Saturday, August 15, 2015

How is She, How are We, and What is Next

I haven't posted an update on Maggie's condition in a while and with surgery around the corner, I thought this might be a good time to let you know where we are.
(pictures courtesy of our trip to the nail salon today)


How is She?
Maggie's speech has come a long way over the last 3 months.  She is talking in sentences and doing a great job at expressing herself.  It is just one more way her little personality bursts through.
She still has weakness in her left arm and leg.  Some days she does better than others but we really see it when she is tired.  I think there is a good chance we will resume therapy after her surgery.

After several follow up tests, they have determined that she has moderate hearing loss in her left ear.  Basically she can only hear voices on the left that are louder, like a yell.  They said this could improve or it could get worse.  It seems reasonable to me to expect it to improve as her brain grows and remapping occurs.  We love her ENT and she recommends not doing anything about it until she is school age. I am good with that.

Maggie still suffers from a single ventricle heart, a high risk for strokes, and low oxygen saturations because of the mixing of oxygenated and deoxygenated blood that occurs in her heart.  She did not qualify for the bi-ventricular repair that we were hoping she would be a candidate for.


What is Next?
Children with Maggie's condition usually have a procedure in the first few days of life, followed by a 2nd procedure at age 1,  and a third one a few years later.  Maggie has not had any of those procedures which is most likely why she suffered her strokes last summer.  While it is rare for a child not to have had her single ventricle addressed and still be alive, Maggie's cardiologist said he has seen this a few other times when the heart went undiagnosed and the child eventually suffered a life ending stroke.  His recommendation is that in order to lower her risk for another stroke, her heart needs to "repaired".

This is hard for us because she looks really good, so taking a stable child into a major heart surgery feels crazy, but leaving her at a risk for a potential life ending stroke feels wrong too.  Trent and I have decided to follow the advice of her surgeon but do not move forward easily.  On September 9th, Maggie will have the staged procedure all at once.  It called the Fontan and we know of other children who have had it and are doing well.  You can read about the procedure HERE.

I find myself reading about every case I can find online.  Some leave me really encouraged and others leave me terrified.  It appears the survival rate for the first five years is around 70%.  The kids who don't do well either suffer complication right after surgery or eventually acquire something called Protein Losing Enteropathy.  I tell you this so you will know how to pray for Maggie and what to pray against.

We have about 3 1/2 weeks until Maggie's surgery.  This week I will start working less so I can spend as much time as possible with her.  You can pray that time is sweet.



How are We?
We are thankful for a healthy summer that was loaded with good family memories.  My goal was to write over the memories of last summer with new memories of togetherness and I feel like we did that.

We are anxious about what September holds and we are also ready to get her to a place where we can move forward and enjoy life together.

Please pray for Maggie that God would prepare the surgeons and her for what is to come.  Pray for peace for all of us and pray for healing.  The last several nights I have asked God for 50 more years with her.  Please feel free to ask for the same.  And if you want to pray for our family as a whole, you can pray that we cherish these next 3 weeks.  Pray we slow down to have tea parties and paint toe nails.  Pray we don't rush through the bedtime routine but instead cherish every moment, because they are not guaranteed to us tomorrow.




2 comments:

Gwen Brehm said...

awww, you all will be in our prayers! Such a tough journey, yet a blessed one!

Andrea said...

Praying and standing with Maggie and her wonderful family! Believing for those 50 more years, healthy and whole.