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.