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.

Exhaustion

Today can be summed up in one word for Cathy: Exhaustion. The attending physician attributes her lack of energy to the medications she was given for the bronchoscopy.

She has been sitting up in the high-backed chair, on the trach collar, since 6:30 this morning. Two seperate blood gas analysis this afternoon indicated that her system is retaining to much CO2. She will rest again on the ventilator overnight.

Last night Cathy had another fever. We have been told that this fever was probably caused by the bronchoscopy. However, the doctors are not taking any chances. She continues to be given a 'broad spectrum antibiotic" until the results of some of the cultures are received.

Her pain management is still being handled with the self administered morphine and vicodin. She is using the 'button' less and less every day.

Something Does Not Feel Right

I mentioned in the blog several weeks ago that I have learned to believe that something was not right whenever Cathy says that "something does not feel right". Last night Cathy began to struggle to catch her breath. The nurse coached and encouraged her to continue throughout the night. In the morning, she turned to me and, nearly in tears, lipped "something does not feel right".

By the time the attending physician came by just before 9 am, Cathy was exhausted from trying to keep her breath. At that time we were not aware that she had also 'spiked' a fever (100.2) during the night. The doctor had Cathy put on the ventilator (over 52 hours on the trach collar by the time they hooked her up to the ventilator). He also put things in motion to perform a bronchoscopy this afternoon. The fever raised concerns over an infection. Cultures from the bronchoscopy, blood samples, and other bodily fluids will not be available for a couple days. In the mean time, different antibiotics have been ordered.

The bronchoscopy was completed by 3 pm. The doctor said that everything looked good inside her lung, possibly even better than during the bronchoscopy performed last Tuesday. He did say that the lung may be slightly collapsed. This could be a manifestation of the re-profusion injury. Having her rest overnight on the ventilator should reverse this collapse.

There is an eight-hundred pound gorilla in the corner of this room. Besides the concern over infection, there is also a concern for rejection. This gorilla will remain sitting in the corner until the samples taken during today's bronchoscopy are analyzed. Monkey: Go Away!

A Lap For Her Supporters

Cathy has been on the trach collar for thirty six straight hours. So far her blood gas levels are good (actually improving). As long as there are no changes in her blood gasses (for the worst) the plan is for her to remain on the trach collar.

Cathy was able to walk a complete lap around the ICU for physical therapy this afternoon. She was cheered on during this lap by some of the other nurses in the unit. She has been here so long there are many nurses that have played rolls in her recovery. Their sincere encouragement means a lot to Cathy. When she was done, the look of accomplishment on her face was priceless. A photo op, and I did not have a camera at hand.

During the night Cathy developed a mucous blockage. The nurse and respiratory therapist worked with Cathy to remove this blockage. What stands out different with this event, when compared to previous times when she developed a blockage, was that Cathy was able to bring up most of the blockage herself with the strength of her new lung, and she did not need to be put on the ventilator afterwards.

No word on the biopsy of the sore from the top of her head. However we were told that the samples taken during the bronchoscopy last Tuesday are negative for both infection and rejection.

Happy Thanksgiving

Cathy has been sitting in the high-backed chair, on the trach collar, since 6:30 this morning. The plan is to let her stay on the collar until her blood gas levels start to go bad. So far she is doing great. Today she did three 15 minute sessions in the pneumo vest and three sessions of exercises (leg lifts and marching in place).

Last night Cathy started to produce blood with her lung secretions (quite a bit). The doctors said that this is not a concern. The bleeding is from reprofusion injury. All transplant patients get it. Cathy has a mild case of this injury. This was caused when the blood and oxygen were reintroduced into her new lung after transplant. For some reason, after tissue has sat without blood circulating through it for an extended period of time (like her lung when it was sitting in a bucket of water before transplant) the tissue swells up when it starts to receive blood and oxygen again. It is normal, we were told to expect it, and it is happening.

Today is a Thanksgiving that Cathy and I are not going to forget. No turkey, no cranberries, no gravy or pumpkin pies, just the two of us discussing plans for trips and adventures. Two weeks ago a simple trip out of bed was becoming an impossibility. Today the possibilities are... well you all know... The depths of our thanks to that special family somewhere in Colorado cannot be expressed in words. Our prayers are with them as they pass through this day without their son, brother, uncle, nephew, cousin....

Extra Credits

When I walked into Cathy's room this afternoon she was sitting up in the high-backed chair, on the trach collar, taking a pneumo vest treatment. What did not fit in the picture was the upset look on her face. Because she was in the middle of the pneumo vest treatment, she was not immediately able to tell me what was bothering her. The pneumo vest is a cloth-like vest that inflates around her torso. After it is inflated, the vest vibrates to loosen up the secretions in Cathy's new lung. Cathy does not care for this treatment (that's a mild version of her true feelings). She is supposed to take this treatment three times a day for a minimum of fifteen minutes each. Here is the rub: Cathy controls the treatment by squeezing a bulb. She squeezes for a few minutes to activate the vibrations, then lets up to give herself short a break. After fifteen minutes, or after she has had enough, she stops the treatment herself. Evidently while taking this treatment this morning, Cathy thought she would get the day's treatments out of the way in one sitting. So, she endured forty-five minutes of the treatment in one sitting. Wrong - one forty-five minute treatment is not the same as three fifteen minute treatments. The look I saw on her face was the angst over putting up with the extra thirty minutes and not 'getting the credit'. She was sitting through a treatment that, in her mind, she had already endured.

Cathy sat up in the high-back chair all day. She has been on the trach collar for a little over thirty-eight hours. Her blood gasses are holding at good levels. Her blood's pH however is heading a little low (acidic). Tonight she is going to be put back on the ventilator to rest her lungs overnight. She is so close to becoming independent of the ventilator.

Cathy went for a walk today! The physical therapist took Cathy for a walk outside of her room, back and forth in front of the nurses station. When I told her how great that was, she immediately corrected me. "That was not great, that was awesome!" She is right, I stand corrected.

The dermatologist was by Cathy's room this morning to perform a biopsy of her sore. We probably will not know the results for a couple days.

I neglected to mention in yesterday's update that Cathy was moved to a different room, again. She is still in the cardio-thoracic surgical ICU. This room has an excellent view of Westwood, Bel Air and Santa Monica - A light show at night and a view to the ocean on a clear day.

Bring It On

Cathy is in the procedure room getting bronk'd. This procedure was supposed to occur earlier this morning. There was a little confusion and her tube feedings were turned back on prematurely. The procedure had to be delay until her stomach emptied.

Cathy went twenty-four hours on the trach collar yesterday. After that time her blood gasses were all good. The medicine team had her put back on the ventilator this morning for a couple hours. Cathy does not feel like she needed the rest.

Back in July, Cathy developed a sore on the top of her head. At that time this was just another minor issue to be dealt with. This sore was examined by a couple of the residents and she was prescribed some cream. Over time the sore improved. After a few weeks it kinda went 'out of mind'. Last weekend, Jessica and I noticed a trickle of blood running down Cathy's forehead. The sore is back. It is now larger and crusty. A dermatologist examined it this morning. There were several possibilities given for the sore, among them was a skin cancer. Because of the many medications Cathy has been taking, they are not going to take any chances. Tomorrow a biopsy of this sore will be performed. Cathy is remaining positive.

Gimme Three Steps

Cathy made it fifteen hours on the trach collar yesterday. Without pushing herself, she may try for twenty-four hours today.

The remaining chest tube was pulled this afternoon. Also this afternoon, the occupational therapist stopped by and spent quite some time with Cathy. During her visit, the OT washed, brushed and braided Cathy's hair. It is nothing like what Cristina would have done, but it still made Cathy feel much better.

This morning Cathy sat up in the cardiac chair for a few hours. When they move her from her bed to the cardiac chair, the chair flattens out and she is slid from the bed onto the chair. Then the chair is reconfigured to the sitting position. After sitting in the cardiac chair for a few hours, the physical therapist came in to see Cathy. The PT had Cathy stand up and walk over to a high-backed chair - Three Steps!!!! After sitting in this chair for a couple more hours, Cathy stood up and reversed those three steps back to her bed. With the help of the nurse, she was able to get herself back into bed. How about that!

Today a 'new' attending physician took over service in the ICU. This doctor was also the attending physician in the ICU when Cathy was first admitted last June. He lead the team that had a big part is saving Cathy's life. It is very fitting that he will also be playing a big part in the final stages of her recovery.

All was not roses today. The swallowing test did not go as well as Cathy and I had hoped. There was a small amount of the stuff Cathy swallowed (water and pudding dyed green) 'going the wrong way'. The plan is to revisit this test in the near future. We learned that the muscles involved with swallowing and talking also need some reconditioning. Cathy is supposed to start trying to talk while she is on the trach collar by blocking off the trach tube with a finger. This will exercise these muscles.

Tomorrow Cathy is scheduled for another bronchoscopy. This is an examination that is typically performed on all lung transplant patients seven days out from transplant.

The next hurdle is for Cathy to become independent of the ventilator. If she can make it twenty-four hours without needing the ventilator, the doctors will put in orders to have her moved 'to the floor'. This will reduce the amount of 'bugs' Cathy is exposed to, reducing the worries about her catching something that will damage her new lung. They will also remove the trach. If the trach is removed, the cause of the swallowing problems also goes away. The issues will tumble like dominoes.

Exam Day Tomorrow

Cathy has been on the trach collar for twelve and a half hours and still going strong. She had been up in the cardiac chair for over seven hours. She went back into the hospital bed because the doctor's wanted to pull one of her chest tubes - it is out.

The attending physician from the pulmonology team said that the atelectasis is improving.

Yesterday when Cathy was put on the trach collar, it took her almost two hours to adjust and become comfortable. This morning when she was put on the trach collar she was comfortable within a few minutes.

Tomorrow Cathy is scheduled to have a swallow test. (She has taken this test four times now, she should ace it). If she 'passes' this test she will be able to start eating and drinking normal food. Of course she will have to deal with the pureed stuff at first.

Big Words

Cathy spent a little over 13 hours on the trach collar today. About 5 hours of that was spent sitting in the cardiac chair. Her pain has not subsided. They have hooked her up with a self-administering pain medication. She can press a button every 10 minutes and give herself a shot of morphine.

To lessen her pain, the plan for today was to remove one of the two drain tubes from her chest. However as this procedure was about to be performed, the nurse practitioner suspected that there was an air leak into her chest cavity. The investigation into this potential issue is still ongoing. Stay tuned.

This morning the attending physician from the pulmonology team said that Cathy's new lung has some atelectasis in the lower lobe. (Look at that, I got to use a BIG word). As the doctor told me, "This is just a term for a collapsed lung, it just doesn't sound as scary". This is probably being caused from Cathy's shallow breathing due to the pain. Having her sit up in the cardiac chair and taking full breaths should eventually correct this atelectasis (ooohhh, used it twice).

The Gift Of Life

Cathy has been relocated to her new digs. It is a nice flat, but not much of a view. It looks identical Cathy's previous home. Hopefully she will be moving out of this room and onto the medical observation unit very soon.

While Cathy was being moved, one of the heart/lung transplant coordinators happened by. She had an interesting story. She is currently working with a patient, a young child, who has been in the hospital for over eight months. This child received the heart from Cathy's donor. One gift has helped at least two families.

Cathy has settled in to her new surroundings (that's pretty easy to do when it looks identical to her previous room). Several of the doctors and surgeons have all said that by the third day, the pain from the incision should start decreasing. Today was the third day, so we are looking forward to the better days ahead.

The Nomadic Patient Part Two

Cathy sat up in the cardio chair on the trach collar from 7 am until 3 pm. During that time her numbers all remained good.

The physical therapist came at the end of her time in the chair, so once again bad timing prevented Cathy from having physical therapy. Cathy did manage to stand for a brief moment. I was not in the room, the nurse informed me that she had good balance. We'll take it!!!

Cathy has not slept well since the transplant. Actually, she hasn't slept well since last Thursday when the fluid retention issue started to give her problems breathing. She is dosing in and out of sleep at this time. Hopefully she will get a full nights rests tonight (as much as she can with someone coming in and poking or proding, or josteling her every one or two hours.

...... Well, as I am blogging we got the word that Cathy is being moved two doors down (isn't that a song?). Something about patient and nurse parings. So much for getting some sleep right away. Gotta pack up......

Friday Morning

During the night Cathy started to have issues with low blood pressures and low blood sugars. The low blood sugar thing has been corrected. The low blood pressure is being addressed. With everything she has been through since June, these issues are barely blips on the radar.

Today the plan is to have her spend some time on the trach collar and get some exercise. If necessary, she will be put on the ventilator during her physical therapy. Getting her to move her muscles is one of the primary priorities. It has been so long since she has walked, her ankle joints have very little movement. Although not near as extreme, the movement in her shoulders are also limited (especially the left side where she has the added pleasure of dealing with her surgery incision).

Time For Jane Fonda's Workout

Cathy was on the trach collar for six hours. During that time her 'numbers' all remained good. Her breathing was a little rapid and shallow. Dr Saggar said that this recovery is going to take a while - a few days or a few weeks weeks. Cathy had been dependant on the Bi-Pap for so long, she has lost a lot of muscle mass in her diaphragm and rib muscles. Cathy is going to have to work to build these muscles back up. The lung is working great, she just doesn't have the muscle strength to move the air in and out.

She is back on the ventilator on a pressure support mode (like the Bi-Pap). The plan for the rest of the evening is to have her set up in a cardiac chair (lets the diaphragm work better) and wear a pneumatic vest that will vibrate and loosen up her secretions.

On The Collar

Cathy began a ventilator weening trial around 7 this morning. First the ventilator was changed to a pressure support mode. Cathy struggled, but like the trouper she is, pushed through it. Her blood gas CO2 went a little high (60's), but the doctors were not overly concerned. At 11 am she was switched to a trach collar at 40% oxygen. Again the trouper in her kept at it. Did I mention that all this was done with only a quarter of one dosage of pain medication and being jostled around as the nurses dealt with 'other issues'? After a little over one hour on the trach collar her blood gasses held steady (CO2 still in the 60's).

Cathy is still on the collar. I wouldn't say she is going strong, but she is still going. She is doing it with an intense concentration and that Cathy stubbornness.

Numbers

I must be bored. Here are a couple numbers for you to ponder and go ... Hummm.

Although, Cathy did receive the call for her first transplant fours years ago on November 17th. That call came around 6 pm on that day. By the time we got to the hospital and Cathy was prepped for surgery, and it was confirmed that the lungs were good, it was very close to midnight. Surgery began after midnight on November 18th. Yesterday, Cathy went into the OR just before 4 pm. The surgery was complete just before midnight. Both surgeries were conducted entirely on the 18th of November. Hummmmm....

Cathy and her daughters have always shared a kinda numbers communication code. I am sure it is nothing unique to them. The number sequence 1, 4 and 3 carries the meaning of "I Love You" for them. They use this code with true feelings. Well, yesterday was Cathy's 143rd day in the hospital. Hummmmmm......

God just told Cathy that he loves her.......

Still A Bit Groggy

The settings on Cathy's ventilator were changed to a pressure support mode. Cathy did well on this setting as long as she was awake. Whenever she would dose off a little, her breathing got shallow and her blood oxygen levels dropped. There are still a lot of drugs floating around her body keeping her a little sedated. Until these fully wear off and she is fully awake, she cannot be weened off of the ventilator. Possibly tomorrow morning.

Cathy had a bronchosopy this afternoon around 4 pm (more sedation). The doctors said everything looked real good. I was given a quick tour of the inside of her new lung. Since this was my first time seeing this I have nothing to compare it to. It was amazing. At one point I did notice something that caught my attention. I saw in very small print, at the top of the bronchial, some writing that said "Made in Colorado".

Correction

There was not any trauma on the new lung. The bleeding was comming from her chest cavity where the upper lobe of her 'old' lung had adhered to the cavity walls. When they peeled the lung out it was described to me as being similar to removing a scab - it bleeds like the dickens.

The pulmonology team all speak very highly of her new lung. Listening to them talk about this lung you would think they were discussing some high priced sports car. "Its a beautiful lung" were among some of the phrases I heard.

Cathy is doing much better. Of course she has a tremendous amount of pain at her incision site. She is very thirsty. She cannot have anything to drink until they are sure everything is OK and they will not have to send her back to the OR for any reason.

Cathy Enters Puberty Again

Cathy is back in the ICU. The surgeons found some trauma on the upper lobe of her new lung (it came with the lung). This site was oozing blood. They cauterized this site and the bleeding seems to have subsided. She was loosing about 380 ml per hour of blood before going back into surgery. After the surgery she is loosing around 25 ml per hour.

She is still sedated.

One of the attending pulminologists was is a few moments ago. He said that her lung sounds very good. Her blood pressure is back up to normal. They have begun to ween Cathy off the oxygen support.

Another bit of information about the lung: Its from a 16 year old male.

Cleanout On Aisle Four

I'm back in the surgical waiting room. Cathy was taken into the OR about 10 minutes ago. The procedure is called a 'cleanout'. Sounds like something a plumber does. I was told it should be about 2 hours. The surgeon said that by this time the bleeder should be obvious. Most of the bleeding should be clotted over. They are going back in through the same spot they went through to give her the lung.

Complication

Cathy is awake.

The bleeding has not subsided. Cathy has been given 5 units of blood since 2 am. They will be taking her back down to the OR soon to open her up to find the bleeding.

Rocky Mountain High

Cathy is recovering in the ICU. Her blood pressure is a little low and she is bleeding a bit more than they would like. She is receiving a unit of blood and IV fluids to help with the pressure issue. Hopefully the bleeding will take care of itself.

One more thing the surgeon said about Cathy's lung: He told us that it came from Colorado. We do not know any more about it than that.

Its Done!

The surgeon just came down and spoke with us. Everything went well. He did say the the lung they took out was 'stuck' at the top and bottom. There may be some bleeding where they had to separate the lung from the chest cavity. It should not be bad enough to require additional surgeries. It will be about an hour before I will be able to see her.

Shift Change

They are closing skin!!!! Twenty more minutes and they will transfer her to the cardio-thorasic ICU. Cathy is doing great. The surgical nurse gave me this update as she was going off shift. (Shift change in the middle of surgery?)

Its In

Just received a update from the OR nurse. The lung is in, everything is going "as planned". Cathy is doing good. A few more hours of surgery to go.....

Still Smiling

Becky snapped this pic just before they wheeled Cathy into the OR.

Still Smiling....

First Progress Report

I just received and update from Dr Saggar. The lung arrived here at the hospital about 30 minutes ago. The lung "looks good and has good blood gas levels". They are now opening her up and beginning the process.

I think the 6 to 8 hour clock just started.

Its A Party

Cathy went into the OR about 30 minutes ago. Her wish is that no matter how this turns out, we have a celebration.

Its A Go

Everything is looking good. Cathy is scheduled to go into surgery at 4 pm California time. It will be a 6 to 8 hour surgery.

A Call

This morning Cathy was told that there is a lung available for her!!!!!!!

I rushed to the hospital in time to cross paths with the Doctors Saggar. At this time it is looking good. They said the lung identified is a left lung. The plan had been for a right lung, but something has caused them to call an audible and change the plan. We trust their judgement.

Cathy is understandably a little anxious at the moment. It is now a waiting game to see if the lung is good enough for transplant. Minutes? Hours? We don't know. However long it is, it will seem like an eternity.

Happy Birthday Cathy

Today there was a noticeable improvement in Cathy's breathing, and comfort in general. The swelling in her legs has gone down significantly. There is still some swelling to be removed. In the past 48 hours Cathy has shed over 14 pounds in fluid weight

Tonight is the four year anniversary of Cathy's transplant. This was another long night in our lives. We are both grateful for that second chance and have cherished every extra moment of life that miracle has given her. It is a little bittersweet that we are celebrating this re-birthday in the hospital.

Finally Some Sleep

Cathy is finally getting some sleep. Whether it is because of sedation, or the positive effects of the lasix, or just plain exhaustion, only time will tell. She fell asleep just after shift change (8 pm). Before falling asleep she did say that her breathing is a little bit easier tonight than it was last night. The swelling in her feet and calves appears to be going down, more so in her left leg and foot.

Burning Down The House

Cathy struggled hard to breathe throughout the night. For me, last night was one of the longest I have ever experienced. I am sure it was even longer for Cathy. Cathy began to have difficulties around 9:30 or 10 pm and could not get any relief until just before 10 this morning when she was given an additional dosage of a sedative. The nurses, respiratory therapists and care partners were assisting Cathy all night. (If I hear another person tell Cathy that ALL she needs to do is relax, I think I am going to scream. Telling Cathy to relax has the opposite effect). This morning both teams of doctors were in to assess Cathy's condition.

This morning they upped the anti on the amount of lasix Cathy received. Although she released a lot of fluids over the past 24 hours, there is no noticeable difference in her swelling, and more importantly for Cathy, no improvement in her breathing. The medicine team said that the x-rays did not show any fluids in Cathy's chest cavity. The pulmonary team believes that, with the amount of fluids Cathy is carrying in her lower extremities, she could also have extra fluids in her lungs. This would explain her difficulties. It also means that after the fluids are removed, Cathy should see improvement in her ability to breath. It has taken several days to build up the fluids. It is going to take a few days to bring the levels back down.

Lasix has been a part of Cathy's daily routine since her transplant. Sometime during the past few weeks, her daily dosage of lasix was DC'd. I missed this change. I asked the pulmonary team about the reasons for this change. They speculated that Cathy's blood creatinine levels may have been a little high. This would have been an indication that her kidneys were not functioning properly. If high creatinine levels were observed, the medicine team may have DC'd her daily lasix dosage.

In the midst of Cathy's struggles, the world around us is on fire. Although no fires are anywhere close to the hospital (yet), the air outside is filled with smoke and soot. The doctors have ordered a room air filter for Cathy's room. The small amount of contaminants that are entering the room may be contributing to Cathy's difficulties. Therefore, after the filter is put in place, we have been asked to keep her door closed as much as possible.

Off Limits

Back in July, when Cathy became aware of this blog, she made me promise that I would not mention certain topics. One of the things that she put off limits were topics that would betray her modesties. In keeping with that promise, there have been some details that I have not, and will not, put in this blog. However, in order to set the tone and describe this morning's events, I must move very close to the line.

During the past few days I have described a slow deterioration of Cathy's physical strength. I have also alluded to a somber shift in her mental attitude. One manifestation of the deterioration in her strength and a big part of her 'somberness' has been an inability for her to take care of her own 'personal needs' (I cannot get any closer to the line that that). Put together her loss in strength, her inability to walk even the shortest distances, her inability to take care of herself, and being told that there is nothing more that can be done except make her comfortable, and it is understandable that she is in a mental funk (another off-limits topic).

This morning one of the pulmonary care physicians (transplant team) came by Cathy's room. This doctor had a comment that was precisely opposite of the doctor's comments on Wednesday.

"I think we can help".

During the past few days, along with Cathy's decreased strength, her lower extremities have swollen up like a balloon. Apparently this issue and Cathy's loss in strength are kinda like the chicken and egg thing: which one came first, which is the cause and which is the effect?

After confirmation of good liver functions (or is it the kidney?), they are going to aggressively go after the swelling - water retention. They need to check the kidney's function (or is it the liver?) because the treatment, lasix, in high dosages can damage the liver (or kidney).

Cathy was given something positive to hope for. The next couple days will tell - was it the chicken or was it the egg?

Friday Night Lights

Cathy is a little more relaxed this evening. Her anxieties may have been relieved a bit since she did manage to do some physical therapy this morning. Today she was able to stand at her bed side for several minutes.

There isn't much more to update tonight. Just spending a casual Friday evening relaxing and watching the tube.

A Word

Cathy struggled with her breathing today. The doctors have the support settings on the Bi-Pap to the maximum that it can provide. Today they also increased the frequency of Cathy's respiratory treatments. Her blood gasses are being checked every 6 hours. The resident on duty said that the results of the blood draw taken at 6 pm were the best for the day. While he was in the room discussing the days difficulties and the changes in Cathy's treatment, he used a term that sent shudders through Cathy (and me) -- re-intibate. He said that they do not want to re-intabate Cathy. She needs to relax and concentrate on her breathing. He reassured Cathy that her 'numbers' are still good.

The term came out of left field. I assume that it is being discussed among the doctors. I think we may have just been 'prepped'. I hope and pray that I am wrong.

As Tears Go By

Today was a rough day for Cathy, emotionally. Apparently she had a serious conversation with one of the doctors this morning. What she heard upset her. What she heard wasn't anything new, it wasn't anything that we haven't heard several times during the past month or so. I think this morning, more than hearing the words, this morning she understood their meaning.

"There is nothing more that we can do for you at this time except make you comfortable until you receive a new lung".

Cathy was again unable to get out of bed today for physical therapy. She tried. This added to her 'funk'.

On the positive side of things: The bleeding in her lungs/airways has stopped (again). Her secretions are clear, no color or dried blood.

Bank Holidays

Today was an uneventful Veteran's holiday for Cathy. That is both a good thing and a troublesome thing. Good because there were no mucous blockages, uncontrollable nausea events, or anything else that could potentially set back Cathy's health. Troublesome because Cathy did not have the opportunity to do physical therapy, which always picks her spirits up and is beneficial to her health.

Cathy is still 'producing some blood' with her lung secretions. Its not a lot, but enough for her to need medications to help her body produce more blood and bring her blood counts closer to where they are supposed to be (one step away from another transfusion).

Becky will be coming down this evening to spend some time with Cathy. This will give me the opportunity leave a bit early and steal a few extra minutes of sleep.

Adding To The List

The physical therapist stopped by to take Cathy for a walk this morning, unfortunately Cathy did not have enough energy to get out of bed. She feels that the weight she has put on since beginning to receive the anabolic steroids is to much for her to 'carry'. I'll have to put this on my list of things to discuss with the doctors.

The bleeding in Cathy's lungs has resumed. It is still assumed that bleeding is being caused by agressive suctioning. The respiratory therapists are trying to follow a careful suctioning schedule. Not so much as to cause more bleeding but enough to remove the blood and secretions so they do not become blockages in her airway.

David

PS. Semper Fi

Groovin' . . . On A Sunday Afternoon

For the most part it has been a laid-back Sunday afternoon. Cathy has been trying to catch up on some of the sleep she has missed during the past couple nights.

This afternoon some dried blood came loose from somewhere within her airways (wherever the bleeding had been occuring). This dried blood started to block the trach tube. After a well timed visit from a respiratory therapist the situation was addressed before there was a complete blockage.

Does it worry you to be alone?

Cathy's Saturday was blessed with visitors. Kaitlyn came down and spent the day with Cathy. Later in the afternoon, Donna and Floyd came down from Oxnard and spent time with her. Unfortunately, Jessica was feeling a little under the weather so she was unable to make her normal Saturday visit.

The bleeding in Cathy's lungs stopped sometime yesterday. This is a big relief. The doctors are holding all blood draws through the weekend (except for testing blood sugars) to help Cathy maintain the proper blood counts without another transfusion.

Cathy slept a little better last night. The visitors during the day helped her to relax a bit. Add that to the reduced anxieties over mucous blockages and she was able to get a little deep sleep.

A new attending physician took over rotation in the medicine unit yesterday. She has been in to see Cathy three times since Saturday morning. Cathy appears to have bonded quickly with her. It helps that she can read lips very well.

All Night Long

The physical therapist took Cathy for another stroll around the unit yesterday. This activity has become such a treat for Cathy, you can see the sparkle in her eyes when she tells you about it.

Yesterday Cathy started to produce blood again in her mucous secretions. Cultures have been taken to ensure that this is not being caused by an infection. It is likely being caused by trauma from the suctioning she receives. Also, the respiratory therapist left the Bi-Pap's humidifier off overnight on Thursday. This may have dried out her airways.

During the night, while she was receiving a treatment from the respiratory therapist, a clot of this blood/mucous secretion came loose and blocked Cathy's airway (trach tube). The respiratory therapist froze, she did not react. Cathy pleaded with her to remove the inner cannula from the trach tube. Cathy was gasping for a breath and writhing from the pain. After some prompting from me (I must have been a little loud, the nurse came running down the hall into the room at that time) the RT removed the cannula. It was completely clogged with a clot. Besides the immediate scare to Cathy, this event made her fearful of falling asleep and another clot blocking the cannula. It was a long night for the both of us. Not really a fiesta.

Long-Haired Freaky People Need Not Apply

Protests.....

I don't know how much of the local news has been covered elsewhere, if you haven't heard, this afternoon protesters took to the streets in West Los Angeles and Westwood. As I was listening to the developments on the radio during my drive to the hospital, I was at first sympathetic to the rights of those voicing their opinions. As my drive drew closer to the hospital, and the protesters moved their activities closer to the same destination, and my commute tempo slowed, my sympathies started to shift. By the time I was within a few miles of the hospital and my commute had slowed to a very, very slow crawl, I was about ready to scream at the first long-haired hippy freak protester carrying a sign that I saw. After an extra hour and a half on top of my normal two-hour commute, I walked into Cathy's room and my perspective did another 180. Let-em protest, H#!! yeah. Long-haired hippy freaks everywhere let your voices be heard.

OK.... I'm better now. I'll climb down off of my soap box. Thank you for letting me vent.

The physical therapist did not show again today. I caught the day nurse in the elevator as she was leaving for the day. She explained that they waited for the PT until after 3 pm. By that time Cathy no longer had enough energy to get up, so they did not attempt to have the Care Partner take Cathy for a walk. She said that tomorrow she will not wait until that late in the day.

It has been suggested to Cathy that she try reading, drawing, or writing to help pass the time and keep her spirits up. Magazines, books, note pads, pens and pencils have all been brought in. Cathy does not utilize these items because they take energy and concentration to use, handle and even focus upon. Some doctors and nurses get a little 'frustrated' when Cathy resists writing notes to them when they have a hard time reading her lips. Cathy feels she must focus all her energy upon breathing. The act of writing or reading takes her focus away from breathing. Holding a pen and pad, or a book for more that a few moments is tiring to her and makes her short of breath.

So, people can argue and protest as much as they want over the definition of something that we all know only truly exists in the hearts of two people, not in a paragraph of some constitution. It is a trivial argument when juxtaposed against someone protesting for a calm breath.

The Walk of Life

A physical therapist came by Cathy's room today and took her for a walk. Cathy was able to make a complete lap around the unit - about 500 feet, wooo whooo!!!

Cathy ate well this evening. It seems that her battle with nausea has become a stalemate. Most of her nausea 'triggers' have been identified. To hold the nausea in check she takes a dosage of an anti-nausea med before any of these triggers. Two separate anti-nausea meds are being used.

As I mentioned last night, Cathy is still dealing with some pains, although not near as much as in August just after the G-tube procedure. Here again, the treatment involves a one-two punch approach.

Since there are no urgent physical struggles facing Cathy at this time(besides breathing), the biggest struggle for Cathy is dealing with boredom and holding on to her positive mental attitude. Today's walk went a long ways towards cutting the boredom and lifting her spirits.

Cathy has asked me to send her love to everyone and thank you once again for all the prayers, good thoughts, words of encouragement, support, love and kindness. xoxo

Gonna Climb A Mountain

You may have noticed that the past few blog titles have been associated with song titles or lyrics. Tonight I asked Cathy for a song lyric that expressed her feelings at this moment. She gave me title lyric from a Marshall Tucker Band song: Can't You See. She said this particular line in that song kinda says it all for her (the rest of the song is a little depressing).

The physical therapist did not show up again today. Tomorrow Cathy is going to ask one of the care partners to take her for a walk.

The ultrasound was not performed today either. The bumps have not been bothering her a hole lot the past day or so. I guess they will eventually go away and we will never know what they were or what caused them. Cathy is receiving so many medications it is a wonder she hasn't grown something more than some extra bumps.

In general, Cathy is doing pretty good. She is eating a little here and there, she has a desire to get up and go, and for the most part her pains back to her baseline (her chronic headaches and occasionally the pressure sore reminds her it is still there).

Monday Monday

Cathy is a little disappointed that the physical therapist did not show up today. I think that kinda set the emotional tone for the day.

The ultrasound was not performed either. The resident from the medicine team stopped by and gave the bumps another examination. Nothing much more has been said.

There is not much else to update this evening. Cathy is watching Finding Nemo, that should lift her spirits.

Sunshine On Her Shoulders Makes Her Happy

Cathy found Titanic on the tube again today. Add that to the beautiful blue skies here this afternoon and Cathy is in great spirits. Kaitlyn came down this afternoon to visit and watch Titanic and Close Encounters with her.

The attending physician came in this morning and gave another opinion about Cathy's bumps. He did not express any great concern over them (of course that could just be that poker face training again). I believe an ultrasound has still been ordered for tomorrow.

Cathy has been 'snacking' a bit today: A little scrambled eggs and potatoes this morning, a couple hard boiled eggs and watermelon this afternoon and who knows what this evening. It seems her appetite is starting to return.

Have You Ever Seen The Rain?

During the past few days Cathy has begun to develop 'bumps' in/on her muscles. Most are about the size of a grape (they actually look like someone shoved a grape under her skin), but a few are two to three times that size. They pop up just under her skin and go away within a day or so. At times they are tender to the touch and a couple have shown bruising around them. The resident has ordered an ultrasound on a few of these. This ultrasound will probably happen on Monday. Now what?

A California Roll and Squirt soda for supper tonight. That doesn't sound to appealing to me but Cathy appears to be diggin' it.

We had a brief 'thunder, lightening and rain shower' show from the hospital room this evening. Cathy enjoys the rain so this was a special treat for her. It was made even more special because she was able to share it with Jessica.

Back-Up Support

The highlight of Cathy's day was dealing with problems with the Bi-Pap machine. This afternoon when I walked into Cathy room there were two Bi-pap machines set up.

This evening she went on the trach collar long enough to eat some egg salad and cottage cheese, about 20 minutes.

That about sums up her day. Just waiting for that 'call'.

No Further Discharges

Today was a pretty good day for Cathy. For physical therapy she was able to walk outside of her room and up and down the hallway. She is still only able to tolerate the trach collar for around 30 minutes at a time.

Cathy's biopsy wound stopped bleeding today, or "no further discharges" in nurse speak.

Wednesday Evening Treatments

No physical therapy for Cathy today. Cathy actually looked a little disappointed as she told me this. I think Cathy gets as much out of the visits with Lawanda (the physical therapist) and she does from the physical therapy itself.

Cathy went on the trach collar for a short time this afternoon to eat lunch and again this evening for about 15 minutes to receive an aerosol antibiotic treatment that cannot be given while she is on the Bi-pap. Cathy takes a while to recover from these treatments so she did not want to go on the trach collar this evening to eat supper. She will be receiving this treatment every Wednesday until the doctors decide to DC it.

Negative Bone Marrow Biopsy

I don't know if I am happy or alarmed, but today we learned that the bone marrow biopsy was negative for any infections. This is good news on the infection front. However, it indicates that Cathy's recent deterioration of lung function may be due to active rejection.

Two days in a row now Cathy has worked with the physical therapist. She is still only able tolerate being off of respiratory support for 30 to 45 minutes (and 45 minutes is pushing it). So these workouts are brief. But, God bless her, she is still trying.

The Blank Stares Have Been DC'd

Cathy managed a bit of exercise this morning and a little supper this evening. This evening she is alert and upbeat.

The blood given to her yesterday was successful, it raised the numbers that the doctors wanted raised. We have not received any updates on the bone marrow biopsy. The biopsy wound is still bleeding. A couple of Cathy's medications that have the potential to thin blood have been temporarily discontinued (DC'd to use the term I hear around here).

That's about it for this evening.

Back Where It Should Be

Cathy just finished receiving one unit of blood. Around 5 this afternoon she went onto the trach collar to eat some very late lunch or early supper. She did pretty good, she ate about one-fourth of a tilapia fillet and about half a portion of plain bow-tie pasta (she sure digs that bow-tie pasta).

For most of the day Cathy has been alert and interactive. Her friend Dianna and her daughters were here for a visit this afternoon. I think this stimulation helped keep her alert.

It looks like the added support has put Cathy's mental status back to where it should be (to use the phrase the doctor used on Friday). Now to determine if the requirement for added respiratory support is due to infection or rejection. Better yet.... a transplant.

Twinkle Twilkle Little Eyes

As I was waking up this morning I looked over and noticed that Cathy was staring in my direction. After I worked the creeks out of my bones and put on my glasses, I realized it was not the blank stare from last night. This stare had a set of twinkling eyes and a smile behind it. What a gift!

The respiratory support from the Bi-Pap that has brought Cathy out of her "reduced mental state" is the same as what the ventilator was providing her back in early July. I don't know if there is any significance to this, it just caught my attention. I will ask one of the pulmonologist about this when I get the opportunity.

With all the frequent blood draws and the bleeding from her wounds, Cathy is in the need of another blood transfusion. They haven't told us how many units. In the past it has typically been two units at a time. I've lost count, I think we are somewhere north of twelve units (one of these days I'll go back and read all the blogs and add them up).

The doctors want Cathy on the Bi-Pap continually except to eat and exercise. This morning Cathy went on the Bi-pap for a bit and ate some french toast and fruit. Within 45 minutes she was struggling and was 'going blank'. She is now back on the Bi-pap and smiling again.

Messing With Karma

The support that the Bi-Pap is giving Cathy was increased twice today. She was a little more alert this afternoon, however by this evening she is becoming 'blank' again.

For a short while this afternoon, while she was alert, Cathy was put on the trach collar so she could try and eat some real food. I managed to get her to eat about half a portion of plain bow-tie pasta and a little under a half a portion of couscous. The amount of nutrition she is receiving by the tube was decreased in an attempt to have her build an appetite.

Just before 6 pm, a blood sample was taken to test for her blood gas levels. The results of this sample were so bad, a resident from the ICU came up to Cathy's room to conduct an assessment in preparation of a possible transfer back down there. An additional blood sample will be drawn around midnight. I am packing thinks up tonight to avoid the middle of the night rush and confusion like we experienced during the last transfer to the ICU. Of course, since I have gone to the trouble of packing things up, she probably will not be transferred. (This is my hope, doing the old reverse psychology thing on karma).

A different type of dressing was applied to Cathy's pressure sore this afternoon. This one is a thick silicone pad that is meant to stay in place for several days. The location of the sore puts the dressing in the way of conducting proper 'sanitary procedures', so the dressing will likely need to be changed frequently anyway. We'll see how this works out. This sore stopped bleeding today. The bone marrow biopsy wound is a different story. This would is bleeding so much the dressings are being changed several times a day.

Guessing Games

The amount of respiratory support Cathy is receiving from the Bi-Pap was increased yesterday. It is getting harder and harder for Cathy's respiratory system to remove CO2. As a result (in the words of the resident from the pulmonary team) "Cathy's mental status isn't quite where it should be". I thought that it may have just been my paranoia over the past few days, but I thought that Cathy had become a little 'mentally distant'. She had a blank stare most of the time. This was one of the issues I wanted to discuss with a doctor today. This resident brought up this issue before I had the chance to ask. The theory is that the increased respiratory support will help remove the CO2 which will in turn improve Cathy's 'mental status'.

I also spoke with the attending physician responsible for treating infectious diseases. He stated that nothing has shown up on any of the latest cultures, even the mold that has always shown up in the past. It is to early for any results from the bone marrow biopsy. This doctor had a different twist on the reason for Cathy's 'mental status'. He thinks it could be due to the dialudid she has been taking for pain. Four months of dialudid, every four to six hours, may be taking its toll. He followed up this comment with a statement about pain management being the priority.

The one issue that I cannot even get a theory on, is how they are going to address Cathy's pressure sore. This sore was close to being healed when two days ago it became an open, bleeding, wound. Apply dressing, rotate positions, give antibiotics, and treat the pain is the approach that they are using. However, this is the same approach that has been used since August. I don't think it is working. When I question this, all I get are quiet looks and "yeah.......yeah......I know....... yeah....." and shrugged shoulders. Over the next couple days I will be working my way up the food chain with this question.

On the topic of pain, with the pressure sore now an open wound, Cathy's ever-present chronic headaches, and now a biopsy wound (within inches of her pressure sore if you can believe that), Cathy is continually fighting pain.

Cathy is under the care of a very persistent physical therapist. Today this therapist insisted on getting Cathy up out of bed for some marching in place (she cannot go far connected to the Bi-Pap) and leg exercises while sitting in a chair. Cathy had tears in her eyes, and at one point she begged me to help her convince the therapist that she was in to much pain. It tore me up to take the side of the therapist. After it was over, I think Cathy was glad she endured and exercised. It is needed for so many reasons.

A List Of Questions

Sorry for the late post this evening.

Today was an uneventful day for Cathy - no physical therapy, no eating, and no further set backs.

I have not spoken with a doctor in over a week. Tomorrow I am taking the day off work and camping out here until I have that opportunity. Sometimes Cathy's 'lip-speak' is a little tough to translate. So tomorrow I want to get some answers to question that I have been holding onto for several days.

Penne Pasta

This afternoon Cathy was on the trach collar just long enough to go for a short walk and eat some pasta, a little over an hour. As a result, she has a little more energy this evening.

There are no updates on the infection theories. Still waiting on test results.

Where's Waldo

Cathy was only able to tolerate the trach collar for a little over three hours again today. However, during that three hours a lot was accomplished. Cathy went through a procedure by the speech therapist to test her ability to swallow, she passed. Now she can officially eat. She also went for a cruise with the physical therapist up and down the hallway outside of her room (about 100 feet, give or take several feet). By the time she made it back to her room and ordered something to eat, she was starting to struggle to breath and wanted to go back on the Bi-pap. No food tonight.

Today Cathy was given another opinion regarding why she appears to be loosing energy and the ability to tolerate the trach collar. The latest theory is that there is an infection hiding out in her bone marrow. Sometime within the next day or so Cathy will undergo a procedure where they take samples of her bone marrow. These samples will be cultured and tested for evidence of an infection. At this time we do not know the full ramifications of a bone marrow infection or how it would be treated.

Lasting Longer Off Of The Bi-Pap

Cathy was not able to tolerate being on the trach collar long enough yesterday for us to attempt a stroll. She was only on the trach collar for three hours.

This afternoon she was on the trach collar for about six hours. A blood sample was drawn just before she went back on the Bi-Pap to test for blood gas levels. As of this blog posting we have not heard the results. I suspect that the CO2 is going to be a bit high and the pH a bit low. Just before being put back on the Bi-Pap, Cathy was struggling to breath and was beginning to 'be a little hard to communicate with'. She is sleeping soundly now.

Oh So Close

Dr. Saggar (the brother) stopped by Cathy's room this afternoon. During his assessment he expressed concern about Cathy's increasing need to be on the Bi-Pap. He said there is still concern for an infection but this increased dependence may also be due to chronic rejection. Every time she has a mucous blockage, more rejection may be occurring. For the first time a doctor has vocalized what Cathy has felt for weeks now. The gravity of what he said was lost at that moment due to what he said next.....

....."During the past several days there have been at least three offers of lungs for Cathy".....

These offers had to be turned down because they were not satisfactory lungs. Dr. Saggar emphasized that it is very important for Cathy to eat and stay strong. We are close, oh so close.

Cathy has been on the trach collar for one hour at the time of this blog posting. She is enjoying another California Roll without having to disconnect herself from respiratory support. If we can round up a walker or wheelchair, we are going to attempt a cruise down the hallway this afternoon.

No Walk In The Park

The highlight of Cathy's day today was a visit from Jessica (fresh from her first ever, and fruitful, visit to the Chumash Casino).

Cathy has not regained enough strength to do much. It has been a couple weeks since she has been out of bed for anything other than 'personal chores'. She has told me that tomorrow she would like to try.

The Nomadic Patient

Cathy was transferred out of the fourth floor ICU and into the seventh floor medical observation unit this morning. This is her ninth 'address' since being admitted last June. One of these days she is bound to put down some roots.

Tonight she is very tired. I think the move, and all the commotion that goes along with it, kept her awake all day.

New Feeding Schedule

Cathy was incrementally better again today. She did have an episode of low blood sugars this morning. It seems that the IV insulin is to much during the day when the tube feedings are off and not quite enough when she is receiving the feedings at night. The doctors adjusted her feeding schedule. Cathy is now receiving tube feeding around the clock. [If you want numbers: 50 ml per hour of Osmolite at 1.5 calories per ml, providing Cathy with 1800 calories per day by the tube.]

Last night the California roll went over so well that we went for it again tonight. That's gotta be another 150 to 200 calories.

Cathy is still waiting for a room to open up on the 7th floor. We hear that several others in this ICU are also waiting.

California Roll

Cathy spent the entire day on the Bi-Pap. We have been told that the doctors have written an order to move Cathy back up to the 7th floor. They must believe she is improving.

Cathy's hunger was back again this evening. Once again the opportunity to eat and the desire to eat are not occurring simultaneously. However, Cathy has been on the Bi-Pap enough to know how to disconnect and reconnect herself. She has been doing this to take drinks of water (and pop). She will disconnect the Bi-Pap at the trach, take her drink, swallow, then reconnect the hose to the trach. If she doesn't disconnect herself from the Bi-Pap there is a chance that she could aspirate the drink down into her lungs. Of course all this is without the approval of the nurses. Tonight she wanted to attempt this with food. I fetched a California Roll from the cafeteria and tonight Cathy ate the soft inside portions (crab and avocado) of an entire California Roll (Ummmm sushi).

Cathy is more alert tonight compared to last night. Looking back over the past several days, I'd say today was a good day.

No Comfort Food

Cathy was put on the trach collar this morning. Unfortunately she was only able to tolerate it for about an hour and a half. No time to satisfy her hunger pains.


When she is awake, she is upbeat and responsive. However, all afternoon she has only been awake in 10 to 15 minute increments.


There is not much else to update this evening.

Let Her Eat Cake

After several days of even the thought of food making Cathy nauseous, tonight Cathy has a desire to eat, something, anything, she is hungry. Unfortunately, Cathy cannot eat while on the ventilator. The current plan is to have her on the ventilator until tomorrow. If her blood gasses are OK in the morning, she will be put on the trach collar. Then she can eat. Hopefully she will still want to eat.

This morning Cathy had an ultrasound-type of procedure on her heart. We're not sure what they were looking for and the results have not been discussed with us yet.

Overall Cathy is doing better than yesterday, and a whole-lot better than Saturday. Her friend, Dianna, stopped by for a little while this morning. Cathy has been awake for most of the day.

Yesterday I mentioned the differing opinions that the doctors have about whether or not Cathy has a pneumonia. Cathy has shared with me her own opinion and told me that it was OK if I shared this opinion with everyone. Cathy believes that her body has resumed the rejection of her lungs. She mentioned this feeling to the attending physician yesterday. The attending said that it is a possibility but did not think that there is active rejection occurring. The only way to tell for sure would be to perform a biopsy. This biopsy would be performed by going inside her lung with a bronchyscope and taking a tissue sample from an area without scar tissue. She felt there was to much risk for this procedure to be performed at this time. Cathy and I are fearful that this latest set back is rejection related. Cathy knows her body and knows how she felt during the active rejection in the past.

Opinions

The attending physicians in the ICU rotated today. The new attending physician for Cathy's care stopped by to introduce herself and discuss her plans for treatment. During her discussion she stated her opinion that Cathy has "a touch of pneumonia". She believes that there is an infection hiding out somewhere in Cathy's lung (possibly in the upper lobe of the right lung). She did not think this will effect Cathy status on the transplant list, that determination will be up to the pumonary team (transplant team).

Cathy was kept on the ventilator. The settings were changed to a 'pressure support only' mode. This mode is pretty much the same as the support given by the bi-pap.

Two units of blood have been ordered for Cathy. I kinda thought this was going to happen. They have been drawing a lot of blood the past few days.

Morning Greetings

As I approached Cathy's ICU room this morning the curtains were pulled back and I could see her sitting up in bed. When she saw me approaching I was greeted with a huge smile. The doctors and nurses didn't have to say anything, I knew, she is much better than last night.

Cathy was kept on the ventilator overnight. Her blood gasses and pH have returned to her baseline values. In an hour or so from now she will be taken off of the ventilator. The doctors are still discussing whether the change will be to the trach collar or to the Bi-Pap.

Cathy does have a fever this morning and her headaches are hitting her with a vengeance. Its not a perfect day, but we'll take it.......

Resting On A Ventilator

Just before 5 this afternoon, we were told that Cathy's room was ready on the 7th floor. When the nurse attempted to wake Cathy up to prep her for the move, Cathy was unresponsive. She would wake up and just give a blank stare. A quick test of Cathy's arterial blood gasses and it was determined that her CO2 was back up to a dangerous level (over 100). Cathy was briefly put on the Bi-Pap (she had been on the trach collar since 9 am). The ICU doctors felt that a ventilator would be a better approach to quickly reducing the CO2 (and increase her blood's pH). Cathy was switched to a ventilator. By 7:30 this evening she was responding to questions and breathing easier (with the assistance of the ventilator).

The bottom line for the day is that she is staying in the ICU for now.

Results

The resident from the 7th floor medical team stopped by Cathy's ICU room a little while ago. He too was initially unaware of the reasons for Cathy's move.

He finally gave us the results from the CatScan: No new pulmonary invasions were observed (interpret: this is GOOD news). He also stated that all cultures taken during the past three days have grown nothing, also good news. His assumptions about the cause for this latest set-back was that Cathy was beginning to develop another mucuous blockage. Cathy also needs to be on respiratory support for a few hours during the day as well as during the night to keep her CO2 levels down.

No pneumonia!!! If I wasn't so tired from being woken up in the middle of the night I'd dance a jig (and if I knew how).

When They Speak, Everyone Jumps

It was shortly after 4:30 am. From a sound sleep Cathy and I were woken by the sudden flash of all the lights in the room being turned on and a transport nurse declaring "Good morning Mrs. Two-O-Mala, we are taking you to the ICU". Then, noticing me waking up from the couch, he declares "Good Morning Mr. Two-O-Mala". (I had given up months ago explaining the family politics and have accepted the fact that while at UCLA I am Cathy's other half and go by her surname. And my apologies to Jessica and Matt, I also gave up on trying to give the correct pronunciation of the last name).

"We need to get her down to the ICU". There was a tremendous sense of urgency. My only thought was that some doctor must have finally received the CatScan results and set things in motion with an urgency that you do not normally see. "This must be bad" were my thoughts. They barely moved this fast during Cathy's code blue.

As the sleep cleared from my eyes and I was completing the shoving of personal items in a bag, I noticed a mess on the floor on the opposite side of Cathy's bed. The respiratory therapist was wiping the floor with a towel under one foot while he was preparing the Bi-Pap for transporting (multitasking). He looked at me and said "yeah, a ceiling tile fell last night, I don't know how you two slept through it". (We were both exhausted from zero sleep the previous night). At that time, looking up, I noticed a wet spot on another ceiling tile and a spot where a fresh tile had been placed. (Evidently I slept through the repair also).

Within a few minutes we were dashing through the corridor on the way to the elevator and the fourth floor ICU (Oh no! Not the fourth floor ICU!). When we arrived at the ICU, a nurse that we both recognized asked me to give her a few moments while she settles Cathy in. "No problem", I said, "I'll go get a cup of coffee". Duh, we've been here before, this hospital does not have coffee available before 7:30 am on weekends. So off I go to find one of my favorite quite spots and wait.

Returning to Cathy's new address, I found her sleeping soundly. This gave me a small amount of relief, at least Cathy wasn't becomming anxious over being sent to the ICU. I found a comfortable corner in an uncomfortable chair with the intention of grabbing the first doctor I saw and get some answers. The nurse came into the room to tend to a beeping IV pump. I thought I would try my best communication skills and get some information from her. "So, the CatScan was that bad", in as casual a voice as I could muster. Her response: "I don't know anything about a CatScan". Not giving up I continued with an explanation about how we were told that if they found something on the CatScan Cathy would be transferred to the ICU. With the urgency with which she was transfered they must have found something serious. "Oh, no", she replied, "she was transferred out of the room because facility maintenance needed to get into the room to repair the ceiling. She came to this ICU because we are familiar with her. After the repairs are completed she will go back to the same room".

I guess we now know who has the stick around here.... Facility Maintenance.

The Ivy Forest

We have not heard anything about the results from the CatScan, and Cathy has not been moved to an ICU. If there had been evidence of a pneumonia found in the CatScan, I believe Cathy would have been transferred to an ICU. We will have to wait until morning rounds to confirm or disprove my beliefs.

This evening Cathy is doing much better than last night. A few moments ago I got the biggest and brightest smile that I have seen in at least three days. Her breathing is also a little less labored than this afternoon. She is still very week. It is hard for her to get in and out of bed or even reposition herself in bed.

Another IV pole was brought into the room this afternoon. For now, this pole is fitted with two more pumps and IV medications. Cathy has been switched to 24 hour a day IV insulin along with the panel of antibiotics and anti fungal medications.

A Run Home And A Home Run

I had to leave the hospital for a few hours this morning (a plumbing emergency at home and a task at work that needed to be completed). When I returned a little while ago I walked into Cathy's room to find her sitting up in bed and watching the tube. Her struggles for each breath were still very obvious, but she was awake and alert.

A Cat Scan was performed this morning. I am sure that as soon as the doctors have these results they will let us know.

While I was out, Cathy's friend Denise M. stopped by with some potato pancakes. Cathy loves potato pancakes. Cathy actually managed to eat a few bites. This is the first food she has taken by mouth in several days. Thank you Denise, home run.