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Thursday, May 6, 2010

Cardiac Catheter is Scheduled

So we got word this week that Loma Linda wanted to go ahead with the heart cath for Gabriella. They don't have any concerns about her having another stroke, though I will be far more 'cautious' in that thinking. I got everything scheduled today. We will skip our May clinic appointment and head over in June for clinic and the heart cath. (busy hospital, skinny schedule) Daddy will go with us for this trip, and we will take PJ, so we are hoping to have a couple relaxing days in California together before the early week procedure.

I will not say I sit here going into this with as much comfort as I typically have, but I still sit here with as much faith. When they do a heart cath, they go in through the femoral artery in her groin and send a tube up to her heart that they can thread in various tools and cameras thru. They will measure the internal pressures of her heart and lungs to check for things like pulmonary hypertension and high blood flows of the heart. After the procedure, she must lay there, completely straight, for up to 6 hours in order for the artery to reseal (form a clot= a necessary evil). I am curious to see how this time is lengthened due to her being on aspirin? This is the same procedure they did April 24, 2009 to find out why her heart showed enlarged on the echocardiogram, marking the beginning of this journey. The hardest part will be that Paul and PJ will have to wait for us back at the hotel, since PJ cannot go into the hospital. We are still exploring our options there. But this needs to be done so they are prepared for any possible complications she may have in transplant, since kids with RCM present with lung issues most of the time that can make recovery a difficult time.

I have very specific prayer requests for the next month for anyone willing to take this on. So much can happen in 30 days. The first request being that if she were to get her new heart before this cardiac cath happens, that there are no unexpected complications. The second being that if we do make it another month with no heart offer, that she stay healthy for this procedure and the cath come back that her lungs are strong and healthy. And the third, that Gabriella is protected from any chance of stroke with this procedure. I can't even begin to think... she has already lost her speech and right arm... so I beg you to just pray that God spare her any more struggle from stroke repercussions.

To piggy back on this entry, Gabriella could just use some overall positive prayers. This last week has been trying. Paul and I have both noticed a change in her overall stamina and being. Last night playing with her cousins was the most interactive she has been all week, but it completely beat her by the end of the night and into most of today. She still smiles and gives that precious "uh-huh" in a cheery tone when we ask her if she is okay, but you can see it in her eyes. She is giving us grief eating again and is visibly loosing weight again. She has been off the appetite stimulant for 2.5 months now and its starting to be noticeable. If I had to plot her last week on a chart compared to the past 6 months, it would be a definite decline overall. And along with all that (probably DUE to that), and to take a selfish sentence for me, I have been having the most wretched nightmares that cause me to force myself awake for a while. It's been a difficult week. Granted, we are so very lucky to be a year into this now and her not be in a deeper heart failure than she already is. But it does not make the slow decline any easier. We know it is going to get worse the longer we wait for her sparkly new heart.


2ndheartmom said...

My heart goes out to you and Gabriella! I will definitely keep you and her in my thoughts and prayers. I know this is tough...on moms and daughters alike. I hope that she recovers her appetite - the lack of eating may be making her more tired? I know we constantly struggle with Mackenzie's appetite - she is on a stimulant now and that has really helped, but I know it can be a little soul crushing to see them not eating.

Please try to have a Happy Mother's Day on Sunday and enjoy your little girl. But, also, don't hesitate to get her checked out sooner than your appointment if you think its necessary. Always trust those mom instincts...they can be a life-saver...literally!

cici said...

I will pray for sweet Gabriella and for her new angel heart to come at a perfect time. I will also add her name to my church prayer list so others can join in praying for your precious baby girl

Paula said...

I will keep you all in my prayers

Summer said...

I will be praying this month for sweet Gabriella to be watched over and protected. I will pray you may be comforted that our Dear Father Above has a special plan for her and your family. Happy Mothers Day! Hope and Wishes for a HEALTHY month before the big Cath day!

Amiee said...

You and Gabriella are always in our prayers. I just scheduled Kate's cath today...she goes in June 1st.
Heart Hugs!