Just a list.

Of things we might need help with:

Toilet paper. I know. I meant to go to the store yesterday for that and a few other things. obviously didn’t get that far.

Meals for Ben and the girls. – there are no food allergies and they will eat just about anything.

Snacky type things to make the girls when Ben doesn’t feel like eating: Chicken nuggets, ramen noodles, cheese sticks, gogurt thingies (the yogurt in tubes), cereal, milk, pretzels, fruit snacks, frozen pizzas.

Gas cards. if we have to transfer up to milwaukee, it is unlikely we will all get to see each other. Gas is just too expensive. Any help with gas stuff is very appreciated.

Help entertaining the older girls. i am cautiously optimistic (perhaps stupidly so) that if we do have to go up there, that we are home sometime this weekend again and we can resume life as usual. Since they are on break and ben is trying to work, it is going to be an interesting few days. i do’nt even know what this one might entail, but if you have room in your car for a few extra tag-alongs, they would love the distraction. and give them a few extra hugs and kisses for me please too. I hate being away from them, especially when we thought this would be a short stay, and now it might turn into a longer one. If we end up still being up there next week after school starts…..dang. i can’t even think of that right now. We’ll be home. i know we’ll be home. so nevermind on that last part.

i think we are ok on laundry – but i know we are out of laundry detergent. see the first item above with “toilet paper”.

Seriously at this point – we just need help with anything and everything. we are humbled by so many offers of help, and i know that we, or at least I, am very bad on taking people up on it. even though it is obviously so very desperately needed.

so anything – anything – you feel led to do to help is awesome. I know we have friends and family all over the country that read this – and if you feel like you are too far away to do anything – that’s ok. Your prayers are awesome enough. if you would like to help out with a gift card or some such, I can send you our mailing address or my paypal address if you so desire. I really am struggling right now with feeling like i am asking for handouts. I hope you all know I am not. i just know that i am overwhelmed right now and continuing to carry all of this by ourselves is tough. i don’t even know how to really ask for help in some ways. So this is just what’s on my mind right now.

and hopefully, we get some good news from all these tests, we can restart feeds and maybe we will just be home by tomorrow and not even have to think about “Plan B”.

 

{four hours later} – no go on Plan A.

Milwaukee wants her up there now. they dont want to mess around with a possible metabolic decomp which she seems precariously on the edge of. The interventions we have been giving here arent perking her up the way they should be, and they are maxed out on her care here as far as her metabolic requirements.

I just endured a (very loving) but long lecture from Dr. A on the appropriateness of her care here, meaning, if she’s this bad, suck it up and drive to milwaukee. and we were JUST starting to discuss what I felt like she needed here tonite when Resident Captain Obvious came bursting in saying milwaukee had reviewed her records and saw how crazy and systemically involved she is and said essentially – “she’s too complex – send her here now. If she does decide to decomp, you local yokels will kill her for sure. Let the pro’s handle it.” (I’m paraphrasing).

so – off we go to the wild North Yonder. via an ambulance. I broke down crying when Dr. A said “Ok, but we all know that as good as you are, you aren’t rambo. There is NO WAY you can take a medically fragile kid in the car and drive with her by yourself up to milwaukee.”

But I sure woulda tried…

So – now i also have to figure out how to get my car out of the ER parking lot, IF its still sitting over there and hasn’t been towed yet…

Ugh.

my head hurts. Ben and Kaylen are now fighting the ebola virus so i am sure no one wants to actually enter our house of sickness. Throw things on our porch and run away.

In milwaukee – just as i am thinking about things we need – if anyone is close to CHW and has Dr. Brown’s bottles – I don’t know if they will let me feed her but she is absolutely screaming for a bubba (bottle). it’s her comfort thing. I don’t even have one with me to give her. this isn’t a necessity but just thought i’d toss it out there.

Fudge. We just need so much. mostly prayers i guess.

I am just….done kinda.

the ambulance will be here soon and I need to lug a bunch of crap back down to our frozen car and get back up here before they do.

thanks for all the prayers and love – they really do make a big difference.

 

T

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Comments

  1. I so wish I lived closer to you guys!! And have someone let security know about your car in the ER lot, just so that they leave it alone. We’ve left our car parked in the regular pay lot for several days. And as much as it sucks, if Dr. A. says get her to Milwaukee, then I’m sure it’s the right decision! (((HUGS))) I’m just so sorry that your year is ending this way!!

  2. Terra, Iwish I was there to help you. I can lift your family up in my prayers tho. I hope and pray that little bit is home and happy and healthy again soon and that the virus at home is gone soon also!!
    Love, Gina

  3. I wish I could help in some way Terra.
    Unfortunately all I can offer is our love.
    I have never met Kendall, but I feel like she is one of “my kids”.
    Will be thinking of you both.

  4. Our Samuel is in much the same boat this week.. We landed back in the ICU Tuesday and are getting a PICC line today for the TPN as his gut has shut down yet again. We just got the mito diagnosis Monday which in some ways helps us to understand everything. I am praying BIG time for you all and sending hugs. I have continued to follow your blog, not even knowing you because you have really inspired me with your grace under fire. I thought it was also neat that you are a MOPs leader as well. I coordinated at our church for last two years until all this happened this year. God Bless you and yours..wish I had something I could send to help. I am right with you on the no TP at home.. and my hubby did not get the domesticated gene so my girls are probably eating mac n cheese or cereal for all meals at this point. If you ever want to talk email me your number.

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