mikayla’s mother- I didn’t. I know that………and I’m okay with that. And if there’s a doctor or nurse or anyone saying ” I thought she wasn’t being treated because of her diagnosis” or someone wondering why we brought her back- It wasn’t to try to prolong her suffering in any way..it was to let someone else alleviate something I am incapable of, as someone who loves her, of doing.

IF it’s the Alpers causing it….and if we find that her liver is in fact truly failing-then we are in a position to not be selfish and keep her here because we can’t let go.

I want to remind you all that I am able to write in the middle of all of this, because writing is a way of me seeing what I feel. I re-read it and I “proofread” my choices- to confirm it to myself and to know that I am somehow making a choice that is best for her.

It’s hard to know how saying “goodbye” is best for your child, until you are ever in that situation. And I pray that you NEVER are…but when faced with seeing her suffer- you can’t just let it keep on- if there’s no cure, and if it’s affecting her ability to live without suffering you HAVE to to the hardest thing that you’ve ever done in your life. And this by far is the hardest thing John and I have ever had to do. Nothing comes close to the heartache we feel.

Images of Mikayla smiling and running and laughing just keep playing over and over. I can still feel her little arms wrapped around my neck hugging me and I can still smell her baby shampoo when I’d wash her hair. Every day of her life is flashing before me when I close my eyes…all the way back to her baby crush on Heath Ledger in Knight’s Tale…..she was about a year old and every time Heath Ledger would smile, Mikayla thought he was smiling at her and she’d smile this shy little coy smile back at the TV. It was so cute.

She’s a beautiful little girl, having to go through so much, and no child should have to endure something that there is no treatment or cure for…..

Mikayla has been fighting like crazy. It took four doses of meds, when it should have only taken one, to get her put under to intubate her. She isn’t going anywhere without a fight. And she is taking on an army all by herself. Our little fighter!!!!

So for now, we are waiting out to see what her liver levels are in the morning and then we’ll go from there. It’s just sitting here waiting….

I will say that there is still nothing we regret. The hemispherectomy-was the RIGHT choice.It stopped her seizures- it just took a while “post operative” to let it settle back down.

I will also say, to any doctor who may read this, and not realize- It is very important to give parents EVERY option available to make the best choices for their child. We feel like we have been given that, and I hope other families never experience regret from doctors who change their minds and hearts. Our best advice, is to always pray to God, then follow your heart- Even if it means having to aruge with someone about it. You are the voice for your child, and you are the one who knows them best.

Lastly, there have been so many people involved in Mikayla’s life, who have been a Godsend… but I recommend to anyone who has a child at home who has special needs- to consider help. I didn’t realize how much having a full time nurse would help us. Especially having a full time, caring-compassionate nurse named Stephanie (*and for the time being we aren’st sharing her, but there’s other nurses : P )……Angels of Care Pediatrics in Sherman has been so good to us. They’ve sent their nurses driving anywhere from 2 to 4 hours to stay with Mikayla and it has meant the world to John and I. We are still able to give her care, but 2 weeks ago, when we let a nurse come in and help- we felt like she was getting the maximum care and so were our other girls….They are a truly great company, and not only take children, but young adults. I HIGHLY recommend them…….they are statewide and will go just about anywhere in Texas.

Please pray for Mikayla, and strength for John and I. This is so hard……..But we’re in the best hospital there is, and she is being taken care of with the best of the best.

An update on 2-22-10….From John Gain: I can only sit and pray now as the doctors tell us that they will try for as long as we want but that in their oppinion it is a trivial gesture. Mikayla’s meds will now be backed off till she can resume her own breathing. At that point she will have the breathing tubes removed and everyone will simply wait …

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