A Routine Re-Visited

Today was Cathy's first 'post-transplant' clinic visit. We both enjoyed the cruise down to UCLA in the morning - sippin' coffee and listening to oldies. Prior to becoming to sick, Cathy and I used to make clinic days a little extra special by visiting a museum or having a special lunch after clinic. One of our favorite places to have lunch is a little diner in Toluca Lake, near the Warner Bros. and Universal Studios. It is a great place to people watch. I was a little choked-up as we walked into the diner together this afternoon. Cathy was also a little overwhelmed with the moment. The moment became even more special as I watched Cathy completely enjoy her patty melt. I could almost use the word Ecstasy to describe her expressions as her devoured the sandwich. (I guess my cooking this past week has a little ways to go before it compares to this diner's fare). Today alone made the past six months worth while: A warm & sunny So. Cal. day, a pleasant drive (read - no traffic), a good meal, and conversations about absolutely nothing.

Cathy is doing very well. She is tolerating her medication schedule well, her pain is manageable and subsiding, and her appetite is good. She is still dealing with numbness and tingling in her legs and feet. We are in a 'wait-and-see' mode to determine if this is a permanent or temporary condition. The pulmonologist at clinic today has referred Cathy for some additional physical therapy. Both he and the nurses at clinic were surprised to see Cathy walk into clinic today. Next week Cathy's G-tube may be removed and soon after the first of the year she will have the cancers removed.

We return to clinic next Monday - getting back into the routine.

Home For The Holidays

Cathy made it home yesterday in the early afternoon. It was a very exciting, emotional and busy day for her. It is going to take a few days to get settled into a routine. Monday we return to the hospital for Cathy's first post-transplant clinic visit. There are also follow-up appointments to be made in the near future to address the cancers and the feeding tube.

During the next few days, I probably will not be posting a daily update as I have for the past six months. I know that there are over three dozen followers of Cathy's Updates that read the blog daily and another three or four dozen that have been following on a less frequent routine. To each of you we would both like to express our appreciation for all the thoughts, prayers and positive energy. I am at a loss for words to describe how much this has meant to both of us. I am sure that many of you have never met Cathy or myself, yet we still felt the the support of your prayers: Thank you.

Tomorrow is Christmas, here again I cannot think of the words to describe our appreciation of that early Christmas gift Cathy received last month. We pray that the family of Cathy's donor has found some peace.

Merry Christmas to everyone.

Check Out Time Is 11 AM

I was asked to be at the hospital early in the morning for 'training'. So I am spending the night at the hospital. It is looking like tomorrow is going to be The Day. All the girls are healthy. Miles had a few sniffles last night, but no fever.

Cathy did very well today. On two occasions she was able to walk two laps around the unit. The occupational therapist washed and braided her hair again.

Cathy is excited about going home. The girls and I are so looking forward to having her home with us.

Fresh Air And Starbucks

This evening Cathy took her first breaths of fresh air in six months. We took a ninety minute tour of the hospital, making a final stop in the cafeteria for a Starbucks.

It is now looking like a Tuesday or Wednesday discharge for Cathy. The bug seems to have camped out at home. The doctors are adamant about not allowing Cathy home until the infections there have run their course.

Don't Bug Me

Not much new to update this evening. Cathy is walking and eating more and taking less pain medications.

The kids are still fighting the bugs at home. It doesn't sound like there has been much improvement there.

Last Weekend?

The tube feedings have been DC'd. Cathy is now taking in all nutrition through her meals and protein drink snacks.

Cathy walked a complete lap around the unit, on room air, on two occasions today.

Our hope is for Cathy to be discharged from the hospital and go home on Monday. Unfortunately, the bug at home is spreading to new victims. She has been here for 174 days, a few more days, if needed, should be a cake walk. Speaking of cake walks, Cathy has been given patio privileges. Sometime this weekend Cathy is going to have a chance to breathe some fresh air. The extra time here will give the teams more time to work on some of the 'issues' Cathy is still dealing with.

The Progress Continues

During the night Cathy's blood oxygen saturation started to drop. For a few hours she was put on a low flow of oxygen - 2 liters per minute. She was back to breathing room air by 6 am. This episode was no surprise to the doctors and nurses. Her body needs to remember to breathe deeply while she is sleeping.

Early in the afternoon she went for a short walk without oxygen. She was able to make about one-quarter of a lap around the unit: out and back.

Her food intake is way up. She is eating full meals, three times a day, with protein drinks in between.

There appears to be only a couple pages left in this chapter. Cathy is looking forward to starting the next one.

Don't Hurt Yourself!

Do somersaults, cartwheels, back flips, scream at the top of your lungs, and jump for joy!!!! Cathy is breathing room air!!!!! For the first time in over two years Cathy and I are breathing the same air!

The trach was removed just after 4pm this afternoon. Since that time she has been completely off of oxygen. There is an oxygen mask, with six liters per minute of oxygen flowing, sitting right next to her if she should need it. For now it is more of a security blanket thing. She has not attempted any moving around yet, but as her courage builds this evening I am sure she will.

Hospital discharge documents are being prepared. Discharge may have happened by tomorrow or Friday but we have asked to remain in the hospital over the weekend. There is a 'bug' running around at home so we wanted to have this weekend to let it run its course.

And just in case you didn't believe it the first time you read it, here it is again:

Cathy Is Breathing Room Air!!!!!!!!

My Blogging Days Are Numbered

Cathy walked only once today. Not because she didn't want to, but because the physical therapist did not pay her a visit and the nurses and care partners were too busy to assist her. Her apatite has improved to where she was able to eat three meals today.

She is doing well adjusting to using the speaking valve. Last night was a very emotional evening for both of us. We had our first real conversation since June.

Yesterday her trach was downsized, today the doctors discussed removing the trach completely. This may happen tomorrow morning. Cathy's improvements are coming so fast its almost unbelievable.

Home for the holidays is a reality. Home before this weekend is a looking like a real possibility.

Don't Blink, She'll Pass You Up

Today Cathy's physical therapy progressed to include some working out on a step. This workout replaced one of her strolls around the unit: four laps and several repetitions of lifting her weight up and down a step.

The procedure to downsize her trach went well. The next step for her is learning to tolerate the speaking valve.

During the past five plus months we have witnessed miracles in many forms. Cathy's progress during the past few days is nothing short of another miracle.

Take My Breath Away

Every day the improvements are becoming more and more obvious. I am hesitant about becoming too overjoyed out of fear of jinxing Cathy's progress (knock on wood). Today she walked three times, during two of those she completed two laps around the unit. She ate about three times as much today as she ate yesterday. She still has 'issues' but these are nothing compared to what she has been through. One of the doctors told us this afternoon that it is conceivable that Cathy could be home by this weekend. I get short of breath just thinking about that.

Tomorrow her trach is going to be downsized. The goal then would be to get her to tolerate the speaking valve. Not necessarily because the doctors want to hear her voice, but talking will exercise her lungs and help to ween her off the supplied oxygen. Every procedure represents a possibility for another setback. We have been told that downsizing is a very simple procedure that will take only a few moments to complete.

What a Gift For The Tree

It has been an eventful day for Cathy. She ate a good portion of three meals and went for a walk three times today. Each time she walked she went over one complete lap around the unit. On the second time walking she made two full laps.

The occupational therapist washed and braided Cathy's hair again today. That sure put a big smile on her face.

During rounds this morning, the attending physician commented about how good she was doing. He thinks that Cathy will be home before Christmas.

Catch Twenty-Two

Her improvement continues. Although Cathy only went for a walk once, she still displayed a notable increase in energy today. She was told that on Monday (maybe on Sunday) her trach will be downsized.

One of the remaining hurdles for Cathy to overcome is nutrition. Cathy must be able to eat (by mouth) enough food to support herself. As long as she is receiving the tube feedings she does not have an appetite, or desire to eat. However, her tube feedings cannot be completely withheld (DC'd) until she eats. This weekend we are going to work on eating.

Cathy has begun to develop tingling and numbness on the left side of her body. She was told that this may be a side effect of the anti-rejection meds. No one seems to be worried about this. She was given warm compresses. I don't know what these are supposed to do, but Cathy appears to enjoy them.

PS. 7pm update, we went for a stroll around the unit. Nothing like a Friday night walk along the promenade under a full moon.

Thirty-Six Percent Oxygen

Today was another day of progress: three laps walking around the unit and small portions of food for lunch and supper. The oxygen concentration in the air supplied to the trach collar was reduced to 36%. This is the lowest setting the 'cool mist' contraption can supply. What's next?

A small amount of blood started to come up with her lung secretions today. We have seen this before. They are trying to suction out the secretions before they become plugs. With the more frequent suctioning, trauma may be occurring in her airway.

Cathy went for her third lap around the unit after I arrived this afternoon. Several things were immediately obvious to me: she is moving with more ease, with more confidence and without hesitations caused by pains.

Out And Back

Another day of progress. Cathy was able to walk for a short distance today. Her diet was also 'advanced' today. She can once again eat real food, if you call pureed food real. Her tube feedings are being shut off from 8 am to 8pm in an effort to promote an appetite.

Cathy's incision pain is diminishing and her attitude remains upbeat and positive. Today is her seventh day on the trach collar. This morning the oxygen concentration in the supplied air was decreased to 40% (from 45%). It won't be long and she will be breathing room air for the first time in over two years.

Two Steps Forward

The results from Sunday's bronchoscopy indicate that there are no infections present and no rejection occurring. (Hurrah!) Today's x-ray shows improved expansion of the new lung and a reduction in the effects of the re-profusion injury.

Cathy passed the swallowing test (again). However, the doctor that performed the test told Cathy that she passed but no one else. Nothing was entered into her chart. Until something is entered into her chart she cannot eat or drink anything.

The physical therapist came by to take Cathy for a walk this afternoon. Unfortunately she stopped by as Cathy was about to be given the swallowing test. No walk or exercise today.

During the doctor's rounds this afternoon they discussed downsizing Cathy's trach. This will make it easier for her to use the speaking valve without struggling to breathe. They do not want to downsize to soon. A bronchoscopy cannot be performed through a smaller trach. They want to be sure that Cathy is breathing easy and steadily improving before this change is made.

Another Bump In The Road Behind Us

She did not have enough energy to go for a walk, but Cathy has recovered enough to do a little in-chair exercises with the physical therapist. She is breathing easier this evening, without a fear of suffocation.

The swallowing test was not performed today, maybe tomorrow.

A short update for tonight, but that's a good thing.

More Fluids

Just under a liter of fluids were removed from Cathy's chest cavity this afternoon. Although she is still under the effects of the sedation, during those moments that she was alert she has said that her breathing is easier.

During the bronchoscopy something was observed to raise concerns about Cathy asparating her food or drinks. Another swallowing test is set for tomorrow, until then she cannot take anything by mouth.

Struggles

It was another long night. Cathy is again having difficulties breathing and has no energy. Both a brochoscopy and an ultrasound are going to be performed today (starting sometime after noon). Her blood gas levels are still good, but those are just numbers. You can see it all over her face: tired, pain, struggling and scared.

Ch Ch Ch Changes

Shortly after Cathy was settled into her new room, she developed a mucous plug. It took a couple hours for the nurses to get it worked out. (Actually the plug was found in the inner cannula to her trach. A routine change of this cannula would have saved a couple hours of anxiety). Cathy's anxiety over this event was heightened because when she was moved, the ventilator did not move with her: no safety net.

Cathy walked a lap around her 'new' unit twice today. Put that activity together with some standing and marching in place, and several ups-and-downs out of her chair to take care of some business, and Cathy had a very active day.

'The button' was taken away today. Her pain management is down to vicodin and internal fortitude. She has shown us this past few months that she has a boat load of fortitude.

A Room Upgrade

Another active day for Cathy. Once again she went for a walk twice in one day. She has been on the trach collar steady since after the procedure yesterday. This afternoon she enjoyed a PB&J sandwich and this evening she had her first California Roll in several weeks.

Sorry for the late update. After I arrived at Cathy's room this evening, I fell asleep before I had a chance to make a post. We were both woken up a few moments ago and informed that Cathy is being moved to a different room. She is being transferred out of the ICU and into the medical observation unit (MOU). This is the unit she was in just prior to the transplant. So much for getting some sleep tonight.....

She Was Overdue For A Day Like Today

Just under two liters of fluids were removed from Cathy's chest cavity this morning. Two Liters! Where was she hiding that that much fluid? No wonder she was having difficulties. The doctors and the nurses in the unit were amazed at the volume of fluids they were able to extract.

Immediately after the procedure, she was put on the trach collar. After a few moments she was allowed to stand up. Cathy tells me that she could feel the difference. It was all good from there. Within two hours Cathy had walked a lap around the ICU. Later in the morning the physical therapist stopped by and had Cathy do some more leg and arm exercises. Then, if you can believe this, she went for another walk. This time she walked beyond the ICU where her room is, to the adjacent ICU, did a lap around that unit, then returned to her room (after doing a lap around her unit again). Simply amazing!!

But hold on... it gets better. Another swallowing test was performed today: she aced it. She is now on a regular (soft) diet. She can drink water without thickening it. So far today she has eaten two meals, and getting ready to try a third.

Cathy tells me that she is tired this evening. However, its a different kind of tired. Tonight she is tired from activity, not from a lack of energy. The one downside for today is some increased pain. With all the activity today, her incision area is not letting her forget that it is still there.

Smiley Face

She was only able to go five hours on the trach collar this morning. The good news for the day is that the doctors may have confirmed why Cathy lacks energy and is experiencing a diminishing ability to breathe on the trach collar. An ultrasound of her chest cavity has shown an accumulation of fluids around the outside of her new lung. These fluids are keeping her diaphragm expanded and pressure on the outside of her lung. Tomorrow morning the doctor is going to insert a needle into her chest cavity and drain these fluids.

Today was the first day since her transplant that Cathy was allowed to eat. Since she cannot eat while on the ventilator, and she was only on the trach collar for a few hours this morning, she was not able to indulge in the culinary delights of the pureed menu.

The physical therapist worked with Cathy on some exercises that can be performed while she is sitting. Between this exercise and the pneumo vest tortures, she is zapped of her energy.

Tonight, as exhausted as she is, and with the anxiety over the thought of being poked with a big needle tomorrow, she is still managing to keep a bright smile on her face.

Thick Water

She can swallow!!!! Cathy passed the swallowing test this morning. For now, she is being allowed a pureed diet. (Mmmmm, pureed hot dogs and hamburgers). She is not supposed to have anything to drink without adding a thickener.

A cat scan of her new lung was performed this afternoon. The attending physician said everything looked good.

Today Cathy learned that the sore on top of her scalp is a cancer. However, the doctor's are not that concerned about it. She was told that they will wait until she is out of the hospital and deal with it as an outpatient.

Cathy is again retaining fluids. This may be part of what is causing her loss of energy. The diuretics have been restarted. (I am confused as to why they keep stopping these if the problem reoccurs whenever they stop them. A question for the list). We were told on Sunday that another cause for her lack of energy (beside the myriad of medications she is currently receiving) could be a drug she was given just before, and during, transplant. Cathy was given a drug called Campath. This drug is supposed to eliminate her need for one of the anti-rejection medications. Cathy had a difficulty after her first transplant tolerating one of the anti-rejection medications - CellCept. The Campath is supposed to eliminate her need for CellCept, for a while at least. I believe that Cathy is the first lung transplant patient at UCLA to receive this treatment. Cathy's lack of energy may be a side effect of the Campath.

Twleve hours on the trach collar today. She is at hour fourteen at sitting up in the high-back chair, but she will probably be going back to bed very soon. Today the OT washed an braided her hair again, she is getting spoiled.

Unknowns

Where's the Energizer Bunny when you need her? Cathy is still being overwhelmed by a lack of energy. She was able to walk around her ICU room a bit with the physical therapist this morning, but this zapped her.

The results from Saturday's bronchoscopy indicate that there is no infection or rejection in her lung. This great news! (The gorilla has just left the building). The cause for the drastic change in her energy level between last Friday and Saturday thru today has not been explained.

We still have not been given the results from the biopsy of the sore from her scalp (she is going to have a nice bald spot as a conversation piece). Until I get a chance to speak with a doctor I am assuming that no news is good news. If the biopsy results were bad I think we would have seen some type of activity.