Saturday, January 14, 2012

We made the decision ...

Emily was discharged from the hospital last Thursday late at night, after a 16 day stay and antibiotic treatment for a line infection. She gets line infections because her motility is horrible, and causes a leaky gut. So we went home Thursday night, and I got her TPN prepared. When I lifted her shirt to connect the TPN to her Broviac, I realized that the nurse who discharged us must have pulled the line somehow. It was coming out of her skin a bit and had been bleeding. I took pictures, redressed it, and sent the pictures to the GI and TPN nurse. They called the next day, Friday, and said to bring her in for xrays. We had to be sure that her Broviac line was still in far enough to use for TPN. As I prepped us for a quick ER trip for an xray, Emily spiked a fever. Of course. So we headed to the ER, only 14 hours after being discharged. They did labs and blood cultures, but her fever had dropped and she was acting fine. They sent us home. Saturday night they called to say her cultures were positive and we had to come back inpatient. :( We went in late Saturday night, and got a room of the pediatric floor early Sunday morning. This coming Monday, Emily will go to the OR to have her Broviac pulled. The will place an IV so that she can continue some nutrition, although it won't be her regular TPN. She is scheduled for surgery Wednesday, to place a new Broviac. She is also going to be getting a tracheostomy. This was a hard decision. We have gone back and forth over whether she should have a trach or not. Her breathing is great, her lungs are clear. But her vocal chord spasms are out of control and there is nothing else we can do about them. When she has these spasms, she has horrible coughing episodes and gagging/choking spells. She desats, turns blue, but worst of all she really PANICS. It scares the crud out of her. We can't easily suction her, because of her oral aversions. I manage to suction her orally but it's not easy. Trying to deep suction her, through her nose, takes four adults to hold her down. It's not feasible. So in order to prevent aspiration and allow her to breathe without coughing and panicking, we are going ahead with the trach. It is an impossibly hard decision to make. I am trying to remain optimistic. I am hoping that she will be able to make noises and laugh audibly, even with the trach. This is big surgery she is having. She will be taken to the PICU after surgery. I will try and update here as soon as I can!

17 comments:

Buttercup said...

My prayers are with Emily and all of your family.

Zoey's mom, Heather said...

Oh my sweet friend and my sweet , sweet Emily ... I love you two and we will prayer and hope and remain optimistic right along with you. And we will come visit AND Most importantly, bring you cupcakes!!! Promise.

linn98367 said...

Dear Sara,I know this had to be an incredibly hard decision,but since you had that spell and got a little taste of what Emily goes through I know you know you're doing the right thing for her.

You're an awesome mother and an inspiration.Lots of love and prayers for your family.
Linn

jocalyn said...

keeping you guys in my prayers for no complications and a quick recovery.
hugs.

Bellismom said...

I've been following all of the updates on FB and just wanted to let you know I've been praying for you guys! Good luck!

Christy said...

A trach definitely changes things. But, since Emily already made sounds, I'm thinking she will learn really quickly how to make sounds with the trach. But, it depends on the size of the trach. Hopefully they will give her one that allows for an air leak.

If it helps at all, life with a trach has only gotten easier as Harlie's gotten older. So, hopefully it will be smooth sailing for you guys.

I hope everything goes well. Hang in there. And, as always, we're thinking of you.
xo

I Just Love You said...

good wishes for your girl. i hope this helps relieve some of her problems.

Kristi said...

Sara, I know what an excruciatingly hard decision this was. You will all be in our thoughts and prayers Wednesday and as you navigate the ropes of the trach.

With all that you've dealt with already, the trach, while different, will be easy once you learn and get comfortable. Like others have commented here and on fb, I feel like, as long as there isn't damage to her vocal cords, Emily should be able to voice over. A PMV (or a modified one - drilled a bit - since she has issues with secretions and spasms) should allow her to have better access to her voice. It would just be something you'll learn when she shouldn't use if she isn't feeling well. (There is a lot of pressure on the airway and when she is having those spasms, my guess is you wouldn't want to use a valve at all.)

I know you have a huge group of people as resources. Please know that I am happy to help in any way I can as well.

Above all, you and Alex have done a tremendous job thinking over all aspects of this decision (and all others you've made) and are doing what you feel is best for her... and that, my friend, is all that matters.

Lindsay Marie said...

I'm praying for you and Emily! May God be with you during this time of hardship.

Shan said...

PRAYING!!!! Asking God to hold your family, guide the doctors hands, and comfort Emily. Hugs!

Eric said...

It's good that you finally were able to make a decision.You are doing the best that you can, of that there can be no doubt. the trach, like other decisions is one I still can't bring myself to make for my son. I wish Emily success with the op and strength for you.

Donna said...

Prayers for you and Emily. I hope the surgery went well and I'm so sorry you had to make that decision in the first place :(

Bea, OT said...

Hi, i just found you through Bloom. You have a lovely daughter! I hope surgery has gone well! Wishing your family the best!

Eden said...

Oh Sara, when I read the title of this post a cold hand gripped my heart! I couldn't imagine what the 'decision' was but it didn't sound good. I hope the surgeries went well and her laugh and little noises are not effected. Either way you will still have that charming smile and sparkly eyes we all love so much. Do keep us non FB'ers updated!

SECRET PEPPER PERSON: said...

Ah big big hugs for you and Emily. I know how hard this decision was but hopefully it will be a good one for you all in the long run and a less traumatic one for little Emily. The Boy had a trache also...so much better than seeing her suffer and have such trouble. He had it for about 4 years and was supposed to have it forever.

jainx said...

Hi, just recently following ur blog...I think having the trache would be best for her. I have a daughter who has trache and on vent. Hope surgery went well.

Colleen said...

I know looking into a getting a trach is such a hard decision. There are so many pros and cons to it. You are in good company for any advice:) hugs.