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.