Wednesday, April 14, 2010

April 14 4:30 Lisa

Ginny just texted me that they made it to Alabama. It was a long but easy trip. More later. Love, Lisa

April 14 Addendum

Forgot to mention earlier that Ginny is contemplating getting a cell phone for Joe. I was shocked to discover that Joe didn't have a cell phone. This might be an effective way for Joe ro re-connect with friends and family. On Easter Sunday, our brother, Paul, and his wife, Lisa, were gratified to be able to talk with Joe on the phone. Paul was happily shocked at the improvement in Joe's ability to track what was being said and ask logical follow-up question, including inquiring about his niece, Devon, and nephew, Nick. Another advantage of the cell phone would be an alternative way for Joe to communicatie with Ginny if he neeeds her. Goodnight ALl, Lisa

Tuesday, April 13, 2010

April 14 8 pm Lisa

Dear Family and Friends,

Praise the Lord that this is the last night of Joe sleeping in a hospital! Hooray! We are prepared for an adjustment but know that Joe will ultimately get more uninterrupted sleep in his own bed. Ginny called earlier to provide me with the latest updates for the blog. If I'm repeating myself, please forgive me. Very tired tonight.

Family Request

She has received many generous offers of help once everyone is back in Madison, but wanted me to reassure you all that for now, the family needs some time to themselves, at least until after the adjustment has been made and a routine is established. Father Phil and religious are exceptions to this as communion and prayers are always welcome. Mom and Dad Leahy staying on for awhile to help, and food and basic tasks are covered. Ginny has reassured us that she will ask for help when she needs it, and she will follow Joe's lead regarding company as well. He does seem to crave intellectual stimulation and at some point he may need to have 15 minutes here and there with his science colleagues. (I feel sorry a bit for the nurses he keeps quizzing on microbiology---how intimidating but humorous!)

Medical Support Team

Ginny also wanted me to relay more imformation about the support person UAH has hired to help Ginny. Her email message is quoted below:

My name is Mary Ann McMeans, RN, BS, CRRN, CCM with Comp1One. I have been assigned to work with you and Dr. Leahy as medical case manager. As your case manager, I will be assisting you with medical issues pertaining to Dr. Leahy’s injury. I will assist in organizing and scheduling therapies, physician appointments, etc

We are very, very grateful to UAH for Mary Ann's help. Though the family and friends got the ball rolling with regard to initial research and some appointments it would next to impossible to continue to monitor and synchronize the various doctors, therapists Joe needs to maximize his recovery.

We are very happy about Dr. Keith Anderson agreeing to be Joe's Rehab doctor; he specializes in spine and neuro rehab and is in the same practice as Dr. Tau who did Joe's initial surgery. Dr. Knoll, the oral maxillofacial surgeon will see Joe on Thursday, and we think surgery to remove the external fixator and braces will occur early next week. The original endocrinologist, Dr. Bobby Johnson, has also agreed to take Joe's case and will also see him soon. PT and OT assessments are scheduled and a speech therapist is on board. Neuro-opthamologist Dr. Cline is taking on Joe's care for his vision, and Mary Ann is determing whether a neuro-optomotrist is needed at this time. The only loose end is a neuropsychologist and clinical psychologist, or someone who is board certified in both which is ideal. We thought we found such a person but were told she can't take the case due to a conflict of interest.

Updates on Joe's Condition

Joe's button, the last vestige of the trach, is gone! He negotiated going up and down stairs and getting in and out of the van quite well. We are still awaiting the endocrinology test results to better understand the heightened levels of human growth hormone. There are other endocrinology issues as well. He is cognitively improving all the time, and is mildly complaining about being treated as a third grader, a good sign according to the neurologist. His feedng tube will remain but will hopefully be removed once he can eat solid food again.

Training and Meds

Other than a few odds and ends such as securing a blood pressure cuff and a removable shower head, which Mary Ann is working on, everything is falling into place. Ginny is quite confident of her ability to successfully manage Joe's care, especially after all the training she has received in the past couple weeks from the various therapists. Monday was an intense training day for the family, and my folks were there for most if not all of the sessions as well. (I wish I could have stayed longer but had to return to work, especially as it is the end of the semester and the students are predictably and understandably stressed.) Ginny has been particularly impressed with her Shepherd case worker, Tammy, who has doggedly tracked down the myriad doctors, gotten their prescription orders and made sure they have been filled for 30 days. This is HUGE! Everything we have all been doing is to ensure getting on the road as soon as possible after Joe is officially discharged. Mom, Dad and Ginny are currently packing up the final items in Gin's apartment and loaded everything into the two vehicles.

Prayer Requests

Ginny is wishing to coordinate surgeries to maximize Joe's recovery and minimize his distress and discomfort. Please pray that the doctors work together to do what is best for Joe. Prayers are also requested for no discharge delay and for good weather and an uneventful trip tomorrow. Thank you for your continuing support through prayers and uplifting texts, emails, blog comments and cards.

Love and Blessings to All and As Always,

Charge On!