I'm up at the hospital again today. After making it through my public transit experience last night at nearly midnight, I woke up this morning feeling good about things. My brothers girlfriend, Allyson, is a grad student at the hospital next to Cayleigh's NICU so she and I rode the bus back to UCSF at 9:00 this morning.
I got here and walked in to a room of at least 10 doctors and specialists gathered around Cayleighs crib. They were talking about her. Yes, I did realize that this must be rounds and that parents don't stay in the room during rounds - so I made myself blend into the wall and listened to them talking about her. The nurse, Lori (I find out her name later), is a tall, slender brunette with semi-curly hair that is pulled up high into a ponytail. She's pretty and has natural makeup on with dark blue scrubs. I hear her say that she is going to have to poke my baby today because she isn't happy with her IV. She says it looks a bit red.
I don't remember who looked up but they were all looking at me. I wave, say Hi I'm the mom, and stand there. The neurologist was talking about scheduling Cayleigh for a G-tube feeding tube soon. I ask her about the anesthesia - last time Dr Fernando said that he was worried about putting her under because of her airways. They listened to me. Asked me some questions - well, actually I was trying to ask about my concern with the anesthesia during this proposed G-Tube surgery because of my last doctor meeting but the lady sitting in the chair (leading the meeting) kept thinking she knew what I was asking and would start answering a question I didn't ask. She did this several times. I finally said "No ma'am, what I'm trying to ask is if there is still concern about her airway not working properly if she goes under for the G-tube surgery". everyone looks at me, then look at her. She answers and says they'll discuss everything with me but that they don't want to jump ahead of themselves and do the trachea surgery WITH the G-Tube surgery because maybe the problem can be resolved with the GTube alone.
Quickly - as I sit here and pump and get ready to go back - Cayleigh just went down (I walked with her) for a dye cast thing through her current feeding tube that runs from her nose to her stomach. They're going to make sure the dye goes through the intestines properly and then see that its being refluxed back into her mouth/throat. Last time they suctioned her there was breastmilk in it. (before I arrived this morning) It's a relaitvely short procedure and she's probably already back by now.
The Optomologist was there again, this time with a Pediatric specialist eye doctor - they said everything is FANTASTIC! At her 6 month checkup they want to see her again to make sure she doesn't have near sightedness as babies with the arthrogryposis sometimes do. They tell me to check one thing off my list - and I do.
After they were done, and before we went to the room for the test, the 2 ortho guys are there. They were about to put a harness on Cayleigh again. last time she desated really badly. I hover over Cayleigh and look at them (like a dog would with her pups) and call Lori over. Can you please suction her really good before these guys put that harness on her? She says sure and she does. Then she gets involved sensing my tension I think. she says that the harness caused a really bad problem last time. The guys start talking about how one attending needs to call another attending - I didn't catch it all but Lori had a look on her face I won't forget and said "I don't think you need to put that on her. She's going down for the floroscopy test and I think it would really bother her". They look at their notes and then ask about the problem with the redness. Lori starts checking the notes and I tell them that Casey told me her ankles were effected. Lori says bilateral (something I didn't catch). It is in the inside of her ankles that had the problem. The other guy, who wasn't so edgy, says "Oh look, they are on wrong". last time they put the white plastic hard part on upside down on both legs. DUH
So anyhow, before they even touched her Cayleigh had a really, really low O2 desat. I pushed her back up, touching her back and kind of rocking her and saying "Cayleigh stop that! Breathe baby Mommy wants you to breathe RIGHT NOW" and Lori had to get the little mask think with the O2 and she placed it by her face - not on her face directly but near it - for a couple of seconds to help her bring it up. *sigh* Otherwise, when I had her earlier in my arms for 3 hours, she didn't desat ONE TIME.
I'm going to close and go turn in my milk, clean my pump and go to my baby. The church is going to take food over to the house tonight which is good because my mom is watching the kids overnight. (THANK YOU MOM - WE COULDNT DO THIS WITHOUT YOU). Nic is coming up to the hospital to stay the night. THANK YOU TO NICK for letting Nic and I stay over. (and for your Macaroni & Cheese) :)
PLEASE PRAY FOR CAYLEIGH
TOMORROW MORNING AT 7 AM SHE IS ON THE SURGERY SCHEDULE (LORI WAS AMAZED AT HOW FAST THEY GOT HER ON . IT NORMALLY TAKES WEEKS) FOR THE G-TUBE AND OTHER LITTLE BAND THING TO WRAP AROUND PART OF THE TUMMY THAT HANDLES REFLUX. (I'LL HAVE THE RIGHT TERM LATER)
PLEASE PRAY FOR THE ANESTHESIA TEAM THAT THEY CAN 'TUBE' HER WITHOUT ANY PROBLEM. THAT SHE CAN GET THE BREATHING TUBE IN AND DO EXCELLENT DURING SURGERY.
PRAY FOR THE G-TUBE SURGEONS THAT THEY ARE SKILLFULL AND SUCCESSFUL IN THE SURGERY
PLEASE PRAY THE THIS G-TUBE RESOLVES THE APNEA/OXYGEN DIPS AND THAT SHE DOESNT NEED A TRACHEA
AND PLEASE PRAY FOR THE KIDS THAT LIFE WOULD BE AS NORMAL AS POSSIBLE THROUGH ALL OF THIS
PLEASE PRAY FOR MY HUSBAND AND I FOR GOD TO SUSTAIN US, GIVE US PEACE AND RENEWED LOVE EVERY DAY FOR ONE ANOTHER
AND PLEASE PRAY THAT CAYLEIGH HAVE NO MORE A/B EPISODES
AMEN
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