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Thursday, October 23, 2008

Bad News, Better News

I have probably spent an hour searching for a graphic to describe how I feel tonight and just can't find one. Nothing seems right. I am upset and optimistic at the same time. I have cried and laughed with friends throughout the day. I am frustrated and hopeful. As you can tell, my emotions are all over the place and have been all day. This morning after I fed Graeme and gave him his antibiotic, I peeked in his mouth as I have obsessively done each day since his surgery which was 9 days ago. I saw a black hole. A small black hole but it was a hole in the middle of his suture line. I flipped and felt like crumbling. Graeme was blissfully unaware that his mother was freaking out and was his happy and charming self. I called the physician immediately. Have I stated how much I love our plastic surgeon, Dr. Mark Chariker....well I do. He is not the funniest or warmest of doctors. He is direct and no nonsense and exactly who you want with your child due to his experience. Anyway, he is so busy that it is often difficult to get his staff on the phone. I called and spoke to the receptionist who instantly put his nurse on the phone. I explained the situation to her and she said that we should bring him in to see the doctor. I reminder her that we lived 4 hours away and asked how late I could get there. She then asked more questions....was I sure there was a hole (um....yes, I'm a pediatric speech therapist and I see air bubbles), where the hole was located (right in the middle of his palate), was he bleeding (NO...thank goodness) and then stated she would call me right back. I told Wes, called my best friend Becky who was willing to drop all plans and head out of town with me (I love you Becky!!! thanks for being so wonderful!!!) and jumped in the shower while mentally trying to think of everything I would need to pack so we could leave within an hour. Within 10 minutes, Dr. Chariker called me back. He asked a few more questions and he figured out that the hole was where the soft palate meets the hard palate. This is the most common place for a (can I even type the darn word) fistula to form. He told me that it occurs in approximately 3% of the patients and that there is no need to rush in today. He will see us next week and probably monitor the situation. Graeme's palate was very wide and he was not surprised that this complication occured. He hopes that it will close on it's own but if not (GULP), Graeme will have surgery again in about 6 months. I really don't know what to say after that except that we are hoping and praying for the best. Graeme has done so well and has kept his No-Nos on without fussing. He is just remarkable. Due to the way that his lip was repaired in China, we knew that a fistula in his gum line was possible. Dr. Chariker had repaired this specific place and warned us that he was not sure if it would hold for lack of a better term. Yesterday, the fistula in the gumline opened up. I was disappointed but not upset as I knew this was a possibility. Then, I found the second fistula today and that upset me. I just want it all to be easy for him. I don't want him to have any more surgeries than he needs to and I want to protect him and make it all better. So our bad news....not one but two fistulas, better news....they can possibly heal themselves. Praying for healing and enjoying each funny moment with our little Graeme!

13 comments:

Chelley said...

PRAYER SAID!!!!!

AND BIG BIG huz for you

k1 said...

Hugs and prayers for you and Graeme, and praises that you have such an awesome, selfless friend in Becky to help and support you.

Qiuqiu's parents said...

QiuQiu has an opening near the gumline too, which the doctor told us from the start that she would have, since her cleft is so very wide. As for the rest, she suggested we just not look, since there's nothing to be done until the second surgery. We are doing a pretty good job of taking her advice and just letting it heal as it will. She has to have the second surgery in six months no matter what since her lip is a two-stage job, so in our case it isn't going to make a lot of difference. Try to stay calm and just wait it out! He'll do fine in the end. They're all in for multiple surgeries in their lifetime...so it goes. But these kids learn to be tough and brave and just go with the flow. You've got to be proud of them!

Waitingfaithfully said...

Oh Margaret,

I was afraid that might have happened when I read your comment. I'm so sorry. Praying that Graeme heals up on his own, without the need for more surgery.

I have been in contact with another mom who is going through the same thing. Her two year old (who came home just ahead of Teddi and Graeme) was repaired the day after Teddi --and she (Willow) now has a fistula as well.

Our problem with Teddi is going to be a hole that remains in her gumline (there is a large space between two of her front teeth, where her cleft lip went through to her nose--does that make sense?) The surgeon said she couldn't close it, as there is nothing to attach anything to there. So Teddi still has a lot of air escaping. I would love to hear your thoughts on this.

If you have time maybe we could catch up by phone. My email link is on my sidebar, we could exchange numbers, IF you have time.

Praying for Graeme's healing.

Blessings~

Tina

Cora said...

I hope it heals on its own, it must be such a stressful time. You are in my thoughts.

Take Care, Cora

FHL said...

Oh Margaret I'm so sorry. Your sweet little man is on my prayer list! Big Hugs!

Truly Blessed! said...

Oh man, not good news! So sorry to hear your news.

Praying that Graham's fistulas will heal themselves and that no further surgeries will be necessary.

Kristin said...

Oh Margaret, big bummer for you all. I hope this heals itself on it's own. If not, I hope it's an easy fix.

How wonderful that you are an SLP so know what to look for. That helps so much.

I hope you have a great weekend!!

Denise said...

It could still heal on its own! I've seen many posts from mothers on the Adopt Cleft list who stated that their child's fistula healed on its own. Don't give up hope Margaret!

Janelle said...

ah, Margaret -- so very sorry to hear the bad news. we mamas want to shield our babies from pain and suffering, that's for sure.

You & your families are covered in prayer.

Janelle

The Straight's said...

I know just how you feel when you see the holes. However, if you get a chance to check out our blog and look up May and April of this year to see my little one's before/after pics of palate surgery. My daughter's holes healed themselves!

zsjmom said...

Oh Margaret,
This just stinks. I can so relate as we are also dealing with bad news of a different nature with Wyatt. I will pray for you and do hope we will see each other this week.

Tamara

Donna said...

Margaret, I know how you feel! Lainey developed a small fistula, too. Right smack in the middle of her palate, at 5 weeks post op. It won't close on it's own, but our surgeon said it can wait until she has her nose/lip revision around age 4. We were so bummed, we figured we were "safe" at 5 weeks. I'm glad that Graeme's has a chance as closure!