01/08/2024
Patty Update.
Hello my friends, keeping you all in the loop here. Read just the first two paragraphs for my short version, read on fully if you want all the details. Patty is improving. She was moved last night from a Trauma Wing at JSUMH to a Medical floor. This is good news as they have ascertained the cause of the nerve damage that had resulted in a loss of feeling and sensation in her lower legs and feet.
In short - we now have a proper diagnosis for Patty’s current issues that caused her emergency return to JSUMH one week ago. We have a game plan to work towards getting Patty hopefully walking again and expect soon to be moved back temporarily to an Acute Physical Rehabilitation Facility. We’ve also got a great team at the hospital working towards her nerve pain management as well as care through a gastroenterologist team for the bowel and bladder issues she is suffering. We are moving ahead with positive intentions and wish you to know we are on a forward path of recovery. That’s the short of it, if you wish to know all the details, read on, if not - know our appreciation for all you have done and please, at the least, jump down and read and share the last paragraph of this post. Thank you, mikey and family
The long story: The past few days several MRI’s were taken, the one of her lower spinal cord shows that she had indeed suffered a stroke in addition to (perhaps caused by) the aorta aneurysm abdominal rupture she had on Nov 10. Bottom line - this stroke resulted in damages to the sensory nerves in her spine that control from her waist down through her legs to the feet. Basically, she can feel pain (a LOT of pain) in her legs all the way down to her feet. Below the knee feeling sensation is diminished as you get down through the calves to her feet with the left foot pretty much a total loss of sensation, the right foot slightly better.
She can marginally move her lower legs, feet and toes, but does not know it. Today she was examined by Kimberly Tallia, APN from the Sea Girt Physical Medicine & Rehabilitation Associates here at JSUMH. Following that exam, as well as her studies of the MRI’s and CAT Scans and neurologist's notes, she is recommending a very intense physical rehab schedule. From a very ‘layman’s interpretation of her conversation this morning between Patty, my daughter Jodi and myself, she explained that Patty does have decent motor nerves which control the actual movement of the muscles in her legs, but the damaged sensory nerves are not sending signals back to the brain of those movements. Thus Patty, despite being able to slightly move her lower legs and feet has no sensation of that, because that fact is not relayed back up to her brain. She can look down and see the movements, but has no idea that she’s the one moving them. Hopefully, since these nerves can be rebuilt in many cases Kimberly is very optimistic that Patty can, with medication and therapy rebuild those damaged nerves to where she can regain feelings and sensation again, just how much is still questionable. But definitely this is positive news for us and we are ecstatic to say the least.
Patty is currently extremely weak in the muscles, due to lack of any therapy (merely lying motionless in a hospital bed for the past week now as well as a few prior weeks in Jodi's home with minimal therapy movement), and though she was getting part time PT at Jodi’s house prior to returning to JSUMH her rehab sessions caused so much pain she could not maintain as much therapy as she requires. We are looking at a long and difficult battle ahead. The good news is that with pain management and several medications, long term Patty could be walking again. The big question is her left foot, so we don’t know that she may be line dancing but with a lot of work and suffering through a ton of pain she should at the least be mobile again, albeit perhaps with possible assistance of a walker, etc.. Nothing is in stone, no doctor or specialist has come out specifically stating how much of a full recovery she will have, if at all, but this morning Kimberly (a physical specialist) did say she feels Patty will walk again in some fashion. We’ll take that!
At the moment Patty is also in the throes of random stomach pain and spasms of leg and foot pain (including extreme burning sensations in both feet) and acute spikes of pain in her calves. This is all related to the nerve damage and hopefully can be, if not completely eliminated down the road, at least managed to a tolerance level with medications. Both Lyrica and Gabapentin medications are currently being administered 3 times a day to Patty. These meds work in the brain to relieve pain for certain conditions in the nervous system such as she is enduring. She has a great neurologist team working on her behalf searching for solutions to these issues.
Complicated also with this nerve damage is the loss of ability to control her bowels and bladder. To be ‘delicate’, she cannot control when or how much she can pass on her own - it just happens. She is under the care of a GI (gastroenterologist) who's team is working towards regaining that ability. Like the leg nerve damage, Patty’s brain needs to be taught again how to communicate back and forth with these damaged nerves that control her organs (and leg/feet muscles) on relaying their activities back to the brain. Again, this will come through long and extensive amounts of therapy and medications.
So yes, Patty is in it for the long haul. We have no calendar of completion nor the extent thereof, just the optimistic intent to move forward with a positive attitude and work as hard as possible. The phrase ‘no pain no gain’ comes into play here with a vengeance! We (Patty, Jodi, Liam and I) are tired, to the point of exhaustion. We’ve had minimal sleep across the last couple of months, going days at times sleepless. We are mentally and physically stressed, perhaps slightly depressed but overall rising to these battles. As a family we are fighting - we will not stop until Patty is home again and mobile to whatever extent we can accept. For myself, at 73 years old I’m certainly challenged and reaching far down inside for strength I never knew I still had. For my Jodi - I give her all the credit in the world! She has been working endlessly on communications with all the doctors, specialists, patient experience team, etc. to ensure Patty is getting 100% all the attention in the hospital (including both JSUMH now as well as next the Encompass Physical Rehab Hospital) she needs. Jodi has been relentless and tireless in working for her Mom and visiting there with her as often as physically possible. This on top of caring for both toddler Holden as well as infant Everly Rose, and of course - her devoted husband Liam. She has been a mountain of positive strength and endurance and we are so blessed to have her!
Thank you all for your continued support - I still read all your comments, prayers, concerns and contributions. I’ve tried my best in the few spare minutes I steal somehow each day to respond and offer thanks the best I can to all of you. If I missed any please accept my apology, there are so many of you and we are so astoundingly grateful to all! Often I thank you with a short phrase or so, sometimes merely a ❤ when time is short, simply so that you know I'm aware of your heartfelt intentions and am therefore so grateful. So yes, to all of you - Thank You!
Also I’m sorry for the late update - my time has been spent pretty much bedside with Patty the last week other than stealing a few sleep hours and some very minimal time at my custom wood shop. More as it happens in the weeks ahead, thanks again - so extremely grateful to all of you!
Be happy, be safe, be loved. mikey and family
Please also continue sharing the following link for the GoFundMe arranged for Jodi aiding her in the prodigious support she has and will continue giving her Mom. She has mostly forgone working on the new company she started up a few months ago, sacrificing her time and income developing that firm while letting her incredible partner in that up and rising firm who is carrying her weight as she dedicates time to both family and her Mom. Giving up a normal family life as she has taken on the caring of Patty in her home is the most unselfish gesture a family member can ever make, especially given she now has the addition of a newborn infant to care for as well. She definitely needs all the assistance she can get as we begin mounting an extremely extensive schedule of both medical and physical rehabilitation for Patty once she gets released from JSUMH (date unknown at this time). Thank you!
Please Share: https://www.gofundme.com/f/patricia-nana-lubrich?utm_campaign=p_cp%20share-sheet&utm_medium=copy_link_all&utm_source=customer&fbclid=IwAR0bV4BK_CUKVx5EaXK8WOjrxjSfkfk-gHutZWS44BEJujh6NBIp6yP7RtU
