"Once our eyes are opened, we cannot pretend we don't know what to do. God, who weighs our hearts and keeps our souls, knows that we know, and holds us responsible to act." Proverbs 24:12

“There are no strangers here; Only friends you haven’t yet met.”- William Butler Yeats

Tuesday, February 18, 2014

The Toughest Job....Ever!

I'm sure bankers on Wall Street, CEO's of huge multi-billion dollar corporations and even neuro-brain surgeons all have very tough jobs. I'm sure they worry and pace, and hopefully probably even pray before taking that next huge step.  

But, this Mama knows the facts, the truth.  There is NO job on the face of the earth that is harder, than being a Mama.  Nothing.  Hands downs. I'm thinking God knew Adam wouldn't have the necessary grit and tenacity to become a Mama, not in the physical sense, but in the emotional sense, that's why he sent him off to work.

Gosh, how I love this silly boy!

It's been quite a while since I've updated on our precious China man, Kai.

We've not quite experienced anything like we did during THIS time period. But, we did have a bit of a scare with his apnea issues last year, where he had to be taken into emergency surgery to open his airways, after he stopped breathing in a previous surgery two days before, getting new tubes in his ears.

Our new doctor in Charlotte is world renown and came highly recommended.  We feel we are in good hands.

Since we arrived in the Promised Land, Kai has been seeing his doctors, and the orthodontists have been working diligently with him to expand his jaw, all in preparation for the the highlight of every child born with a cleft palate, the scary and extremely painful  ALVEOLAR BONE GRAFT surgery. 

My heart aches for my boy.


Let me back up a bit.  

It amazes me how "in-tune" I am to this child. I knew he wasn't hearing well again.  I took him to the ENT and sure enough, tubes are out and new ones need to be put in.  His eardrums are flat against the bone because they have no ventilation.  Only problem with this 'routine' surgery is that the last time, his left eardrum was perforated.  It was repaired with a paper patch, as they call it.  The patch held.  The perforation occurred  because of the many sets of tubes he's had put in.  It's worn down the lining of the drum and it is thin and fragile.  The only remedy to revert his hearing again to normal is.....another set of tubes, and the risk of yet another perforated eardrum.  If that happens, we may not get so lucky that a patch will hold and it be repaired.  I'm leaving it to God. 

Have I mentioned that my heart aches for my boy?   Just checking.

God's precious child!

The ENT wanted me to check with his surgeon to make sure he didn't need any other surgeries at this time, so he wouldn't be put under twice.

That brings us to today.   We went to visit his surgeon.   I explained what the ENT had said, and also mentioned that the orthodontists (who had already faxed him their opinions) felt his jaw had been widened enough for the bone graft.  After a thorough examination.  He agreed.

So, we head for our 13th and 14th surgical procedure, his 9th myringtomy (tubes in ears) and the infamous Alveolar bone graft.  

Now here is where I once again claim that being a Mama is the world's toughest job.

I asked the doctor to tell me the procedures and recovery for the bone graft.  

He said that bone for the graft could be accessed from three sources:

  • Allograft - cadaveric "living" bone obtained from a bone bank with added stem cells
  • Autologous - bone harvested from his own body which could come from either the hip (iliac crest), or the skull (if the hole that needed to be filled is very large).

I asked what the differences and pros and cons would be.

He said pros were the obvious, which is to provide support for the lip and nose, improve symmetry (although his nose will be another surgery in the future), and form a continuous upper gum ridge for adult teeth to adhere to and grow from.

He said the cadaver graft would obviously not have the pain as harvesting a bone from his own body, but he only uses cadaver bone when it is not a large hole he needs to fill.  In addition, doing the cadaver graft he would only need to remain in the hospital one night, if there were no complications.

Then, I asked about the cons and how he would determine which graft he would use for Kai.

He said he would not know until he was in surgery, and looked inside to see the depths and width of the cleft, how much bone or what type of graft he would use.

Number 1 con for the hip or skull, "Pain!"   I asked how long would the pain last, and held my breath hoping to hear, "a day or two".   He responded with, "Two to three weeks."   The surgery would last approximately 5 to 6 hours, and his hospital stay would be 3 or 4 nights, possibly longer, depending on how he does.  He would then be out of school for another week after that and be on liquid/soft foods for 6 weeks. 

He also mentioned that he would need at least two more surgeries to correct his deviated septum and move facial muscles around that will allow for easier breathing, since his palate deformity was pretty severe.

Bless his sweet heart, Kai loathes missing school because of the makeup work.  I told him we'd deal with it.  Honestly, I think we have bigger fish to fry at this time so I'm not gonna stress over it, not to mention that he has amazing teachers that will no doubt, work with us.  

After being told about the autologous grafts, I really almost felt like asking nothing else when he emphasized the pain from the hip.  I felt like I had been punched in the gut.  

I then went to check out and asked when someone would contact me about the surgery.  They told me, of course, that they had to speak to the insurance company (which is a whole other story since we are thousands away from meeting our insane deductible), and then coordinate with the ENT a surgical date.  But, she was clear to say that we are not to expect anything for at least TWO MONTHS.  I said, "Months?  TWO MONTHS?"  The girl said, "Yes, we have approximately 45 children waiting to be put on the schedule for surgery."   ::sigh::   

So, we are looking at the end of April, possibly May before all this occurs.  I remain steadfast on the fact that God's timing is perfect, so I didn't question it, or try to push for an earlier date. Besides, I was still numb, thinking about my skinny, little guy who will be crying in pain.  I have seen that sweet face beg me to stop the hurt after a surgery, and have felt completely helpless. But, I have also seen God perform miracles right before my eyes, when I begged Him to take the pain away.

It's hard to explain, unless you've been through it, how difficult it is to see your child go through surgery after surgery, and yet....we are SO blessed.  God has taken such incredible care of us.  He has never, ever failed us.  It took me driving home, shedding a few tears, hugging my husband and claiming over and over how I wish I could be the donor, for me to realize that yes, while this is another surgery for a little boy that has been through more than any child should go through, HE IS HEALTHY!

I thank God from the depths of my soul, that I could say those words.  I have friends with children that have terminal diseases, with children going through their second rounds of chemo, with children in wheelchairs that will never know the joys of running through a field or racing down the street.  I. WILL. NOT. COMPLAIN.  

My heart hurts for my boy.   Yes, it does.  It tears me up that he is going through yet another painful surgery, but he is tough!  He is resilient!  He has a great surgeon that knows what he's doing and truly cares for the children he treats.  

But most importantly, my precious little Kai has a Savior that loves him and that will never forsake him.  A Savior that is indeed the Great Physician.  A Savior who has guided every surgeon's hands that have ever been placed on this little boy, and a Savior who knows what is best for all of us and we could blindly trust.

So, while I may have the toughest job on the face of the earth, I will do it daily.  Gladly.  Joyfully, for no monetary reward.  The smiles and joy in the faces of those precious babes God entrusted me to care for, is worth every single tear and pang of pain in my heart.  My greatest gifts came in the form of six little bundles.  

Isn't he the sweetest?
We covet your prayers for both his ears, and the easiest, less painful and successful bone graft possible. 

This Mama thanks you from the bottom of her heart.


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