Friday, October 7, 2011

We're home again ... And staying here, damnit!

Oh, I guess I didn't even mention that we were admitted again. I have a hard time updating lately, and thinking of something witty to say. Emily had TPN clinic last Wednesday. During the appointment, I caught her TPN tubing on her wheelchair while lifting her to the exam table, and broke her central line. You know, that pesky little life-saving line that goes to an artery directly next to her heart, so that she can receive the IV nutrition that is keeping her alive. We had to wait while the TPN nurses ran to the hospital next door and scrounged up a repair kit. By Friday she was retching more and irritable again, so we were told to take her to the ER for labs and a blood culture. Thankfully everything looked fine, so we got to go home. Saturday we went to a birthday party for a friend, and Emily had a blast. Sunday we went to an awesome Make a Wish party on the Santa Monic Pier, hosted by Kevin James. Every Wish kid was given an iPad 2 by Kevin James! Monday afternoon Emily pulled her gj-tube out. I put a g-tube in, and paged the GI on call. For those who aren't drowning (oops, I meant immersed, did I say drowning?) in the medical world, a g-tube goes into the stomach. A gj-tube goes through the same stoma (hole) and then threads deep down onto the intestines. Emily needs this because she doesnt tolerate anything in her stomach, including the 26 meds she takes daily. We had to go to the hospital, but they couldn't replace it until late Wednesday night. So we were admitted and sat on IV meds and waited. Not all of her meds are available in IV form and she was already in withdrawals from missing doses of methadone and Ativan, so she as a mess. Her tube got replaced Wednesday, but we stayed that night to be sure Emily would return to her new normal before going home. We were discharged Thursday morning, andi was so glad because Jacob's back to school night was that night. I have to admit that I am no longer handling this well. I am a puddle of tears and self pity. I feel like I have lost any semblance of who I am, and my only identity is being Emily's caregiver. I don't have a chance to go out and do anything that doesn't involve Emily. Friday lunches with "the girls" that I have done for years, are no longer possible most weeks. Getting my nails done ... Heck, even grocery shopping ... Nothing is easy anymore. We don't have any nursing yet, and the palliative nurse who is supposed to be helping us with this is not returning calls this week. My mother-in-law is here helping right now, and I don't know what we'll do when she goes home. Even waking Emily up to get Jacob to school, putting her in the car to pick him up, these will all be huge challenges when she goes home. I am feeling very overwhelmed and frustrated. I belong to an amazing group of moms on Facebook who all have kids with AnyCephaly - micro, hydro, liss, pmg. There is a mom whose sweet daughter had lissencephaly, and was 22 years old. She passed away this week. My first thought, while crying, was that I can't handle the thought of losing Emily. My second thought, was that I can't so this until she's 22. That is another 14 years. I can't do this for 14 more years. I am so exhausted, mentally - physically - spiritually. And then the guilt of thinking something like that, much less typing it here and admitting it? Killer. What kind of Mom thinks that? I can't imagine either end of the spectrum with Emily and that is enough to tie my brain in a knot and leave me quivering in tears. Sometimes this life is incredible. Most days I think how lucky we are to be blessed with Emily. Most days she's just this awesome being, who gives so much more than she takes. Some days though, like now, I just think that I can't handle this much longer.

21 comments:

mrsnice777 said...

((((hugz))))

Becca said...

Oh, my heart hurts for you and Emily. I can't imagine what you're going through. (((hugs))) to both of you.

RoniMommy said...

Ah:( let me sit here with monkey whose got a cold ....and take some of that overwhlem and some of those tears away from you! -- you are such an excellant mother!! i dont know how you will do it when MIL leaves....nut i do know YOU WILL DO IT!!! i have the same thoughts as you have expressed when i fall into overwhelm and self pity... and hell sometimes thats just where you need to be because it is not easy, not easy one bit! you are allowed to have thoughts, feelings and emotions i THANK YOU so much for sharing your process with us! there is no denial in your reality.....it really isnt ok..... but you will figure it out! ----- lotsa luv from me and Bri to you and Emily!!!

HennHouse said...

Praying for you.

Reagan Leigh said...

Ugh. I totally know how you feel. I've had those same thoughts before. It's tough. And no one can totally relate because no one has been through your exact same situation. Honestly, it's best if you just take each day as it comes. Some days are going to be good and some horrible! You just have to focus on getting by, one day at a time! And know there are many, many people praying for you and for Emily!

Alison said...

I'm so sorry you're having such a hard time. I think its understandable that you feel completely overwhelmed - I really hope you can get some nursing help soon. Its too much for you to do this all on your own.
Please know you are your family are in my thoughts and prayers.

Kate Linzey said...

Your thoughts are the same as all of ours, babe. This life is exhausting, none of us want to live it or want our kids living it either. There is no good outcome here. We either lose them or we all continue to struggle. All we can pray for is a few easy days and happy memories thrown in. Xoxoxo

The VW's said...

You have been through a ton lately.....with way too many hospitalizations, along with too much to do for just one Momma! It's no wonder you are feeling this way! You REALLY need a nurse right now! I hope you can get one very soon! I'll be thinking of you and praying! Big Hugs!!!

Zoey's mom, Heather said...

What kind of a mom thinks that?? An amazing,loving, incredible and very real and honest mom. With a beautiful daughter and a beautiful life but a life that is hard and unfair and overwhelming and that sucks, big time, on some days.

You need a freaking nurse. Or two. How the heck can this be that you have no nurse? That has got to change.

Sending you love my friend.And prayers for days like this. So good to see you guys, even briefly on Sunday. To just give you a hug, felt good.

Kiss that sweet girl from us please.

Elizabeth said...

I'm so sorry that you're going through this, but I have to say that you should totally and completely feel all these things -- and probably more! I think the best way to cope with everything negative is to acknowledge it, name it, etc. This day will pass, this time will pass -- everything passes -- but you certainly don't need to apologize for venting or for having any feelings whatsoever. You are an incredible mother who has been through so much that you're near depleted. Rest. Give yourself a break. So many of us out here are pulling for you and your family and while we have no real idea of the anguish you face on many days, we have an inkling and wish you ease and peace again with your beautiful little girl.

Lacey said...

I cant wait until im just a short drive away. Although Jax has been quite stable this year, I am constantly reminded of how fragile he is. I look ten years down the road, and think how hard it will be with him big, to big for me to carry. I dont want that life, but I cant imagine losing my angel. No one can have him but me, no one!

Junior said...

Sara, huge hugs coming your way.

SECRET PEPPER PERSON: said...

People have a tendency to tell you how you should feel or not feel during times of intense grief such as this. I was at a lecture a hundred years ago and have no idea who was even speaking but they said "anyway you grieve is normal." I never forgot this.....in this wacky society if you cry too much you need anti-depressants...if you are angry you need anger management...blah blah blah. Let yourself go through this process the way YOU go through this process. Blogging is a good catharsis and you have so many people out here who are right there with you.

wellitsme said...

Appreciate and commend your honesty. Very sad that you have to even battle with these types of feelings and thoughts. I cannot imagine.

Reach out to your friends, especially those who CAN relate here in the bloggy world. You NEED to have someone to vent to, it's okay. I'd hate for depression to envelope you.

The people who love you actually WANT to be there for you. Don't feel like a burden to them. Whatever reason Emily is the way she is, God chose you to be her mommy and you're the best mommy she could possibly have! You're doing great. Its OKAY to feel this way though. You are human.

We would certainly thinkg you were a robot if you never felt like this. People are there for u. I dont know u, nor u me. But I pray for you and Emily and ur family. It's hard enough not having answers and the right treatment, let alone have to worry about the future.

Don't detach urself from the people who are meant to be here to stand firm with their shoulder nearby for your head when you need it.

linn98367 said...

I'm so sorry Sara,my heart breaks for you and Em.You're such a strong and awesome mother.Prayers for you for strength and for God to bring that perfect nurse to help you out and for Emily's pain to be relieved and for you to get some difinitive answers,It was such a poleasure to meet you both.We had so much fun at Disney that day,thanks for that.Lots of love,Linn

mommypod said...

Is there a way to get nursing help? We have a case worker from Blue Cross for Ian who is amazingly helpful. Not sure of your insurance coverage but I'm surprised with all that Emily needs you don't have someone from their side to talk to to get what you need.

As they all said, you seem to be an amazing Mom. This is all so difficult, for you and your precious little girl. So unfair. I just don't get why. But you are dealing with it in an amazing way.

Releasing any way you can is the only way to stay sane. Typing it out, crying, stepping outside and screaming into a pillow. Meeting friends when you can, or just shopping for nothing for a moment by yourself while your MIL is there, maybe seeing a movie. I try to take the time while I can get it although right now we are lucky to be in a good place with Ian.

I'm sending positive energy your way. And wishing for you to have help.

Buttercup said...

Prayers, hugs and more prayers. I keep the sweet photo of Emily on a shelf near my front door and say a prayer each time I pass it.

carlyandjay said...

I know exactly how you feel with the range of emotions. We love our kids so much and do so much for them... at the same time, it's exhausting and somewhere in the midst, we lose ourselves. I have been going through a rough patch lately, especially now that I haven't been on Facebook, where at least I had some sort of identity! I know it's much easier said than done, but hang in there. I know you will anyway, because you have this long and you love that little girl more than anything!!

Lucia said...

Please, please, please DON'T feel guilty about what you're thinking about doing this for another 14 or so years. It's perfectly normal for a mom with a child like Emily to think and feel the way you do. You are overstressed, overtired, overworked, and overwhelmed with the care of such a medically fragile child such as Emily is. Hopefully someone somewhere will be able to give you the break that you desperately need so badly, because you deserve this after doing this for so many year. I always thought Emily is a beautiful person with a big heart and a wonderful sweet soul and deserves a big break too and hopefully a breakthough will be found for her soon. I will pray for Emily and you and your husband as well as Jacob, and I will continue to pray and keep all of y'all in my thoughts always because y'all are such a wonderful family. Hugs to y'all! (((hugs))) <3 <3 <3

Lucia said...

And I also think you are one of the most excellent mothers on Earth because you work so hard to take care of your precious Emily!

Justin and Victoria Nelson said...

We are thinking about and praying for Emily...
I cannot tell you enough how much I echo your thoughs/feelings about everything.
Holding you close,
Victoria
(Moriah's Mom)