…To the 4th floor that is. Good news! Kai moved out of the ICU this afternoon. Thank you for all of your prayers this morning for his pain, Kai had a better day and we had a number of great victories including the first smile we’ve seen in a long time.
He met with the different therapists today (speech, physical, and occupational) and the physical therapists helped him stand with our help and holding him up. It was brief but awesome to see.
It seems that resting is hard for him – I’m not sure if it’s pain or side effects of the medicines he’s on (I’ll ask this tomorrow) or a combination of so many things including the fact that it’s just hard to get good rest in the hospital. But, I think what’s hard, and I’m anticipating there is going to be so much more of this, is just feeling so helpless when he’s just moaning and not being able to do anything. He cries out “Mommy” or “Daddy” but at time like these we just can’t bring him comfort and of course as a parent that’s all you want to do, you want to “make it better”. Nighttime seems to be the worst time for him (he’s been struggling to fall asleep for a long time now) but tonight his moaning sounds less of pain and more of just restlessness and agitation which is a good step!
The picture below is of when Kai’s friend Kailani came to visit today. Kai had a great visit and shared “apple squeezies” with her and the played a game of puzzles on the iPad together. And if you look close at this picture, Kai asked to hold Kailani’s hand and she helped him as the nurse was checking on his PICC line. Sweet, sweet moment. 🙂
Thank you again so very much for your support and prayers today! We are fumbling through this whole thing and trying to learn as we go and also try to just be Kai’s Mommy and Daddy which is taking on new meanings and challenges each day and so we thank God that He’s being our rock and that you all are helping us back up to cling to Him when we feel like we’re slipping or that we might let go. Thank you again.
Good morning. I realize now that I may be posting so many of these more specific prayer requests, but I hope that’s ok.
During this (which admittedly feels like it’s been forever instead of just a few days) we oftentimes can’t even figure out words to pray so we just say God heal Kai. God heal Kai. Over and over again. I’m a newbie at making prayer request and not sure how to ask and definitely don’t have the right words,
but Kai clearly has this army of people fighting for him so if it’s ok Ill be calling out requests. Last night as I posted the update Kai started moaning again. He has moaned in pain throughout the night except for just a little bit right after he took some pain less. This may be all normal but I humbly ask if you wouldn’t mind praying for whatever is going on and pray that it is just part of the healing and is normal and just send him good thoughts helping him know and feel he is strong through all of the power being poured into him by God. Or just praying simply, God heal Kai, knowing that how that may look and what path it may take is up to Him. Thank you so much. So much.
This afternoon Shawn and I had the awesome, awesome privilege to get to hold our little Kai monkey again. He spent most of the morning still pretty out of it and the focus was on managing his pain. Then around 4:00 or so we asked him if he’d like for Mommy to hold him and he said yes tearfully and reached out. Our nurse helped us unwind the cords and brought Kai to sit with me in the chair. I can not express how thankful I was to be able to hold little Kai again — even if he was giving his signature “stink face”. Kai then asked to eat something and ate an “apple squeezey” and then asked to read books. He even “tickled” my arm. Uncle Colby, Shawn and Maya played a variation of hide’n’seek using the hospital bed, then Kai told me it was my turn to hide and he wanted to sit with Daddy.
Kai stayed upright for the first time in a long time for about an hour. He’s still very weak and his brain, I think, is still just readjusting and recalibrating, but he’s doing really well. The physical therapists, speech therapists, and occupational therapists will be working with him daily to help him recover. And tonight he even asked to watch his favorite videos on YouTube which may or may not include random Russian videos teaching him how to say construction vehicle names in Russian (side note: does any other parent have kids who seem to find THE most random stuff on YouTube?).
They’re keeping the feeding tube in for now and we will see how he does eating tomorrow. And let’s be honest, Kai had his stink face on all day. But I love that stink face. And I can’t imagine the pain he’s feeling right now and not to mention the exhaustion and confusion. He is still having quite a bit of stretches of pain and it hurts our hearts so much hearing him just moan in pain, but he IS having many good moments too, even if brief, and that is definitely something to celebrate and give thanks for.
Thank you God for allowing us this day with Kai and the many victories and advancements he made today and providing all of you to help us. Thank all of YOU who have filled our Facebook feeds, sent text messages, emails, and virtual hugs. Your prayers and support have lifted us, revived us, and given us the life we need to be able to keep pushing forward.
Kai had a very restful night last night – so so thankful for this. He was kept under light sedation through the night and went in for another MRI of his brain this morning to see how everything looked after surgery. Praise the Lord that everything looked exactly how they expected. In the end, they were able to remove approximately 95% of the large tumor in his brain which is amazing.
They’ve sent the tissue from the tumor off for pathology testing and we’re hoping that by mid-week we will have a final diagnosis of what this disease is and can formulate the treatment plan. Right now they’re saying he probably needs a few weeks to recover from the brain surgery and get as much strength as possible before they will start treatment.
We got to see Kai’s eyes today (admittedly he shuts them as tight as possible when the nurses want to look at them, but I’m ok with that, shows me that strong Kai will and tenacity combined with the stubborn resolve that 2 year olds everywhere have perfected). He’s responded to questions (correcting me on the color of Thomas the Train) and telling Shawn to sing his bedtime songs. He even tried to sit up once when I came in the room.
Kai is also on less medications than yesterday and getting nutrients now from a feeding tube. The little guy definitely has some pain but he’s managing it really well and the nurses here are so good to him and us and trying to make him as comfortable as possible.
His recovery will be day by day, but he made great strides today. We just continue to pray for Kai to be healed and that he can rest and recover smoothly.
Thank you again so so much for all of your support. We truly do feel it and we tell Kai how many people are praying for him and thinking of him – when we start talking about all of you and saying the different names he tries to open his eyes, so we know he hears this. So thank you so much from all of us.