Last night was a bit rough in terms of sleep for mommy, but little Chase had a pretty good night. He seems to be taking to his new room on 7C quite well. Unfortunately, it's time for yet another step backwards.
The ENT folks came through this morning and did a flexible scope bronchoscopy on Chase here at his bedside. I was completely devastated when the doctor said she'd need to repeat last Wednesday's procedure to remove some additional granulation (scar tissue) from his throat. I could not believe it. You can imagine the fears and concerns that overwhelmed me when I heard this. There still isn't a clear explanation as to why Chase coded and required CPR after this procedure last week, so I'm less than confident they know how to prevent it from happening again. I am so scared!!! Plus, he'll probably have to spend the night after the procedure -- you guessed it! -- back in the PCICU. This isn't a big deal. What I'm less than excited about is I'll have to pack up our room here on 7C for the night and probably be put into a different room the very next day. ((sigh))
They also put off his swallow study until later this week since he apparently needs to be on one-hour compressed feeds and right now he's on two-hour feeds. I was looking forward to the swallow study because I just have this feeling that he's going to excel at it and that we'll move forward with mouth-feeding by bottle and eventually (hopefully) able to start breastfeeding. So ultimately today has turned into a series of steps back and/or a lack of progress forward.
I know, I know. Everyone said this would happen. I should have seen it coming. But truly, the idea of Chase repeating the bronchoscopy procedure in the OR again has me beyond frightened. What if they can't bring him back like they did last time?? I've been in tears over this all morning. I know God is still here and still is in control of Chase. I know He has a perfect plan for my son and I do believe His plan involves complete healing. He is with us through this journey. But I'm still human, I'm still a mommy, and I'm still afraid.
Yes, you are human and a mommy and your fear is completely understandable. Because of what happened last week, you can be certain they will be watching him even more closely this week. He may have the most closely monitored bronchoscopy of any baby there! You have hundreds of people praying for Chase, but we must also remember to pray for you and Sean, that the fear you feel will be eased and replaced with complete trust and rest in the Lord.
ReplyDeleteAs for those steps back, I won't be surprised if they are made up for in LEAPS forward.
Teresa
I know it seems hard to think about having the same procedure again, especially after what happened last week. I am sure they will plan better so there is not a repeat of what happened. Small steps back are not bad...especially when you think about how much Chase has been through already.
ReplyDeleteI will continue to keep all of you in my thoughts and prayers.
Dearest Kathy & Sean,
ReplyDeleteI have read your words and I know they are from a normal, human, concerned, worried, and apprehensive mother. Let no one deny that is true. Now let me simply say dear neice that your words at the end of your blog are indeed your strongest of all. YOU DO KNOW GOD HAS IT UNDER CONTROL! Yes, He does. Yes, some fear over repeating a procedure that wasn't the best is a justifiable human concern. Sweetheart, I just want to remind you of God's words to Joshua as he Feared (in his human state) what he will do as he follows Moses - MOSES? He was the best - how can I possibly make it and lead these people God? God to Joshua in all his fears, and humanness was this: "I WILL NEVER LEAVE YOU NOR FORSAKE YOU!". Kathy, that opromise is a PROMISE from GOD Himself. It's for you, for Sean, for Chase, for Sam and all the Fam & friends. Kathy, remember one more thing He asks of us: Cast/throw/give/drop/toss/hurl/ ALL OF YOUR Humanness/NORMAL REACTIONS/Uncertaintities/cares/worries/fears/anxieties/apprehensions/ ON ME BECAUSE I CARE ABOUT YOU..and your whole family! I am counting on our GOD who has you and Chase at the BEST TEACHING HOSPITAL IN SOUTH CAROLINA to again...COME THROUGH FOR CHASE!!!
"Hold on my child, joy comes in the morning, weeping only lasts for the night. Hold on my child joy comes in the morning, the darkest hour means dawn is just in sight - I see the Light- Hold on my Child!" With all our Love and Trusting God right by your sides remaining solid in our prayers... Your Uncle "D" and Aunt Gwennie