Hospital Visit 4 play by Play – Day 1

Oct 26, 2011 12:43 PM
Since many of you tell me that you like getting a sense of what we are experiencing, I thought I would do this 4th hospital visit as a daily “play by play” from start to finish of a “typical” one of our chemo hospitalizations. May seem filled with minutiae or mundane but thought I would give it to you just the way our days go.

Monday Night before — pack our bags and bedding. Toys, movies, clothes, diapers, paper plates, soups, utensils, etc. 3 suitcases total – our leanest trip yet (I know crazy right?!).

Tuesday October 25
Awoke today at 6:15 – slipped some numbing cream on Lenox while she was asleep and covered with Press and Seal (our version of “generic”). Running a few minutes late for our 7:30 appt. We park at the hospital and walk over to the clinic, arriving at the clinic at 7:40 am. All 3 of us get “bracelets” (ID bands) since we are being admitted. In waiting room for about 15 minutes – they call us back and in the ante room, they check Lenox’s vitals (blood pressure and temp) and weight. We are taken back to room 11 which is the Runtex Room. Every room at the clinic has a theme or sponsor. The Runtex room has life size wall mural of kids running.

Getting her port accessed is the worst part for Lenox and we have told her she could have 2 gifts if access goes smoothly. As pre-planned with the nurse Karen (per Lenox she is Doctor Karen) we hold her down and Quickly access her port – no negotiations or stall tactics. Lenox is distressed and fought it but it went far more quickly at least. Good access and got blood from the port quickly. She remains accessed. We Wait… Results back. Good counts 1850 ANC so a go for day surgery. We have never had to postpone for low counts but it is not uncommon we are told.

Karen checks Lenox’s bracelet before med disbursement and then gives Zofran (anti-Nausea med). Follows with a saline push. Lenox is very sensitive to the saline and can taste it as it goes through her port. Imagine your mouth suddenly tasting like ocean water. She gets a lollypop to suck on to counter the salty mouth. She is only supposed to lick the lollipop since she is going under anesthesia. Lenox eats the lollipop – oops. But she grins. This has the potential to delay the Procedure but thankfully it doesn’t. We Wait… We get a Visit from Dr. Wells (our oncologist is out today). Lenox grunts at him. He listens to tummy, heart, lungs, and checks ears, nose, throat. We Go over her current meds with him and confirm what is to be done while under anesthesia. We remind him about needing pentamidine after admission and the flu shot while under. We Wait….

At 9:30 we are taken over to the hospital. Lenox rides in our stroller. We go through a tunnel that connects the clinic to the hospital. It’s neat and we have fun making loud noises – there is a great echo down there. We are taken to PANDA – PANDA is Pre Operative Admission Nursing Discharge. Still nothing to eat for her or us. We are all Hungry and thirsty. But good spirits. Lenox is being a super love bug kissing and hugging and giggling. We are In room 17 – like all the pre-op prep rooms down here it is a smallish 8 x 8 room with no bed just few chairs, TV and rolling computer. Our medical chart (a 3 ring binder) follows us everywhere. We are told we are number 2 in line for surgery – Awesome. Lenox is now in her gown and watching Angelina on the dvd player. Nurse 1 enters – again vitals, heart rate, basic info, etc. Checks bracelet. Goes over meds again. Lenox is pleasant and says the pulse checker is like a band aid. Nurse asks if we are going home after – no, we clarify that we are being admitted. Wait…anesthesiologist comes in. Checks meds again, asks few questions, we remind her that Lenox should get her flu shot while under. She Leaves. A Child life worker comes in. Asks if we Need anything – no. She Leaves. Waiting. 10:20. Lenox hasn’t eaten since 8:30 pm night before. Nurse comes in for us to Sign consent forms. Wait.

11:15: 3 gowned med staff appear and it’s time to go suddenly. Lenox says she wants to walk, but she gets spooked by them and cries. Lala holds her as we walk into the procedure room and holds her as they give her IV anesthesia. She totally Knocks out in Liz’s arms.We leave and go Into the waiting room at 11:20. I run to cafeteria to grab us coffee and tea and snacks while Liz waits in the surgery waiting room. Dr comes by our seats in the waiting room at 12:00 to let us know that it went fine – she got her flu shot while under and the intrathecal lumbar puncture (this was chemo into her spine ). She Still is not up yet – they will come tell us when she is awaking. We are Called back at 12:10. The Recovery room is one big room with about 12 beds. A separate nurse is dedicated to each bed. Upon entering we Wash hands and go over to her bed. After a lumbar puncture she has to be kept inclined head down for 30 minutes; by the time we get there the 30 minute incline is done; She isn’t up yet so we sit next to her and watch her sleeping. They have removed her oxygen but she still has all the monitors, pulse rate tracker, etc. We Get our room assignment – 419. We Request saltines and popsicle so she has them as soon as she is up – she is always hungry when she comes out of anesthesia. The recovery nurse assigned to us today calls up to 4N (the oncology ward) to “transfer” Lenox’s status and info via computer and orally. She Awakens partially and is very grumpy. Around 1:00 She rides in my lap in a wheelchair up to her room. The attentive 4N nurses overwhelm her as they try to get us settled in, her vitals and her weight and height again. Her mouth tastes horrible so we try to remedy it (popsicle, gummy bears). At 1:30 Liz has headed down to get the luggage while Lenox starts to doze snuggled against me in the hospital bed. We Got her more Zofran b/c we can’t tell if her mouth “being funny” is weird taste or nausea. We wait for her first fluids. Ironically she can’t start chemo until her urine shows its “basic” enough (as opposed to acidic) meaning she is sufficiently hydrated. We Can’t test for it until she pees but b/c she had no food or drink pre-surgery this morning she is low on fluids and not needing to pee. Hence all the IV fluids. We put cotton balls in her Pull-Ups so they can extract and do the test even if she goes in her diaper. Lenox doesn’t like the cotton balls in there so we have to sneak them in.

Fluids started at 1:45. Liz is back. We call in some Jason’s delivery. Lenox Snoozing. 2:15 they start pentamidine – this is a monthly med to prevent mouth sores that is in lieu of a previous one that had tasted horrible and was 3/week. Now is 1/ month by IV. I have set up the sleeper sofa as a “Divan”. Lenox has been sleeping the whole time and Liz is resting too. I Changed her diaper (Lenox’s, not Liz’s) but there was not enough urine in the cotton balls to measure, so more waiting. Lenox woke around 5 pm and while Liz is napping, Lenox and I go down to the “cafamateria” for a quesadilla and lemonade. Cruising w her pole – it has a low handle bar so she can push it herself. Fun time – we played “I spy” in the cafeteria and she ate well. Went to the “The Tree House” the hospital’s gift shop. We have shelled out major bucks at this place since July. She pees in her diaper while out and about. Hoped it would be enough in the cotton balls to test. They gather it at 6 or so; at 6:30 pm still no word whether we met the criteria to proceed. Lenox and Liz now chilling and watching a dino BBC show on our player on the “sofa” while I lay in the hospital bed. Waiting…

Ends up the CA (clinical assistant) didn’t log the cotton balls she tested and then they had a shift change so they couldn’t try to recreate it. After much coercion and bribing (she got to open 3 presents from the Carson’s – TY!) Lenox went pee in the “hat” for the first time (which makes it truly “testable”) at 7 pm. hooray it was a PH of 8 (had to be greater than 6.5). So they just gave her zofran (anti-nausea med) in anticipation of starting the chemo. Chemo in these visits is a 24 hour IV drip of high dose methotrexate. They first do a 30 minute drip to prepare her body and then after that they hook her up to another 23 1/2 hours. While she is on the chemo and after, They will test her urine and blood the whole way along to be sure it isn’t “too” toxic and that her body is metabolizing it sufficiently. They also measure and readjust the drip rate the whole time – the exact amount of chemo has to take exactly the allotted time – no earlier and no later so they keep tweaking. Around 8:15 they came to start the first 30 minute push but they first have to confirm the line is still working – we have had problems with her port always cooperating. Ugh it didn’t work at first — but after getting Lenox to stand up and wiggle and flap her arms – tada, it worked thankfully! Otherwise it would involve messing with the “butterfly” (the external access to her port) – a Lenox nightmare. Sigh of relief – at 8:25 they started the first push. It’s 9 pm now and we are into the big chemo bag finally!

Lenox also daily at home takes a chemo drug called mercaptopurine (6-MP). It has to be at night and has to be at least 2 hrs after any food or dairy. We were about to hit our 2 hour mark at 9 but Lenox asked for some soup, so clock reset to 11:30. This isn’t IV but one we mix and have to get her to drink. Lenox picks to sleep with me in the bed – love it! About 10 minutes later she says no she wants to sleep on the divan with LaLa. Doh – cheated! They stay up playing until 11:30. Brilliant Lenox does a puzzle for 5 and up. Around 11:30 her IV beeps — air in line. Get nurse — she fixes. I mix her 6-MP with OJ and it takes us until 12:15 am to get her to take it b/c the juice is a different brand and tastes “wrong”. We Leverage her still being up by having her potty in the hat, get her midnight-ish round of vitals done by the CA and the nurse checks her blood return again (they do this off/on during chemo to make sure line is working well.) Got blood, but she spits during this b/c saline tastes bad so got extra zofran. She has me Lay down on the divan/sleeper sofa with her around 12:40 am. We sleep til we have another zofran push at 4 am – also I change her diaper.
The Lulling rhythmic metronome of the IV pump and white noise of the centralized air handler compete with cries, bangs, and nurses dialogue nearby. Lenox sleeps like a rock these chemo nights as though her body just settles her into a deep protective sleep while it takes this big hit.

At 7 am, another diaper change and at 7:30 there is air in line. I call the nurse and she fixes it.
End of day 1 (1st 24 hrs)