June 27, 2010

Please join our family in celebrating  Jeff’s life.  His visitation is tomorrow, Monday, June 28 from 4pm-7pm at Washburn-McReavy Eden Prairie Chapel, 7625 Mitchell Rd.   His funeral mass will be held at 3pm on Tuesday, June 29 at the Basilica of St. Mary, Hennepin Ave. at 17th St.

June 5, 2010

Note from Anne:

Today has been stressful.  It takes a lot of energy to manage Jeff’s care because the effects of his neuromuscular disease complicate the healing process. 

All current meds and future feedings through Jeff’s feeding tube are on hold because his symptoms and  the results of an abdominal x-ray are suggestive of an ileus.  However, it is important that he starts receiving some form of nutrition so a PICC line (central line) was placed so he can receive feedings by IV.   Medication adjustments continue to be made but it has been tricky for a variety of reasons that would take too long for me to explain.  Jeff has been moved to a cardiac intermediate care unit because of the fact that he is now receiving IV valium for his muscle stiffness, spasticity and increased tone.  It is necessary to have him closely monitored for side effects of the IV valium.  Physical therapy saw Jeff today and it does seem like the valium is helping his muscle related issues to some degree.  The valium is also relieving some of his agitation.  Jeff has had a lot of pain caused by the previous spillage of bile/gall stones from his torn gallbladder and current abdominal bloating.  He has been started on a second antibiotic because he began spiking a low grade fever and one of his incisional sites has some redness forming around it.  His labs don’t look too bad but his blood cell counts, blood cultures, liver enzymes, pancreatic enzyme, electrolytes, etc. continue to be assessed.  

Please pray for strength, rest, comfort, patience and healing. 

June 4, 2010

Note from Anne:

Surgery went fairly well.  Initially there was some concern that the surgeon would not be able to remove the gallbladder laparoscopically but it was successful.  Removing Jeff’s gallbladder the old fashioned way would likely be a much more difficult recovery for him.  The surgeon told me that Jeff’s gallbladder was in bad shape.  It was inflamed and thickened and had tears in it which caused leakage of bile and gall stones into his abdominal cavity.  Consequently, he may have some added pain and will require  IV antibiotics to prevent infection.

Jeff weaned from the ventilator after surgery but remains on some oxygen.  This is a normal expectation since his respiratory muscles are fatigued from the medications he has been given.

Jeff will need to clear several hurdles before going home.  This may be a bit of a challenge because of his ALS.  Keep those fingers crossed.  Estimated discharge from hospital is mid-late week next week.  

Thanks for the support and prayers. 

November 5, 2009

Note from Anne:

Jeff is generally becoming weaker.  He struggles with taking short steps and pivoting even with our help.  Despite daily range of motion exercises, he has decreased flexibility in the fingers of his right hand.  He has been complaining of pain in those fingers recently.  I believe it is a combination of stiffness and cramping.  This poses problems when he tries to operate his wheelchair and grasp his walker.

He is still able to enjoy pureed/soft food once a day although he is having more coughing spells with this.  He really has to focus on the coordination of breathing and swallowing.

Jeff’s sleep is becoming a little more restless.  He awakens frequently at night trying to get comfortable.  I’m suspicious that he may be having some oxygenation issues but he denies feeling short of breath.  We’ll see what his breathing test shows when he goes to ALS clinic on 11/19.

All of us have received the seasonal flu vaccine but the H1N1 vaccine has yet to become available to Jeff.  Fortunately, we have avoided illness in our house this fall.  It is imperative that Jeff not be exposed to colds/flu or else he could be in big trouble.

I’m sure many of you are aware that Jeff has a special communication device that allows him to contact friends and family through email, text messaging, facebook and this website.  He is addicted and he loves it! 

It is such a relief to have Nick home.  He has been a huge help.

Tyler is wrestling with many emotions because of Jeff’s decline.  However, he finds strength in his big brother and is more willing to help care for his dad lately.  I am so proud of him.

Take care and enjoy today!

August 18, 2009

Note from Anne:

I cannot believe how fast this summer is flying by.  I was able to spend a few short but wonderful days at Rainy Lake with my aunt and uncle a couple of weekends ago.  I fished like a mad woman and had better luck than usual.  Thanks to Jeff’s parents and some great friends for helping while I was away.  During my absence, Jeff had a surprise visit from his Aunts Marge and Aileen and Uncles Jim and Chris.  He said it was a lot of fun having them around.  

Two days after I returned home from Rainy, Tyler broke a bone in the pinky finger of his right hand.  The fractured bone is located below his knuckle and he’ll be in a cast for 2 weeks and then a buddy splint for probably another 2 weeks.  Luckily he is not in any pain and he’ll heal quickly.  His main concern is that he’ll be mended enough by Jeff’s benefit to play golf.

Jeff had another ALS clinic visit last Thursday.  There weren’t any big changes noted.  His breathing is holding steady so he doesn’t need any assistance (Bi-PAP) right now.  

I believe Jeff's communication device will get easier for him.  He has been playing with it and figuring out what he can do and what needs tweaking.  Our “communication guy” is coming out again on Friday to work with him again.

Jeff received his new wheelchair yesterday.  He is very frustrated.  There are several adjustments that will need to be made for it to be more comfortable for Jeff.  The guy that delivered the wheelchair was here for 2 ½ hours and tried his best yet there’s more to do.  Until we get this all worked out, Jeff will not use his new chair but will continue to use the old loner chair.

My dad has been here since last Friday and will be leaving for Chicago this Sunday to get ready to teach this fall.  My brother Ben arrives on August 24^th and will leave on Sept. 9^th.    And then…  I shudder to think what I’m going to do until Nick moves back.

This past week went much smoother.   No big news to report about Jeff’s health.  My dad arrived on Mother’s Day and is here to help for the majority of the summer.  My brother Ben will be here for a month after my dad leaves in August.

If you are in Dubuque during Ben’s art exhibit, please stop by to browse.

If prayer is an intention that we announce to the universe in order to create a desired outcome, then our every thought is a prayer. This includes thoughts of worry as well as of hope. All thoughts are subtle creative energy. Some thoughts are more focused or repeated more often, gathering strength. Some are written down or spoken, giving them even greater power. Every thought we have is part of a process whereby we cocreate our experience and our reality with the universe. When we use our creative energy unconsciously, we create what is commonly known as self-fulfilling prophecy. In essence, when we worry, we are repeatedly praying and lending our energy to the creation of something we don’t want.

The good news is that we can retrain our minds and thoughts to focus our energy on what we do desire to bring into our lives. Since most worry is repetitive, it will take more than one positive thought to counteract the energy we’ve created. The simplest antidote to worry is affirmations. When we hold these positive thoughts, repeat them often, speak them and write them and refer to them throughout our day, we are using focused energy to create positive results.

We can start right away, together: I am a creative being, using my energy to cocreate a wonderful world. I know that I create my experience of life from within, and as I do so, I also create ripples of energy around me that echo into the world. My positive thoughts gather together with the thoughts and prayers of others, and together we create enough positive energy to heal not only our own lives but the world we share. I am grateful for the ability to cocreate good in my life and in the world.

A lot of times we have concerned loved ones that worry about us. When this happens they are also sending out a worry prayer to the world. A loving conversation letting them know what is happening is the easiest solution. Also, ask them to send you positive affirmations rather than worry about you. After all, worry doesn’t do them any good either. Explain to them that worry can actually be energetically harmful to you and that wishing good things for you is much more beneficial and much more fun too.