Round 1: The nurse woke me up early this morning by emergency phone call, telling me that Kayden yanked his breathing tube out. In the 3 seconds it took me to run down the hallway (parents have sleep rooms, we aren't allowed to sleep in the kids' rooms) he was being rolled into the OR for reintubation. Awesomeness.
Round 2 : The attending sat Ben and I down to explain that she, in fact, lied to me yesterday when I asked if she was concerned that something else might be going on with Kayden aside from RSV and she responded no. She is worried about his weight, and him still being so small. He isn't gaining the appropriate weight given the amount of controlled calories he is getting through the GI tube. She would like to take blood and do some more genetic testing (they already screen your baby at birth for broad-spectrum diseases, and all of his were negative) to see if there is something hidden. More awesomeness :(
Round 3 : Kayden has pneumonia as well now and is being treated with antibiotics.
Round 4 : I was THAT mom today, flipping out on the nurse staff after he came back from the OR. I was in panic mode, and reverted right back to our scary Thanksgiving day nightmare. Kayden's alarms went off and no one was at our station hub except two people doing paperwork. I popped my head out of his room to request help since no one was coming and NO ONE was responding still! Once my nurse arrived she told me she was sorry, but her other patient of the day was on the opposite side of the PICU floor. *Unacceptable* !!!!!! I'm sure I'm the talk of PICU. I had a complete mental breakdown and in the middle of it my nurse says, "welp, I'm going to lunch now".......Baaaahhhh! Speechless, utterly dumbfounded, and FURIOUS momma bear are some adjectives to describe myself at this point. Needless to say, I got our room moved to right in front of the main station where the doctors are.
Thank goodness we are finally at shift change and I have my little support group of nurses here. I'm familiar with them, and them us. It's a relief knowing that when I have to go to bed tonight I am ok walking out of his room. Thank you night staff for being so freaking awesome at the most exhausting
hours of the day. Kayden is stable and back on track, kinda. His settings didn't go up any, but we are giving him the remainder of today to rest before we change any settings. I'm in awe of his rowdiness, and ability to stay awake through all of the sedation meds he is on. I can tell he is just as over this as I am. He wants to plump right up from a Christmas feast and snuggle on the couch by the fire and Christmas tree.
So tonight, I'm still praying for a Christmas miracle and for all good results from the blood and urine samples (we won't know for weeks). God, please look after my baby and give us all the strength to get through this and back home. I'm praying that as bad as RSV was/is for him, that RSV is the only issue here, and we can continue to work towards an extubation date and weight gain without any other bumps or pot holes along the way!
* The waves keep crashing down, but he is trying SO hard to swim*
With all our love for those thinking and praying for us <3
Melissa & Kayden
Gosh Melissa this blog post was a nail biter. Altho, your nurses didn't seem to be cooperating yesterday, Kayden is at the best place he can be. I'm thankful they were able to get the tube back in, rather than having to 'go the other route'. Turtles may be slow, but...in their own good time they make it to their destination...not huffing and puffing, not out of breath, but they make it...love you guys....
ReplyDeleteMelissa-
ReplyDeleteThis happened to us with Joe up at Boston Children's and I thought it was because we were not there all the time. I guess it happens at every hospital. Those machines used to scare me so much when they would go off and some of the nurses were so nonchalant about it. It enraged me. I didn't care if they had 20 patients. He definitely sounds like a fighter and he'll keep fighting. Sending you good thoughts and praying for you and your family every day.