Saturday, October 27, 2012

Amazing Little Girl

Last week I expressed my worries and concerns about Brinley having her port removed. I'm happy to report that the removal went really well. We first met with her oncologist on Monday to do some pre-op lab work, and have her dose of chemo, it was also the last time she would have her port accessed. Her blood counts were good, she did take a hit in the ANC dept, but it was a good one, she went from 3900 to 1600...which is right where we want her. Tuesday morning came quickly, this time it was a family affair, all 4 of us climbed into the car and took the hour drive into phoenix. We filled out some paperwork, changed Brinley into hospital scrubs and let her play a little bit with her brother.
Good bye friend.
Big brother always supportive

Once they had given us the 10 min warning, we sat in the pre-op room waiting. Brinley was anxious, she wanted to have the port out and be done with it...based on her excitement  I also wonder if she's getting addicted to the propofol. (kind of kidding...) Finally the nurse came in and administered a syringe of versed. She has never had the drug, and after they gave it to her, they informed me that it was to reduce anxiety, and give her retrograde amnesia.  I asked why they would want her that dopey, and they told me it was to forget the surgery. I wished they would have spoken to me before giving this to her, Brinley has never had an issue going under, actually she looks forward to it. Little did I know what a picnic this drug would turn our evening into. After wheeling her into the surgical room, me in my lovely white "bunny suit" (white sterile suit) they put the gas mask on her and away she went. She was giggling and thrashing about as she fell asleep, mumbling about Tinkerbell  At least she was giggling and not screaming. After about an hour, Brinley's surgeon came into the waiting room to tell us everything went well, she had her port removed, her lumbar puncture with chemo, and a flu shot. Only one of us is allowed to go back, and Blake can read my anxiety like a book, so he volunteers to stay behind with Carter. Once I see her I feel 100 times better, she's still asleep, trying desperately to wake up, but she's ok. I take my designated spot beside her, holding her hand, trying to coax her to open her eyes. I make small talk with the nurse, and once again I find myself apologizing for taking photos. I just want to document everything she's been through, so when she's older she can look back and witness her triumphs.

5, 10, 15 minutes go by, and finally Brinley opens her big brown eyes. This is where it gets "fun". The look on her face is pure confusion, and anger. She's angry because we didn't have her port removed, and she's confused, and doesn't know where she is. She keeps asking when she will have her sleep, and I remind her that she did have her port removed. Eventually I just put the sterilized port in her hand, so every time she accuses me of not taking her to her surgery, I just point to her hand. This is what they call retrograde amnesia. I feel bad for her, the look on her face is pathetic and sad, she's seriously angry with me every 10 mins. After she eats her pineapple/strawberries (the one thing she requested wanted to eat when she woke up) we are cleared to leave. Once we're all loaded into the car, Brinley wants her pineapple and strawberry we go again. The hour ride back home is spent reminding her that she's eaten it all, and her crying thinking we cheated her (why I didn't keep the empty container is beyond me.)      

Once we get her home and comfortable  it doesn't take her long before she wants to climb into bed. We oblige her, give her a dose of pain killers and tuck her in. A little while later I notice her bandage is soaked with blood and it's all over her pajama shirt. After a quick chat with her surgeon, I apply pressure to stop the bleeding, change her bandage, and with a little luck we wont have to go into the hospital. The next morning she complains a bit from the pain, but another dose of lortab seems to work ok for a couple of hours. Around 10am she starts wiggling around saying her hips hurt. She can't have anymore lortab, so I call our nurse, Kate. She tells me to give Brinley a dose of oxycodon, and see if that helps. It works for about an hour, and once again her pain is elevated. Kate tells me to give her the other half of her oxycodon pill and if that doesn't work call her, and we'll talk about giving her morphine. I finally get her settled in and relaxing on the couch, we share a pillow and snuggle up together, waiting for these painkillers to kick in. After an hour goes by Brinley starts crying, telling me her back and hips hurt, watching her walk is sad, she's limping and hunched over. Once again I call Kate, and she tells me I need to bring her into the clinic, they can manage her pain better with an IV drip. I assemble what I believe is everything I need for a quick trip. As I'm rushing out the door, Brinley can't walk, and she wants me to carry her. Hello flashbacks! It feels like the same drama we went through in November of 2010, my rushing out the door with my baby girl in my arms. I keep telling myself, "her counts are ok, her counts are great".

On the way in Brinley switches on and off between screaming and crying, this is the worse for a mom, not being able to fix it. I finally get her to the clinic and we're rushed to a room, Kate has everything prepped for Brinley's first IV since 2010. We both agree, this is NOT how we wanted the first one to go, but it must be done, she quickly assures Brinley she will be ultra gentle, and j-tip's her arm, shortly after the IV is in. Brinley was a champ...could have been because she was drugged, but nevertheless, she never ceases to amaze me. Once her pump is in place, they give her a dose of morphine, and put her in the back, cozy with warm blankets and a personal dvd player. She's a happy camper...for 30 mins.
Shortly after the pain returns, and it's a 10. She's wiggling and crying out, doing every and anything just to get comfortable and make it stop. She now has to use the washroom, I offer to carry her, but she refuses, watching her get up to walk is heartbreaking. She's on her tippy toes, bent at 90 degrees at the hip, she's wobbly, like a baby horse walking for the first time. Again, Kate administers another dose of morphine and it holds her off for 15 minutes. At this point she's screaming and sobbing. I can say, without a doubt, I have never seen Brinley in this much pain. 
At last her doctor comes in and tells me that she needs to be admitted for an MRI, the clinic can no longer manage her pain. The sucker punch comes when they tell me that she HAS to go via ambulance, her pain is too bad for them to let me drive her, and consider it safe. I can't leave my car at the clinic, so I can't even go with her, instead I am left following. This is insanely hard, I go to my car by myself, call Blake and continue to ugly cry over the phone to him. It kills me that she's in so much pain, and I can't hold her, I can't be there with her rub her head while she's strapped to the gurney and rushed to the hospital. I feel absolutely helpless. I rush into the hospital admitting department, have them burn through the paperwork, and run to her room on the 7th floor. She's sitting there, high as a kite, telling me what fun she had in the ambulance, and now nice the man was, again, this child is amazing, not even a little upset mommy couldn't come. We're told her MRI is tomorrow, and we get settled in for a long night. Brinley does ok, her pain is masked by a few IV injections, and she falls asleep until 2am, in which she awakens and tells me she wants to play. Poor kiddo, mommy wants to sleep. I allow her to watch tv quietly, and at 4 I hear her turn it off and go back to sleep. 6am comes fast, and Brinley is desperate to hit up the playroom. The bad news is that it doesn't open until 9:30, the worse news is that she can't eat or drink anything...but the good news is that we're not hospitalized based on low blood counts, so she can venture around the 3rd floor with me, and help me do laundry (her pajamas), and we can get coffee at the parents lounge on the 7th floor. Finally after begging and pleading, 9:30 arrives and we quickly we're off to the playroom. After an hour or so, we get a visit from Auntie Bear, and baby Kennedy, Brinley is trilled, she loves her Auntie. She also gets a very special pony, which is fantastic, since we don't have anything from home, this can occupy her. Eventually  after not eating since 10am the previous morning, she is hungry....SUPER hungry...and she can't eat. This goes on until 2pm, when they finally tell us that MRI has called and they're sending for her. Just as we're getting ready to go, a fantastic donation from Go 4 The Goal comes in and presents Brinley with her very own iPad. It's amazing to see your baby smile after hours and hours of crying.

Off to MRI we go, they are ready for her, and there is no wait. Brinley again is VERY excited about her sleep, I'm insisting it's because she knows she can eat after it's over. She's allowed to administer her own anesthetic, which she loved you can see. Have I already said how amazing she is?

MRI is over after 45 mins, and we're back in her room ordering her dinner...3 tacos with fresh tomatoes  and a bowl of pineapple. We didn't have to wait long before our nurse tells us that we'll be going home, and the doctor was doing up the discharge papers. Great news! But what was on the MRI?  About an hour later, the doctor comes in and tells us that her MRI showed that during her lumbar puncture, they had actually "nicked her bone" and that she was leaking spinal fluid. Nothing can be done about it, but giving her ibuprofen will help tremendously with the swelling her in back. We're free to go home and let her rest, and that she will be sore on and off for 2-3 weeks.   So now we're home, keeping a low profile, and having Brinley rest up. She is determined to go back to school on Monday  so I'll send her in with some pain medicine and keep my fingers crossed that she will be ok.  It's been a very long emotional week, but I'm glad to be home, and glad that this was the last lumbar puncture of 2012.

1 comment:

  1. What a nightmare you have endured, poor Brinley, poor Morgan. I do hope Brin is now feeling better. She certainly looked (Skype) as if she was doing
    well on Wednesday eating her fresh pineapple. Let us all hope that it will be easier from now on.

    Take good care, and as we knuckle down to snow, wind and minus 13 with the wind chill tonight, you are enjoying some good and warm weather.
    Love and hugs, Auntie Pauline