Tuesday, January 28, 2020
What a day! Forty-eight hours ago, my girl lay practically lifeless in a PICU bed connected to every machine available. Her breathing was dependent on a mask that covered her whole face and kept me from giving her a million kisses a minute.
After another very restful night, Marjorie woke up excited daddy brought her a bow from home. She was eager to get out of bed and color and do a puzzle on daddy’s lap!
Then our friends from PT came in. It never occurred to me the toll this illness would take on her small body. She is weak beyond belief and it is painful to watch.
Marjorie is able to slide off the bed and stand with assistance. She slowly walked (with support) the few steps to the window and colored on it with markers, which she thought was SO funny.
Next, they had her stand and bend to pick up bean bags and toss them in the bucket. She was wearing down, but determined to bend down as they asked. And she did!
After rounds, the team decided to take the jump and move her to a high-flow nasal cannula. We made the switch and my girl never looked back. Her oxygen levels and respiratory rate remained stable and I covered her in a million kisses!
We spent the rest of the day playing with her dolls and the toys she has received in her stay. I knew my Marjorie was back when she sat in the chair directing me where to put each and every doll and stuffed animal – finger pointing and all!
We had a visit from an occupational therapist this afternoon too. She really worked on getting Marjorie to sit up straight in the chair so as to get her trunk stronger. She has tended to slump and lean when sitting and even in bed. But after a few tries she started to get the hang of it.
Marjorie has to be reminded to move her arm with the PICC in it. She is scared of it and we can’t have her continue with limited mobility. So we are working hard to get her to raise her arm and use it.
All in all, it was a wonderful day. With the high flo cannula, she can start trying sips of water when we wean it down to 6 liters, which should be tonight.
Marjorie has already planned her menu for when she can start eating:
“sushi, turkey sandwich, black beans and avocado, of course”
She has been talking all day long and I could not be happier. As I type this tonight, she is snuggled in her bed watching a movie and pointing out all the funny parts to me. I keep reminding her it is bedtime!
Our next couple of days depend on how she tolerates water and food. She still has to wean completely off oxygen and maintain good stats. She will also be able to walk around with ease.
So while today was a good day, we have a few more boxes to check. Someone once told me to take notice of those days and moments that seem to go ‘just right’.
While being in the PICU with my daughter will never be ‘right’, I am reveling in a wonderful (and tiring) day. (Marjorie literally directed me around the room all day long – that’s not easy!)
I don’t know how this started or why we are back here, but today was a good day. I’m looking at my girl snuggled and happy…so I am taking her lead and doing the same.
Finding the light today and always.
Keep the prayers coming (again). We are feeling them all!
Sunday, January 26, 2020
And here we go…again. Asking for prayers for Marjorie…again.
Same hospital. Same PICU floor. Same brave little girl fighting once again.
The past 24-hours have been a whirlwind…again.
We went from having a seemingly healthy and happy girl on Friday to riding in a speeding ambulance to Wolfson Children’s Hospital. I sit here next to my girl hooked up to machines and IVs…again.
How did this happen…again?
We went out to dinner with the kids on Friday night. They were both happy and playing outside while we waited. Jordan and I raised our wine glass and toasted as the sun set over TPC. Life felt right.
And then it wasn’t.
Marjorie woke up Saturday morning lethargic. She even put herself BACK to bed – definitely not the spunky five year old we know. Her lethargy increased throughout the day along with her breathing. She always breathes a little fast when she is sick, but this was way different.
I did what any normal cancer mom does – I worried the cancer was back and text a video to our old oncology nurse now friend ‘Two Knock’. She called me immediately and said her breathing looked off – like RSV or even pneumonia.
We didn’t wait and decided to load her up and take her to the clinic. As I drove to the clinic, I peered in my rearview mirror and told myself we would be in and out with an antibiotic. But deep down I knew something wasn’t right.
As we went to the exam room in the minute clinic, the nurse placed the oximeter on her finger and the reading was 55…a normal O2 reading is 98 to 100. I am pretty sure I watched the blood drain from the nurse’s face as he left to get the doctor. The doctor came flying in and told him to call ‘the squad’ aka the ambulance. Yes, I felt like I was on a bad episode of E.R. with his ‘squad talk’.
Marjorie and I have now taken three ambulance rides together. Our latest ambulance adventure came with the added bonus of lights flashing. I sat in the back of the speeding ambulance holding my brave girls’ hand.
She could hardly talk and eventually mustered enough strength to tell the first responders, “I’m going to Target after this.” Followed by, “I am brave!”
We spent the next five hours in a small ER room working to get her breathing stable. Shortly after midnight, we moved into the PICU. If you have followed Marjorie’s story, you might remember that Marjorie spent a week here in the PICU during her cancer battle.
The PICU days were the darkest for me. She was on a ventilator and hooked up to more machines than I could count. Much of my PTSD stemmed from my days spent watching Marjorie on a ventilator in the PICU.
When the doctor told us yesterday that we would be admitting to the PICU, my heart stopped. I felt numb and just knew I needed to push through. If we did it before, we can do it again.
But we did and we are. Night one is done. There was no sleep to be found and my shock is beginning to wear off. My heart hurts.
Monday, January 27, 2020 – 5:25pm
It has been a decent day. Marjorie seems a bit more alert and her breathing is slowly improving. Definitely grateful for steps in the right direction. She is on two major antibiotics and we just have to give them time to kick in.
This experience has been so different from the NICU and cancer journey because she is a 5-year old who can tell me what she wants. Also, seeing your spirited, dance obsessed daughter laying so still is jarring and heartbreaking.
She keeps asking to go home and for big brother. Manning asked me today when we were coming home. I did not have an answer for him. This go-round everyone is older, wiser and I can’t fake it. I can’t fix it all and make it go away.
Our main goal today was to get her out of bed and sitting up. As one might guess, her energy is zero. But we got her up, gave her a sponge bath and put new jammies on her. PT and OT came, but she was so worn out from her ‘spa’ day that she could barely keep her eyes open. Again, seeing my baby girl who skips and dances everywhere (literally she never walks) , not be able to stand is devastating.
Marjorie also received a new bipap mask last night. It looks crazy, but it is so much more comfortable. While Marjorie is tall, her frame is very petite. The smallest child’s mask did not fit and started to cause rub marks on her face. We already have scars from our vent in the PICU last go round so we opted for the weird mask and it has been wonderful.
Her first IV blew today so we removed it. Sadly, the big IV line they placed yesterday has clotted and is no longer pulling blood for blood draws. This leaves us with no option but to place a PICC line.
This will be Marjorie’s third PICC line. It is never what you want, but at least with this we won’t have to rely on IVs that can often collapse. In the next few minutes, the PICC team will arrive. I will once again sit by my girl and hold her tight as she is poked.
As for me, I have my moments. I know this too shall pass. But right now I pretty pissed. Why are we here, again? Why am I writing from my daughter’s bedside, again? Why does she have to endure pain, again? Why can’t God give it to me?
And while there is rightful anger there is gratitude. While I hate being at Wolfson’s I am so damn glad it is here. We are adding to our amazing roster of nurses and doctors. We are thankful for everyone who has taken time to call, text, email, message, etc.
If you pray, please pray. We need them, again. I just need my girl back. We need prayers of healing and for the antibiotics to start working.
Signing off as PICC team is arriving…prayers up for a safe procedure.
Quickly signing back on before my dinner arrives – where was Door Dash when I needed it in the NICU and Oncology floor?
PICC line was successfully placed. I am still shaking, but Marjorie is resting peacefully next to me. It ripped this momma’s heart out as she kept yelling, “I love you mommy!” and “I want to go home!” and “Stop touching me!”
Please God, please let the medicine begin doing its magic. We are ready to go home. I am ready for my girl back.