Thanks for the positive energy and prayers for a speedy recovery.
9:40 PM: All in all, a much better day than yesterday. Madison continues to be mobile, spending zero time in bed. The challenge with the excessive mucus that prompted a visit to the ER last night seems to be at bay.
Thanks for the positive energy and prayers for a speedy recovery.
4:00 AM: The chest x-ray was clear, no pneumonia. Blood tested good, and the doctor opted not to give and nebulizer treatment. Madi's had a couple of bags of fluids and will be discharged ~4 AM.
11:00 PM update: As mentioned, the surgeries were not insignificant. One of the effects of an invasive surgery can be excessive mucus, which our bodies create when it's trying to protect itself. Sleep was highly evasive on Thursday night as Madison had a lot of mucus which she manually suctions out with a machine. When horizontal, mucus seems very much excessive but when she is vertical, it seems significantly less. Tonight it was much worse.
We called our providers 24 hour nurse and based upon answering their questions, the nurse recommended going to ER (since urgent care isn't available nights). We're here now and suspect all of the activity has dehydrated her to some extent.
Next steps: Chest x-ray, blood tests and perhaps a nebulizer treatment (medicine with a humidifier), and she's already receiving fluids.
6:00 PM: Madison's home, discharged directly from ICU.
Next Steps: Healing, increasing mobility, increasing the strength of her hand, Tube feeding, IV antibiotics through the PIC line while her throat heels, sleeping in her own bed, cuddling with dogs that adore her and ignoring cats that pretend to ignore her.
5:30 PM: Apologies for the late post, it's been a very busy day. Part of the preparation for being discharged is learning how to give/take oral meds to someone who can't swallow, pushing liquid food through the feeding tube, and giving IV meds through the PIC line. The nurse was mostly hands off today, so it was a 'you-do-it' approach hence a very busy day. Makes sense... when Madi's discharged, the nurse obviously won't be at home.
Next steps: The ENT doctor will need to remove a Doppler monitor sensor. IF that can happen and all the other discharge stars are in alignment, Madison may go home tonight!
12:00 PM: Madison and her mom had a relatively uneventful night. This morning Madi spent most of the time sitting in her chair. A PIC line was put in just before lunch, which is how she'll be able to receive IV antibiotics at home, which will be 6 weeks.
8:00 PM: Doctors downsized her trach which gave Madison her voice back! It's light, raspy, and hers!!! They also removed her cast, so were two significant milestones! Doctors also installed a PIC line for home IV
Next steps: She'll be moved from ICU to a normal room in the next day or two, which is one more step closer to the door... She may be released as early as Wednesday.
On another note: When Madi had surgery here at Kaiser Sunset in 2013 she had great nurses, two in particular stand out in our hearts... Jo and Evelyn. I remember Madi feeling so grubby, caged, and tethered by IVs to a hospital bed in ICU. Both Evelyn and Jo were so kind and we'll never forget them. I remember very fondly a motherly nurse Jo patiently washing and grooming Madison, even washing and brushing her hair. Besides being an excellent nurse, she provided sincere care for her patients.
Madison's nurse today was Jo. Both Madi and I instantly remembered her but Jo looked like she was drawing a blank. Madi had long straight blond hair in 2013. Madi wrote on the dry erase board "show her a pic of me then", which I did. Jo LIT up... she clearly remembers Madi and Madi very fondly, Jo :-)
7:30 AM: All things considered, another decent night sleep for Madison and her mom. Another milestone, drain 3 of 3 was removed, one less thing tethering her to the bed! Her IV tree has only one slow drip bottle of Tylenol. There will be a couple more bags later when it's time for antibiotics, but less vs. more bags on the IV tree is a very happy thing. She's still being (feeding tube) fed fours times a day, and seems to be tolerating that well. Pain seems to be in check too.
8:00 PM: More of the same the remainder of the day, but a much longer walk today than yesterday. She's still quite swollen but it looks better each day, and smiles come easier.
Next steps: The plan is to remove the cast on her arm (donor tissue site). The goals are spending more time in the chair and on her feet, and they're suggesting she may be out of ICU and moved to a regular hospital room Monday or Tuesday, which is a mixed blessing. ICU is a very noisy environment, but the nurse to patient is 1:1 or 1:2. In a regular room she's have to share her nurse with other patients but it'll be much quieter.
| Over the weekend Madi spent about 8 hours in a chair and took three walks, each longer than the last. Consistent with her other surgeries, the pattern is sitting on the bed, heart-rate is good. As she walks, it slowly creeps up. By the time she gets back to the room, her heart is revving like a sewing machine. Progressive mobility, more each day. When asked if she wanted to go for a walk or sit in the chair, she wrote on her white board "I need to".
Get 'er done.
11:30 AM: It was a fairly decent night of sleep for Madison and her mom, considering ICU is very noise all the time, they were able to get good blocks of sleep. Another milestone... drain (with bulb) 2 of 3 was removed last night. 3 of 3 will likely come out Sunday. She was up in the chair again this AM, and on her feet twice to use the lavatory. A few small steps for Madi, giant leaps recovery time.
Next Steps: staying out of bed as much as she can tolerate. Recovery time from hospitalization is typically a week for each day of being incarcerated. The more she can treat it like a hotel/resort with 24 hour room service from her chair and up for walks, the quicker she'll bust out, and the easier it'll be at home.
Touched to our cores, thank you for the outpouring of love and positive energy.
The letters, drawings, and pics sent down to the hospital make for great room decorations, below.
6:30 AM: Madison was awake upon dads arrival. The night nurse mentioned that Mom and Madi worked hard last night on sitting her up, then her sitting up and doing mild leg exercises... progressive mobility, each day more than the day before. Her face is still extremely swollen but she appears to have better color this morning that last night. She's not yet been out of bed but we suspect that's coming today. She has hoses and drain bulbs in her neck, arm, and leg so assuming one, two, or all come out will influence moving to a chair. Feeding tube food started yesterday and she's tolerating that well.
10:30 AM: As per usual the doctors came through. The drain in her arm was removed, two remaining and each is milestone albeit a small one.
6:15 PM: Day 3, rounding the bend. There were a few small milestones today. A couple of IV bags removed, but unfortunately a couple of bags added.
Looking back, Madison had a hole in her throat immediately in front of the plate and vertebra. We were worried about infection, what happens to any food or beverage that might leak through the hole? Madison was placed on antibiotics weeks ago but unfortunately while that seemed to address the soft tissue infection, it's not effective for a bone infection which requires IV strength antibiotics. Madison does have a bone/fungal infection and will require six weeks of antibiotics. That does not mean she has to stay in the hospital that long, but we'll be sent home with bags of antibiotics and an IV tree to continue from home.
Day was day today and night shall be night. Madison is getting back in to that rhythm with the light up and drapes open all day. She was up pretty much the hole day, which included sitting in a chair for two hours. That's great for recovery!
Next Steps: Madi started with a feeding tube trickle to ensure she can tolerate it. Tonight she'll have a liquid dinner, a can of g-tube juice as a meal, getting the body used to have meals morning, noon, and night. For desert, the same. Her face is extremely swollen as one could expect from such an intrusive surgery, so hopefully the chipmunk cheeks will become gradually smaller.
6:45 AM: Madison and her mom are sleeping, so I'm sitting in a waiting room to let them both sleep. I spoke with the night nurse: Their night was consistent with having had major surgeries the day before, with an ongoing quest to find that perfect blend of meds while sustaining minimum levels of heart-rate, reparation, etc.
Next step: Potentially unhooking the assistance breathing contraption with naps and more naps for Madi.
1:00 PM: Getting closer to that balance, not quite there. The ventilation machine was disconnected and when awake, Madi was breathing easily on her own. When she would doze off, she would stop breathing for a very short bit, setting off alarms. Rinse and repeat. And repeat. Becoming completely sleep deprived, they put her back on the ventilator about noon and goosed her with the high octane pain meds so she can take a nice long nap.
Next step: Post nap, remove the ventilator finding the balance of pain management and breathing unassisted while sleeping.
6:10 PM: A much better balance, we're really close to that fine line. She's off the ventilator, and can nap without setting off the alarms! Wooo Hoooo!
Next steps: hibernate some more, have her sitting in a chair Friday.
Going on record: The nurses here are awesome, all nurses are. They are highly skilled caregivers and have remarkable influence with the doctors. Having had spent so much time in hospitals, we've learned that first hand. Another thing they like, "hey waitress", just light flight attendants... try that some time and let us know how that works out. ;-)