"Thanksgiving is coming, We have been blessed"

Sunday, November 15, 2009
0448 AM

Good morning everyone. As I promised, I am trying to be a little more regular with progress reports on Dar.

Yesterday Dar was in a fantastic mood. Her mom, dad, sister and brother in law arrived just prior to my arrival at the hospital. Diane and Roger had stopped by briefly on Friday to see Dar for a moment before retiring to their motel.

Dar’s attendants had dressed her and Jesse was getting Dar in her chair when we all arrived.

We strolled out to the front lobby and everyone visited with Dar. Stories were shared and laughter abounded as Dar recounted in her mind many stories of childhood, marriage to a goof ball like me and thoughts of going home to her own house and surroundings.

We took a tour of the facility and ended up in the dining hall. Roger found a piano and began a concert in Dar’s honor. The room is very large and without acoustics, Roger’s attempts to play quietly failed and his sonnets could be heard throughout the facility. Dar sat in her chair in quiet contemplation of the “tunes” Roger played. With a perfect grin on her face, a gleam in her eyes it was clear she very much enjoyed Roger’s recital.

Dar’s dad found an area of the dining room devoted to jig saw puzzles so we lost him for a while during the concert.

Dar had been in her chair since about 9:30 and about 12:15 she began to show signs of being uncomfortable, so off to bed we went. I put her back in bed and removed her hand splints for an hour and all was good in her life again.

Dar’s family went to have a bite to eat and returned just as Dr. Park arrived to check in on Dar.

He asked me if Dar had received her Botox injections in her arms on Friday. I told him that Jamiesue had texted me about 3:30 Friday and informed me that she had indeed received them. When I arrived on Friday Jamiesue also told me that there is discussion about Botox for her legs, Dr Park added that there may also be injections for the feet and toes before Dar comes home. It will be 10-14 days before we see marked improvement in the arms. When we do, the injections should last about 4 months.

Dr Park calibrated Dar’s pump to 390mics/24 hours, she had been at 370 on Friday morning.

It is comforting to me as a loved one and caregiver to see Dar in so much less pain. The pump has been such a great asset to Dar’s recovery. Although it is not a perfect fix, nor is it a fix that reduces/relieves the “tone” issues 100% of the time, it is providing Dar a level of comfort that allows her to focus on healing in other areas 100% of the time.

I knew that we might not see the “robust” rewards to her upper extremities as we do to her lower, it is very obvious that Dar is in much less pain and discomfort in her arms, neck, hands and fingers. With the Botox injections to her arms I pray that Dar will see additional relief, especially in her hands and little fingers. They are better but there is still much room for improvement.

During conversation with Dr Filbrandt on Wednesday, he talked about possible weaning of the trach. Botox was also lightly discussed for muscle relief in the area of her vocal cords. This might allow Dar to use her vocal cords better thusly allowing her to speak better and more often. A very short test of Dar’s breathing will show if there has been any improvement to her “vocal cord spastisity”. By putting a O2 saturation monitor on Dar’s finger and simply capping her trach will show if there has been improvement. If prior to “capping” Dar’s “sats” are in the upper 90’s and upon “capping” and Dar having to breath with her mouth and nose, if her oxygen saturation level falls or starts to drop, we will know that her vocal cords are not opening as they should to allow her enough air to her lungs. If this were to happen as it has in the past, we would know that “trach removal” would not be a good idea. I pray there has been improvement.

Another positive note is this. We have successfully got Dar on a feeding schedule and med schedule that has all meds be given only once a day. Dar will receive her meds at 10:00 in the morning. As I told you yesterday we have eliminated 3 of her meds that were given at various times of the day. This is an exciting accomplishment.

I shared with you yesterday of my dear friends Linda and Les Rominger. Linda called yesterday about 10:00 in the morning to let me know that they had made it to Phoenix and had loaded the Trixie lift and were headed home, back to Vegas. Needless to say I was a little shocked when I heard this news, only because I though that they would call to ask questions and maybe ask for a lesson in how it worked. When I asked if the lift was all that I had hoped for, Linda said that it was “perfect” and in “pristine” condition. Laura, the seller was charging the battery pack and Les was able to work the lift enough to know that it was in perfect working order.

We will pick up the lift during the Thanksgiving holidays as Linda and Les will be returning home to Bangor to be with family for the holidays.

Again to Ms. Laura, I/we so appreciate this lift and thank you so much that we were able to purchase this from you. May God bless you and your family this holiday season. Darlene, Jamiesue and I wish you much joy and peace this holiday season.

It is now 5:45am, time to get showered and ready to return to see Dar, I hope that Dar and her family had a good continuing visit yesterday after I returned home. I could tell that they were very happy to see Dar in great spirits and happy to be closer to home and family. In the time that we were all together yesterday, Dar was “spot on” and it was nice for me to see the joy and happiness in her family.

Dar and I thank you all again for your prayers and support, as we get closer to the holidays, it is our prayer to all of you that you have a wonderful and joyous time with friends and family. For those with loved ones serving in our Armed Forces, we thank you and ask for special blessings for you and your family.

For those that might find themselves in situations similar to that of the Murphy’s, Spitzer’s, Reimer’s, the Farris’s family, the Stewart’s and us, we wish and pray for all of you a very special blessing from God. We love you all,

Dar/Danny/Jamiesue