Welp, Christmas was crazy as usual, and we spent lots of quality time at home with Pete in front of the fireplace enjoying hot chocolate and each other. Pete got photo and video updates when we would return home after family parties. He really enjoyed seeing pictures and videos of the snowball fight (partly indoor) and the percussion jam sesh at uncle David's and photos with the Russell's. I think the craziness of the events replayed by us made him feel better about not having made it to the parties! Pete (and all of us) loved having Charlie in town as one of Pete's life-long friends (family).
(Some pictures above of Brenna's birthday kiss and some recent visitors- thank you again to all for your continued support and love.)
Yesterday (Thursday), Pete had some good visits from family and friends. He was at one point feeling well enough to make a few jokes and smile. He has had increasing pain as of the past few days and it is getting more difficult to control. His spirits have fluctuated depending on the pain and of course Pete somehow continues to impress us with his sharp wits, memory, interactivity , and wisdom, despite all of the increasing medications. His nurses and doctors continue to be very attentive with daily visits and they stay as long as they need to adjusting medications and trying to tend to any of his needs.
Last night the pain was unbearable and did not allow Pete to get much sleep. The nurses came this morning and increased the IV pain pump basal rate as well as the "as needed" boluses. This morning he required lots of meds to get comfortable, we are trying to hit the symptoms and pain from every angle and at times this compromises his sharp mind and his ability to stay awake, alert, and conversive, which we know is one of the hardest parts for Pete. The delicate balance of reaching adequate pain control while trying to maintain his alert mental status has been growing more difficult by the day.
At this time, 2pm , he is sleeping and seems comfortable. We are watching him carefully and tending to his needs, waiting till he wakes up to reassess symptoms, and if needed redose pain meds until comfortable, which may mean sleeping again.
Jane has impressed all of us with her positivity, support, and strength. It's sometimes hard to remember how difficult all of this is for her while Pete gets all the attention. The family has all agreed that we have seldom, if ever, met anyone as loving, strong, and positive as our mom. It really cannot be put into words. In addition to all of her daily duties, she has taken on the role of a nurse, doctor, social worker, pharmacist, and medical technician, and performs all of these flawlessly and gracefully with a smile, as though she has been trained for years.
The team at Froedtert tells us they have been referring to him as "Miracle Man" given the complexity of his case, his strong will, uncrushable spirits and positivity, and his unrelenting will to survive every obstacle for the past 10 years.
Please keep Pete and Jane in your prayers. We will continue to update, please check back frequently.
