Tick...
Tick...
We’re in a holding pattern where days and nights meld into a daze of timelessness. Lauren continues to get fevers and her nurses continue to take culture labs, which continue to come back negative. Drs. Paul and Dave, orthopedic residents, came to visit us yesterday. One of Lauren’s drains was pulled, but she still has one. Until they nail down the source of her fevers, she’ll probably keep the second, larger wound drain. Hoping to get it out tomorrow because the damn thing catches on everything.
I’m so tired and so is Lauren, but here is a reason not to fall asleep: you might miss something important. While I was asleep yesterday, our day nurse and the hospitalist unilaterally changed Lauren's pain meds. I was not consulted, nor was I made a part of the discussion until it was a “done deal.” I was simply informed. Really. Let me say for the record: this is not our first leg surgery, not our first trip around the surgical or physical therapy block. For the first surgery, Lauren’s combined medical team--Ortho and HemOnc (Hematology/Oncology)--gave us a detailed plan of care and set us on the right track for what we might expect, including setting up a plan for pain management. But there appears to be a small pissing match between Orthopedics and HemOnc. When we’re in the hospital after a surgery, Lauren is listed only as an Ortho patient. They don’t acknowledge, for the most part, that she is a cancer patient as well, even though oncology patients heal differently and respond differently post-op. And if she didn’t HAVE cancer to begin with, she wouldn’t be having surgery. The two cannot be separated in my mind.
Bone pain is deep pain; more than one medical professional has told us this. After surgeries, Lauren is on a long acting morphine and receives it twice a day to cover the deep, constant kind of pain. In addition, she has a short acting “breakthrough” morphine for acute pain if/as needed and Ativan for muscle spasms. Our presumptive, drug-dropping duo lowered her long acting pain reliever by HALF and mentioned (offhand) that they were thinking of dropping the Ativan all together. Needless to say, Lauren woke up crying and in serious pain at 4am this morning.
This might seem like a minor issue, but Lauren’s medication list is something we have tweaked over months and months. This being her fourth surgery, the team has a good idea what works best for her. And the drugs to help with chemotherapy shouldn’t have been touched at all. In the end, what bugged me most was that the nurse and hospitalist were out of line. Seattle Children’s Hospital makes a big deal about treatment being a “team” process... and this wasn’t. Parents and patients are supposed to be part of the team.
At this point, I'm not sure what to do about her pain medication, other than complain (which I have done). When I asked why her medication was lowered, they said it was because she was sleepy during the day. It’s true, Lauren has been sleepy. Then again, she’s recovering from major surgery, is woken up at least once an hour round the clock for medications, to check vitals, when her machine alarms beep, when she’s loaded into her CPM machine, and to use the potty. Mostly I think she’s sleepy because she’s working so hard at healing herself. This effort takes every ounce of her strength. She's 2 hrs on, 2 hrs off with the CPM bending machine. Lauren made her 90 degree goal on the second day after surgery and has surpassed it to 100 degrees. When not in her CPM, she’s in her brace set to zero extension, which also hurts. She has already been up and walking with her walker, does stretches, the incentive spirometer every hour for her lungs, and is using the regular potty during the day/commode for night use. Lauren is tired because she's working hard. When she has any “off” time, she’s either eating or sleeping. Another part of it might also be that she's been feverish since Weds. Not sure why, but they've drawn labs for cultures daily and gave her a lung x-ray on Sat.
I'm frustrated. The surgeon had to increase the surgical site by a good bit and Lauren is clearly hurting. And she’s back to square one with physical therapy. Lauren is not usually a complainer and seems to have a high tolerance for pain. While I don't want her dopey, I don't want her in a lot of pain, especially in the middle of the night. Frustrated and sad. Who wants to see a child in pain?
A friend recently took her new baby for his first vaccination. She shared that when they injected him and he started that desperate baby cry, she got teary-eyed and weak-kneed. I feel this same kind of thing. Sometimes my heart hurts so much that I think it’s actually breaking inside. As moms, I think we're hardwired to do all we can to protect our children from pain and discomfort. It must be the same for dads. And let me preempt a possible argument right here: I’m not talking about trying to shelter my kids from life’s inherent pain and suffering. To a certain degree, life’s troubles and tribulations (and yes, pain) help shape and define us. I’m talking about advocating for my child, doing what I can as a parent to mitigate unnecessary pain and suffering.
Please let me share what else I told my friend with the baby: Having loving support from friends and family makes a world of difference. It makes me feel less desperate, overwhelmed, and sad. For that and more, I thank all of you who are with us during this challenging time. You are loved and appreciated, every one of you!
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