Monday, November 26, 2012

Wrapped in Fear

I have opened and closed this blogger screen a number of times today because the truth is I don't know what to say even though there is so much on my heart right now.

I was SO happy when Gavin and I were discharged from the hospital in time for thanksgiving...and as soon as we got home, I put everything aside and ignored it.

opted to not look at what laid ahead for him medically, as in what wasn't done, as in why our hospital stay was shortened, as in what we still needed to go back and do.

Today I was forced to give it my attention, because today I had to return all the calls to get the ball rolling on a re-admission.

But now instead of threatening thanksgiving, it is threatening Christmas.  I consider that worse.

However, in all reality, he will be home for Christmas, and in reality, we will still make fun memories while we celebrate the real reason for the season no matter what.  So while this has been making me super emotional and sad because I have these grandiose visions of what our December will look like, I need to let go of it.  

I know it will work out no matter what, because no matter what, as a family, we will make the best of it, and we will make some days--as many days as we can--fun and Chrismas-y.  

This brings me to a deeper emotion...that of fear.  The procedures we are co-ordinating are the three days of whole body scanning to look for a gastrinoma tumor, and surgery to have his tonsils removed.

The tumor thing with anyone is always scary.  The tonsillectomy is routine, not a huge ordeal, or something to really be afraid of--in a healthy child--in one who doesn't have serious complications to every procedure and surgery--unfortunately that one I am referring to isn't Gavin.

It's a two to three week recovery for a healthy child, with the first ten days being the hardest.  

The biggest risk for him is always anaphylaxis, but thankfully, his pre-surgery protocol is very aggressive now that we have seen what his body can do when provoked.  We have also been able to stop the anaphylaxis time and time again, even if it beats up his body and scares the eebee Jeebies out of everyone in the room.  

The most serious complication for healthy children is bleeding...Gavin already has this complication as a result of his masto, so for him, it's double.   

If he needed a blood transfusion, he could also go into anaphylaxis, even with my may recall if you were reading back then, that we dealt with that in 2009.  The good news is that IV Benadryl and epinephrine stops the masto bleeding and the the anaphylaxis.  I pray that it will always.

The second complication pain with an inability to eat and drink enough....I am thankful for his PICC line, but it would mean it needs to stay in longer.  However, I use IVs every week, so it isn't so out of the norm for us to still have it (after all it is his eighth PICC line at age 7.

So that just brings me to my concern with how long we will be the December, because this wont be oupatient for him.  We have spent Easter, Mothers day, and countless Independance Days there...but thankfully not Thanksgiving, and hopefully not Christmas.

I dont know if we will be able to sufficiently manage his pain at home with all his allergies to pain meds.  

In essence, I'm worried that not only will he take a long time to recover, but that it will take through Christmas for it to happen.  I know I already established that we will make the best of it but in all honesty I don't want to be dealing with it--I don't want my son to deal with it--and I certainly don't want it to be during the holidays.

I just want to be a regular healthy family who has the energy to really live each day without limitations, but who am I to question my Maker? Who am I to question my God?

Sometimes I find it so hard to let go of my own desires and plans for this life and when I feel forced to surrender, I am brought down on my knees in tears.  

I recognize that the Lord knows what is best for me, for Gavin, for all four of us.  He has brought us through SO much that I can't stop trusting Him now.  He WILL bring us through this too.  He will provide and sustain and care, as He always does.  

Now all I have to do is stay surrendered to that and repeat what is now my new mantra..."I trust You, Lord, even in this."

Over and over, I will repeat it, as I lay sick on the couch with my own masto a virus, and a stomach flu, while my jobs are piling up unfinished, with deadlines approaching, while we fall behind in school, while we wait to be separated as a family again, by a hospital, while we wait for our son to endure more...

I will trust You Lord, even in ALL this.   

Please, help me trust you more.....

"Those who trust in the Lord will find new strength; they will soar high on wings like eagles, they will run and not grow weary, they will walk and not faint." Isaiah 40:31


  1. I dont know what its like for you as a Masto mom but I do understand as a mother of a chronically/terminally ill child. It is so not fair for kids to be in the hospital on any holiday but especially at Christmas. We have been in on every holiday, including her birthday, more than once. We will go to the doctor today to see when she will be admitted in December. At least with her, when she is admitted we know it will be for a minimum of two weeks and then home on IV antibiotics for another 3-4 weeks.
    We go in every three months.

    I pray Gavin doesnt have any problems with the scans or the surgery and will be home, happy and healthy as he can be, by Christmas.

    1. Thank you Debbie! We were able to avoid Christmas and we are so thankful. We are getting ready to go back at the end of this month though...I hope your daughter is doing well!


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