Yes, folks. Kai did not de-sat one single second last night. Thank you, Lord Jesus!!!!
Linny (Mom of Many), you had me cracking up because you were so right on the button, especially being the first to comment. You said, "...I would love to say ummm he de-sat ZERO times and you stayed awake cause you thought the equipment was malfunctioning..." and that's exactly what happened.
Every 20 minutes or so I'd be startled out of my sleep and have to reach over (Kai's in his little bed next to ours) to make sure he was breathing. Then I'd glance at the monitor and his sat level would read, 98...99....97....98....100....98!!!!!! This went on ALL. NIGHT. LONG! I woke up with a headache, but with a heart filled with praise and thanksgiving! I can't even tell you guys how many times today I've walked around saying, "Thank you, Jesus! Thank you, Jesus!"
Don't know what tonight's gonna be like, especially since it's now 11:00 p.m. and he's already had 4 de-sats, going as low as 79. My heart is breaking, filled with that same sadness and feeling of helplessness. But I DO know that God (and all of you holding us up in prayer) continue to be my strength. I can't describe the feeling. I know I've said it over and over, but it's just a horrible feeling that hovers over you. A darkness. I try to envision our Blessed Mother by his side with her son, our Lord and Savior, reaching down to fill Kai's lungs with air each time he stops breathing. I need that light in the darkness. Dear Lord, please be that light. I need you, Jesus! My boy needs you, Lord! I'm afraid of what the darkness brings. But, I know that you and you alone are God, and you are merciful. May our prayers be Your will.
Thank you all for playing along with my silly "warped" game as my sweet friend, Jill, called it. I am off to pray by his bedside, but for one complete day I walked around with a huge burden off my shoulders, praising God and believing that we are reaching the end of this trial. It felt good!
Love you all and please keep praying for another good night. May these early-into-the-night de-sats be flukes and may we really be on a roll to complete healing!
UPDATE: LAST NIGHT'S FINAL DE-SAT COUNT WAS NINE.
What a night! I'm gonna let ya'll take a guess at this one! The person to guess correctly wins .....ummm.....the honor of being right! (Please leave me your answer in the comments section.)
Here's the question:
We visited the pediatrician yesterday and she was astounded about all that's happened from the time she sent us to the hospital two weeks ago. Kai is now on a high calorie diet to try and restore some of the 5+ pounds his already thin, little body has lost in this process. I wish I could trade places with him....heh!
When I arrived home, I called Dr. Hero, (no, that's not really his name, but he's been our hero when it's come to Kai's cleft care from day one) Kai's cleft surgeon up in Orlando. I gave him the recap since we've been home and told him that we are now on 2 days of de-sat'ing into the low 80's. He definitely helped me put things a bit into perspective.
Prior to his surgery, according to the sleep study, Kai de-sat'd 384 times the night of the sleep study. THREE HUNDRED AND EIGHT-FOUR TIMES going down to a low of 71 that night. So, as Dr. Hero pointed out, de-sat'ing 12 times in one night is a vast improvement. Are we at our goal? Absolutely. Not. But, we are only 9 days post-op. Swelling could last for weeks. One of the things I love about this doctor, as opposed to Dr. Ego, is that he is very conservative when it comes to surgery. (Either that or he really doesn't mind this crazy, Cuban Mama calling him at least once a day asking him for advice.) I know he will not take Kai into the operating room unless he feels it will be beneficial to Kai.
I faxed over the results of Kai's sleep study to him and he will be contacting the Director of the sleep clinic here in Ft. Myers, who just happens to be a personal friend of his, for his opinion on Kai's situation. He said the options would be to:
a) Have another sleep study done now to see if there's been marked improvement and if there still seems to be apnea-tic episodes. But, if there is still swelling, it wouldn't reflect true results.
b) Go up to Orlando and have another endoscopy (poor Kai!) done by Dr. Hero's ENT to see if they see further obstructions, now that the adenoids have been removed. Then act accordingly.
c) Wait it out. Continue to monitor him keeping records of drops in saturation. Allow the swelling to reduce and see if the saturation levels rise over the next month. (He said if it was his child, this would be his choice.)
I did ask him point blank if the de-sat's into the 80's, for a few seconds at a time, could have long-term effects. He answer was, "In my opinion, the answer would be no. But that said, I am not a sleep specialist and would feel 100% more comfortable if we got that answer from someone who was." So, right now, that's where we're at. Waiting for the answer to that question.
Do I feel better? Right now? Yes. But, when I watch my child laying there while I hear alarms sounding in the background and knowing that maybe he is struggling to breathe or that I am actually sitting by watching something happen that is potentially harmful to his health, that terrifies me.
I know God remains in total control of this situation. I know that He is well aware of the outcome and knows the answers to the many questions that fill my mind daily. I also know that He is allowing this to happen for a greater good. I believe that. I really do. I know that He's strengthening my faith through this trial and I am trying hard to let go and let His will be done. As always, I continue to give him the glory for all that has occurred, hard as it may be at times.
Do you remember THIS post? I went back and read it today. Again, I had to laugh. My first thought is that YOU GUYS ARE SOME MIGHTY PRAYER WARRIORS! I gotta be careful what I ask for.
Do you recall when I was asking you to please pray for God to intervene because we needed to come up with $3,000. for Kai's ear tube surgery? Well, guess what? God intervened. BIG TIME! Kai got his ear tubes! He also had his adenoids removed and a helicopter ride to boot! We're probably approaching the $200,000. mark on medical bills for these past couple of weeks, but I say this with my entire heart and soul, this is the ONLY issue that I am 100% at peace with. Kai got his tubes! He's being taken care of and as many of you have said and reminded me of, God will provide. He has. He does. And He always will. I know the reason why I have that peace. It is the fruit of your prayers.
Therefore, I am still asking. Will you please continue to pray for our little man's complete healing?
Both Scott and I truly want to say thank you to each and every one of you for all your prayers, your support, your love, your actions and most of all, for allowing the Jesus in you to shine through like beacons in the night. Many times you have been that lighthouse when we've felt like we're drifting out at sea. Thank you!
Heavenly Father,
I come to you today in complete thanksgiving, Lord. I again thank you Lord for choosing me to be Kai's earthly mother. I thank you Father for showing me through others, people I have never met in person, that you are alive and living in their hearts. You've shown me that we are one body in Your Blessed Name.
Father God, I thank you for the gift of your precious son. It is through Him and He alone that I am able to be there for my son. Your word tells us that it is when we are weak that we are strong, through our Savior, your son. I thank you for that strength, especially during times when I thought I couldn't go further.
Lord, I lift up Kai to you and ask that your will be done. I raise Him into your arms Father, and ask for complete healing of his little body. You are the Great Physician. You are the alpha and the omega, the beginning and the end. I entrust our little boy into your care above all physicians, Lord. May the outcome of these trials and struggles glorify you, his creator. May you fill the doctors whom you have given this gift of knowledge to, with the wisdom that they need to treat him properly.
Thank you Lord Jesus for being in my life. For being my rock.
In your precious name I pray.
Amen.
A picture of Kai during his helicopter flight reading the "flight plan".
I am extremely frustrated, so say the least. He is on 3 medications to dry up secretions, along with an antihistamine, and is being suctioned 3-4 times a day. The ENT feels that the swelling, which should be down by now, along with the huge amount of mucous and secretions that he had are still a factor.
We were discharged and walked into our home in Fort Myers at 11:00 p.m. on Friday night. We are to return to Miami in one month for another sleep study and to check his ear tubes.
On a funny note, I had to a laugh (because if I don't laugh, I'll cry) when I was going through the 12 days of mail on Saturday, I noticed that the hospital bills arrived to our house before we did.
