Looking Up

Friday morning Carl was sitting up in bed and anxious to get going. Some of the effects of the sedation cocktail have still to wear off but he was more like himself than he has been in the last 3 weeks.
Guess who was up taking a few steps? Indeed! We are very encouraged. Yesterday was a quiet day watching TV and waiting for a room on the Respirology floor to become available. They removed the central line from his neck. His O2 stats are fluctuating but he can maintain high numbers without his heart rate soaring. All great news!
As a precaution he is back on antibiotics by IV for another 7 days. He has a low grade fever and the doctor wants to make sure there is nothing "brewing" in his lungs. The last traces of the pneumonia are finally gone.
 The staff in the ICU at the Victoria Hospital have been magnificent not only in the care they have given Carl but the consideration toward me. I am very grateful for their support.
We just want to be back on the transplant list and home. ♥

Well that sucks!

My mother would chastise me that that comment was not very ladylike. But, some days you have to tell it like it is.
This morning after rounds when the team gets together for a chin wag they decided Carl would have to go back on the ventilator. I wasn't at the hospital yet when all this was going down. The social worker filled me in.

"mother approved ....lol"

Carl slept a total of 45 minutes all night. He was extremely agitated all day and night and his O2 levels were in the basement and his heart rate was sky high. At the last moment the Dr. decided to try the non re breather mask at 100% in the hopes it would do the trick. They had tried the BiPap machine and he tolerated that for 5 minutes. Well, his heart rate came down and the O2 levels went up. Everyone was walking around all day with their digits crossed.
He was still agitated today and when he is determined look out!
When I left at 5pm he was resting. We will see what tomorrow brings.

Ventilator is Out.

Good news at last. I called the hospital this morning to see how Carl had slept and his nurse told me the Dr.'s were doing rounds and she would call me back. When she called and said they had decided it was time to take out the ventilator I was very excited. I quickly headed up to the hospital where they explained this would be a trial extubation and at the first sign of trouble he would be intubated again. At 11:20 this morning they removed the ventilator. Everyone stood around watching him. The doctor was waiting to make sure he would not be in any distress. If his stats dropped he would be back on the ventilator. They checked him at 30 min, 1 hour and 2 hours later and he was still in the 90's.

I was some what delighted, to put it midly! 
The bronchospastic cough has gone too!! What a relief for him. ♥

Spent the rest of the day trying to get through to him. It will take several days for the sedation to wear off. He managed to croak out my name with a very raspy voice so I knew that he was aware some of the time. He tends to fade in and out which is perfectly normal considering the amount of medication he has been on for the last 2 weeks. We still have to get the feeding tube out as soon as they are sure he has his swallow reflex and he has to get his strength back.

This is the first positive in over two weeks. His respiroligist should be in to see him tomorrow and I know he will be as happy as we are. Dr M will notify Toronto and we will be back on the "Active" list.

I came home made some phone calls, ate a hot supper and fell asleep in the chair for 2 hours.

Bronchospasm cough

The last few days the cough has continued. There is some discussion whether it is the fibrosis alone or a combination of the fibrosis and the ventilator tube. Today we had a mile stone! They turned the ventilator pressure off for 5 minutes and some of the numbers bounced a little, nothing alarming, then they turned the pressure back  to 5 for 2 hours and he maintained his levels with out having to increase the oxygen. He has been reset back to a pressure of 10. Now, he was sedated and not moving around but the RT's were very pleased and gave it a thumbs up. That is the most positive report I have had in the last 2 weeks.
Tomorrow they will try it again and if we have as good an outcome as today they may consider removing the ventilator.
Carl has been moved to a different room in the ICU. This one has a power lift in the ceiling and I watched them scoop him up and deposit him in the chair today. It was very impressive. He was sedated most of the day, every time a coughing fit started they gave him a bullas of sedation to help him to recover.
He has had the three days of steroids and they are keeping him on a reduced dose, higher than his usual. It looks like it is working.
My heartfelt thanks for all the prayers and kind words. They have meant the world to me.

It started out to be a good day.

I arrived this morning to find Carl seated in a large chair. Glasses on and fairly cognizant of his surroundings. I was delighted. (insert very large happy face) Dr Mura came in and was able to speak to Carl as well and we were pretty sure he was following along with the conversation. It was pretty evident that Carl wanted to know when the tubes would be coming out and he was distressed to learn that we just don't know. He wrote on the white board , something that looked like "nightmare." Broke my heart. Dr Mura spoke to him very encouragingly and told Carl the he will be back every day to see him.
The Dr told him that they are going to be doing a 3 day  series of steroid treatment. As of 5:30 tonight it had still not come up from the pharmacy. (insert frown face) I am trying to be patient.
I had to leave for an appointment around 3pm and when I got back things were not as good as the morning. As the sedation wears off the need to cough increases, then he is more aware of the tubes, which he wants to grab because he can not get his breath, which made him cough worse. Then respirology came in to suction his lungs which causes him to cough again. It was a viscous circle.
The gave him more of the new sedation, it didn't work, then he had a terrible coughing spell, the spasms caused the tubes to pop apart on the ventilator and I had to call for help. It was traumatic for him and for me. They gave him stronger sedation in 10 minute bullas, Every time the 10 minutes was up he started coughing again. They gave him another dose and called the ICU Doctor to come in. He may have to be sedated more for a while. Perhaps it was too soon to bring him all the way out.
His respirologist did say that when the tube comes out and he is back on the active list he will be a Status 3.
There is nothing worse in the world than standing there watching this and not being able to do a damn thing to help!

Baby Steps

I have been sick for the last couple of days with a nasty cold. Of course this meant that I banned myself from the ICU. The nurses were very kind and I called them several times a day and kept informed on Carl's progress.
Last night I suddenly realized that although I was still coughing I felt better than I had in days. That is when a massive anxiety attack hit me. Nothing would do but I HAD to see him. I thru myself together, and believe me I was not a pretty sight and tore up to the hospital. (The "droplet precautions" have been lifted but I will still wear a mask until this cold passes. The darn thing causes my glasses fog up.)
He was as glad to see me as I was to see him. We didn't have much time because it was shift change in an hour. It gave me an opportunity to ask questions of the nurse, in front of Carl, so that he would hear from her that he is IMPROVING. The last X-ray shows a minimal improvement. The ventilator O2 has been turned down slightly. The pressure is still being maintained. The fever is gone. The lab work has all come back bacteria free. These are baby steps but they are in the right direction. I just want him to come home. We had no idea a week ago that  we would be at this point. He is still lightly sedated so he can tolerate the ventilator and drifts off every now and then. This week they are going to repeat the CT Scan and compare it with the one he had previously and today we should have the results from Friday's bronchoscopy.

Not much to report.

Been at the hospital since 10:30 this morning. Another fever 39.1 this time. All the tests came back no bacteria present. Dr's mystified. They are running another batch just in case something got missed.
 Possibly another bronchoscopy tomorrow, which as he already has a tube down his throat will be rather easy. They will just sedate him. He is conscious just lightly sedated. He is breathing on his own with the help of the ventilator to maintain pressure in the lungs. He is frustrated he can't speak.
 Physios came in today and got him standing beside the bed and he even took 2 steps. That wiped him right out. 
The presence of the ventilator means were are on hold for transplant. We knew when we were approved that if he ever ended up in the ICU intubated this would happen we just didn't expect that it would. When he comes off the ventilator we hope to be back on the active list. Time will tell. Still deep in the woods.

From Bad to Worse

No good news I am afraid. The hospital called me at 3:45 this morning to say they were taking Carl to the ICU. He was going to be ventilated. I wanted to know if they could wait until I got there so I could at least speak to him but they said, no. I got dressed and hurried up there anyway. The Dr came out to speak to me and he didn't have much encouragement. They were planning to do a bronchoscopy as well. 
I called Jason, Carl's son, and he came. 
Carl is in a chemically induced coma and on a ventilator. A terrifying sight to be sure.
This morning we will have a meeting with the Dr's after rounds. I will know more then.

Bi Pap

This morning I found Carl worse than when I left him yesterday. He was running another fever and is very sick. As the day progressed the fever broke. Thank goodness for that however, his respiration rate is very high and they called for another Xray and blood gases. They have moved him to another semi isolation room on the 5th floor in Respiratory. His antibiotics have been stepped up to meet a broader range of infections. He was seen by another couple of Doctors. As one of them put it, "You are not out of the wood, you are in it." They are very concerned and have put him on a BiPap Ventilatory Support System which will help him breathe. This is a very tight fitting mask with head gear to hold it on. It is claustrophobic to say the least. It forces air into his lungs so he doesn't have to try so hard to breathe. He can neither blow his nose, take a drink of water or use the phone while it is on. They will take it off every couple of hours and switch to the other mask to give him a break. The lungs are a tremendous organ. We don't use a fraction of their capacity. When we get a cold or infection we have all the reserve capability to help us continue to breathe. With interstitial lung disease you loose that reserve capability. As my mother said, "We didn't sign-up for this."

The One Am Drive.

This morning I awoke at 1am to find Carl in some distress. He was very short of breath and was coughing dreadfully. I turned up the concentrator and by the time I got back in the room he was shivering with cold and sweating. I got dressed and called the ambulance.

Off he went to the hospital with me flying behind in my little blue bug. By the time I got there he was being admitted and I was made to wait in the germ filled waiting room for almost an hour! Toronto General Hospital includes the "caregiver" in every aspect of care. Being excluded in London was upsetting. Finally I found a nurse who let me into the Pod area.
Carl had a temperature of over 103F, which in adults is dangerous. They instantly put him on fluids and antibiotics. His breathing was so bad he could only speak 3 word sentences.
Last week we thought perhaps he might have a slight infection so he was put on some drugs to stave off this very thing happening. Whatever this "bug" is it was determined to get through.
We had a parade of Doctors and Respiroigist interns in to see him. They were so impressed they decided to keep him there ♥

He has pneumonia for sure, what kind we don't know yet. They are upping his prednisone to 60 mg from 15mg a day as well as aggressive antibiotics.
They kicked me out at 10:30 this morning and told me to go home and sleep. I tried to nap for about 3 hours but wasn't too successful.
Around supper time I was back and found him resting, still very short of breath even on 15L and the NR mask. At least the fever has broken and with the oximizer he was able to eat something. He had to go back on the mask afterwards as the O2 stats started to drop again.
He is in a private semi isolation unit with his own executive bathroom ( la tea dah). He has his tablet so he can listed to his tunes. Hopefully we will both put in a quiet night. Note to self: cancel all this weeks appointments.

Physio and good news

We are now set up to do physio two days a week in London. What a relief. That drive was getting to be a bit much for both of us. With the price of gas and parking it was the cause of some financial pain to say nothing of rush hour!

Susan , behind the wheel, on the Gardiner Expressway, I kid you not ♥

Carl has agreed to take part in a skeletal musculature study for U of T. This specifically for pre and post lung transplant patients. It is only 4 appointments over the course of his experience. If they gain some insight into recovery health down the line, well so be it.

We are thrilled to hear that one of our transplant family received her gift of Life on Saturday. Our heartfelt thanks go to the donor family on our friend's behalf.
From sorrow there is great joy. We look forward seeing her in Toronto soon.
Love and a fist bump to you Gail !!!

Tomorrow I am off to the blood donor clinic, they want me, isn't that nice? I am in that blood group that is 8% of the population. So when they start calling and asking me I better get a move on.

An hour or two of my time is the least I can do.... and they have really good cookies <big grin>