Today has been an exhausting day. We had to have Christian at OHSU at 6 a.m. His surgery was at 7:30. Christian tolerated the surgery just fine. It lasted about an hour and Dr. Milczuk came out to give us a report. He said that Christian still has the Subglottal Stenosis or narrowing of his upper airway. His airway has grown as Christian has grown, but the narrowing is still there. I asked Dr. Milczuk if he saw "improvement" in the airway. He told me that he could not say that it had improved. He did see that the area was "softened" where as before it was hardened. This, he says, is promising. The plan is to wait another 6 months and then schedule a clinic appointment for evaluation with Dr. Milczuk and have another surgery the day after. So that will be in April sometime. I asked Dr. Milczuk if Christian should go ahead with speech therapy and he thought that would be a good idea. Dr. Milczuk also said that Christian's airway did look better than he expected it would look. We take that as good news. I was prepared for Dr. Milczuk to tell us that Christian was not ready to have his trach removed. I really did feel in my heart though that he would see definate improvement in our Litte Turkey's airway. It was difficult to hear him say that he did not. I remind myself that Christian is just 15 pounds, 25.5 inches long and still has quite a bit of growing to do. All the while a million thoughts race through my head. I feel selfish and guilty for wanting more for my precious baby who has already faced lions and overcome the multiple odds that have been stacked against him. We have been given so much and we are grateful.What a precious gift. And I can smile through it and know in my heart that he will get through this too. But I can not hide the pain I feel in my heart, the yearning to hear my son's cry, his voice, his precious full-belly laughs. I can not deny these feelings but I know that if I never hear his voice it will STILL BE ENOUGH just to have him, exactly the way he is. HE IS ENOUGH.
Of course I am not giving up on my hopes that Christian will one day be trach-free. I am just tired today and these emotions are raw. I am simply a mama wanting the best for her child.
Here is a pic of Christian as we arrived at OHSU this morning:
Here are some photos of the Turkey before surgery. He has a little hospital gown on.
He handled surgery like a pro and still felt fit to go flirt with all his Lady Nurses upstairs!
4 comments:
I am so glad that he tolerated he surgery so well. He looks like his normal happy self! You are so amazing! You stay so positive... and you are totally right... He has overcome so much already. It's only a matter of time! We love you guys! Talk to you later!
Missy
Don't feel bad about how you are feeling. It is normal for a mother to have these thoughts & feelings. You are a strong, wonderfull mama. You can see that he enjoys life as much as you do. These are the important traits we can only try to pass on. Christian already has that one under his belt. He is a tough little guy and God has a plan for him that will give you comfort one day as you look back on this chapter. You were chosen to be his mama, no one else. You. I don't know one person that would have been as positive and wonderful to go thru all this as you. And I lived with you. It wasn't on the surface. You are amazing and raising an amazing little guy.
love you!
I am so glad that Christian faired so well through surgery. I know that as parents we are ill-equiped to handle pain or suffering on the part of our precious babies, but we are strong for their sakes. A moment to reflect on your unguarded feelings is completely understandable, if not expected. Wanting the best for Christian in no way negates the joy that he is, nor the love you feel. He has blessed our family in ways he may never understand and as we continue to learn from his resolve, we all too pray that the miracle continues, and Christian continues to defy all odds, and show us what he's made of! There's more to this boy than just irresistable dimples, this I am sure off. Love to all...
Cousin Donna
I have no doubt that Christian's trach days will be over soon and I know it must be tough to hear that there isn't the improvement you've hoped for yet. I just look at those pictures of you holding him on your slide reel and I'm amazed at how far he's come- and how far YOU and JASON have come. You're such a great mom, Crystal and HE will make ALL things beautiful in His time. We'll be prayin', that's for sure!
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