 As you can see in the picture, a trip to Costco for a few necessities, and another hundred bucks of stuff that are not necessities. Sound familiar?!
There was a scooter on display, so Madison decided to give it a go... yes Madison is ON the scooter... ... in the booze and fine wine section ...what could go wrong  The trach came out today, wooo hoooo, no more pipe in her throat and she describes it, no more dog collar to hold it in place.
The question of the day... can she eat turkey on Thanksgiving? The good news yes. The no-so good, only if she chews it up, spits it in to a syringe, then injects via g-tube. Consistent with other surgeries, she needs to teach her throat how to work again, and was prepared for this. This was a nig milestone today! This evening Madison was in a back bedroom giving the treadmill what-for. Her knucklehead dog Bailey thought she was in the bathroom, and hunkered down waiting for her and clinging to hope that Madi would surface from the wrong guarded door. Bonehead. Madi has had no stomach acid, no nausea since the suspect medication was substituted for another. While she has two more pills to take, she feels much better and has one less IV daily.
Hallelujah!
Another goal today was to have a swallow test performed under x-ray. An assessment would then be made whether the trach can come out. The doctor came in, gave her a bottle of water and asked Madi to take a sip. She did. \\end of swallow test, she passed and didn't need it under x-ray. She is clear to eat soft foods, but the trach cannot come out until we get a handle on the nausea.
Next stop, Woodland Hills to top off her tank (IV fluids) and we ended up having consults, then being able to switch one of the home IV meds to something equally effective, but not prone to prompting nausea. Next steps: Given the med suspected of promoting nausea and occasional vomiting will no longer be taken, assumption is she'll be infinitely more comfortable, and with only tolerable nausea if any. She hasn't been able to eat or drink for a month, there's a certain level of atrophy with her throat muscles, so it'll be baby steps to tiny bites. Ahead of that, just swallowing saliva. While you're reading for the next 30 seconds close your mouth and make an effort NOT to swallow, but let the saliva just pool. That's what Madi has been dealing with... for a month now. She just spits in to a paper cup like a redneck and chewing tobacco. It is what it is... was! Did you notice a pool in your mouth? We unconsciously swallow every 8 seconds, once every 5 minutes when we're asleep. It is amazing in fact miracles... all of the things our bodies do instinctively. Madi's allowed to swallow now... you too in fact :-) This picture is Bailey waiting for Madison to wake up.  (Posted Friday)
This is an Instagram post Madison uploaded in November 2014, the final chemo treatment last year. As you can read, Madi referenced (below the picture) last year as the "Red Devil"... it was. Given it was her final chemo treatment, she was actually looking forward being DONE :-) Ten days later she attended (amazing that she could being there) a fundraiser in Malibu for Christopher's Haven in Boston. More on that at this link. Those runners were "Team Madi". When you think of an infection on your hand for example, an indication that the antibiotic creams and concoctions are working is because you can see the effectiveness, or lack of. If the wound starts looking more like skin than strawberry jello mixed with cottage cheese, chances are the infection is going away. In a bone infection there are no visible indications. That said, there is an "ESR" component of blood tests, normal ESR is between 0 and 20. Madison's was 72 post-op week one, 62 week two, and 41 week three. Today (every Monday) the home care nurse comes to the house, checks the wounds, and takes blood for lab workups. Today post-op week four, ESR was 10. We certainly not doctors but appearances are such that the antibiotics are effective treating the bone infection. We'll check with the doctors this week to determine whether ESR is also an indication to determine if the fungal anomaly (different than the infection) is in retreat. It was a rough weekend for Madison, no sugarcoating it. Hydration seemed evasive, she had challenges with stomach acid and a bouts of nausea, but seems better today. Part of recovering from major surgeries, there will be ups and downs.  Today was a pretty decent day! During her evening walk Madi made it about 5 houses, but it was really chilly so Madison decided to head back early and give the treadmill what-for. In this picture Madi is wearing sweatpants and nurses/therapy dogs Baily and PJ decided to join her... on the treadmill. You can see the 10 second video at this link -> https://youtu.be/WC7_XqjkiPc Their level of loyalty truly is amazing. If you scroll down to the Sunday Nov 8 post, you can see in the picture that both canine caretakers are extremely clingy, extraordinary loyal and protective of her... ... as she is to them. ...until the nitwits try to eat yuck filled Kleenex, or feast on Almond Roca from the cat box. That's when the gloves come off.  This selfie was taken about a year ago, one of the last chemo rounds. Madi posted it on Instagram in November 2014.
So how's Madison today? She still has very limited strength and mobility in her left hand/arm. The Occupational Therapist came by yesterday and gave her some exercises to do. Mucus is still a challenge, less than a week ago but she's anxious to get rid of that, and rid of the trach. Her voice seems to be a tad stronger each day, and has regained 6 of the 10 pounds she lost in the hospital. The next doctor appointment is Friday Nov 20. They'll check her wounds and do a swallow test, a prereq to getting rid of the trach.  Last night Madi, Mom, and her husband Michael went to see the new James Bond Movie.
Today mom took Madi for a pedicure. Ongoing: Feeling a disturbance in the Force, the dogs are just a tad clingy... ya think?! Best naps ever! :-) Baby steps this week and last, led to a drive today... with Madison driving. Since her left hand now has enough strength to hold the steering wheel, we drove up to Coyote Park and walked around the path and for a bit, just sat on a bench and listened to nature.
An observation about the mucus... much less output, great news! Unfortunately she'll likely have the trach another 10-14 days. Consistent with both 2013 and 2014 surgeries, Madi had post operative tachycardia, a greatly increased elevation in her heart-rate. While in the hospital even for a short stroll, her heart-rate would set off the alarms, almost 180 beats per minute which is an astonishing three beats per second. Laying in the hospital bed it would drop in to the 120 range, still really high. Given the increased mobility at home, her heart-rate is slowly becoming more consistent of a 20 year old, vs. 97 year old smoker. Next steps: she'll meet with doctors in Woodland Hills Monday and Tuesday. They'll likely adjust one of the IV meds based upon a minor side effect. Madison and mom saw the doctors yesterday. Everything is progressing nicely and the doctor seemed impressed that Madi was doing well, so much so that the next schedule appointment is in two weeks. Unfortunately the trach tube will be in at least that long given the swelling in her throat is slowly subsiding.
Her left hand (donor tissue harvested from her wrist to patch her throat) is slowly increasing in mobility and strength, and the tissue 'fill' for her wrist came from her thigh, which is also healing nicely. Most importantly the flap (aka patch) in her throat looks 'perfect' per her doctor, good blood flow and color. We tease Madi that she'll be the only person on the block who has arm hair in her mouth, and leg hair on her wrist, which of course prompts the stink-eye. And finally no, she won't have hair in her throat. I don't think that's possible. Is it?! :-) |
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