What was that??

[Gnusgal]

Why can't I catch a freakin' break?!

As you know, I'm back in the hospital due to a possible infection. Yesterday the infectious disease doc said I'd get to go home today, he just needed to figure out if I'd be going home on oral or IV antibiotics...

However, I had been having some more "twitching" (diaphragmatic pacing) off and on and last night it was at it's worst (I got very little sleep because of it). I have reminded the docs and nurses all weekend that it needed to be checked, but nothing was done. Until I reminded the PA who was about to look into discharging me. They sent a Medtronics rep to my room and low and behold, there is no setting he can put me on that doesn't keep that darn twitching at bay! So once again they've turned that lead off, sent me down to x-ray, and now I'm waiting to find out the verdict.

I'm on the edge here, folks, of what I can handle. I'm trying my hardest to have faith that God will see me through yet another hurdle, but I'm just SO tired of this! After the surgery last week (yes, exactly one week ago today) the doc said that if the lead didn't stay in place this time, we have no other options and we'll have to do epicardial lead placement, which requires a surgeon and he doesn't feel any of his guys can do it, so I'd have to go to Children's here in Dallas, Texas Children's in Houston, Cook Children's in Ft. Worth, or back to the Mayo Clinic.

I'm trying to stay positive and not think the worst, but it's darn hard right now. And to top it off, I sent Nathan to work today because I figured I'd be going home and we don't need to lose out on any more of his paycheck, since we're now losing out on mine (all out of sick days). So I'm sitting here all by myself, near tears, but trying REALLY hard to hold it in.

 

[kfay]

Niki...I just want to tell you that I'm very sorry you are going through this now. I know how frustrating it can be when things don't go your way. Try keep it together and be patient. I know that you don't want to have to go somewhere else to get resolution, but that may be what it takes to get it done right. You know we are all here pulling for you.

Kim

 

[Phyllis]

So sorry, Niki- I hope this is resolved by the time your read this and there are no more travels to Mayo.

 

[Wise]

We'll praying for you and for the best resolution to your situation. Sorry about all of the stress you're having to bear.

 

[Gnusgal]

Well, I get to go home today. After they place a PICC line, that is. Looks like I'll be on IV antibiotics awhile longer. Apparently this was chosen because it looks like I'm going to be opened up yet again. I don't know yet the when/where, but hope I'll be able to talk to my EP before I leave. Otherwise, I may camp out at his door tomorrow.

 

[Karlynn]

Darn!!! Remember Rosanne Rosannadanna "If it's not one thing, it another."

I hope you get this fixed up soon. And I'm glad, if this needed fixing, that it's done now rather than when you have a house full of babies.

 

[Gnusgal]

Well, at least I get to go home today. Even if it is with a PICC line for IV antibiotics... Apparently this was decided because they are *probably* going back in. Don't know when/where yet, but hopefully it won't take as long as last time to figure it out! I'd like to have it done before the end of the year so I don't have to start over on my deductible.

Last night I finished reading Multiple Blessings by Kate Gosslin (of Jon and Kate Plus Eight). It really was an excellent book and gave me a profound respect for Kate. Her faith is so strong, and she has taken every opportunity to learn a lesson from what God has handed her. I'm trying, really hard, to see the lesson I'm to learn from all this. I think I'm too in the moment. But I have Faith that He has a plan for us. He wouldn't have blessed us with LD or the twins if He didn't plan to see us through this current hurdle. It's hard to see a reason why, but I guess I'm not supposed to know just yet. Lord, I'm trying. I know you're talking, and I'm trying SO hard to listen!

Thanks for your unwavering love and support. I need it so much right now!

 

[marie]

You're in my thoughts and prayers. Thanks for keeping us posted.

 

[Guest]

Niki ... thoughts/prayers coming your way.

 

[Nancy]

Niki-

Just keep putting one foot in front of the other as you trudge down this seemingly long road. Before you know it, it will take you to a much brighter place. You have so many wonderful things ahead of you. Can't let this get you down.

I will keep you in my prayers.

 

[Gnusgal]

I'm home!! My right arm hurts from the PICC line, but at least I got to sleep in my own bed and no one came in to take my vitals at 4 AM. No, instead my dog asked to be let out. I've been up for about an hour because I couldn't get back to sleep. I imagine a nap will be in order later today!

Mentally, I'm doing much better than yesterday. Once I knew (or at least sort of knew) what I was dealing with I felt much better. As I told my doc last night, my most anxious times come when I feel like I don't know what's going on. I think he's starting to get that message. Did I tell you he gave me his cell number so that if his stinkin' office staff is giving me fits I can bypass them completely! I made sure he knew how much that eased my mind!

Right now the plan is this. I will go in to the ID doc today to get started on my home IV antibiotics. Not sure yet how long I'll have to be on that, but at least another 5 days (I've already been on it for 5 days in the hospital). In the mean time, Dr. D is going to be talking with my cardiologist (Dr. P) and the Children's EP (Dr. S) that sat in on my last procedure. We're going to be going back in, but only after the incision site is "cooled down" as he put it. He's going to defer to Dr. P and Dr. S on who should do it. He knows that the surgeons he works with will not be able to do it with my anatomy. We are now at the point where the only option left is to place that wandering lead onto the outside of my heart, which will require a bit more invasive action.

We hope to have this next surgery done prior to the new year for two reasons. One, more time to heal before the babies' arrival. Two, don't have to start over on the deductible with insurance (who is paying 100% at this point). As much as I hate to do it, I'm actually thinking that scheduling it for Christmas break would be the best option. As I said last night "Not that I want to miss out on family stuff, but at least they don't dock my pay!"

So that's where we are right now. I plan to call and talk to Dr. P later today and get her thoughts on the matter. I don't know if she'll want me to go back to Mayo, Texas Children's, or if she thinks there's anyone local that can do it. I will feel even better once I have an idea of where this is going to happen.

Thanks again for all the support!

 

[Cooker]

Niki... we have have you in our prayers ....

 

[Mary]

Keep on trucking, Niki. All will be well.

 

[Phyllis]

Glad you are home, Niki and hope all works out time-wise for you. So sorry you have to go through this now when you should only be thinking of those two bundles of joy, but as Mary said, "All will be well"!

 

[gijanet]

Glad you are home!

Glad you are home!

But I am so sorry that you are having to deal with all of this and undergo yet another surgery........................ I'll be praying for healing from this one and good answers for the next.............as to where, when, and what................Many hugs. J.

 

[Guest]

Niki,

VERY glad you are home, but sorry about more surgery over the holidays.... Thoughts/prayers continuing, of course....



Cort | 35swm | "Mr Monte Carlo"."Mr Road Trip" | pig valve.pacemaker ...MidW Blast = 1/17/09
WRMNshowcase.legos.HO.models.MCs.RTs.CHD = http://www.chevyasylum.com/cort
"Come along and share the good times while we can" ... Lynn Anderson ... 'Rose Garden'

 

[ShezaGirlie]

Oh Niki......did I read you're having twins..!! How exciting for you and your husband. I can't imagine how wonderful your friend is when she's giving you the most precious gift of all..!

Here's hoping/praying that you are in fine shape when the little twins arrive. Love your countdown ticker...224 days as of today and your life will change forever..!

Congratulations to all..