The good news is that they did not detect any seizure activity. He does have sleep apnea. A somewhat mild case but for Nicholas they do not like a mild case. They said in the average child they would let it go and retest in another year. Since Nicholas is a heart child they cannot ignore it. He had five episodes in a hour (sounds like a lot to me!) and his oxygen went down to 81% at one point. His average when he is asleep is 88. He did average 90-93 oxygen sats which was good for him. Anyway, all of that can put pressure on his heart and lungs. Even though his heart has been repaired we still have to watch for stress on it. Of course his lungs have never been great since his RSV episode two years ago.So what to do? I am thinking oxygen at night. No not needed right now. Okay then what? We need to take out his tonsils and adenoids. My heart dropped (and of course I was by myself) Down Syndrome children tend to have bigger tongues and smaller airways. Also with his neurological injury he cannot control his airway and secretions like most children. Plus, large tonsils run in Stephen's family. Three strikes on that one!! By taking them out it will create more room for him and hopefully allow him to control his secretions and sleep better. Not 100% and maybe not even 50% better but hopefully better than he is now.
Okay so you are probably thinking that it is just tonsils and adenoids. M and B just went through it. No big deal, right? WRONG!!
These are the main points with having this surgery on Nicholas:
1. He has a low pain tolerance. When he is in pain, he shuts down.
2. This pain could lead to cardiac or respiratory arrest-again..for the 3rd time.
3. Nicholas coughs up his secretions. After surgery it will be too painful therefore he has a high risk of pneumonia.
4. If he becomes too traumatized by the pain from coughing he could potentially not do it again. If he does not cough them up, he will have a higher chance of lung illnesses which could lead to getting a trache.
5. There is a higher chance of him contracting some illness by being in the hospital (H1N1!!!!) from 2-10 days.
The surgery is scheduled for October 28th. I have my days where I just cry, thinking about all that could happen. Dumb, I know, but I am his mommy and I cannot erase the memories of the things that have happened. The times when we thought we had lost him. That scares me.
Then I have my days where I feel a huge peace knowing God is in control. Even in my moments of sadness for what Nicholas again has to go through, I can and do rest in the knowledge that the Lord will never leave my son. He will hold him and protect him through this surgery. Now, would you rather have me holding you through the surgery or the Lord??? Easy answer, isn't it?
It reminds me of the song "Praise you in this storm." Number 2 on our playlist. "Even though my heart is torn, I will praise you in this storm." Lord, even though my heart is torn I praise you. I praise you for every storm you have given us. I praise you for the one coming up in October. These storms have brought us closer to you and closer as a family. It is going to be hard. As a mother my heart aches but we "can do all things through Christ who gives me strength." Philippians 4:13
2 comments:
I hear you completely and feel your heart exactly. None of this is easy and the answers are so complicated.
I was just talking with a close friend yesterday whose teenage son has severe ulcerative colitis. He's been hospitalized 34 times, multiple surgeries, port, meningitis, immunosuppressants, etc. They finally put him on meds that work- to avoid a permanent colostomy- only to now be faced with the fact that they may have caused lymphoma.
He's yet another case where the treatment causes new problems of its own. I SO understand that angst. We have to give it to God. There's nothing in our power left to do. We're lifting you up on this end!!
Hope to see you soon- at least before spring :) If we ever get out of quarantine!
I love you guys and am lifting you all up to our Father right now!
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