Size 6

So you know how they say be careful what you wish for...

Christmas Day
So on Christmas Day, we headed over to the hospital. Nicole couldn't come in, so Chris waited with her in the family room while lil Christopher and I went to see Mom first. Mom was back to asking to get out of bed. Christopher and I tried to distract her, but she would not budge. This time, she wanted to take a shower. After about 10 minutes of us arguing, Mom said to me, "If you are not going to help, then you should just leave." She kicked me out!! On Christmas Day!! So I switched with Chris and he had a nice visit.

Friday, December 26
Chris picked up Victoria this morning, and we all headed over to the hospital. Physical therapy had already been in for the day, but she came back to give us some good news. Earlier that day, Mom told her about kicking me out the day before. Mom had said, "I feel bad about it, but I had to tell her how it was." First impression - YAY, she accurately remembered the day before! Then the therapist told me that Mom was able to sit on the side of the bed and hold herself up for about 15 minutes. Mom wanted to try to stand, so the therapist got the Med Surg shoes and socks and they tried. It was a no-go, but at least she was able to try! Mom is still insistent on taking a shower, so the therapist is going to try to get her into a special shower next week. Since Mom had such a great therapy day, she was wiped out, so it was another short visit.

It was either this day, or the day before, that the tech taking care of Mom told me her hair was so matted that she thought it would need to be cut out. Excuse me??

Saturday, December 27
Chris and the kids started for home early that morning. Dianne and I went to visit Mom that afternoon. When we got there, Mom was asleep. The nurse told us she was anxious that morning, so they gave her Ativan and Morphine. This was not my favorite news of the week. She was confused, and she was sleepy. Interesting things Mom said today:
"I think our squirrel is missing."
"The doctor told me I should be walking more each day."
"Wasn't I just holding the baby?"
"I think I am going to rename the baby."

She did however finally let me cut her nails (or claws as the nurses called them). For the last few days, her left arm had been hurting her, so she was not able to move it as much so this was fun (insert sarcastic facial expression here).

Sunday, December 28
Good news, the first thing I noticed when I entered the room was that the traych tube was green (had been white since day one). I checked, and it was size 6. Let the tube reduction begin! Also, the nurse corrected me - they would not go to size 2. We go size 6, size 4, then none!

However, Mom was not happy. Her arm was really hurting. If you were in the room with her, you would think her arm was on fire. Enter more pain medicine. Enter more confusion. Shortly after they gave her the meds, she was asleep.

Monday, December 29
Once again, her arm was really hurting. They had done a doppler to confirm there were no clots, and I believe they also x-rayed it. The doctor decided to give her a muscle relaxant in addition to pain meds. When I walked into the room, she would not talk to me at first. She was soooo mad because "I have been trying to call everyone today, and no one answers!" I tried to tell her that she does not have a phone, so she could not have called, but she didn't believe me. So I asked her who she wanted to call. At first she said Grandma, but then she decided she was in too much pain. Enter more pain medicine, and once again she fell asleep.

I spoke with the case manager. I told her about the hair conversation last week, and she agreed that they need to fix it, sans cutting. We discussed Mom's arm and she said therapy will be working on it with her. She also confirmed that Mom will be with them another 2 weeks or so, most likely until the tube is out all together.

Postnote - this picture is from our trip to Hoonah, Alaska, after a native american show.

My Christmas Wish

On Saturday, December 20, I got my Christmas wish! I went to visit Mom, and she knew who I was! She was awake, still confused and she was frustrated. I was able to use her traych attachment to let her talk. And she talked!! All she wanted to do was get out of bed to use the bathroom. No matter what I told her, she insisted that she had to get out of bed. No matter how I tried to change the subject, she wouldn't let it go. I posted some more cards, went over our "plan" again, and tried to keep her in bed. According to Mom, it was 2009, she had eye surgery in May, and that was how she wound up where she was. I didn't argue.

I called Cathy, and she was surprised to hear Mom's voice! Mom told Cathy how mean I was - yelling at her and "sitting on her" to keep her in bed. Cathy then found Grace for me. She was on her way to visit Grandma, so Mom was able to talk to both of them! By that time, she was falling asleep on the phone, so I left before she was able to talk to anyone else. Later that day, Dianne and Larry went for a visit, too. They were thrilled with how Mom was doing too, and they helped Mom to call Eileen. All in all, a good day!

On Sunday, Mom had some extra visitors. Chris, Christopher, Victoria and Ann joined me for a visit. Mom was happy to see them. Once again, she insisted on getting out of bed. Once again, she complained about how mean I was. I'll take it! =) With Chris's help, she picked on Christopher and Victoria.

On Wednesday, Christmas Eve, we were able to take Christopher and Nicole to visit Mom(Victoria went to Jacksonville to visit her other grandparents). I should mention that kids under 12 are not allowed. So for this week, we aged Christopher 2 years, and begged to get Nicole in. This time, Mom was good about not asking to get out of bed, but then again, she was tired from the moment we got there. They had her sitting on the edge of the bed for about 15 minutes earlier that day!! Go Mom !!! It was a short visit, but very sweet.

What's next?
Mom has been off the ventilator for 11 days now, so they took the machine out of the room! The next step is to start reducing the size of the traych tube. However, Mom is still coughing up a lot of secretions, so they tell me they will need to wait to start that process, and that it takes several weeks. For those of you that like details, she has a size 8 tube now. They will reduce it to size 6, wait for the hole to heal around it, change to size 4, wait, change to size 2, wait, and then remove the tube altogether and cover with a bandage until it heals completely. During this time, she will continue physical and speech therapy. However, all this will probably happen at the next facility in line... which I have to pick. Looks like I need to do my homework! Thanksfully, Mom narrowed it down for me to 2 places, but both are far away. I think I know what I am doing on Monday!

Merry Christmas to us, every one!

Postnote - this picture is from our first formal night on board the Radiance of the Seas, somewhere off the coast of Alaska.

96 Hours... Off the Vent!!

As of Monday, December 15 at 8:30 am, Mom has been off the ventilator! YAY!!

On Monday December 15, I spoke to Mom's Repseratory Tech (named Christopher, how appropriate). He said she was doing well, and they took her off the ventilator at about 8:30 that morning. He also said that he had spoken with the doctor that morning and they were going to keep mom off the machine not only all day, but all night too, for as long as she could handle.

On Tuesday December 15, at 7:30 in the morning, my cell phone rang... and my heart fell. They never call. And they never call that early. The nurse, said "Your mom is stable now"... (Oh crap, when wasn't she stable?) "so we moved her to room 111." My brain said "Huh? OH, ok, you mean for the last 3 weeks she wasn't always stable so she was in ICU, but now she has been stable for a while and so you can move her... OK, I get it. Don't do that again!" I said, THANKS! The nurse also told me she was now off the machine for 24 hours! YAY!

Wednesday and Thursday continued the trend. As of Friday morning, she is still off the machine! She is awake-ish. She still does not know where she is, but I am still being told this is normal. In general, she has her eyes closd, but this is not due to sedation, and when people walk in, she opens her eyes. She is not always as cooperative when nurses and doctors ask her questions.

So keep sending your good thoughts and prayers! They are working!

Postnote - the picture is from our trip to Hoonah, Alaska. I figured since mom is being precocious, this was a good picture!

Select Specialty Hospital

Select Specialty Hospital
On Tuesday, November 18, Mom transferred into Select (ICU bed 4 for those of you keeping track). I was told the transport would be at 7:15, so when I left work I went directly to the new place. I got there at 8:10, and she was not there yet. They told me to wait in the family room. There I bumped into an old friend - a 6 year old girl that was often in the ORMC waiting room. Mom arrived about 10 minutes later, and it took about 45 mins for them to settle her in the room. When I asked the paramedic how she did in transit, he said 'Great!'.

I have to say, I was not overly impressed with my first glance at this new hospital. First, the ratio of nurses to patients in ICU is 1:3 as opposed to ORMC where it was 1:2. When I got in the room, she was breathing hard, coughing a lot and her heart rate was up. The new ventilator tubes were not on the support hanger yet, so they were pulling down on the collar (i.e her neck!). When I asked to get someone to suction her out, it took nearly 25 mins and the nurse said she wasn't able to do it herself. However, once resperatory came in, they were fabulous. They took care of all the ventilator stuff, sectioned her, also noticed that the chest catheter suction had not been turned back on, so they fixed that, too. Mom calmed down after that as was able to rest. The next day, I spoke to her case worker, Marcia (Mar-see'-a) to advise of my displeasure (don't worry, I as nice-ish).

The next day, Mom's labs came back and her Creatinine was 1.6 (woo hoo!). Other than that, it was a non event day. I met her new infectious disease doctor, Dr Maria Rodriguez, and her new hospitalist, Dr Ramone. Both of them worked with Mom, and both want her to get well! Slowly they were replacing everything she came in with to be their own equipment. This night, it would be the NG tube. They had taken out what was there, and were trying to get a new tube down. This was not going very well. The nurse then asked Mom is she wanted the smaller tube (which she called something like 'dobhoff'), and Mom said yes. Over the next 10 days, this tube would get clogged at least 5 times and would need to be replaced.

On Thursday night, I had a fight with the charge nurse over what HIPAA Privacy means. He said that I could not get copies of the forms they asked me to sign, because I was not Power of Attorney (POA). He made me cry... it was just the last straw on a long day, week, month, etc and I thought the only safe place from the LOA question qould be the hospital! I told him as proxy, I didn't need LOA. Then he said he had no proof I was proxy. So let me see if I understand this logic... you want me to sign on her behalf to admit her and allow procedures, but I'm not authorized to know about her condition or to have copies of the documents I sign... ARGH! Once again, the next day I called Marcia.

On Thursday night / Friday, Mom spiked a fever. They ran cultures, and can you guess what they grew? Gram D Negative Rods! This time, it was Pseudomonas; they used the word septic again. Dr Rodriguez started her on some heavy duty antibiotics.

On Friday, they replace the central line in her neck with a PICC line in her right arm.

There was no progress of any kind over the weekend because a) its a weekend and b) she had an infection.

November 24 through November 30
On Monday, Grace happened to call the hospital to see how Mom was doing. Apparently, the answer was 'not so well.' Early in the morning, her BP dropped to something like 45/20 and her kidney function had stopped. Dianne, Larry and I went to the hospital. Once again, she was all bloated, but not quite to Michelin-man proportions. They had her BP up to about 90/45. When we touched her, she would pull away. Dr Rodriguez was there and explained to us that she expected this. Since Mom's kidneys had not fully healed, the rough antibiotics she was using on the Pseudomonas were causing this trouble. She reminded us that even though Mom's fever had been gone for days, she was still septic. They added medicines to keep her BP up, flooded her with fluids and changed some of the antibiotics. Before we left at about 6:30, the nurse gave us hope that Mom's urine output was coming back. From 6:30 am - roughly 5 pm, she put out 50 CCs. from 5 - 6:30 pm, she had about that amount. "Adequate" is 30 CCs per hour. We were hopeful as we left.

On Tuesday she was "critical but stable". Her output had normalized again to about 100 CCs per hour. Her Creatinine was 2.8. Good news, they removed her chest catheter this day.

On Wednesday morning, her BP dropped again, but not as low. They used medicine to get it back up. No labs were sent that morning. This is when I learned that they only do labs as needed instead of daily, and apparently they felt every other day was sufficient, and not everything was reported.

Thanksgiving day. Mom was doing well, but lethergic.

Friday, more lethargy. Nurses were starting to ask if she was on antidepressants. She had been prior to this point, so I said yes, but when they looked they found she was not. She was on Lexapro at home. After ICU at ORMC, they changed it to Seroquel. Apparently, this has a side effect of lowering BP so when her BP dropped, they stopped it and did not add something else. The nurse (Brady, love him!) asked and get the Lexapro restarted.

Over the weekend, I think she was very confused. On Saturday, they had her off the ventilator for 12 hours! On Sunday, she was wrecked! They had to sedate her to keep her breath rate below 30. She was out the whole time I was there. Her Creatinine was up to 3.8. They would not try to take her off the ventilator again until mid next week.

December 1 through December 7
Dr Rodriguez's group works one month rotations per hospital. As of 12/01, she moved to to Dr P Philips (where Mom works) and her partner became Mom's infectious disease doctor. I hope not to still have Mom at this place when 1/1 rolls around!

This week was really bad for me at work, and as a consequence I was only able to visit Mom on Tuesday night and she just slept the whole time. As I called through the week, I was told there was "no change". I also learned Thursday that she was off antidepressants again. And she had spent only short periods of time off the ventilator. [Note: the machine was only providing pressure support at this time. She is breathing all on her own, but the machine helps increase the amount of air she takes in.]

They changed out the small NG tube for the larger one this week, and put in an order for a percutaneous endoscopic gastrostomy (PEG) tube, which goes directly through the belly into the stomach, for the next week.

By Friday, I was very concerned, and I was having trouble getting a doctor to call me. I called Marcia (I think she dreads my calls, I don't know why) and we had a good call. Later that day, it was practically repeated with Dr Nelson (Dr Ramone had a death in the family, so all week it had been this other doctor from his group).

Bottom Line -> The 2 weeks of antibiotics had ended, so now we could focus on moving forward instead of standing still. This includes physical therapy, ventilator weaning, etc.

1. I told them that in my opinion, Mom was being sedated too much. When she would wake up, she would get 'anxious', which meant moving about a lot, so they would sedate her. I felt she needed to be awake and calm in order for her condition to improve. Dr Nelson agreed and ordered pill instead of IV Ativan so that it would be a more steady dose. He also ordered a stimulant (one of these days I will write down the name).
2. I also was worried about having the same PICC line in for two weeks, since that is what I was led to believe caused this snowball from hell! Dr Nelson advised that in general, a PICC line can stay in the same place for months. The concern is 'what is being given through the PICC line'. In the original case, it was the TPN (IV nutrition) that led to the sepsis. At this time, they were not planning on moving the line.
3. I felt she needed to be on antidepressants. Dr Nelson started back the Lexapro.
4. I wanted physical therapy to resume as her arms and legs were all stiff. Marcia confirmed it would begin on Monday.

On Saturday and Sunday, she was more awake, but not very responsive. I still think she is confused. Saturday, I got no reaction at all when I walked in. The nurse said she would respond sometimes, but when she was done she would just close her eyes. Gee, Mom being a brat?? =) So I put up some posters, cards and ornaments that I had brought with me and just kept talking to her. When the nurse came in an hour or so later, she said to Mom something like 'you're not even listening to your daughter?' Mom turned her head and looked at her as if to say 'my who?' On Sunday, she shut down completely and would not even look at me. While I have to admit that this hurt a little, I was ok with it because they gave me what I asked for. She was awake and calm.


December 8 through December 12
On Monday night, I brought more cards and a Christmas tree. I talked to her but did not ask if she knew me. She had spent 5 awake hours off the ventilator. All was well.

On Tuesday night, she was making a weird gargling noise. She had spent 5 awake hours off the ventilator again so that was good. She was trying to talk, but I could only hear one out out a few words. The respiratory tech, Ray, decided to try the attachment that helps patients talk. I got to hear my mommy for the first time in 2 months! And she said...

• Pat - Do you have my tonsils in a jar?
• Christine - (confused) Do you want your tonsils in a jar?
• Pat - No, I was just asking.
• Christine - Do you remember your surgery?
• Pat - Yes.
• Christine - Do you remember when your surgery was?
• Pat - April.
• Christine - Do you remember what year?
• Pat - (glassy eyed) I don't want to answer any more questions.

In my opinion, she was stuck at somepoint in her childhood when she had her tonsils removed. We talked a little while longer. I told her where she was and why (but not the year or who I was). I told her the ventilator was just helping, not doing it all, and she said "thank you, that is good to know." It was a very good night, at least for me.

On Wednesday, she went 12 hours off the ventilator! When I got there, she was tuckered out. I was nervous that maybe that was too much given the last experiment like that. The respiratory tech that night was Lynn, who also worked with Mom before. I told her about the last 12 hour day, and she said there were things she could do that night to help Mom rest so that she would be ok the next day, mainly to raise the pressure support to get her lungs a rest. I let her sleep.

On Thursday, Mom did 5 hours off, a break, and then 4 hours off. This was real progress! I was happy. Creatinine 3.0. Her blood urea nitrogen BUN climbing slightly (34 day before to 35 today), which is something else we watch with the kidneys since we want it to be 8-20. Her potassium has been fine (3.5 - 4.2) the whole time at this hospital.

On Friday, she only did 5 hours off the ventilator, but that was because of issues with other patients, not with her.

Looking forward
I can't believe I actually caught up to present. If all goes well, Mom will be in this hospital another 2 -3 weeks. The doctors told me once that they thought she would be off the machine completely by the end of next week. It is looking possible (knock on all things wooden!!) as long as there are no more setbacks. Once off the machine, they gradually reduce the size of the tube size 8 today) until the hole is covered with a band-aid and closes up. After this place, she will need a rehab facility for another 4 weeks or so to get her walking, talking, lifting, etc again. I estimate she will be home early January. Like Grandma, this means she will not be home for Christmas. Good news, Chris was able to get some leave approved and should be heading down here for Christmas week, maybe even with some of the kids. That will be nice.

Postnote - the picture is from our trip to Ketchikan, Alaska. Mom's first off boat use of the scooter.

Out of ICU - the Awakening

November 11, 2008 through November 18
The plan was for Mom to be in the step down ICU for a few days, and then transfer to Select Specialty Hospital on Friday to ween off the traych.

We caught up with some old friends during this week. The nurses and techs in both the ICU and step down ICU at ORMC are phenomenal! We could not ask for better care or better people. The nurse for her first two nights back in the unit was Angela. Angela was also the nurse she had her first three nights in ORMC. There was a tech named Tanya who also remembered and liked Mom. They took very good care of her.

Wednesday and Thursday were pretty much more of the same - critical but stable. Thursday night, Mom spiked a fever of about 102. That night, the doctors just ordered Tylenol to fight the fever.

Friday morning, when her fever still had not broken, the doctors decided to keep Mom at ORMC a few days longer while they ran some more cultures to figure out what was causing the fever. Concurrently, the surgeons were starting to worry that her colostomy was starting to scar closed, so they wanted to watch her, too. By Friday night, her fever came down and she looked more comfortable.

Saturday was more of the same. The cultures came back as growing Gram D Negative Rods. Her GCS rating was about a 7 each day this week.

The Awakening
Sunday November 16th. A glorious day. Mom woke up.

Grace called for her morning report from the nurses. The nurse happened to be in the room and said Mom was doing well, that she seemed to be responding to commands and did Grace want to say hello. The answer was a resounding "Yes!". So the nurse put the phone next to Mom's ear and Grace started talking. The next thing Grace heard was "Don't cry honey." Mom was responding to Grace's voice! Grace called me, and I went to see for myself. I think this was the most joyous ride to the hospital for me.

The nurses never told me what her GCS score was that day, but I would put it at 13-14. When I arrived, she started crying. Any time I mentioned family, or that we were happy she was awake, she started crying. After a little while, when she was more calm, I started making calls so everyone could say hello. She was able to hear from Chris, Victoria, Christopher, Nicole, Cathy, Grace, Grandma, Dianne, Larry and Ann. She was happy and yet she cried a lot that day.

When I talked to the doctors, Infectious Disease was not overly worried about the infection and Colo-rectal said they would probably keep her a week to watch the ostomy. This was at about 4:00. At about 7:30, the night nurse came in to tell me I needed me to put on gown and gloves since she was now considered in isolation again. The culture results came back with Stenotrophomonas Maltophilia, which is somewhat common with patients on ventilators.

I should mention that some doctors thought she had cellulitis (a skin infection) through her abdomen and legs. Others were calling it red man syndrome which is a side effect of the Vancomycin. This infection meant more Vanco.

I wound up working late on Monday and was unable to visit. The nurses said her day was about the same as Sunday. She was awake and responding to commands. Her temperature was still down. Overall, it was another good day.

On Tuesday, I received a call from the hospital at about 3:00. Mom was going to be moved to Select at 7:15 that night. The ORMC chapter of Mom's journey came to an end.

Postnote - the picture is from our trip to Mimi's Cafe with the kids while they were visiting in July.

Critical but Stable

From October 25 through October 30
"She is not out of the woods yet."

"Your mom is very very sick."

"There will be more tears ahead. She will get worse before she gets better."

"She is critical, but stable for now. That can change at any point."

I cannot express how many people said these things to us, or how many times. Doctors, nurses, and social workers all said the same thing. They told us to expect Pnuemonia since all ventilator patients get it. The told us other systems could fail. They told us that with foreign objects in the body (central line, vent tube, catheter, NG tube, Swan Ganz, etc) came the risk of infection. They said that even a cold could set her back weeks since she had no reserve to help her.

They told us this was going to be a long recovery. The doctors advised that she would spend a few more weeks in the ICU, then she would go to a place called Select Specialty Hospital and then probably a nursing home/rehab center before coming home.

Overall, she stayed stable this week. Her temperature was between 98 and 99 (while normal for her is ~96, the doctors call this normal). Her BP was about 155/55, which is where they wanted it to be. Her creatinine moved from 4.1 to 3.4, which is a good sign. Her urine output continued to climb slowly. Her Ph level improved. Her lung pressue went down to 55, still high, but better. They removed the Swan Ganz on Sunday. They removed the staples from her incision.

They started to lower some of her sedation. She would open her eyes a bit, but it did not appear that she recognized us. And if she woke up too much, she would bite at the ventilator tube and get aggitated. It was a trial and error process to try to find the right balance.

This week, Grace and Chris went to the hospital every day and I went to work. Since Mom was doing so well, Chris flew home Thursday night.

October 31
This was a big day for Mom. She was scheduled for her tracyostomy at 3:00. I had to work a few hours, and we went to the hospital. We had to wait a while, and got in just before 3:00. However, there was an emergency, so the surgeon was late. They took her back to the OR at about 4:45. It took about an hour, but since that meant she returned to her room at just about shift change time, we had to wait until 8:00 to see her.

Prior to the surgery, her breathing rate was high and she was anxious. This did not change after the surgery.

November 1 through November 11
Grace went home Saturday morning.

For the next, Mom took baby steps towards getting better and remained stable. No Pnuemonia - YAY! No more infections. Her creatinine continued to drop slowly to about 2.3.

Some days she would open her eyes, and soime days she would even nod or shake her head or follow commands. Some days you couldn't rouse her at all. We learned a new medical term, the Glasgow Coma Scale (GCS). On the scale (1-15), Mom scored between a 7 and 11 during this week.

Even after all of this time with her being stable, I was still being cautioned that she was not out of the woods. However, it was time for her to move on. Monday morning, the doctor wrote the order for her to move to the step down unit. It was Tuesday night before a bed opened up, and she moved again, this time to room 433.

.

Postnote - the picture is from our trip to Juneau, Alaska.

Hell Week

Sunday October 19.
It was a very weird day.

I arrived at the hospital, but had to wait a while before they would let me back to see her. In the waiting room, there was a whole family of people. I learned that their loved one was killed in a motorcycle accident the night before. They were all there to say goodbye before he was taken back for his organs to be harvested.

When I got in to see Mom, it was a mixed blessing. She was the most "herself" that she had been since before she was sick. Finally, the Dilaudid had warn off and she was back! But at the same time, she was very sick and in a lot of pain. So what do you think was the first thing she did? She didn't ask for a cup of coffee, or a cigarette (thank God!), or anything to eat. The first thing she did was to ask for more Dilaudid! I tried to tell her what the last week had been like, but she insisted that her pain was so intense that she wanted the Dilaudid. So at noon, she knew everything that had happened to her since roughly the night before. By 5:00, she couldn't remember what had happened that morning. The next day, she was gone again.

I learned later that during this period of clarity, Mom met with a social worker. It seems Mom knew what was coming, and knew I would need help. So she tried to make as many decisions as she could. She told the social worker what rehab centers she wanted to go to and asked her to help me if I needed to make hard decisions. It was over a week I think before I knew any of this.

She was not eating since she was still on the VPN (IV nutrition). She was spiking fevers, her blood pressure was dropping, her heart was racing (tachycardia) and in Afib (abnormal rhythm), and her breaths were shallower and faster (over 20 is considered high). None of which are good signs. In order to help keep up her BP, they were giving her tons (OK, maybe not literally) of saline. They also replaced her PICC line (that had been in her since 10/04) with a central line.

This might be a good point to mention her doctor situation. Once again, when she was admitted to ICU, there was debate over which doctors would be primary. This time, instead of being admitted to surgical critical care, she was admitted medically. So her primary doctors now were the Central Florida Pulmonary Group. What does this mean? The surgical critical care team has committed to:

• having the same attending surgeon on for 7 straight days,
• the attending is there all day with a staff of residents, and a resident there all night,
• daily family rounds at 4 pm for the family to get an update and ask all the questions you want, and
• being the doctors who look at the patient holistically to make decisions based on the big picture.

Without them, Mom had her surgeon (Gallagher), hospitalist (Mazer), Pulmonologist, Nephrologist, Cardiologist and Infectious Disease (Giron) doctors all making separate decisions. So if the Pulmonologist prescribed something when he came for his 10 minutes at 10 am, then the Nephrologist canceled that because it would hurt her kidneys when he came by in his 10 minutes at noon, and then infectious disease came by for his 10 minutes... you see where I am going with this?

It was Sunday that Grace decided to come down and help me out, to see for herself how things were. Her intention was to come down the following day. But the gods, or the Jet Blue website designers, conspired against that. So she would come on Tuesday morning.

Sunday was hard.

Monday October 20.
I worked all day. When I got to the hospital, Mom was swelling because of all the fluids they were giving her. We still didn't know what was happening, but her heart rhythm was back to normal. She was confused again. I decided at that time that I would take the next day off and go with Grace to the hospital after picking her up.

Also, since Wednesday prior I had been trying to get any of the doctors to call me. Because I typically visited at night, I missed all the doctors as they came to see her (except Dr Giron - he comes late). I looked at the chart since all the nurses kept telling me they were leaving post-it notes for the doctors. The notes were all in the inside flap of the chart. The nurse that night moved them to the next day's progress sheet so the doctor's couldn't miss it.

Monday was harder.

Tuesday October 21.
I got a call from the surgical team that morning. My concern was that she hadn't been out of bed but once in the 10 days since the surgery and she wasn't eating yet. The doctor (Santa Ana) told me that none of that was too critical for her abdominal healing. She said that we had to focus now on what was making her ill and then we could worry about the intestines since all signs were fine there.

I picked up Grace and we went to the hospital. The kept us waiting for a few hours. Finally, one of the pulmonologists came out to give us an update. It was about 3:00. Mom was in danger of kidney failure. She was already so swollen do to the fluids to keep up her heart rate and BP, and the treatment to get the kidneys going was more fluid. So they decided to intubate her to protect her lungs. The doctor was very nice; he talked to us for a good 20 minutes trying to explain everything. But I don't remember what he said. I was devastated. Grace and I went to make phone calls. I called Chris. I don't even think I was making sense (so Grace called him back). Chris decided to come down. I think it was about 5:00 when we finally got to see her. Because of the intubation, they had her sedated, and she would stay that way until extubated.

I asked the nurse if any of the other doctors had been in. She told me Dr Mazer had come in, seen the note, and said "I am not calling her. I don't know her and it is against HIPAA Privacy." WHAT!!! As the proxy, he is required to call me. I was pissed to say the least. This is why I started to hate him.

Chris's flight arrived at about 9 pm. The visiting hours in the ICU are 10 - 6 and then 8 - 9. When we picked up Chris, we called and the nurse said that we could come by. Just as we got there, the nurse was taking her for a CAT scan. So once again, we waited to see her before we visited a little while.

At some point that day, probably right after learning Mazer wouldn't talk to me, we started talking to the nurse about her doctor situation. They did not understand why she wasn't under surgical critical care. Neither did we. So they started helping us to push for the change.

Tuesday was harder.

Wednesday October 22.
That morning, we began to develop our routine. Grace would wake up, call to check on Mom, run on the treadmill, make a protein shake and then get ready to go to the hospital. At this point, they said the preliminary culture results from Sunday were showing MRSA (Methicillin-resistant Staphylococcus aureus) and VRE (Vancomycin-resistant enterococcus). Both are not good. Her white cell count was about 22,000 (over 10,000 is high).

Mom was more bloated than before. Her ventilator was set to 6 breaths per minute, and her overall rate was 24. That meant she was doing 18 on her own. Soon after we got to the hospital, the pulmonologist showed up. Today's was different from the day before. He was calling her condition sepsis. Then Drs Gallagher and Santa Ana came by to do rounds. The three of them then spoke for a while. We weren't necessarily supposed to hear, but the colo-rectal surgeons did not think sepsis. The surgeons talked to us for a while about her condition. They told us with the ventilator it was only a matter of time before she got pnuemonia. They told us to expect things to get worse before they would get better.

Maybe 15 minutes after those doctors left, and we had gone back into the waiting room, the nurse called us back in. Dr Mazer was there. We went back and I introduced myself "Hi Dr Mazer, we met the Saturday following surgery. I'm her daughter and her proxy." He was sooooo not happy to see us. I think if he could have he would have flogged the nurse for calling us back in. He starts his conversation with us, "Well, I don't know what to tell you. Right now I have more questions than answers." First, did he think that would make us say 'oh, gee, then we won't bother you anymore'?? Second, that is not what you tell the family of a woman in ICU. So I said something like "OK, so why don't we go talk it and combine all our questions and answers." He was not amused. Then he tried to pull the HIPAA card, but realized that wasn't going to fly. Things I believe about Dr Mazer following this conversation: he is a misogynist, he is an egotistical ass, and he lends no value to my mom's care.

Mazer told us the cardiologist wanted to do a swan ganz catheter and an echocardiogram (ECHO). The catheter would put leads next to her heart and lungs to measure the pressure. The ECHO is a sonogram of the heart. Both are diagnostic tools that helps figure out what is wrong. She was bloated because her kidneys were putting out less than she was taking in.

We spent the next several hours visiting with Mom. When we left at 6 pm, they still had not done the swan or the ECHO. When we called at 11 pm to check on her, still nothing. It was very frustrating.

Wednesday was harder.

Thursday October 23
During Grace's morning call, we learned that overnight she had become acidotic, her breathing rate increased and her blood pressure dropped. Her white cell count was coming down - 13,000. They said that her urine output fell below the "adequate" level (30 cc's per hour) and would need dialysis. We got to the hospital as quickly as we could.

She was in the cath lab getting the swan. We did not know this for a few days, but the nurses did not think she was going to survive the procedure, so they escorted us to the cath lab waiting room. We met the cardiologist and signed the consent forms, and then waited. It wasn't too long. The cardiologist told us the swan was successfully placed. The pressure in her lungs was 80 (normal is 30) which meant severe pulmonary hypertension. This was most likely caused by the many years of smoking. They also told us she had an enlarged heart, but this was not something that we should worry about.

Once she was back in her ICU room, we went back to visit. The ventilator was now set to 18, and her total rate was 24. Now she was only doing 6 per minute on her own. The ventilator was now doing more than just helping her breathe. It was also helping with the acidosis, which is something the kidneys should be doing, but were unable to at the moment.

The nurse told us she did not have MRSA or VRE. The PICC line had been infected with both a Strep and a Staph strain of bacteria. They changed her antibiotic back to Vancomycin. While we were visiting, we noticed that the swan line was bleeding. It appeared the stitch used to hold down the catheter nicked the line. They had to take her back to the cath lab to redo it.

At about this same time, the Nephrologist came around. He took us to a consultation room to discuss the dialysis... sort of. He told us what dialysis was and what the risks were to the patient. And then he told us that he was not going to do it today. He had visited her at about 6 am and in his opinion, her dialysis odds were 90% for. Over the last 9 hours, her urine output increased to above adequate, so now he was more 50%/50%. He told us he would re-evaluate her in the morning. The things to watch were her Creatinin level (less than 1 is normal) and her Potassium (K). This was the first really good news of the week.

Once again we tried to move forward with the change to surgical critical care (SCC). The nurse (Dave - Dave is awesome) was actively helping with this. He called Dr Santa Ana, who then told him that she had asked SCC to take the case the day before, but the resident on that day declined the case. When the attending was told this, he was angry and told the resident "we never turn down a patient." It seemed like all doctors agreed to it, but it was still not official.

Thursday was mixed.

Friday October 24
Her heart rate was hovering near 100. Lung pressure was 55. Urine output (think she is going to kill me for not only tracking this, but posting it??) was about 40-50 cc's. Creatinin was high, but potassium was ok. No dialysis today. Still sedated to keep her comfortable with the tube in her mouth. Temp was about 98. Ventilator rate 24, total breaths 24.

We thought today that we would learn she was under SCC now, but that was not the case. Both Gallagher and Santa Ana were off that day, so now we had to deal with a brand new person. He thought we were asking for the change because we were upset with the CRC's care. We tried to reinforce that the reason for the change was to have someone there all the time who can evaluate her as she changes throughout the day. He finally signed off. YAY!

We visited all day. Once again the doctors warned that there would be set backs. She was still very, very swollen. But overall, she had no major events and was stable all day.

Also, we noticed an improvement in her care that day after the SCC switch. The attending saw notes that said her belly was rigid and distended. So they ordered an ultrasound to take a look at what was happening. They also changed up some of her meds that would still do the intended result without hurting her kidneys more. They also moved off VPN and onto feeding through the NG tube.

Friday was a good day.

Post Note
At the beginning of this blog I mentioned the family I met that first day. I have met many families in the ICU waiting room. Some had good results, and some did not. But that one family (sticking together, celebrating their loved one's life so soon after his sudden death) has stayed with me. I have thought of them every day and counted my blessings. As bad as it gets, we are not yet at that point, and that is something for which I am very thankful.

.

The picture is from our trip to Alaska, on the Radiance of the Seas.

Post Surgery, Pre ICU

For the last week, I have been procrastinating a little... while I do remember many details, the week after surgery is a bit fuzzy for me so I apologize in advance.
As I mentioned, the night after the surgery, I spent the night with mom in her room. If you have never spent time in a hospital, let me tell you - you don't get much sleep. It seems like someone is always coming in to give meds or take vitals. And there is always some alarm beeping. And then there was the semi-regular "Christine, help me get out of the bed so I can go to the bathroom." So on Sunday morning, I slept in a bit. As I was getting ready to head over to the hospital, I got a call. Mom was being transferred to ICC - Intermediate Critical Care. I called Dianne, and we all headed over to the hospital. This was one of the longest rides to the hospital I had to make. I didn't really hear most of the phone call. I just heard ICC. I wasn't even sure what it meant, but it didn't sound good. I think I made it to the hospital in record time. I met Dianne and Larry on the 3rd floor since they told me she was moving to room 321. Apparently, we beat her there. So I went up to room 901 and caught them just as they were moving the bed out of the door.

Mom had accumulated so much stuff in her stay to date, that they needed a cart to move her belongings (to confess, some of it was mine). Mom was awake, but still did not understand what was going on. She had been asking for me, and calmed down slightly when I showed up. We all set off for room 321. It took some time to get her into the room. This was also a semi-private room, and they were moving her into the back side ("bed 2") next to the windows. The lady sharing the room had about a dozen visitors who were not happy being displaced while this happened (not that I cared). When we got in to see her, Mom thought she was in Plantation hospital (south Florida, near where I grew up). We kept telling her where she was and why. She would get frustrated at her being confused. I admit I was frustrated, too. I understood on Friday since she takes forever to come out of anesthesia (sp). I understood a bit on Saturday, too. But being over 48 hours post op, I expected my Mom back. I expected her to be in pain and have to fight with her to move about like she needed to. The doctors and nurses told me sometimes it takes a little longer after surgery for patients, especially older patients. I stayed with mom the rest of the day. I don't really remember much.

I should mention that they kept changing up her pain meds. So on Friday, it was PCA pump - push as needed only. I think it was Saturday afternoon that they changed it so that she would get a baseline amount, and still be able to push more if needed. By Monday, I think they changed from Dilotted (sp) to Morphine. When I arrived Monday afternoon, she was coming around. She seemed to know who, what, where, why and how she was. The only thing "wrong" was that she was having hallucinations. She told me and the nurse to "stop walking on your hands!" Also, she made it out of bed that day and into a chair. This was the happiest I had been in weeks. Finally, I thought, she was on her way home.

Tuesday - back to confusion. The nurse told me they changed her back to Dilotted. They were not able to get her out of bed. I asked her to ask the doctor to go back to morphine.

Wednesday - more confusion; in bed all day. That night, she was not only hallucinating, but thought Satan was pulling on her legs and trying to kill her. No matter what I did, every time the leg cuffs inflated (to help prevent blood clots), she would get really scared. I finally got permission to take the cuffs off for a little while. Again, I asked about changing the pain meds.

On Thursday, I called in the afternoon and learned she was doing well. They said she was "appropriate" (that is what they call it when you know who/where/when you are). So I headed over from work (got there just about 7:00 - shift change) expecting a good night. Instead, I walked into chaos. There were several doctors and nurses in her room, and more at the nurse's station. The day nurse was still there giving report to the night nurse. They told me they needed a few minutes before they could fill me in. I went into the room and she was very confused. She told me that she had to get me and Chris to school. When I told her she couldn't take us, she told me to call my Dad. Then she asked where Chris and Misty were. It was like being in a time machine. Meanwhile, there were all kinds of people coming in and out. Finally, they filled me in. At about 5:00 she spiked a high fever, her heart rate, BP and everything went out of whack. The extra doctors and nurses where from ICU. There was some 'debate' over how to send her to ICU. Apparently, there was some confusion prior to this point over who the primary doctor was. Dr Mazer was her hospitalist and the perceived lead. Dr Gallagher was the surgeon and the doctor who admitted her. The final call was that Gallagher was the lead and he wanted her sent to ICU under the care of the surgical critical care team since she was 6 days post op. By 9:00, they had her set up in the ICU (bed 6). I stayed a few more hours that night.

On Friday, my plan was to only work a few hours and then head to the hospital. I got a call at about noon that mom would be transferred to the step down ICU. It seems she went full circle, back to room 444. So again there was wind in my sails again. Only 15 hours in ICU, so it must not have been that bad, right. So I worked a little longer and got the hospital at about 6 pm. She was still confused, but they told me she was now on Morphine. They told me that it could take a little while for the Dilotted to clear the system. That night, she was very clingy with me. She wanted to hold my hand. She didn't want me to leave (she had a Vulcan death grip on my hand). Also, her heart rate was a little high and I guess there were some other things going on (fuzzy here) so her nurse had some other nurses in to check her out. Then Dr Giron (infectious disease) came by to examine her. He determined that she should be in isolation. By about 11 pm, she was moved to 448. It was a private room, but now you had to wear a gown and gloves while inside with her. She was still not ready for me to leave, so I decided to spend the night. They got me a reclining chair and I put it right next to her bed so I could hold her hand. We spent hours trying to get her to calm down and fall asleep. She was still not allowed to eat or drink, but was allowed ice chips. She would ask for ice chips periodically. I think we both fell asleep at about 3 am. At 4 am, I had to go potty, and moved in my chair. She had forgotten I was there and I scared her! We fell asleep again and woke when the nurse came in about 6 am. I asked Mom if it was OK if I went home for a little while. She said, "Sure, why not?" She had no memory of asking me to stay with her.

Saturday - I slept a few hours before my noon wake up call. Dianne and Micky were coming over to help me clean up the house in preparation for Mom's home coming. To tell the story right, Dianne and Micky had come over Tuesday and Thursday working on the house without me. Saturday's mission was the kitchen. We spent the whole day cleaning and organizing. Dianne is a task master! I was wiped out, so I called mom to see if she would mind if I didn't go over that night. Even if she did want me to come over, she said it was a good idea for me to get a night of actual rest.

And then, in a moment of deja vu, as I was getting ready to head over to the hospital Sunday, I got the call... Mom was moving back to ICU.

This is all I can handle for today.

.

Postnote - this picture is from our trip to Anchorage, Alaska.

The Surgery

So on October 3, Mom was admitted to ORMC. She was so dehydrated and malnourished that they spent the first week just trying to get her physically strong enough for surgery. At the same time, they wanted to rest the colon. So she spent that week on ice chips only getting TPN (nutrition) intravenously. To accomplish this, they put in a PIC (sp?) line - a semi-permanent IV line with a bigger needle than a normal IV. She also had depleted her Potassium, so they had to replace that. [Things I learned - if your potassium is either too low or too high, it will effect your heart. Normal is 3.0-5.0. At ORMC, they like 4.0.] Mom was so over it by this time; she just wanted the pain to end. She would often say, "Just knock me out for a week and wake me up when I am all better."

I should mention that the whole time (and every other time) in Dr Philips, Mom had a private room. At ORMC, she was admitted initially to the Burn Trauma Step-Down ICU on the 4th floor just to get her in the door while a room on the 9th floor was opening up. This (444) was a semi-private room. In a "what a small world" coincidence, the woman in the room with mom had at one point worked for the doctor's office my mom and I go to; so at some point, I am sure we met before. When they ran the first set of labs and put a heart monitor on her, they determined to keep her in this room since it was a more monitored floor and they were worried that her potassium level (about 1.9 at that time) would impact her heart function. Mom was not thrilled at having to share a room, but all in all, we could not have asked for a better roommate for her. Even though they were complete opposites, she was very nice and didn't mind my hanging out till late at night.

At 7:30 am on October 10, the surgery began to remove her Sigmoid colon. There was some miscommunication that day... Dianne, Larry and I were in the Family Room for the floor she was aligned to waiting to talk to the doctor after the surgery. This is where the floor nurses told me I could wait since it was very comfy. The surgical waiting was very crowded and the chairs are not comfy at all. Apparently, the staff in the surgical waiting room misunderstood where we were.. and forgot all about the cell phone number they collected from me!! So at about noon, we learned Mom was in recovery and that Dr Gallagher had come out at 11:15 looking for us but was now gone. I spent the next several hours trying to get the doctor paged in every way I knew how...

Meanwhile, they decided Mom would go to 9th floor after recovery, so we packed up her bags and moved to room 901. This was the most wonderful room she has ever been in while hospitalized here in Orlando. And the sad thing is, she doesn't remember being in there. It was a HUGE private room, with a HUGE bathroom, a nice TV with a VCR/DVD player, a murphy bed, a mini fridge, a reclining chair and adjustable room lighting. She moved into the room at about 4:00 (5 hours after surgery ended). For some reason, the doctors decided that immediately after surgery, she should be on a PCA pump for her pain control. [This made no sense to me since she was not going to be awake for hours following the surgery so she would in effect not be getting pain medicine during this time.] Well, Mom woke up in lots of pain. The orderlies tried to tell her to push her pain button, and she told them to, "Shut Up!" She was in and out of consciousness the rest of the night. When she would wake up, she would tell me she needed help getting up so she could go to the bathroom. No matter how many times I told her she didn't have to move to accomplish that, she would try to get out of bed. Also, she never really understood where she was or why she was there. I decided it would be best if I spent the night to make sure she didn't actually make it out of bed in this condition. Gotta love the murphy bed!! I miss that room...

Back tracking a little, at 6pm I did hear from one of the surgeons, Dr Santa Ana (resident with Dr Gallagher). Mom's Sigmoid was all twisted about; there was no doubt that she needed the surgery. They had removed the Sigmoid. She also had an ovarian cyst that got pulled into the twistiness, so they removed her left ovary and the cyst that went with it. They did not feel confident about trying to reconnect her plumbing due to the amount of inflammation in there, so they did a colostomy bag. They won't know if this is temporary or permanent for a couple of months, after she is more healed. They sent all the removed pieces to pathology (skipping ahead to the good news since it took about a week- no cancer!). At that time, Dr Santa Ana said recovery would be 5-12 days in the hospital, and another week or so at home.

The next morning, her Hospitalist (don't get me started on him, or the concept - both are bad) Dr Mazer came in to check on her. Now her potassium was too high. After a week of supplementing it, it was now almost 6.0. So now they had to give her medicines to reduce it! Dr Santa Ana, also came in to check the incision site, etc, and said everything was looking good. She confirmed that the only things removed were the Sigmoid and the ovary.

That whole day once again, Mom would wake up and not really know where she was, but she knew she was in pain. Several times the night before, she would call out for Dianne. [Dianne and I joked that she would get credit for the sleep over, but Mom didn't remember any of this later on.] They tried at on point to get her out of bed, but she fought us too much. I went home at about 2pm. I checked in with her nurses a few times and the rest of the day was more of the same.

This is a good place to stop... going to visit mom now.

The Begining

To tell this story right, I need to go back to the begining. Right before Mom and I went on our cruise to Alaska (7/3 - 7/15), she had developed Pnuemonia. Her doctor gave her antibiotics and increased her steriod dosage, but Mom refused to be hospitalized. "I am getting on that boat if it has to be on a stretcher!" The medicine seemed to work and we had a lovely time on the cruise. However, the day after our return, she told me she needed to go to the hospital and it turns out the pnuemonia returned.

She spent the next week in Dr P Phillips Hospital, where she works, where they treated her with more anitbiotics and higher steriod doses. They told her to expect to be out of work about 6 weeks as she recovered.

During her recovery, and just a few days after the kids went back home to VA, Mom had an attack of Diverticulitis. This had also happened following her last hospitalization when they were tapering down her steriod doses, so she figured it was just a side effect of that. And, being Mom, instead of going straight to the doctor, she decided she could tough it out (and she didnt want to go back into the hospital). So after 10 days or so, we finally called the doctor to get medicine. After the 10 day dose, she didnt feel better...but she waited another week or so before admitting she needed help and let me take her to the hospital. So, that was how she spent August.. in pain and in denial.

On September 6, we went back to Dr Phillips and she was admitted. At that time, the CAT scan showed inflammation, but no abcess. They put her on the same meds she had taken at home, and better pain medicine. They tried (twice) to do a Colonoscopy, but her Sygmoid Colon was so inflammed the scope could not pass. When the inflammation did not subside after about a week, they called in Infectious Disease doctors to try new meds; still no reduction. They did another CAT scan, and this time they believed there was an abcess. So then they called in a general surgeon to consult. The surgeon did not feel it was the right time for surgery. They were going to send her to have the abcess drained, but the staff involved in that said it was in a bad spot. Another week passed, and they decided to send her home so that she could build up her stength and have the surgery to remove the Sygmoid in a few months.

So on September 25, I took her home. They had a visiting nurse (Rose - very nice) show me how to give her the next 3 days of at home IV medicines. She was not eatting enough. She was not drinking enough. She was very depressed. At this point now, she had been in pain for about 7 weeks.

So at her 1 week post discharge follow up (with the Infection Disease doctor - Dr Giron), he noted that not only wasn't she getting better, but she was doing worse. He advised that she see a Colo-Rectal surgeon instead of the general surgeon. Mom didn't want to hurt the general surgeon's feelings. So Dr Giron said, "Who's number 1? YOU ARE. Who's number 2? YOU ARE. Who's number 3? YOU ARE. Don't worry about hurting a doctor's feelings. You need to do what is right for you." He got her in to see Dr Gallagher the next afternoon. He walked into the room, took one look, and said he should be in the hospital. He had her admitted to Orlando Regional Medical Center (ORMC) right away.

(going in to see Mom now... post more later)

Starting the Blog

Grace and I were talking about creating a way for folks to track Mom's progress without the dozens of phone calls, and I think this may work. The first few weeks are going to be from memory. Then, I will enter the data we collected daily during our visits. And then moving forward, I will post as I get new information.

I welcome your feedback. If I can make this better, let me know.

I also appreciate all your support!!

Christine