Full Time

Michael has been working part time (20hours) for the past few weeks and next week he converts to full time. Full time is supposed to mean 40 hours per week, in the past it was more like 60-70 hours per week.
We will see how he will adjust.
He has been using the exercise equipment at work and we have been going out for nightly walks. It has been much too hot to go for walks during the day.

Fireworks

Yesterday it rained really hard during the fireworks, so we stayed cozy inside.
This morning was cooler than it has been so we went for a walk.
Michael is doing well without his O2.

Will and Suzy

I received the O2 consumption log. It did show a few points of below 90% Oxygen, however I believe these episodes can be explained by machine error. Probably when Michael turns over the pulse ox reads low.
Michael still plans to avoid using the O2 except during periods of exercise.
He does still have a cough, which I would like him to have checked. It is so difficult to get him to see a doctor! I can't say I blame him.
I has been wonderful having Will and Suzy visiting with us. At Shul yesterday Myron announced their 21 Wedding Anniversary, which is today!
On Thursday we took them to the Museum of Nature and Science and saw the I-Max show Hubble about the repair of the Hubble by the space shuttle crew. We also saw the gems and stones exhibit. Shana was disappointed that we didn't take them to see the exhibit where she used to work, but we didn't have enough time. The museum closes at 5 PM and a guard told us to leave around 5:15 PM.
On Friday Will and Suzy went to the mint and then after lunch we drove up to Boulder to go on the Celestial Seasonings tour.
On Shabbat Suzy and I went to my women's "Shir" from 5-9. (We played Mahjong) Suzy was very good, between the two of us we really cleaned up! (No money changed hands, it wass Shabbat after all.)
The boys had their regular learning right after Shabbat. The fireworks began right after Shabbat. We watched the fireworks from our front lawn. It was disappointing this year, it was so short and not as many fireworks as usual.
Our next treat was to Bonnie Brae for Ice Cream!
Everyone was up early this morning to go to Daf Yomi and Davening, then the boys went off to the Bagel Store for some fresh baked goods.

failed test

Michael had a respiratory test. He had to walk without oxygen for 6 minutes while his O2 was continuously monitored. Going up hill his O2 fell to 85 (it should not be lower than 90). Then he O2 consumption was monitored overnight. The doctor's office called yesterday to say that he still needs oxygen while sleeping and during the day!
Michael was the one who spoke to the nurse, then he came and told me.
I said we need the O2 logs. What period of time was he below 90? When Michael asked when the test was to be repeated, the nurse responded, "oh in a year or two!" I am sorry that doesn't work for us.
Today I will call the doctor's office and try to get the lab report faxed to us, so I can look at it.

Breathing is good

Michael worked on Wednesday and Thursday. Friday was the company's regular Friday off, so he didn't work. He did go to PT.
We have been trying to walk early every morning as the weather has been really hot.
Michael still has a cough, but his pulse/ox seems to be within normal limits. (Michael got a pulse/ox online for a reasonable amount).
He went to the doctor last week, but failed to mention the cough and the doctor didn't even listen to his chest or ask him how he was feeling. DO I ACTUALLY HAVE TO GO TO THE DOCTOR WITH EVERY MEMBER OF THE FAMILY TO MAKE SURE THEY GET PROPER CARE?
I guess so.
Michael has been walking short distances without an oxygen tank and seems to be doing fine.
This morning he went to shul so we will have to find another time to walk.

Back to work

Michael received permission to go back to work!
Wednesday was his first day back. He worked 5 hours and then came home for lunch. He rested a bit and then was off to OT and PT. He was tired when he got home. He rested a bit and then helped me removed the Mezuzahs from my mom's old apartment. He learned with his brothers.
Good Luck to Yaak today, our prayers are with you!

I'm Back

Now that I am back from my patient advocate position in Ohio I can let Michael keep up his own blog. He is progressing everyday. His oxygen needs are improving. He no longer needs O2 supplementation at rest and his needs during exercise continue to decrease.

Oxygen

Michael and I went for a walk today, we picked up some cheese and vegetables from Petes on the way home.
He seems to be doing well without oxygen while at rest. He still needs it for walking and exercising.

Handy Man

Michael was able to disconnect the hand held shower head and reconnect the old shower head at my mom's apartment. He also removed the bars around the toilet and disconnected the cable box from her TV so I can return them to Comcast. I had called to discontinue the cable TV at my mom's apartment, and was told that I would still be charged until the equipment was returned.
Michael has always been very handy and his stamina is improving so he can now help me with these tasks.
The hospice is coming to pick up their equipment. The Hospice of Saint John has been so helpful with the move of my mom to an assisted living residence. They have been a literal life saver with her care. I am no longer running her to the ER every few weeks due to dehydration.
Michael seems to be able to take care of himself which will allow me to go to Toledo and supervise my daughter's stay in the hospital in OH.

Monday!

Michael went to OT and PT today.
He finished all the reading material that everyone has given him so far.
Michael did update our home phone book which he usually does before Passover. He finally got around to doing it, he was kinda busy before Passover this year.
He informed the president of EDOS that he would resume his work on the newsletter this week.
I have enlisted him in helping me disconnect the cable from my mom's TV so that I can return it to Comcast.
He doesn't appear to need his O2 while sleeping.

Shabbat

This morning Michael and Nancy went off to synagogue. Michael took the wheelchair and returned it because he doesn't need it any longer.
Rebecca and I came later. The rabbi's speech was very inspiring.
Michael and Nancy took a walk to the new DAT garden.
He was too tired to go to listen to the speaker. Aaron did attend and said the talk was appropriate for him as the discussion covered how to be a good father.
Jo Kay came over after Shabbat and Bruce should be here shortly.

Friday

Friday was very busy, Nancy and Bruce came by and then Bruce left for his seminar. Michael went for a hour long walk. We had lunch with Nancy and then Michael went to OT and PT.
We had a wonderful Shabbat dinner with Aaron and Shoshana. Michael had his mom's baked goods for dessert.
We walked Rebecca to let our friends' dogs out.

Hour long walk

Michael had a busy day.
This morning, Rebecca and I went to the Grand Hyatt to work. We left Michael home, when we returned we found him walking home from his hour long walk! He didn't try to walk up the hill on Forest, he took a slightly flatter route. He was really exhausted! Nancy and Bruce Kay (sister and brother-in-law), came in from Columbus, OH. They visited until Michael left of OT and PT. Michael drove himself!
I made reservations for all of us at the deli tonight. Michael isn't home from therapy yet, but I assume he will be home soon.
I will need to make sure he puts his phone back in his car.

Driving

Michael drove to OT and PT today. I told the therapist that Michael drove and I only screamed once. Michael, not missing a beat said, she usually screams twice. The therapist laughed, luckily she has a sense of humor.
Now that Michael showed me he can drive he can go to his appointments by himself!
His oxygen requirements while exercising are decreasing.

The oxygen man came today and dropped off more portable tanks, he is originally from Manhattan. I commented to Michael that it sounds like the O2 guy just got off the boat even though he has been in CO for 21 years. Michael said, "I know Manhattan is an Island, but one doesn't sail to CO from NYC". I said,"OK, it sounds like he just got off the train!"

Fend for Yourself

Michael and Rebecca had to fend for themselves today as today was the day that I moved my mom into a long term care facility (LTCF). It took all day to get her and her things just a few blocks away. Thanks to Karen for all her help with the move! I couldn't have done it without you!
I stopped home occasionally to check on Michael. I came home to give everyone dinner. Michael took his walk by himself today.
I had to disconnect the humidifier from the O2 today as water was condensing in the tubing.
I did take Michael's Prius in for its recall work and watered the lawn before I left to take care of my mother. Come on, we all know the Prius lack of breaking/acceleration has nothing to do with floor mats, it is a computer problem that they don't know how to fix yet. (Or they do know how to fix it, it is just too expensive.)
Wednesday I will take my daughter in for her one week check up post oral surgery.
Then I meet with the Hospice nurse and LTCF staff go go over Hospice responsibilities at my mom's new home.
Then it is off to OT and PT. Michael has OT and Pt on Wednesday, Thursday and Friday this week due to the holiday schedule.

Anniversary

I got up early to water the lawn and was surprised to see an Anniversary card from Michael. He couldn't go out and buy one, but he made a beautiful card on the computer!
It is so nice being together and enjoying each others company.
Michael might have made it difficult to get to this day because the doctors weren't sure he would survive, but he has always (ok, almost always), been easy to love.

No short order.

Saturday night Michael and I watched Babylon 5.
Last night Michael woke up and said his oxygen wasn't working! I went to check the 50 foot line that connects him to the oxygen condenser. I tightened the connections and Michael said everything was fine.
It is Sunday morning and Michael made waffles for me, they were delicious!
I am defrosting some ribs that I got from R. Crystal and will make potato salad for dinner tonight.
Tomorrow is our 27 wedding anniversary. Michael has made it so hard to get to this day (keeping him alive is no short order), but we're made it.

Synagogue

Michael went to synagogue today! He walked carrying his oxygen tank. The rabbis greeted him and gave a welcoming speech telling everyone how Michael is such an inspiration and how our prayers have been answered. He was a bit embarrassed. He did bench Gomel (a prayer of thanks for surviving a deadly situation).
Today is the anniversary of his Bar Mitzvah parsha and his ufruff parsha, so it was an auspicious occasion.

Getting Ready for Shabbat

Today Michael had OT and PT. In OT he was tested to see if he could feel items in his hands without looking at them. He has sensation in both hands so he was able to correctly identify all the items!
He also was given a piano and he played some tunes. He has noticed that his hands don't remember the notes as easily as they once did.
His dexterity is slowly returning.
A number of the exercises were done standing up, his stamina is improving and his oxygen needs are slowly decreasing. When he first started exercising his oxygen requirements went up substantially, now he rarely goes about a setting of 4 liters.
I brought our guest cat home for the weekend and he immediately went to seek out Michael and crawled up on his lap.
Today Michael helped get the house ready for Shabbat. One of his regular tasks is to put the candles on the table. Today when he put the candlesticks on the table, Rebecca reminded him that he was on oxygen. I carefully set the candles on the cook top where they will be away from Michael and his oxygen.

My regulator

I was sitting at the table this afternoon and I heard a hissing coming from the living room. I asked Michael if he was leaking oxygen. We noticed that the portable tank was leaking. So we got another tank and tried the regulator on the new tank. We laid the 2nd tank down and after a few minutes it also started hissing. I called the oxygen company and told them the problem. I was told someone would come out and try to fix the problem. The company called back and told us how to trouble shoot. We had already figured out what to try. (I live with a engineer, of course he could figure out how to fix things). I was told to put a new washer on the regulator. I said that would be a great idea, unfortunately, we weren't provided with spare washers! I also asked if they would provide us with a spare key for the tanks. A little after 5PM a gentleman comes out and says he can't reproduce the problem (of course). He replaces the regulator and has Michael show him how to connect the regulator. They discuss how to replace the washer. He leaves us with an extra key and spare washers.
The oxygen man says we should always have spare washers and a spare key. Thanks, I think I figured that out.
Tomorrow the plumber is supposed to come out and fix the connection to the swamp cooler. The high today was in the 90s. Tomorrow a record high is expected, so I hope it will be running tomorrow. It is currently 87 on the main floor of our house! I have a couple fans going. The basement is actually comfortable, lucky for Rebecca. (her room is down there). Michael has been working on the computer and is also hanging out in the basement. I have been literally slaving over a hot stove. Rebecca wanted French onion soup for dinner. She just had oral surgery, so I figured that I would humor her.

OT that tastes good too!

Today Michael had OT and PT this afternoon. He worked hard and is progressing.
Tomorrow, I have told him that he will have to make Tapioca Pudding for Rebecca. Mixing pudding is an excellent form of OT and it tastes good too.

Anniversary

Monday, May 31 will be our 27 Wedding Anniversary. Does anyone have some suggestions on what we should do to celebrate this special occasion?
A long hike is out of the question for now.
I think we will also have to skip a bonfire or candlelit dinner. We can have the dinner, but the candles can't be on the table.
Michael had originally wanted to go on vacation, but this will also have to wait.

Walk without wheelchair for support!

Michael walked all the way to EDOS where we stopped to rest, then we continued on Cedar west to Grape, crossed Alameda, east to Ivy, south on Ivy back home! He did this carrying the oxygen tank without a wheelchair! wow
I picked up fresh bagels from the Bagel store for him for lunch and now he is resting. I did tell him that he had to butter his own bagel, it is good OT.

Busy Day

Today was a busy day. Michael saw his primary care physician this morning. The doctor kept remarking how unbelievable it is that Michael is still alive!
The oxygen man came and brought more portable tanks and a humidifier for the oxygen concentrator. (It adds humidity to the oxygen so it isn't so drying to the nose/body).
This afternoon was OT and PT.
He took a test today to determine his readiness to drive and he passed. It looked at peripheral vision and reaction time. Michael still feels he isn't up to the level of concentration he had before this illness.
Michael continues to improve. He finds it frustrating that he can't do everything he used to be able to do, but he has come so far.

Way up high

Today, Michael made pancakes. I had to get the griddle down from the "Michael height" shelf because he is still to unsteady to reach items very high up.
We took a walk around the block and then to the corner of Dakota and Holly. That was nice progress for the day.

Doctor speak

I remember how annoyed Michael was when the oncologist claimed that Michael was unremarkable. I just had to laugh, unremarkable is doctor speak for "there is nothing wrong with the patient". I told him unremarkable is what you want to be when it comes to health.
Michael had a visit from a doctor friend and his family. The doctor commented to Michael, were you on the floor before you went to ICU? Michael though that meant he had fallen on the floor and was very confused. I translated, on the floor means "a regular hospital floor not a specialized unit like ICU." Yes, Michael was on the floor before going to ICU.

Walk around the block

Today Michael and I walked all around the block! He put the oxygen tank in the wheelchair and pushed the wheelchair. He didn't even have to stop and sit down.
His stamina is improving.
It was really hot today and we look forward to having the swamp cooler working tomorrow. I brought up a fan before Shabbat and left it on all Shabbat. It made the house more bearable.
I am so glad that it cools off at night in Colorado!
I turned off the furnace the other day, it looks like we will have spring for a while.

Rehab

Michael went to PT evaluation today and also had OT. He was able to walk to and from the building without assistance from a walker. He had to carry his portable oxygen tank so it was a bit of a workout.
He heated up the rest of his homemade pizza for lunch today.
He is managing ok, but his walking is unbalanced.

Pizza

Michael made Tapioca Pudding on Monday and he made Pizza today! I helped with the sauce and vegetables, but he made the dough from scratch. It was delicious! It was difficult for him to put the pizza brick away because it is heavy and it goes above the oven. It is hard for him to reach up that high because the strength in his upper body hasn't been full restored.
Tomorrow is outpatient OT and the evaluation for outpatient PT.

Oxygen

Anyone have any comments on how to keep oxygen tanks from rolling around in a car?
When the tanks are full they are under 2,000 pounds of pressure. I was told not to let the tanks move around in the car too much.

OT and Walking

Michael walked to the Fire Station this afternoon. He did some OT at home using the exercise sheets he was given. This morning I called Spalding Outpatient and was able to get an OT appointment for Tuesday.
Tuesday night the holiday of Shavout beings so I won't be blogging until Thursday evening.
I will try to comment Tuesday during the day.
Baruch HaShem, Michael continues to improve!

Chronic Daily Headache

In a completely different topic:
If anyone has suggestions on a cure for Chronic Daily Headache which does not involve drugs, please let me know.
Chronic Daily Headache is defined as a headache lasting 15 or more days a month.
I have heard that in 60% of cases Botox can decrease pain by 50%. Most insurance does not pay for this. I have spoken to someone who tried this with no significant change.
I know dry needling helps (acupuncture needles are used at a greater depth), but I do not know of anyone in Ohio that practices this treatment. I have found an Osteopath who helped, but again, no one in Ohio.
I spoke to someone who had headaches for 15 years! She said she was treated with acupuncture 3 times a week in Peru and now is accustomed to the pain.

Walking

We went for a walk this afternoon. This time Michael rested at the Fire Station and then was able to walk all the way back home. We are not back to the one hour walks yet, but we are making progress. I remember after Michael's chemotherapy treatment in 2002 how excited I was went he could walk to the front gate.
As the doctors said, we move forward in baby steps.

Breakfast

Michael was able to stand and make waffles and coffee this morning!
He is now working on his computer going through literally hundreds of emails.

Travel with Medication

For people traveling with medication; please remember to keep all your medication in your carry-on luggage. Keep a copy of your prescriptions with you. In case you lose your pills you can go to a pharmacy and get refills of your lost medication. You may need special permission from your insurance company and you may have trouble replacing narcotics. If you will be out of town when you need to refill your prescription you can get a waver to refill the drug before you leave town. Communicate with your pharmacist about traveling and getting drugs before you leave. If you are traveling within the US you may easily get your prescription filled at chain pharmacies like Walgreens and CVS. If you travel a great deal even Target can be a good place to keep your prescriptions.
If you are traveling outside the US, make a copy of your Passport picture and keep it available in case you lose your passport or it is stolen.

Walking

Michael went for a walk outside today. He pushed a wheelchair all the way to the Fire Station and almost all the way home. It was a good start. He has been walking around the house without a walker. He can go up and down the stairs on 2 liters of O2. He manages on 1 liter of O2 when at rest. He can stand up for a short shower.
We had a number of guests who came by to wish him Happy Birthday.
I lite Shabbat candles on the cook top and kept him away from there and Aaron said Havdalah so we kept the candles away from Michael.

Life at Home

Michael seems to be getting around the house pretty well. He has been able to go up and down the stairs with just a bit of oxygen boost.
I made an appointment for OT and PT next week, but couldn't get an appointment until next Friday. I will have to call on Monday and set up appointments for the next week.
His PEG site is bleeding a bit, and I am keeping an eye on it.

Open sources of fire

Well, I haven't quite figured out about lighting candles for Shabbat and oxygen. Michael and the oxygen condenser have to stay 15 feet from open sources of fire. That will make eating dinner kind of tricky for him as the candles are on the table.
Sleeping with the oxygen condenser was OK because it was downstairs and we were upstairs. It is very, very noisy. We have 50 feet of oxygen tubing snaking through the house so we have to be careful not to trip.
If anyone has had experience with oxygen and Shabbat candles please let me know.

Breathing Easier

The Oxygen man finally came. He said the tank that Michael was on wasn't set up correctly so it was reading wrong. He actually had about 5 more hours of O2. The person from the oxygen company set up the tank, so I guess he did something wrong. The oxygen man came by and dropped of an air concentrator and some tanks of liquid oxygen.
We went on our first field trip, to get a haircut.

Where's my oxygen?

Michael started on his portable O2 tank around noon and they told us it would last 8 hours. We are still waiting for the O2 delivery at 4:42 PM and the tank is almost empty. It sure didn't last 8 hours, only about half that time. I called the O2 dispatch again for the third time and told them that the tank registers in the red zone. I got the same response as Michael was told, they would contact the driver. Meanwhile Michael turned down his tank to .5 liters instead of the 1 liter he is supposed to be on. We can only hope they come pretty soon.

Home !!!!!!

Michael is home!!!!!!
I picked up his medication at the pharmacy near the hospital and they had it ready in record time.
He got a portable oxygen tank for our trip home and he called the oxygen supply company to deliver his supply for home.
He was excited to have me make lunch for him.
I stayed up late last night to make matzah balls and got up early this morning to make homemade chicken soup, Michael's favorite food.

PEG Gone!

Michael had his PEG feeding tube removed this morning. He was only given Tylenol so he is in a bit of pain. He has to stay pretty still this morning, but he can continue with some easy PT this afternoon.

Feeding Tube Removal

Michael will have his feeding tube removed tomorrow!
He will not have breakfast and be given medication and the PA will removed it!

Discharge Date

The meeting today at Spalding suggested Thursday May 13, 2010 as the discharge date for Michael!

He will be set up with outpatient OT PT and ST three times a week which will continue until he is performing well.

Today PT has him walking forwards and backwards. While he is walking he has to throw/catch a ball.

He went up and down 9 stairs twice!

Michael is currently having some issues with concentration and memory. The Speech Therapist said that his ability is well beyond anything they can help him with because they do not have tests for someone at his intelligence level.

Independent Movement

Physical Therapy came today and Okayed Michael for independent movement in the room. That means he can move around by himself without someone watching him.
Today is the interdisciplinary meeting to determine when Michael can go home. We hope he will be able to go home really soon.
We think Michael will need a seated walker until he gains more strength in his legs and hips.
He will need to go home with oxygen and will need extensive physical therapy (PT). We are hoping that he can do his PT on an outpatient basis for a few hours a day.

Stairwell

Michael walked up and down nine stairs in the hospital stairwell today!
Tuesday will mark 7 weeks since Michael was hospitalized. Tomorrow is the interdisciplinary meeting to determine Michael's readiness to return home. We are hoping that they will say he can return home and suggest outpatient rehabilitation.

Empowerment

It is so important to have regular check-ups with your doctor.
You need to make sure you are up to date with your vaccines. Dr. Ken Greenberg, an Infectious Disease Physician, said it is important for adults to be vaccinated against, seasonal Flu, H1N1, Pertussis (Whooping Cough) and Tetanus. He said there is an upsurge in Pertussis and Tetanus in adults. Those of us who received these shots as children may have lost their immunity and need to be re-vaccinated.
Please, do not put off your yearly exam! Many people notice warning signs of disease and put off going to the doctor because they don't want to find out that they have X disease. In most cases, early detection can be the difference between life and death.
We can see with Michael's illness that vaccinations can be truly lifesaving. If you are not sure if you should get vaccinated, ask your Primary Care Physician (PCP) or Infectious Disease (ID) Doctor.
It is important to ask the right doctor about your medical issues. I had an uncle who ask his cardiologist about pain that he was having. Since it wasn't cardiovascular in nature the doctor sent him to a pain clinic. A year later, my uncle died of cancer. If he had just gone to his PCP, the cancer would have been detected earlier and he would have survived.
It is important to be followed by an Internist or PCP. They are the experts in total body health.
What happens if you find yourself in an emergency situation? Now you know to have your Medical Power of Attorney forms and 5 Wishes forms with you. If you or a loved one get sick during office hours, call your PCP and ask to be seen right away. The ER is not the place for non-emergency medical problems. The ER visualizes everyone as "really sick" and may miss a non-emergency medical diagnosis. If you do end up in the ER, you have the right to refuse treatments that seem not medically needed. Remember, the ER is for emergencies. I know this sounds silly, but you wouldn't believe how many people decide in the middle of the night that they need to have the ailment that has been bothering them for 2 weeks looked at! Chances are that if you see a PCP regularly, you can avoid non-emergency visits to the ER.
Go with your gut, empower yourself. If you feel you have something wrong and your doctor can't help you, see another doctor. See a different kind of doctor! You don't have to live with a chronic condition. The trick is to find the right care. For some people, it may take years to find the right person to help them. Don't give up.
The Center for Integrative Medicine at the University of Colorado has, nutrition services, acupuncture, biofeedback, Chinese Herbal Medicine, Therapeutic Message, and Yoga, all integrated with Western medicine to meet patients needs. This integration is so important, do not go off and see just any, nutritionist, herbalist or acupuncturist, not everyone has the same expertise or certification. (Make sure the nutritionist you see is an American Dietetic Association Registered Dietitian RD, anyone can say they are a nutritionist). Some people can be helped by seeing an Osteopathic Doctor. They use manipulation to help patients. Osteopaths are different from Chiropractors. Ask them the difference.
Everyone should go in for baseline tests. It is important to take your children for their well baby checkups and to have your older children see their PCP before going off to camp/school/college.
Women should have a baseline mammogram at 35 (or earlier if you have a family history). Everyone should have a Colonoscopy at 50.
Men should have PSA screening test.
If you have a medical condition, it is so important to take your medication as it is prescribed. Don't skip pills, don't give your pills to others.

Visitors are welcome

Michael has been reading the paper every day. He does the crossword puzzle. He has been walking and doing strengthening exercises.
He called his mother and wished her a Happy Mother's Day. He got though right away, clearly a first!
He is now down to 1 liter of oxygen. (A liter means the patient uses one liter per hour of O2).
He still has some swelling in his feet, which seems to be decreasing.
Yesterday's labs did not indicate his Purine level, but he is being treated for elevated Pruines, so I am anxious to see his labs on this. ( Elevated Purines indicate Gout). He has been trying to push the protein to regain muscle, so he will have to slow that down a bit.
His red blood cells, hemoglobin and hematocrit and serum albumin are all low. The nurse said, "I am sure he is getting iron", I said, "I hope not, he has hemochromatosis" (too much iron in the blood. He developed this due to many previous blood transfusions. The low albumin indicates a decrease in muscle mass). He isn't getting any additional iron. Most men do not need iron supplementation.

Visitors are welcome.

A "swell" guy

Michael had a quiet Shabbbat. He did lots of reading. He worked very hard at OT and PT. He walked with a cane today instead of the walker, but he doesn't think he needs that either. He worked on endurance and conditioning. He is gaining stability on his feet.
It got there a little after 9PM and Yaakov called to study Mishna. Will was still driving home so he didn't get to participate tonight. Michael was the reader tonight because Yaakov was driving.
After his call, we played Uno, each of us won a game.
The insulin was discontinued today. He is given oral medication instead.
His feet are swelling up. The doctors aren't sure why, but I bet it is from the high sodium diet he is receiving. I will request a low sodium diet, if that isn't possible, I will have to bring food from home.
I left around 11 so both of us could get some sleep. I am now doing Michael's laundry. He only has 3 pair of scrubs and they need to be washed after only one day.

No grass will grow under his feet!

Michael has been kept very busy with OT and PT. He has been walking the halls, doing strengthening exercises to rebuild thigh and hip muscles and relearning the skills of everyday living.
In 2006, just before Michael's transplant, he was told that while he is on immunosuppresants to switch from bars of soap to liquid soap. The thought behind this was that bar soap can harbor bacteria. After Michael's bone marrow transplant he developed a skin rash which we found out was due to the use of liquid soap. He currently has a skin rash. The doctors said to watch it. I think the rash is due to using liquid soap so I brought in a bar of soap from home for him to use.
Michael has finished his course of steroids and the doctors are now reducing the amount of insulin he is getting. His blood sugar levels have been very good. The hope is that he will be able to stop using insulin and return to oral medication to maintain normal blood sugar levels.
Since there seems to be a difference of opinion about how long a PEG needs to be in before it should be removed, I have called a couple of Gastroenterologists to find out their take on this type of tube feeding. I am awaiting their feedback.

I want to go home....

Today Michael worked hard at PT and OT. He walked around the 6th floor, he climbed the practice stairs, he did arm and leg exercises. He got to go sit in the main lobby to do some of his exercises. If it had been nice he would have stayed outside, unfortunately it was drizzling a bit when he wanted to go out.
ST (speech) cam in to see him today. This therapist is a substitute therapist. She said that the regular therapist told her that Michael is by far the smartest person she ever met. The regular cognitive workouts are much too easy for him. She was told to bring more difficult problems/puzzles. She also had to bring a "cheat sheet" because she wouldn't know the answers without it!
Michael is able to enjoy guests between therapies.
The doctor told us today that it will take a while before Michael is able to "get back to his old self". He will need extensive therapy even when he gets home. It will take some time to build up his muscles and for his lungs to heal.
Our goal is to have him home for his birthday on May 15!

Leaps and Bounds

This afternoon Michael walked twice around the hospital floor, 600 feet! What a big change from last Friday when it was a big deal just to walk 15 feet with 2 people to help him stand!
Cognitively, he is still whooping my behind. We played Scrabble and it was no contest. He has resumed solving crossword puzzles, in pen.
He is not up to his usual genius self and his stamina isn't what is used to be, however, he is doing amazingly for someone who has gone through the traumas he has endured.

It is so good to hear your voice!

Michael continues to make progress. He can walk 120 feet with a walker. He practices standing up and sitting. He works with OT to strengthen this arms and ST works on his cognitive skills.
He phoned a few people and each person was so pleasingly surprised to hear from him. You could actually hear the smiles in their voices.
He studied Mishna with his brothers this afternoon and is an active participant!
The disappointing news we received today was that his feeding tube can't come out until it has been in for 6 weeks. Originally we were told it could come out after 30 days.

Drive to live

Michael's amazing recovery is a testament to his tenacity, perseverance, strength of will and drive to live.
He walked 80 feet this morning and went up and down the set of practice stairs twice. Upon returning to his room he did leg exercises. When OT came he brushed his hair, brushed his teeth and washed up.
This afternoon he was tired from this mornings activities but he was still able to walk 80 feet down the hall. He then propelled his wheelchair the rest of the way back to his room.
The Spalding staff met today to discuss Michael's progress and to determine a game plan and future rehab. They think he will need to spend about two more weeks at Spalding.
They discussed the possibility of his attending daily rehab once he is discharged from this facility. They are concerned about Michael's work schedule and his potential stress level. He is currently having difficulty concentrating for more than a few minutes. His ability to multitask and his memory are not up to his usual genius. The speech therapist (ST) is working with him to regain the abilities that are currently diminished. ST mentioned that Michael's cognition and problem solving skills are phenomenal.

Positive Impact Upon a Loved One

Michael had a truly remarkable day today. He walked 20 feet down the hall using a walker this morning. He had difficulty breathing so his O2 was put up to 10 liters. He is on 3 liters in his room. His heart rate went up very high so he had to rest. This afternoon he was able to walk 60 feet and climb 3 stairs and only needed his O2 raised to 6 liters! Between walks he did arm exercises in bed.
His is now able to sit up for hours at a time. He can eat, brush his hair, shave, use a computer, text, and study Mishna with his brothers without help.
OT and PT were amazed today at the progress he has made since Friday when he arrived at Spalding. He even outshone himself this afternoon. He was able to walk farther and his recovery time decreased. (the amount of time it took his heart rate and O2 to rebound). He seems to be progressing in leaps and bounds!
His appetite is improving and he has been trying to eat loads of protein in order to rebuild his depleted muscle stores.
OT always remarks on how much stronger his left arm is than his right arm. The therapists always ask if he is left handed. He responds that he is right handed. What a difference the passive range of motion exercises I did with his left arm and both legs has made in his recovery! I am so glad that I found the article on using passive range of motion on intubated patients on paralytics. I am glad that Doctor Michael Schwartz (the Pulmonologist) agreed to order PT to show me how to correctly do passive range of motion exercises on Michael. The article said that patients who recieved passive range of motion exercises recovered mobilty faster than those who recieved no therapy. Dr. Schwartz said it was important for a family member to do the therapy becuse it changed the feeling of helplessness to one of making a positve impact on their loved one.

Heal the World

People have asked, "what can I do for Michael?"
There is a saying, if you save one life, it is as if you have saved the world. Michael is a big believer in donating time, energy and financially to charitable organizations in hopes of making this world a better place.
If you would like to make the world a better place there are organizations which can use your donations.
If people in Colorado want to donate blood in honor of Michael, they can either contact Belles Bonfils http://www.bonfils.org/
(When you donate blood ask for a card to fill out recording your donation and mail it to Michael.)
or Presbyterian Saint Lukes Medical Center Blood Bank http://www.pslmc.com/blood_donor/index.htm
Outside of Colorado, you can donate blood at your local blood bank.

I would encourage people to make a donation to the Leukemia and Lymphoma Society http://www.leukemia.org/hm_lls
Michael and I won't be able to have a team at this year's Leukemia and Lymphoma Society (LLS) Light the Night event in Denver this Fall because it is on the Jewish Holiday of Sukkot, but we hope to have a team in 2011 and we still support the LLS.

Michael was unable to eat food by mouth until recently. You can donate non-perishable items to your local food bank in honor of Michael. In Denver you can make financial donations to Tomcahi Shabbat C/O EDOS 198 South Holly Denver CO 80246. Make your tax deductible check out to Tomchai Shabbat and in the memo section write, "in honor of Michael Schwartz".
Alone, one person can't heal the whole world, but together we can make the world a better place. Let's try.

Progressing

Michael had his Fentanyl patch discontinued today. He seems to be tolerating the lack of narcotics. He is alert. He is eating small quantities of food. He read the paper, a copy of Time Magazine and studied Mishna with his brothers. His blood sugar is pretty good with just a small amount of insulin to help him along. He sat up in a chair this morning. He is progressing well. He was weighed today, his weight was 167 pounds, down from 200 pounds on March 23. He would like to get back to 190 pounds. Most of the weight he lost was lean body mass, due to the high caloric needs of being on high levels of oxygen. Too bad our bodies don't lose fat when we are sick.

Spalding @ PSL

On Friday the nurse at Select Specialty Hospital told me that the hospital was to have 4 new admits who were on ventilators and that Michael's room was needed. He would have to be changed to a room down the hall with a roommate. I know that Select does not have therapists on the weekends, so I asked if his transfer to Spalding could be moved up to Friday. The doctors said he was ready to move, they just do not like to move patients on the weekends because of the difficulty with follow through. They were able to move Michael upstairs to Spalding. It is on the 6th floor of the B building at PSL, just one floor up from Select. He can have visitors, but they must not interfere with his rehab schedule.
The Physician's Assistant looked at Michael and his chart and gave orders for the weekend. PT and OT came in and checked him over. They asked what his goal was for the day. He said that he would like to walk to the bathroom. They turned up his O2 from 3 liters to 6 liters, they gave him a walker appropriate for his size and guided his short walk. Success! They turned his O2 down when they were done.
It seems like not all the discharge orders made it to Spalding. The wound specialist at Select wrote discharge orders for the care of Michael's Trach hole. These orders were not transferred to Spalding. I tried to work with the Spalding staff to make sure Michael's wounds were attended to, that was a difficult task as it was Shabbat and I didn't arrive until 9PM. All the doctors who could have helped were gone due to the late hour. There were doctors on call but, the nurse did not think that Michael's wound care was an emergency and did not wish to contact the physician on call.
Michael said the PA comes in at 6 AM, so I wrote a note on the board in Michael's room with the questions I have concerning Michael's care.
I showed him the string that turns on and off the light in his room. It takes a great deal of strength to manipulate this string. He said that he wouldn't have be able to turn the light on/off last week. I told him that he wouldn't have been able do it 2 days ago. He was able to turn the light on and off tonight.

Michael has moved to Spalding in PSL, he is in room 6217.

10 Steps!

Michael took ten steps today with the assistance of a walker!
Select needs his room for ventilator patients so he may have to change rooms before his move to Spalding. We are waiting to see if our insurance will cover his rehab stay.
I brought grape juice and Challa for Shabbat dinner and the deli supplied the rest of the of the food.
I haven't decided yet if I will walk to the hospital on Shabbat. I think it will take about 2 hours as I am not a fast walker. I guess it depends if the weather is nice or not. It is supposed to rain tomorrow.

Muscle Function

People have asked me to explain why Michael is paralyzed (temporarily).
In order to save Michael's life during the critical stage of ARDS (acute respiratory distress syndrome - sever lung damage due to the H1N1 and pneumonia), they had to give him paralytics (to stop the coughing), steroids (to decrease the inflammation in his lungs), and narcotics for the pain. He was in bed for a month. People lose muscle if they just stay in bed for a short time. A week in bed can cause some significant mobility issues. Michael was bedridden for a month. Paralytics and steroids cause muscle weakness. The choice was, death due to ARDS or temporary paralysis.
The coughing fits caused his oxygen saturation to become dangerously low. His lungs had to have time to heal and the only way to do that was to let the respirator breathe for him. Breathing is an unconscious function controlled by involuntary muscles. The paralytics were necessary to disable his involuntary muscles.
What muscles are affected by the paralytics, steroids and bed rest? Muscles are necessary for swallowing, breathing, standing, walking and even using the bathroom. Every move we make, whether voluntary or involuntary, requires muscle function.
Hopefully, Michael will recover muscle strength with PT and OT.

Rolling!

Michael had help from 2 people to pivot into a wheelchair. He was given a portable oxygen tank and I got to take him out of his room! Today he was on 3-5 liters of oxygen via nasal cannula. He was even strong enough to use his arms to move the wheelchair for a short time. The staff was pleased to see him roaming the halls. His arms and legs continue to gain strength. I know he is eager to be able to move around the room by himself. That would be freedom!
Sitting up was well tolerated and he sat for most of the afternoon. The doctors at Select say Michael is ready for more physical therapy!
I went up to Spalding on the 6th floor and ran into Yechiel Kleen (member of EDOS, his daughter is the same age as my daughter, Alana). He is the doctor in charge there. I asked him which Spalding facility is better. Apparently, the one in Aurora is currently under renovation so part of the hospital is closed. Yechiel said he would recommend the one located in PSL due to Michael's medical condition. He said if Michael wants in, he will make sure he gets a private room. The staff at Select just need to ask for a referral and someone from Spalding will come and evaluate him.

No more Trach!

Michael's Trach was removed today!
The hole in his neck will slowly heal and close up. It was covered with gauze today. He will have to apply pressure on the hole while coughing or talking until it seals itself. Jeff, the RT (Respiratory Therapist) said it should close significantly in just a few days.

He had another secession with the Speech Therapist. She applied the electrodes to his neck and gave him electric shocks to stimulate swallowing. Now he can have popcicles and clear liquids. Today he had oatmeal for breakfast, a tuna sandwich for lunch, a peanut butter sandwich, chicken soup and applesauce for dinner. He is allowed ice water or juice between meals.

I spoke to the clinical dietitian and we agreed that Michael would only be fed through his PEEG tube (in his stomach) for 8 hours from 10PM-6AM. This would allow him to feel hungry. His blood sugar will now be tested before meals.

He will get bolus tube feedings after meals if he doesn't eat well.

I spoke to the food service dietitian and we put lots of kosher food in his room and a few items are set aside for him in the refrigerator on the floor.

How to choose a nursing home or rehab

Ask your doctor friends where they would recommend for rehab or a Nursing Home. Go visit the facility during the day and night shifts. Come prepared with questions. Do they take your insurance? What is their staff to patient ratio? Do not let fancy PR fool you. Try to observe if the patients are cared for and pay attention to see if the staff is happy. Is the staff overwhelmed? Find out the staff schedule. When is shift change? Who cares for the patients during shift change? Do you have access to the doctors/nurses? How often do the patients receive OT and PT? Is the place clean? You can look up the rating of nursing homes on the internet. Make sure where you place your loved one is safe.

How to choose a hospital

How do you know what hospital to use? Your first visit to a hospital may be to the emergency room. Where do you go in Denver? First, ask you doctor friends where they recommend. In the Denver area, Denver Health is the best ER for trauma. If a person has a major injury the ambulance will most likely take you to Denver Health or Swedish.
An EMT may ask you what hospital you want to go to. Health care providers that I have spoken to suggest PSL (Presbyterian Saint Lukes) has the fastest ER.
If you have a child your first preference may be Children's Hospital. If your child requires surgery Children's Hospital gives priority to the youngest infant. If your child is older they will be placed later in the day. If your child needs a simple procedure, it may be wise to take them to another hospital in town. For example Rose Medical Center (RMC) gives priority to children over adults for surgery times. Kids will get an earlier time than adults. If your child needs surgery, you will not want them to have to fast all day before their surgery. An early surgery time means you will be home earlier. Talk to friends and doctors concerning your illness/injury and ask where they suggest for care. Each hospital has its pluses and minuses. Remember to have a family member or friend to act as a health care advocate for you while your in the hospital.

How to find a doctor

If you are looking for a doctor ask your friends who they go to. Call the person recommended and ask if they honor your insurance and if they are taking mew patients. Make an appointment to meet them and ask if there is a fee for this meet and greet. Bring a list of questions that concern you. Besides speaking to the physician, talk to the office staff, they are the gate keepers for the physician. Bring a list of your medications and your medical history. Ask the doctor/staff about how easy it is to get an appointment. Do you have to wait weeks or months to see the doctor? What is the average waiting time in the office? How much time does the doctor spend with each patient? Has the doctor treated a person with your medical history? If there is an emergency, can you see the doctor that morning or that day? What happens at night or on the weekends/holidays? Who are the doctors on call? If you do not feel comfortable asking the doctor questions, choose another health care provider. You should always feel comfortable with your doctor. If you are intimidated please pick someone else.
When I was looking for a pediatrician I asked a friend of mine with the most children who she used. It turned out to be a great choice.

Moving!

At rounds today the doctors discussed Michael's progress. They said that he will be ready to be moved on Monday to a facility which offers a greater amount of physical therapy. The doctors will discuss possible facilities with me before the move.

Tube Feedings

Michael is still receiving tube feedings (Glucerna). I discussed this with the dietitian. She said the Michael will still require the feedings until he is eating well. She said the daily feedings will be discontinued and just night feedings would be necessary. She also said that Michael would get a bolus of Glucerna after breakfast and after dinner. It is necessary to discontinue 24 hour feedings or Michael won't be hungry. The nurse came in to reattach his feedings at 5 PM, before dinner! Michael said that isn't appropriate. How would he be hungry if the feedings continue? The nurse was nice enough to tell him that she could wait until 6 or 7 PM. Michael was told night feedings mean 6PM until 6AM. I will discuss this with the clinical dietitian tomorrow, because that isn't my idea of night feeding.
This afternoon Michael's tube feeding was discontinued because he left his room for his test. When he got back from his test he was told he could eat and was given food. After he finished, the CNA came in to check his blood sugar! I told the CNA that was not appropriate, because he just ate. He would need to wait 2 hours after Michael ate to check his blood sugar. His blood sugar was high and the RN came in to give him an insulin shot. I told her that wasn't appropriate as he just finished eating and he was off his tube feeding. She agreed that his blood sugar should have been checked before he ate, but gave him the insulin anyway as it was only 3 units.
Michael was brought food for dinner. He waited until someone came to check his blood glucose because he did not want a repeat of this afternoon's fiasco. Not surprisingly, it was really low, way too low! They gave him a bolus of Glucerna.
Food was ordered from the East Side Kosher deli for dinner tonight and breakfast tomorrow, however the food Michael got wasn't from the deli. I had left some items for him so he did have something to eat. I called the Deli, they had indeed sent the food to PSL. I called the floor, they didn't know what happened to the food from the deli. I left a message for the dietitian in charge of food service at PSL and asked her to contact me in the morning.

Food Glorious Food!

Michael has now gone for 48 hours on the Trach collar and they took the ventilator out of the room! He is currently using a nasal cannula on 5 liters of O2. After 72 hours, with no significant problems, they will be able to remove the Trach! WOW! Hopefully that will be done tomorrow!
Last night he had his first shower since March! He was moved to the shower area, and sat in warm running water! If the CNA (nurse) hadn't been so concerned about Michael's O2 saturation, he would have had a much better time.
When Michael was getting back into bed after his shower, his new peripheral line accidentally was pulled out. The RN (nurse) was informed about the accident, and said he doesn't need it any longer.
Today he had modified barium swallow (a test to determine his ability to swallow). He was allowed to have a few spoonfuls of applesauce, some thickened juice and a bit of graham cracker. (I checked all the items and they were kosher-even the thickener). He did pretty well on the test and is now allowed thickened liquids, pureed items and soft foods. Tomorrow I will bring him a peanut butter and jelly sandwich. I had a talk with the dietitian and told her how everything Michael gets has to be in sealed containers with kosher markings on it. Items were ordered from the East Side Kosher Deli for tonight and tomorrow. He didn't get the items for tonight so I will call the dietitian and confirm items for tomorrow.
Between meals Michael can have ice chips and water. He is not allowed to drink with meals because that may cause him to aspirate. The speech therapist will still attach electrodes with electric current to his throat to stimulate swallowing. Hopefully, he will be able to progress to solid foods soon.
Today Michael worked with OT and PT. He was able to stand and pivot to a chair three times. He sat in a chair for 2 hours today. He stood up three times with the help of 2 people. Standing is very difficult for him because his heart isn't accustomed to pumping all the way up to his head! His body will have to adjust to his changes in position and this may take some time.

Peripheral Line

Michael had a central line with four lumens surgically implanted in his neck on March 25 just after his was intubated. The central line is a site for IV's which go into the jugular. He also had an arterial line placed in his right wrist and a peripheral line placed in his right arm. He was receiving many IVs during his stay in the ICU.
The central line and arterial line were removed before his transfer to Select Specialty Hospital. A peripheral line was placed in his left arm just before the central line was removed. It is very important for the hospital staff to have IV access on a patient on a respirator. If something goes wrong they can quickly act by giving medication and fluids. IV access can mean the difference between life and death in a critically ill patient.
I had asked the nurse to put the peripheral line in Michael's left arm because he is right handed. They had put his arterial line in his right arm and this prevented movement of his arm/hand. The doctor tried to put the arterial line near Michael's left wrist, but he was unable to get proper access, so it was placed in the right wrist. When Michael regained consciousness I knew he would want to use his right hand.
IV lines must be flushed with saline daily and need to be removed after 3 days. Michael's peripheral line was placed before he left the ICU. I asked about having it replaced when he got to Select. I was told that it was fine because it was able to intake fluids. I did not noticed any sign of infection, discomfort or misplacement so I stopped complaining. He has been at Select for over a week.
Today his line was removed and replaced with another peripheral line. The nurse said that it should be replaced every three days. She told Michael to tell the nurses to flush it each day! I said the staff is responsible for IV maintenance, not the patient! She said she would pass along the information during report this evening. I wrote a note on Michael's white board to flush his line daily and change it on May 1.
Michael wanted the line to be removed, I told him that would be possible when he is medically stable.

Small Steps

Michael was changed to a nasal cannula this morning, and his Trach was capped. He is able to speak! He was shaved in preparation for electrodes which will be placed on his throat. Hair acts as an amplifier of current, so it has to be removed. At 4PM he was able to stand for a second (with help) and pivot to a chair! The speech therapist came in and attached electrodes to his neck and gave him shocks to promote swallowing. OUCH! He got to suck on three glycerin swabs and he was able to feed himself ice chips (one per minute for 10 minutes). He was still sitting went I left at 6:30 PM and he was doing fine. He is in good spirits, though he is frustrated at not being able to do more.
Tomorrow he will have a modified Barium Swallow test to determine his ability to swallow. The goal; to see if he can eat!
All the health care workers who came in today couldn't believe the progress Michael has achieved in a week. Baruch HaShem!
I can't believe how I used to take breathing, sitting, walking, eating and talking for granted. Now I am so excited about each of these small steps forward.

This morning I called Rocky Mountain Cancer Center to move Michael's long term follow up appointment from April to June. I was told that Michael's doctor (Jeff Matous) was at PSL today, so I went to find him. None of the staff on the 3rd or 4th floors had seen him yet, so I left a message for him to come up to 5 and see Michael. One of the nurses saw him and gave him the message. Dr. Matous came up to see Michael and told Michael how amazing he is. What a survivor! He has seen people with intact immune systems succumb to H1N1. Michael is still fighting!

Emails for Barbara

If you wish to email me directly my address is:
barbara@schwartzcomputer.com

Caregiver/Prayer

When Michael was going through his treatment for Leukemia, I would often mention how "we" were going through chemotherapy/radiation. Obviously, Michael was the one who had the treatment, however the caregiver also "goes along for the ride". I often explain to people that cancer is like being on a roller coaster in the dark. You never know if you are going up or down. If you think you are handling the roller coaster a tidal wave comes along and hits! You just have to hold on.
It is important for the caregiver to eat right (moderation in all things), try to get some sleep and keep a positive attitude. Strain can get to any caregiver, no matter how much support they have. While Michael was critical, I would wake up and not know where I was, in the confusion I would feel my neck to see if I had a Trach!
While on the journey to recovery it is necessary to be as informed as possible. However, being informed isn't enough. A support group is essential! We don't have an extended family in Denver as support. Thank you, Will and Yaakov for coming in as relief. Your support was invaluable.
We are so lucky to live in Denver. The community has become our family. They provide a hand to hold, a shoulder to cry on, and a listening ear. They are encouraged by the improvements and pray for a speedy and complete recovery.
During each hospital stay the social worker or care manager ask if I have a support group. I respond, "I have a wonderful support system". The Denver community has cooked for me, stocked the refrigerator for Passover, provided walking company to and from the hospital, brought food to my house or hospital, kidnapped me for meals (we are taking you now for lunch/dinner), picked me up after Shabbat/Yontif, and started an evening Maj group so I could play. They came to the hospital to keep me company when I wasn't allowed to be with Michael. The doctors in the community offered their expertise. This was invaluable, THANK YOU! The advise I got helped save Michael's life and certainly made him more comfortable.
Every aspect of support was necessary to aide in Michael's recovery. Prayer, is very important and very necessary for recovery. The community prayed for Michael and continues to do so, and this has made all the difference! We are very fortunate that people are praying for Michael all over the United States and in Israel. Friends (and family) have gone to the Kotel and to the Kever of Rabbi Meir Baal Haneis to daven for Michael and I have seen miracles! Thank you all! Keep up the good work!

GR8 Progress!

Today Michael's brother, Yaakov, took the morning shift while I caught up on some errands and went for a much needed visit to my mother (who has 24 hour care and is on hospice care).
1.Michael sat up in the cardiac chair. 2. He stood up three times with the help of 2 people. 3. He was able to tolerate 20 minutes of room air (no 02 into the Trach). 4. His trach was downsized and capped so he could speak. His first word to his brother was "hello". The first sounds I heard were yelps of pain. His first words while I was with him were "thank you". When his Trach is capped he can speak. It will be uncapped at night so he can breath more easily. Tomorrow it will be capped again so he can speak.
We talked about what he experienced while in the ICU and what he remembers of being at Rose Medical Center (RMC). He admits the drugs made him hallucinate and clouded his memory. He told he that he knows what he wants for his birthday, a new watch. I asked why he needed a new watch? He said because his watch was smashed and put up on the walls of the ICU. I said that I took it home and it is just fine. One of his hallucinations was that he no longer had feet/legs, they had turned into blue umbrellas. He has bright blue boots which protect his heels. He thought they were umbrellas! He figured he couldn't move because his legs were gone! How horrifying. No wonder he was so frightened. I could see from the look in his eyes in the ICU that he was terrified. I tried to tell him that he was getting better and that he was in the best ICU in the country for lung problems. He doesn't remember any of that. He has no recollection of his time at RMC at all. The only thing his does remember about RMC, was one of his guests and drinking Mucomyst (it smells and tastes like rotten eggs-it is taken before a test to protect the kidneys). Taste and smell can be very powerful memory enhancers.
He still has his sense of humor, the nurse asked, "where do you want your insulin shot?" His reply, "YOUR arm". We all laughed.
If you are wondering how his mental faculties are, he did the word Jumble in the Denver Post today! I needed help with it.
He was disappointed at missing Passover. I told him not to worry, we will have a Seder when he gets well.
He asked for a computer and he said he would try to write a few emails tomorrow.
The doctors' goals for the week are to convert to a nasal cannula and cap his Trach.
He says he wants to go home by the end of the week. I asked what will he do about stairs in the house. He said that he will be doing stairs by the end of the week. I hope so, but I believe he still needs to be able to sit before he can walk and before he can go up stairs! I know he is motivated and he often surpasses the goals set by the physicians. Go Big Mike!

Blood sugar

A patient may be given steroids to decrease inflammation. One of the side effects of steroid use is a raise in blood glucose (blood sugar). A patient who is pre-diabetic or is actually diabetic will show an increase in blood sugar. They will need insulin to counteract the raise in blood sugar.
When reading a lab report, check to see what the lab indicates as a normal blood sugar as the values vary slightly per facility.
It is important for such patients to have their A1C level checked every three months. This value indicates the amount of time a patient's blood glucose is above normal. A value >7 means that the patient's blood glucose is not controlled. According to the American Diabetes Association (ADA), blood sugar before eating should be between 70-130 mg/dl. It is important to manage blood sugar, as elevated blood glucose can cause to sever damage to the body. It can lead to blindness, neuropathy (nerve damage), kidney damage, etc...
Please check the ADA website for more information on Type 2 Diabetes.
After the patient finishes the course of steroids, they may still have Type 2 diabetes requiring medication. Some patients require insulin, others may do well on oral medication.
Fluctuations in blood sugar can cause behavior changes. Patients maybe cranky when their blood sugar is elevated or extremely low. Please check the ADA website for signs of hypoglycemia (low blood sugar) or hyperglycemia (elevated blood sugar).
The management of diabetes is a triangle. It demands a careful management of diet, exercise and insulin. Exercise can lower insulin requirements. A well managed diet may also reduce insulin requirements. A diabetic patient in the hospital with limited mobility will have increased insulin requirements.
The ADA website lists warning signs of Diabetes. Please see your doctor if you think you may be diabetic.

There is no place like home....

Today, Michael's brother, Yaakov came in from Baltimore. Yaakov, Michael and Will studied Mishna via phone. It is so nice to have Yaakov in town to keep an eye on Michael while I am not there. Yaakov taught Michael the sign language sign for HOME.

On Shabbat Michael tried to get out of bed without any help. That didn't work so well. Now there is an alarm on his bed to remind him that he needs help to move.

Michael asked for the Denver Post today. He and Yaakov discussed topics in the news.

Today I went around and annoyed the staff until they took care of Michael. He needed to have his tube feeding replenished. He needed Respiratory Therapy (RT) to allow Michael access to the suction wand. He needed to get up into a cardiac chair.

The doctor came in to talk to us today. Michael asked "When I can go home?" It is the number one question on his mind! The doctor seemed to think it would take a few more weeks before he could leave for a physical therapy facility like Spalding. The closest facility is one floor up. He said the Michael is progressing nicely. It is surely not fast enough for either of us.

Shabbat

After Shabbat I drove Aaron, Shoshana and Rebecca over to visit Michael. I called and spoke to his nurse who said Michael had a great day. (I think he might disagree with that). We got there around 9:45 PM.
The water that is used to humidify his oxygen was leaking and there was a large puddle on the floor. We informed the nurse of the problem and she changed out his bottle and hose. This cut out his oxygen for a bit so she turned up his settings (to give him more oxygen). I hope she remembers to turn the O2 down.
Upon arrival Aaron said Havdallah for his dad. I asked Michael what he did? He Davened (prayed). He got to sit up once today. He said he tried to get out of bed by himself, but had no luck. It is hard to get up with all the stuff that is attached to him.
He said he hasn't been given his eye drops in 2 days. He hadn't had any mouth care today and didn't get his night medicines (this discussion was @ 11 PM). I went to talk to the nurse. She came in and gave him his eye drops and left them in the room. They had been in the room previously and went missing. Yesterday the nurse on duty said she would put the eye drops in the pharmacy box with the rest of his medicines. She thought the eye drops had run out. There is no way they could have run out as he only needs one drop per eye and the container lasts for months. They just opened a bottle for him on Monday.
When I left at 11:30 PM I reminded the nurse to give him his medicines, and do his mouth care.
I am sure Michael would like to have guests on Shabbat as it is very lonely there for him. I will try to walk to PSL next Shabbat. I now know all the non electric ways to enter the building. I also have found the stairs so I can walk up to the 5th floor.

Milestones

Today Michael got to sit up again. He practiced leaning forward (this takes abdominal muscles),and moving his hips so the he can move toward the back of the chair. Today was the first day since March 25 that his feet touched the floor!

He has stayed on the Trach collar for 48 hours at 50% oxygen. Once he progresses to 30%, (equal to room air), then he can progress to a nasal cannula!
He was in good spirits today, but indicates to everyone that he wants to go home!
We exercised his legs and arms today.

The Speech Therapist didn't come in today, so he didn't get shocked or any ice chips.

I brought him a Siddur or hopefully he can Daven on Shabbat. His attention span is still pretty short. I am sure it will improve once he is no longer on the sedatives.

Today he asked why he is getting Thyroid Hormone. I explained that his labs showed that he was hypothyroid. This is not unusual for someone in his condition.

As easy as breathing

When I came in this morning Michael was reading a magazine and holding it with both hands. He was unable to use his right hand until today. He also wasn't able to lift his hands towards his face until today!
We played hangman. Today was the first day he was awake for most of the day. We joked around and I laughed.
He keeps asking, "when can I go home?" I tell him he has to be able to breathe and to sit up.
The lyrics to a song are "loving you is an easy as breathing". Until this experience, I thought that was a love song. Now that I see how difficult breathing is, I am not so sure.

Trach Collar

Michael was able to stay on the Trach collar for 24 hours, we hope that he can continue this progress. He was still on the Trach collar when I left this evening and his O2 saturation was in the 90s, good job Michael! The plan is to keep him on the Trach collar as long as he can tolerate it.

Ice Chips

This afternoon Michael was moved to a cardiac chair (it is a bed which becomes a chair). He got to sit up for 45 minutes! While in the chair the speech therapist shaved his throat and then attached electrodes. She applied current and then asked Michael to swallow. This was done for 30 minutes. This procedure helps to reestablish swallowing.
One of the really exciting things that the Speech Therapist does is provide ice chips. Michael has not had any food or drink by mouth since March 25. Today he got to have 10 ice chips. The speech therapist gave him one ice chip per minute for 10 minutes. She explained that the lungs can handle 90cc of fluid at a neutral pH without developing aspiration pneumonia.
Mouth care is very important before having the ice chips. The mouth has a great deal of bacteria, this makes foods acidic. The lungs cannot tolerate acidity. She gave Michael his special tooth brush that has suction on it so no fluid will go in his lungs. He was able to use his right hand to brush his teeth. This is the first time he could brush his teeth!

Progress

Michael wrote his first word yesterday, Call.
Today he was very alert. He was very communicative this morning. We practiced some ALS (American Sign Language) He can sign A-E. He can now hold a magazine and shake hands. We did some exercises together and he is improving. He spent all night long on the Trach collar and his O2 saturation (sats) stayed in the 90s!

Good Day

Michael was sleeping at 8PM, he was still on the Trach collar and his O2 saturation was very good. He missed his brothers' call as they didn't want to wake him. Hopefully, he will be up for Mishna tomorrow. All in all, I would say he had a good day. It is so nice to see progress.

Medication

It is so important to ask what medications a patient is getting.
Today, I noticed that the nurse replaced Michael's Fentanyl patch. I asked how many mcg is the patch for? She replied 100 mcg. I said that the doctor told me yesterday that Michael will continue his wean from this sedative and would get a new patch at 50 mcg. Why did he get this high dosage? She didn't know. Immediately I went to the doctor, (his desk is right outside Michael's door) and asked about the dosage. The doctor said that Michael's patch wasn't supposed to be changed until tomorrow and it should be 50 mcg. I said fine, but it was changed today and is 100 mcg. He was confused and said he would look into what happened. He came back to me and said that it was a computer error and tomorrow the patch would be replaced with the correct dosage.
Michael is sleeping a great deal. The nurse agreed that Michael is over sedated. Hopefully he will not have any trouble weaning from this drug and will continue to improve.
I also noticed that Michael's peripheral line dressing hasn't been changed since he arrived. The nurse thanked me for being observant and said the dressing would be changed.

Michael had a good morning. He was changed back to a Trach collar on 40% O2. He tolerated OT and PT well (his sats stayed in the 90s). If he continues to do well they will keep him on the Trach collar over night.

PT and OT came and he was able to sit for 4 minutes! Then he continued his arm and leg exercises lying down. He was able to participate by moving his limbs. He is much stronger than yesterday. He is still very weak and needed quite a bit of help to move his limbs, but he could move!

Muscle and Lung Damage

One of the side effects of paralytics and steroids is damage to muscle tissue. Dr. Clark told me today that in many cases the damage can improve over time. He also said it was necessary to treat Michael with these drugs in order to give him a chance to survive. He said survival beats movement. Once you get passed the living part, you can try to fix the movement issues. If you don't get past the first barrier, the second is moot.

High levels of oxygen cause lung damage. The lungs need oxygen. It seems so ironic that O2 which is necessary for life can cause such damage.

In America, we believe more is better. We should change our thinking; just right is better. Sometimes more is not better, it is just more.

10 PM

I went back to the hospital at 10:15PM and stayed until he feel asleep. We held hands and he seemed comfortable. I know it is difficult to sleep with all the alarms going off, but he seems to be managing as best he can. The night staff seems to be attentive. The CNA was with him when I got there and the nurse checked in twice while I was there.

Itty Bitty Bed

Michael is over 6 feet tall and is too long for the normal hospital bed. Kudos to Select for getting him a longer bed!
The bed has a system of air sacs which inflate and deflate to relieve pressure on the patient's body. This system is very important for the bedridden.

Speech Therapy and the Dietitian

Today I met the Speech Therapist (ST), Traci. She put a speck of blue dye in Michael's mouth. The dye acts as an indicator of swallowing ability. If it comes out the Trach, the patient is not swallowing properly. If it doesn't show up, then the patient's swallow is intact. Patient's with an intact swallow can be progressed. Michael has blue dye coming out his Trach :(

Michael was very fatigued this morning. He appeared more awake this evening.
I worked with Michael to do some passive range of motion with his limbs.

I met with Danielle, the Registered Dietitian. We discussed Michael's current weight, his IBW, (ideal body weight), insulin requirement, tube feedings, nutritional requirements, gut motility. It was wonderful speaking to a fellow professional. We see eye to eye.

Dissapointments and Setbacks

The Respiratory Therapist (RT) wants to change Trachs, as the one Michael has is too long for his airway causing discomfort and a great deal of coughing. The doctor who put it in was probably thrown off by the huge amount of swelling Michael had at the time of surgery.
The RT was able to decrease the cuff size on his Trach this morning. Michael was actually able to say a few words when his Trach was covered! Unfortunately, he couldn't tolerate the change and his cuff was fully inflated once again.
Dr. Clark, the Pulmonologist, came and spoke to us today. He spent an hour reviewing Michael's chart. He would like to provide us with a game plan. Right now, his plan is to go slow. Michael's sats (O2 saturation) were low this morning on the Trach collar, so he was changed back to the C-PAP. Dr. Clark thinks Michael is having difficulty breathing right now due to a fluid imbalance. They will increase his diuretics in hopes to create a dryer lung. They may take him for another lung CT.

Increased Oxygen Requirements

I was told that Michael did not sleep well last night. Michael indicated that everything was fine.
I had mentioned that yesterday the nurse at RMC gave him an additional sedative for transport and that possibly made him sleepy during the day. I am also wondering if RMC gave Select correct information on the amount of sedation he was getting there. This morning he seemed over sedated. When PT tried to sit him up his O2 (sats) quickly fell to the low 80s. He was dizzy, they had to let him lay down right away. They did try to assist him with movement of his arms and legs. After PT I noticed his sats stayed low 87-88. The alarm at Select is set much lower than the ICU which goes off at 88. The alarm started going off at 84, he actually fell to 82-83. I was very concerned. Staff came in and looked at him and then went to find equipment they needed to suction him. They didn't seem overly concerned. (I was freaking out-quietly on the inside). RT came and suctioned him and put him back on the C-PAP. His O2 requirements were higher than what he was doing well on yesterday. Last Night they got a sputum sample to culture. Michael has been off of antibiotics for 5 days, so he could easily have gotten an infection. My concern was that if his sats were low that he may be sick. They will also monitor temperature to look for fever. PT did reduce the size of the cuff on his trach. (A cuff is used to prevent O2 from leaking around the trach). The cuff size is reduced to let air flow around the Trach to slowly accustom the patient to regular breathing.

Michael is settling in

Michael is settling in at Select. He is just 2 floors up from the Bone marrow unit where he spent 3 weeks in 2006.
His nurse is very good at reading lips. She asked him; What day of the week is it? He answered Monday. Where are you? PSL Why are you here? Rehab. He answered all the questions correctly!
They seem to be taking good care of him.
Michael got to listen to most of the Mishna with his brothers tonight. He was tired and it was difficult for him to hear over the whoosh of O2 so he didn't get to hear all of it.
May he continue to recover quickly.

Michael transported to PSL

Michael was transported to Select-North (in PSL) this afternoon. They seem competent and caring. Michael's medical records didn't follow him to the new facility and they had to send someone to pick up the missing info. Michael's trip in the ambulance was uneventful. They did have emergency equipment in case it was needed, but Baruch HaShem, Michael's O2 was fine the whole trip.
I was at the new location to greet him. I drove there, parked and went up to the floor before Michael arrived. When he arrived they switched him to their monitors. Immediately his O2 saturation decreased radically (66). I told the CNA if your monitor is accurate; please get someone in here immediately to take care of him.
Michael didn't seem to be in distress, so the reading must have been wrong. Respiratory Therapy came right in and helped the nurses adjust his airflow. His sats stayed low so they replaced the Trach collar with the respirator. He immediately went to the low 90s. The RT said the monitor was incorrect; he wasn't in the 60's. (You will often see false readings if someone's finger is cold, etc.) Michael was allowed to rest awhile and when he was ready he was put back on the Trach collar. He will go back on C-PAP later this evening.
The wound care team saw him upon arrival to access his skin care. They noticed that Michael's feeding tube was super taped on. They said this should never be taped. They removed the tape, ouch, watch the hair! They cleaned the wound thoroughly.
The speech therapist will evaluate his ability to swallow and access his ability to down size his Trach, so he can talk!
I requested that the doctors will do a number of lab tests including Thyroid function. The blood tests will be done tomorrow. They will also x-ray him tomorrow to look to see how his lungs have progressed. They will also do some swallow tests.
The doctors and nurses desks are right outside Michael's room! I will always know where to find them. They cannot hide.
Michael continues to progress.
I do not know Michael's schedule for OT, PT, ST or when lab tests and x-rays will be preformed. If people do want to visit:
1. They must be healthy.
2. They must wash their hands.
3. They can only stay for a few minutes.
4. Children should not visit.

Moving to another facility

Michael will move to Select at PSL this afternoon. Their job is to wean him from the ventilator and for PT and OT.
Michael sat up in a cardiac chair today. (It can be placed in a fully reclined position and can move to a sitting position, so the patient doesn't actually have to use muscle to sit up.) The chair was obviously made for someone much, much, shorter. He was very uncomfortable. His legs went well beyond the foot rest. They made him sit up for an hour and he was very unhappy. Oxygen wise he did great! He was just squished! Poor thing.

Michael will be transported by ambulance with a ventilator, cardiac monitor, his chart and all the CDs of his lab tests, X-rays, etc.

Eyes

Patients often keep their eyes open when they are unconscious and an ointment is put in the eyes to protect them from drying out. The problem with an ointment is that it makes vision difficult, everything appears blurry. This obviously isn't a problem while unconscious, however, it is a problem when the patient is awake. Michael has constant dry eye, it is a side effect of TBI (Total Body Irradiation). I have asked the doctor to stop the ointment for Michael and give him artificial tears instead.

Sunday Night

I spoke to Michael's nurse (Mike), at 10:43PM. Mike previously took care of Michael last week and he couldn't believe the improvement! Michael spent the day on the Trach collar with oxygen blowing into the opening in his neck, and is now back on the C-PAP @40% O2 5/5. This will allow him to rest during the evening. Breathing requires a great deal of energy. Mike shaved Michael! He is clean shaven, not even a mustache! I am glad he told me because I wouldn't recognize Michael when I arrive in the morning. I am not sure Michael realizes it is the Omer, it is hard for him to believe that Passover isn't coming up.
The goal for tomorrow morning is to have him up in a chair. This seems like such a small goal, but for Michael it is a giant step on the road to recovery. I brought in a ball to squeeze that Mrs. Mabo (Karen's mom) sent from Florida. Mike said Michael has been using it. He seems resistant to learning ALS (American Sign Language). I brought in a book and have tried to practice signs with him, but his mind is in too much of a fog from the extreme fatigue and high doses of sedative. He has tried to write but is not able to do that yet either. He can shake his head yes, or no, and he shrugs his shoulders (I don't know). When I ask him if he is comfortable or if he wants to be turned, he shrugs his shoulders.

Ready for acute rehab center

The doctors say that Michael is ready for the acute rehab center on Monday or Tuesday! He will be evaluated on Monday and will be transferred via ambulance as soon as a bed is available.
His sedatives were decreased this morning and he is comfortable.
He sat up again this morning and did some exercises lying down.
His O2 level is good and he is only on a Trach collar (air blowing at the Trach). He will be changed back to the C-PAP at night.
Good work Michael!

Denver Post: Apathy adds insult to injury

There was an article in the April 16, 2010 Denver Post titled Apathy adds insult to injury, about a hospital staff's failure to diagnose an injury on a boy who had difficulty communicating. It took 6 months before the doctors figured out that the boy had a broken femur (large bone in the leg)! The parents insisted that something was wrong, they asked for a bone scan, their pleas were ignored. They were persistent until they got a satisfactory answer as to why their son was in pain. This took 6 months!
It is so important for healthcare advocates to "go with their gut". Keep asking why isn't the patient improving? Go up the chain of command. If you do not see patient improvement, ask to speak to the "person in charge". That may differ depending on the setting. You may ask to speak to the nursing supervisor, the ombudsman, the physician in charge. Use resources in your community to get pull. Ask all your doctor friends for advice on which is the best hospital/ER/Treatment center, for the patient's illness/injury. The patient advocate is the difference between life and death.
Sometimes the patient refuses to seek help. It is the advocates job to encourage the patient not to give up. It is so important to seek for the right answer in patient care. As Michael says, "You can't be replaced, but maybe you can be repaired".

After Shabbat

After Shabbat, I said Havdalah for Michael and his brothers called to study Mishna with him.
The nurse told me that for the first time Michael slept all night.
Michael was very tired from sitting up in the morning and from moving his arms and legs, but I think his fatigue may also be related to the amount of narcotics he is receiving.
I will ask the doctor if the narcotics can be reduced.

Living Will

It is so important to fill out a living will and keep a copy with you.
When Michael went to the doctor on March 23, 2010, he was immediately whisked to the hospital. We were told that he needed 1-2 days of IV antibiotics and some oxygen. Two days later he was intubated and put into a coma to allow his damaged lungs to heal. No one can ever imagine their loved one unconscious, on a ventilator with a feeding tube.
A living will indicates the measures which doctors can use to preserve your life. Michael filled one out in 2002 when he first got Leukemia.
Long before Michael and I married, we discussed living wills. I had worked in ICUs and CCUs in Michigan. I told Michael that I did not want to be kept alive intubated with a feeding tube. I had seen too many people clinging precariously to life with extreme measures. One such person was my brother. I told Michael, if G-d forbid, something terrible happens to me and there is no hope, just "pull the plug". Michael had a totally different perspective. He told me that he did want to be on life support, because the doctors would make him better, so right he is.
Part of the Living Will indicates directions for burial. Do yourself a favor and decide burial issues long before you will need them. Find a mortuary, cemetery, Jewish burial customs include, a plain pine box and the need for a Shomer. If you have a mortuary in mind they can easily help you when the time comes, because no one can handle making funeral arrangements during this time of great sadness.

Medical Power of Attorney

Please think ahead. It is easy to fill out a medical power of attorney allowing a loved one to make choices for you, if you are unable to do so.

Will

Most attorneys will tell you to make a WILL once you have anything of worth. It is so important to fill out a Will once you have children. Do not leave this up to the court system! If your money is limited and you are worried about the cost of making a will, look on line, there are guidelines for making a will. If you have significant assets, take the time to talk to a Lawyer.

Medications

One very important thing to remember is to ask what medication the patient is getting. If you do not know what the medication is for, ask. Keep track of the medications the patient is given and learn how the medication is administered. Is it via IV, by mouth (medical term PO), is it sublingual (under the tongue), via inhaler, nebulizer, inter-muscular injection, subcutaneous injection...
Learn the dosage and the number of times per day (medical terms: bid 2x a day; tid 3x a day, qd = every day) the drug is administered.
If the patient is home, either memorize the telephone number of the local pharmacy or write it down where you can easily look it up. Learn where the nearest 24 hour pharmacy is and keep that number handy too.
Everyone should learn the names and dosages of their medications and what they treat. People should know what drugs should be taken together and what should be taken separately. For example if you take a diuretic for high blood pressure, you should also be on a Potassium supplement (K+), because diuretics leach out the bodies K+. If you stop taking the diuretic and should also stop the K+. K+ imbalance can lead to heart attack. Do not take Calcium and Iron together, they bind in the gut and are excreted, so the body does not absorb either one. Learn when you should eat when taking medications. Should you take a pill on a full stomach, or empty stomach?
Do not take your pills with OJ or any citrus beverages, they alter the uptake of many drugs. Take a drug with water or milk these are neutral pH and this is how the medication is formulated to work best.
The most reliable person to ask about medications is your pharmacist. If you have questions about side affects or any question in general, ask the professional!

The other day I noticed the nurse preparing to mash up Michael's medications in order to put them in the feeding tube. I told her that 2 of the pills are to be placed under the tongue. She looked up the method of administration and noticed that I was correct. She said it was a good thing I mentioned the method of pill administration because it wouldn't have worked if she had put it in the tube feeding. oops!

Michael had a good Shabbat.

This morning when I walked into his room, Michael motioned, "When can I go home?" I told him that he isn't ready to go home yet. He was very disappointed. I told him that the doctors think that he will be ready for an acute rehab setting sometime next week. A nurse is scheduled on Monday to evaluated him for transfer. If he is deemed ready, he will transfer via ambulance by Wednesday. If he isn't ready she will have to return to reevaluate him. I told him the next facility would be very aggressive about PT and OT and weaning him from the vent. That seemed to console him.
He is doing great. He is now using the C-PAP at night. This morning he was put on the Trach collar from 6AM until 6PM! That means he was breathing on his own with 50% oxygen and then turned down to 40% O2!

Physical and Occupational Therapy (PT and OT) worked together to sit him up for 4 minutes. Then they laid him down and helped him with arm and leg exercises. That really tired him out. Not surprisingly his right arm was the weakest. While Michael was unconscious I could only do passive range of motion exercises on his left hand/arm and both legs. His right hand had an atrial line and it would start to bleed if I moved it. PT and OT were amazed that Michael had maintained flexibility and some strength. I told them about the medical journal article that I had showed the doctors concerning passive range of motion on patients on ventilators who were on paralytics. I told them that I had been working with his legs and left arm. The article says that it is important to start passive range of motion exercises ASAP. Patients who had this therapy while sedated recovered faster then patients who received no therapy. In the past medical personnel believed that it was important to let these very sick patients rest. They believed food and exercise caused stress upon the body and lengthened recovery time. We now know the reverse is true. It is so important to feed patients on high levels of O2 and exercise is also imperative to a return to health.

Michael continues to progress.

He was assisted by 3 people today to sit up with his legs over the side of the bed. It took us three tries to get him up because he had difficulty breathing, but he did it!
He is currently on a C-PAP (he is breathing and when he doesn't take a breath, it breathes for him). Today he was fitted with a Trach collar and for an hour he was breathing on his own with air blowing in the Trach tube. This is a method of weaning him off the ventilator. He did great! He is still on high levels of sedative for pain, but he is able to communicate. He is very tired. They were going to help him sit up again before Shabbat.

My Email

If people would like to email me with comments about Michael, you can send your comments to barbara@schwartzcomputer.com .

Michael had a great day.

He is more comfortable. He is breathing better. He was put on C-PAP for part of the day at only 50% oxygen and a pressure of 5! What a big change from 100% and a pressure of 18, which is the highest setting.

The doctors came in to look at him today and it is difficult to believe the improvement. They were amazed he survived! So far so good. Thanks for all the prayers, they have made such an amazing difference! He is not out of the woods yet, but he is certainly on his way. No one wants to speculate on how long this part of the recovery will take.

Today I got a call from the hospital at 2PM (during "quiet time"). The nurse said that Michael is fine, but he wanted me to come back to the hospital. When I returned I asked the nurse, "How did you know he wanted me?". She said, "It wasn't easy to figure out, but we did!"

May HaShem continue to help Chaim Michoel Yitachack ben Esther Vichna improve and may he warrant a speedy recovery!

Thursday morning was so much better than yesterday!

It doesn't take much to make Michael comfortable. He wants to be moved in bed, he wants mouth care, (brush his teeth, mouthwash and Chapstick for his lips) and he wants his brow wiped. As soon as those needs were met, he was so much more comfortable!

We are trying to communicate today. I have added Kiss and I Love you to his wordlist. He just needs to point to the word and then I know what he wants. Today he was trying to make me understand something (it looked like trying to make a horse gallop to me). I said "you want to ride a horse?" The look on his face was so funny. He just threw up his hands and rolled his eyes! Eventually, I figured out he wanted his brow wiped. Today I gave him the control to call the nurse and with a bit of struggling he was able to press the button!
Keep up the good work Michael!

The docs think Michael will be able to move to an acute care long term facility next week. I have been checking out places nearby. He requires a place that can wean him from the ventilator which also does aggressive Physical Therapy. Luckily we have some very qualified places nearby.
This afternoon they will try to wean him completely from one of his sedatives.

Michael's status at 11PM

The nurses where able to move Michael so that he is now more comfortable! They cleaned out his mouth pretty throughly and now he is much more calm.
ME TOO

I called the floor on Wednesday evening. They figured out why Michael was so uncomfortable! He was sitting on one of his lines. Once they moved him he felt better and there was improved flow through the line! He continued to do well during the night.

All I asked on Wednesday was for him to be moved, I glad someone listened.

Terrifying Day

I have been through a lot with Michael over the past 8 years, but today was probably the most terrifying day of my life. I understand that weaning from the drugs Michael is on, is very difficult, but I was not prepared to see him in such pain, such fear and seeing how uncomfortable as he was today. The nurse & I just didn't get along. I wanted her to change Michael's position, provide mouth care for him and keep him comfortable. She made herself scarce. I had to get other nurses to help me with Michael's care. At one time during the day the nurse had the bed on rotation. (It moved from side to side. She failed to make sure that there was sufficient slack in Michael's line attached to the Trach.) The Trach became dislodged from the vent! I called for help. Many of the staff came running, not his nurse.

I spent the day providing mouth care, washing him with a washcloth, moving him and trying to explain to him how to communicate. His alarms were going off all day. I am home now, but in the back of my mind I can still hear that sound.

Michael continues to progress as expected. Now is the time to select an Acute Care facility which specializes in helping patients wean from the vent. I visited one location yesterday and one today. I was told to check out each place during both the day and night shifts.

I keep falling asleep, so I am off to bed.

Physical Therapy

I have been fighting for Michael to receive physical therapy (PT) since the day he arrived in ICU. I brought in recent medical journal articles on the importance of range of motion PT in patients who are unconscious. The article stressed that patients who were unconscious, who received PT, had a decreased amount of neuropathy. Initially the doctors ignored me, they said that patients get PT when they go on to an acute rehab facility. They were aware of the literature, but the hospital doesn't have PT who work with patients who are unconscious. They will only work with patients who can participate in their PT. Every day during rounds, I would mention the importance of nutrition and PT. The dietitian supported my view of nutrition and he has received nutrition during most of his stay. I have a friend who has pull at the hospital. He put me in contact with the head of nursing. As soon as the head of nursing became involved Michael's care greatly improved. People starting listening to my concerns about Michael's care. I mentioned the article to the head of nursing. I mentioned the article to nursing. One of the nurses spoke to me about sending her children to day school. She asked if she could pass the article along to PT. PT was really excited about medical journal support of their work. The doctor in charge of the ICU changes each week. When Dr. Michael Schwartz, MD came aboard, he agreed to order nutrition and PT for Michael. He acknowledged that the hospital doesn't do PT on unconscious patients, however someone from PT would show me what to do and I could work with Michael. I had been moving Michael's hands and feet every day, but was encouraged that PT would show me correct Passive Range of Motion techniques. The PT who showed me what to work on acknowledged that Michael was still very flexible. Baruch HaShem! On Tuesday when Michael was somewhat conscious, I asked him to move his hand or feet and he was able to help me with his PT! GO Michael!

Michael continues to progress.

The doctors told me today that Michael was the sickest person that they have seen who has survived H1N1. They continue to wean him off the sedation and his need for the ventilator is decreasing.

Today he opened his eyes for me. He was able to nod yes or no. He can wiggle his toes and move his arms and shoulders. He is very frustrated because he isn't strong enough to move his upper body and he can't speak. His blood pressure rises when he is agitated and I do try to get him to relax. Better said than done.

I am now going to acute long term care sites in Denver to evaluate if they can take good care of Michael. He will probably go to an acute hospital which takes care of respiratory patients. The current expectations are up to 2 more weeks in ICU, then transfer to acute care for 5 weeks until weaned from vent. Possible a rehab facility after that. If everything continues to improve we are looking at about 3 months of care.

I can't wait until he can come home!
Yaakov and Will called tonight and I held up the phone to Michael's ear so that the brothers were able to study Mishna.