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Saturday, January 23, 2010

So many updates, so little time.

Oh, the updates.... oh, the issues we've had! Please feel free to vote for me in the 'worst blog updater ever' awards!

Gabriella had her 5 year well child visit on the 18th. Thankfully, it was a seamless appointment! Though the vision test was hard due to her communication issues, the best part of the appointment was the fact that she gained 5.5lbs in 2 months!!!!!!!!!!!!!!!!!!!!! Praise God!!! She rang in at 41.5lbs and 45" tall! Loma Linda should be thrilled with this progress when we go back to see them!

Her last cardiology appointment went well. Her ECHO looks similar to previous check-ups, which is always a good sign. Because everything seems to be creeping along at a snails pace with Neurology, her cardiologist put a 24hr holter monitor on her to see how her rhythms were over the course of a day as a preventative measure. He seems to be as irritated as I am that everything is taking so long. I'm STILL waiting to hear back results, but I am sure everything looked okay if they have not yet contacted me!

Neurology. Oh my, what do I say? We finally got a consultation last Thursday from the doctor upon return from his nearly month long vacation. My biggest frustration is he seems to forget who Gabriella is and what her situation entails every time we see him, and doesn't bother to read the chart before he speaks with us. He was, again, not in a rush to get a MRI or stop the Lovenox, so I needed to remind him her life depends on this. No transplant listing without the MRI clearance. So when he remembered her story, he wrote a stat MRI order. He also surprised me by saying he wanted her to continue her Lovenox injections until he gets the MRI results... which was a huge disappointment to us. Poor Gabriella's belly is so beat up from the ports and tapes. I called Friday morning to their scheduler, who was out for the day and the back-up had no orders for Gabriella. Thankfully, the girl covering got the orders in and pushed through, but not in time for Phoenix Children's to schedule the MRI Friday. I left messages, with no return. Finally, today they called and scheduled her MRI for February 5. I am still unappeased with having to wait nearly 2 more weeks, but I have to trust in God and His timing on all of this.

Another position of stress I have been put under was last week when Gabriella's therapy clinic called me. They told me they got word from her benefits plan that her 60 days of therapy per year did NOT start January 2010 like we were led to believe, rather it began in October when she started therapy. SO my pushing and packing of therapy into 2009 only resulted in hurting her future sessions. We have 27 therapy days left until September 2010. This means she can have therapy ONCE per week.... yes, once. Her being on 2 days a week right now is cutting it shorter than we would like... and going to one is beyond unacceptable to me. So, my boxing gloves go back on. Rarely do I remove them, but they are on now and for good. I am fighting insurance and demanding an additional 30 days for this calendar year so Gabriella can continue on her twice a week program. We have been seeking other forms of therapy and coverage, but not getting very far. And even if we do secure additional therapy, I would want that above and beyond what she is already participating in! She had such an amazing session last Thursday, and like Mrs Lisa and I agreed, it wouldn't be without this frequent therapy. Gabriella is the type that needs to be pushed to succeed, and she will not willingly accept the push from me, her mother. (haha, sounds NOTHING like me.....) I will be sure to keep my blog world updated on the steps of this insurance dispute. I will win. This is ME being pushed to succeed.....

Otherwise, there's no major updates to fill you in on. Gabriella is having severe irritation in her airways, and we are watching it closely. The fluid leakage into her lungs and decreased function due to the heart condition can potentially and will eventually cause damage to her lungs. The primary focus right now is getting this MRI, showing the Doctors what God can do to heal her brain, and getting that approval for transplant. Gabriella needs this heart, and we cannot waste any more time.

On top of praying for the typical points for Gabriella, can I ask those who have the time to pray for us? Really in light of everything going on, what I'm dealing with is normal... but prayer for what God wants of ME personally and my relationships would be great. I want to be what God intends for me to be for everyone in my life, and even those I have yet to meet. I just want God to continue to prepare me and use me best to always show His love. On top of that, and much more serious, we have some decisions to make come March/April. My mom is closing on this house and moving to a smaller apartment, and if you don't recall we moved in here with her to wait before Gabriella had her stroke. If we have not yet received the transplant call and already moved by April 30, we are not too sure what we will do. Our obvious options are to move in with someone else while we wait, go month to month on a small apartment, or Gabriella and I move to SoCal and wait there while Paul and PJ stay here. Finding the right choice and the finances to support it is our focus.....

Thanks Gabriellas Heart readers. You are all so near and dear to my heart!


Linda, Lydia's mom said...

I'm sorry about all the stress... :( Praying that all the different issues will be solved quickly and easily and that you will be filled with His peace while you wait. Not our kind of peace, but the peace that passes all understanding. It is the only kind that can get us through this. ((hugs))

The Simmons Family said...

The GOOD news is that her heart is holding it's own and she's gaining weight!! The crappy news is neurology is flaky... nothing frustrates me more. Word of advice.. call scheduling at PCH regarding the MRI, and tell them she CAN"T wait that long!! I have had doctors schedule procedures and I want them done sooner, so I call and we get right in. It's worth a try!

We'll be praying for you guys as you are making big decisions on where to move and the best choices for your family. Things will work out!!

Michelle said...

You are dealing with A LOT! I will pray for God to bless and guide your family through all of this. I also agree that you should try to push the MRI sooner. I think they are pretty good about this at PCH. Oh but wow, that neurology Dr. would frustrate me to the T. How aggravating that you have to explain things to him everytime. Is Dr. Teodori still there? In my thoughts and prayers.


Suzy said...

I'm so glad she's putting on weight and doing so wonderfully well!

I hope you can get somewhere with your insurance company.

Not wanting to be controversial, as I know this is, but the healthcare system in the US absolutely seems to SUCK when it comes to stuff like this. Here in the UK there is no way you guys would be being stressed over her not getting enough therapy and it makes my blood boil.

So much love to all of you. The white owl is at hand, with love and prayers. <3

cici said...

Don't get me started on insurance. grrrrrrrrrrr!
I hope you are wearing extra tough boxing gloves and never take no for an answer.
I'm so sorry about all the turmoil you are in right now and I want you to know that I will pray non-stop for
you and little Gabriella to have all your prayers answered.
p.s. I vote you best Mommy