Saturday, June 4, 2011
Mommy, RN, PHD, WhateverIgottaBe
I got to the hosptial today at around 5:30 am, after dropping Nic off at the San Francisco airport. It was an early up (4 am) to say the least and we'd gone to bed around 11 after leaving the hospital late with the kiddos. When I got to the room a nurse was there taking her vitals. No fever. Last night she'd spiked a fever to 103 and then it went away after some Tylenol. She hadn't any desats last night the nurse told me. She also tells me that she had just changed Cayleighs diaper and that she'd just switched to Cayleighs 'new bag' of feed. She tells me that they will be taking another xra (the 3rd in her time there so far) to check her lungs again. They will also be by to take some blood to check her oxygen in her blood. Ok. I kiss Cayleigh, lay hands on her and pray and attempt to sit on the 'bed' thing and rest, but then remember that I have to give them my miolk. Of course, I'd forgotten to bring my stored milk with me to the hospital this morning which meant that I would have to go back later today- no better excuse for me than to 'have to' lol :)
So I sat down and then pops in the lady who is going to do the poking of my daughter. Our rules before 'letting' Cayleigh be hospitalized were that she was not to have any poking or prodding unless it was really necessary. First, I ask her who she is. She's got short, spiky black hair, too much eye makeup and looks young with bright blue scrubs. she tells me she is from Respratory - I ask her why she's got a needle to take my daughters blood then. She looks at me strange as if she'd seen a ghost. I tell her that I thought only a nurse or a phlebotomist (spelling? ugh) takes blood. She said that when 'doctors need the blood quickly they often times just send someone from their department' which screams to me code for "we're understaffed".
She puts a warmer on Cayleighs heel and tells me she has to wait for a nurse to open the drawer to get the needle. Ok, I say and I lay down. 5 minutes later she's back. I shoot up again and am at Cayleigh's side. She's asleep you know - I tell her. She says she's so cute and goes on about how precious she is, I tell her I know. (I'm sleep deprived and a little irritated - it mustve been the flourescent scrubs) She then seems nervous. I think I intimidated her. Well, she isn't a nurse and she should be doing oxygen related things - she wasn't an RN even. *sigh* case and point: She has a little box shaped poking thing that is simliar to what you'd use to prick your finger. She looks at it, rotates it and then finds where it is supposed to prick. So, she takes Cayleighs leg up in the air (and I put my hand on her hand, lower Cayleighs leg and gently remind her that my daughter 1. has contractures and I've noted it on the list of things about Cayleigh that my husband attached to her crib for me and 2. has dislocated hips so could she please not put her leg in the air like a gymnast - she isn't one...yet. :) So she then pokes her foot and Cayleigh had lots of blood flowing from that precious little heel. This woman then takes a tiny little sucker thing and for the life of her, bless her heart, can't seem to get the blood into the sucker thing. I must've looked at her and then her attempt and back at least fifteen times before I suggested she 'try again'. I suggest to her getting a bigger syringe. She tells me that's a good idea and within seconds she's back. She has another block poker thing and I'm not thrilled that my baby has to be poked twice because she's a dope. At any rate, she poked her heel again and again cannot manage to get the blood into the syringe. The problem is, she tells me, that there cannot be any air in the sample because it would give an innacurate idea of her blood oxygen level. well duh. So I proceed to grab the syringe out of her hand and tell her to hold the heel and apply pressure gently and steadily. she looked suprised for all of two seconds and then decided that was a good idea as I started collecting every drop of blood from her heel. Mind you - this woman spilled Cayleighs blood all over her bed linens and it was all over Cayleighs leg. *growl* I then turn the syringe upside down, flick it a few times and press the plunger upward, expelling the air, and the sample is perfect. She's super excited and tells me all about this little machine she has with her. She tells me its a mini lab and gives instant results. I stand by her and watch with her as she puts the sample in and we wait for the results. I watch and see a bunch of upward arrows and then 2 down. Down isn't good I tell myself. I look to see what the symbols next to the down are and see that one is for Potassium (thanks Professor Fig for teaching me the periodic table). The other one I dont know because it's a compound and I usually skipped first period. (lol) She tells me that Cayleighs oxygen level is really high. Then she leaves.
Ok..... so then the nurse comes in and tells me that they are going to be doing an xray soon. I tell her I want to talk to a doctor. She says ok. I lay down, ten minutes later the little irish doctor guy is there. He talks, alot (like me), and I half coherently understand him as I sway back and forth. I did catch him saying that they sent blood cultures off yesterday but those won't be back for up to a week, they also did another blood specimen (the poking lady) and that would be back today. I ask about the oxygen levels but he said he hadn't reviewed the results yet so they don't know anything. They really wanted to check her carbon dioxide levels in her blood. Often in preemies with chronic lung disease, their lungs dont get enough air and so the level of dioxide in their blood is elevated. He wants to see if that is the case with our sweet Cayleigh. He also says that if it is, she will likely be on a CPAP machine at home for nighttime. Ok I tell him, but it wont be. He confirms that yes, she must be swallowing since she doesn't have aspiration pneumonia. Tells me that the ENT wants to check her larynyx again (they'd done so at UCSF) this time to see if she had a cleft in it. He said that thought had come to him as a possible reason for the obstructive apnea. Interesting I tell him (but it wasn't). I tell him she also has a really high palette. He takes note. We'll be talking more later he says. Oh, and they are going to take a catheter to my daughter to get a urine sample so they can rule out any UTI or bladder infection because of that sudden onset of fever last night. I say ok, but its not going to stay there. He assures me that it wont. He goes on to say that while UCSF was ok with us taking Cayleigh home having a baseline (normal) of 5 or less desats during a day he wasn't comfortable with that. He tells me that he understands from the conversation he and I had on the phone last night that I didn't want her to be institutionalized but we'd have to find a happy medium. I then tell him that while I understand his concerns, they do nothing at the hospital above what we are equipped to do at home to suction her during desats and that I will be the one who decides when she is going to come home with me. I tell him that he should be aware that I will go AMA (against medical advise) should I feel that they are doing nothing for her because my daughter WONT be institutionalize. He says ok. I wasn't mean - but I certainly made my point.
So I layed down again, this time for a half hour. The nurse comes in and takes vitals, no fever. I tell her that I'd changed Cayleighs diaper after the lady stuck her foot twice because she'd pooped herself. She tells me "I would too". I laugh, so does she. My boobs tell me its time to pump so I stay up and the nurse says she'd be back in a half hour to take us to Xray because I'd mentioned to the dr that I expected to be there when the xray was done because my husband told me the first tech pulled my daughters arms up to her head and could've hurt her. That doesn't sit well with me. I also ask her for Ilex for Cayleigh's g-tube site because it was a little red on the left side again - and for mepliex to cover it. She says sure. She asks me if I have medical background and I tell her no, I'm just her mother.
I pump, then a LPN goes down with me to Xray as I hold Cayleigh and she pulls the portable oxygen. I like her, she's really nice and doesn't talk too much. Cayleigh and I sit quietly and wait for the tech to be ready. In the room I hear a tech talking to a little boys dad. Apparently he'd swallowed soemthing that was stuck in his intestines. They didn't know when it would come out or if it even could. Didn't know if it was obstructing but the kid hadn't pooped since Wednesday. That just goes to show you - if somebody offers you penny salad, don't eat it. (I really need to get some sleep)
We go in, I put on a full xray vest thing and then tell the tech I will move Cayleighs arms. We velcro her little arms and she looks at me and has tears in her eyes, and I momentarily break down and tear up a little bit - but then I wipe her tears and hold her hand and tell her its ok. I tell the tech that Cayleigh needed a cover for her lady parts. She obliges and covers her lady parts from the xray.
Seconds later, we're done. We all head upstairs and I change Cayleighs diapers again. This time the nurse comes over and asks the assistant if she can wait to change Cayleighs bedsheets until after the catheter. I was just opening my mouth when the assistant, not stopping for a second, says to the nurse that she can't have this baby sitting in sheets with blood and spille medicine on them. She tells her she will put down some absorbant pads and the nurse says ok. I
like her.
The nurse asks if I am going to stay for the procedure. I look her right in the eyes and tell her if she can't handle it that I will, but that I need coffee. The LPN assistant girl says she will help. She understands that Cayleigh has the contractures and will be gentle with her pressure to move her into a frog position for the procedure. She'd watched me moving Cayleighs arms in the xray room and saw how slow to go. I say ok and then head down to get coffee. I got downstairs and that dang place was closed until 1130. So I got Wolfgang Puck coffee out of a machine (FABULOUS) and pretzels., oh and Peanut M&Ms....aaannnd a diet coke.
I walk upstairs and I hear them laughing. No sooner did she try to stick the cathter in than Cayleigh proceeded to poop all over their hands. :) The LPN was cleaing it up and they were going to start over. A bright spotlight warmed Cayleighs little lady parts and acted as a guide to help see her little who-ha area clearly. Just then a guy across from us who is Cambodian asks for someone to take his sons temp. He's been there before us and I guess he keeps spiking temps every 12 hours. The LPN goes to do it as I tell her that I am more than able to help. The little boys temp is 103. Poor guy. Meanwhile, the nurse proceeds to apply iodine to the little area to start her attempt again. She seems to fumble around trying to 'see' where her urethra is at. I have Cayleighs legs pulled apart an after 10 seconds of her looking around I went ahead and pulled apart her little area so the nurse could find it. Geesh... I felt like I was doing the work today. Somebody put me on payroll.
Anyhow, I left at 11:30 am to head home to get the kids, its 3:17 now and I got here around 1 (lots of rain) and of course 1 Diet coke, M&Ms and 2 coffee's later I couldn't sleep. So - we're on our way back up there to take Cayleighs milk! :)
That's all for now... I'll post again when I've rested and dont sound so hostile. lol
