This was a week of ups and downs, but more ups than downs. I actually made it almost 3 days without crying.

Didn't do much for the holiday week-end. The guys got all the wood and insulation put up and covered with plastic right before the rains came. And that's been the last work done. As with most projects, there have been some glitches. Lowe's didn't come to measure for the door until Wednesday and I can't order the door until I get the specs on what size to order. And, the siding can't be finished until the door is hung. So, we've been at a standstill all week. I was able to keep the dumpster so that helped. Maybe I'll get an email about the quote tomorrow.

I did go to Emily's for dinner on Monday. Bryan smoked meatloaf and it was really good. Didn't stay a long time. I find that I still get nervous around people, even though it is family. So, I ate and ran, didn't even stay for dessert. But dinner was good anyway.

I went through some things Tuesday and did normal things, like all the laundry. It had been so long since I did it all instead of just what I needed for 3 or 4 days. I looked all over for the flag that Bill got when he retired from the Air Force and finally found it in a back corner shelf of the coat closet. Now if I could only find his mounting of ribbons and his box of medals. I still have a few more places to look for those. I also checked on the kitties and they are better, but not ready to come home.

Tuesday evening the crematory called and said that everything was ready and if I was going to be home she would bring everything by. That was tough. It wasn't hard to read the death certificate, but it was extremely hard to open that box with the container of ashes. But, I did it. I was surprised at how heavy it was! I was also given a small Ziploc bag of very fine ash that could be used in jewelry or decoration. I have decided that I'm not going to divide his ashes. They are all going to be buried.

Wednesday I called the district Veteran's Office and there was no answer, or voicemail. I can understand if the office is closed, but there should be, at the very least a voicemail, and possibly have the calls forwarded to a cellphone. So, instead of waiting any longer, I gathered my list of places that needed notified since I had the death certificates and called them all myself. Surprisingly, it was all very easy to do. The customer service reps with all of the different places were very polite and not overly solicitous with condolences. Everyone was contacted and paperwork is starting to come in. I'm still waiting on the biggies, the VA, SS, and the military. 

Yesterday I was feeling a little restless, so I left early in the morning and drove to the Arkansas State Veteran's Cemetary. It's about an hour and a half away and I wanted to check it out in person before making a decision of using it. It is a very lovely, serene setting. There are several sections and since it is only about 2 years old, there are a lot of available plots. I wasn't able to talk to anyone as the door was locked, at least on the end of the visitor center I was at. But, I drove through it. There's a flag plaza and further down is a committal pavilion where services can be held that overlooks a pond. From what I read today, they will not open a grave while the family it present. So, the ceremony will be held in the pavilion and after we leave, they will bury his ashes. I think Bill would appreciate the fact that it's out in the country. He knew I liked driving on country roads instead of highways. So, once I get the packet from the VA I can make those arrangements. 

Today I hadn't planned on doing any "business", but when I went to the grocery store, the debit card was declined. So, I went home and got my packet of everything and headed to the bank. The lobby is open by appointment only, so I sat in the parking lot and called them. I hadn't thought that the debit card was just in Bill's name (I always had the checkbook) and that was why it was declined. Social Security doesn't waste any time. When they are notified of a death, they don't sit on it! I  was able to get a new debit card in my name, and until I know that all automatic deposits have been made, I don't have to do anything with the account. Once everything has come in his name, I can have his name taken off the account. I will be able to keep the same account. We've had it for 30 years and I really didn't want to learn a new account number. They made a copy of the death certificate and just told me to call when I was ready to redo the account. The girl was nice enough to bring everything to me in the parking lot. While I was sitting there I called the Credit Union and talked to a friend who works there. They were also aware he had died and that the military deposit was going to be deposited and then immediately reversed. Bobbie told me she had just mailed me a letter about it. I told her I knew they were going to do it. And the same applies, when everything in Bill's name has been processed, it will be changed over to just my name.

I figured after that I may as well contact the utility companies and was able to transfer all of those to my name with no trouble at all. I was afraid I was going to have to pay deposits again, but I was on all of the accounts as a responsible party so it was just a name change. I did have to get a new account number for the gas company, but no deposits.

I've felt like I didn't do anything today, but I did. I told Emily the strange thing was that my eyes hurt like I had been crying for hours, and I hadn't shed a tear! So, I don't know what that was about.

I checked on the cats again yesterday afternoon and they are much better. Margaret said that yesterday (Thursday) was the first day that Cat had not thrown up. And they've been there a week! She said Mouse is still sneezing, but not as much. But, he doesn't want to release them yet since they had to come back so soon after the last time.

I'm going shopping with Emily and the girls tomorrow. I need some new shoes and there's a Skechers store at the Tanger Outlet Mall in Mississippi, just south of Memphis. I told her I don't know how long I'll hold up. I'm not the best shopper to begin with and she is a marathon shopper. But, she said there are only a few places they need to go. So, we'll see what happens.

That's about it. I've had a couple of sleepless nights this week. I'm not sure why as I've gone right to sleep. But, when I wake up about an hour later, which is normal, I can't go back to sleep, even with Benadryl. But, I don't have to get up at any special time, so I've gotten up and played computer games in the dark until I can't see straight. We'll see what happens tonight. I don't want to get in the habit of taking something to help me sleep. I take enough pills as it is.

It doesn't seem possible that May is almost over already. It already feels like summer and the forecast for us is 90s next week already. I hate to see what July and August will be like!

It has been one week now since Bill has passed away and many are wondering how I'm doing. I think I'm doing OK. Granted I still have moments when a hug from a grandson, who is now bigger than me, makes me tear up, or the tears that come with sympathy cards or messages start a marathon session of tears. But, for the most part, I think I'm doing OK.

It helps that is has been a busy week with the destruction/reconstruction of the storage area. As most projects go, there have been some unexpected things pop up, but as of yesterday afternoon, when the storm hit, the new insulation and plywood was all finished and covered in plastic sheeting. I was hoping the siding could start going on today, but we've got a nasty storm headed our way right now, so I don't think any work will get done today. But, that's OK, too. The area is protected.

I haven't been able to accomplish too much with the business part of death because I still don't have any death certificates! I don't know if the COVID-19 deaths are slowing things down at the crime lab in Tennessee, but as far as I know, the crematory has not received them. And, anything official has to have a certified death certificate. I've managed a few things such as cancelling his phone line and his DirecTv account. They couldn't just transfer it to my name, according to AT&T. I had to set up a new account. But, my bill is going to be half of what we were paying for a full year before going up to full price and then I can always bargain with them. Yet, when I called DirecTV, they said I could just transfer the old one to my name. So, his has been cancelled, my new dish and receivers were installed yesterday, and I'm not getting all the channels I'm supposed to, and I keep getting the screensaver during the middle of a program. It keeps telling me there's no signal, yet, I still get sound from the program and I can just hit the exit button and the screensaver goes away and the program is back. It's going to take a little getting used to. But, the installer only lives a block away so he said to call him directly if there is any problem. Of course with the rain today the cloud cover will make it hard.

People have been asking when Bill's service will be and of course the answer is still "I don't know, I haven't received his ashes yet". I think I have it narrowed down to the end of June. And while that seems like a long time to wait, it's not like most people think a funeral should be, as in being held soon after death. So, we wait.

I did finish his obituary yesterday and am uploading it to the crematory this morning. I found out from the newspaper that I can't submit it directly to them, it has to come from a funeral home. I guess that makes it "official". I guess they will bill be for it since the crematory has already been paid. It is not "the story of his life" like they suggested. I don't like those myself, so the one that I wrote is what I wanted. And since I used to be the obituary desk when I worked at the newspaper, I knew how to do it. I did find it a little harder to do when it's your husband, but I think it is tasteful. I'll upload it here in another post.

I had an unusual encounter a couple of days ago. Bryan and I went to Lowe's to buy the insulation and wood and we looked at security doors for the new access. I found one I liked online and of course they didn't have it in the store. I'm going to let Lowe's install it and when I was setting it up and chatting with the associate about why we needed it, he stopped and asked if I lived on Holly St in about the 1600 block. I told him yes, but he had the wrong block and when I told him the address, he said he thought it was his parent's house. Sure enough, when I asked his name, it was his parent's house! He remembered the storage area well and said that yes, it always stayed wet with them too. He also said that he and his wife lived in the apartment for a few months when he returned from the army. Talk about a small world!

We got a new great-grandson Monday. Bill would have loved to have seen his picture, especially with his big sisters holding him. Maybe they will tell him stories of his great-grandpa.

That's all I've got for today. I still have to decide what to do with this blog. I miss writing it. It's been suggested by more than one person that I turn it into a book. I'll have to really think on that.

Have a good holiday week-end! Remember the fallen who gave their lives for the freedoms we have. But, please, don't thank current members, their day is in November. So many people get them all lumped together. Let this day remain for the fallen.

William L Haven, Jr. passed away peacefully on May 16, 2020 with his wife at his side.

I was going to make this post his obituary, but when I started writing it, my mind just stopped working. So, the rest is just going to be a regular post.

I had stayed at the hospital, of course and while he had a fairly quiet night, his breathing changed some and he was doing more guppy breathing which is more gasping that regular breathing. His blood pressure was again fluctuating and his oxygen sats were irregular. I couldn't tell if it was from the breathing or if he had his hand closed over the probe. I did try to open his hand and his fingers had contracted some in the night. And, as usual, it was very swollen.

When the lung Dr. came in he said that he understood that we were not going to make any additional treatment changes and I told him yes. He then came and sat down beside me and asked if we were Christian folks. I told him yes and he told me that keeping Bill with us was keeping him from his glory. That really hit home to me. So when Dr. Yaranov came in a few minutes later, I told him it was time to stop everything. He didn't hesitate and just said that he would go get the paperwork started and shut the door as he left the room.

I told Bill that I was so blessed to have known him and thanked him for showing me the person I could be. I also told him that he had told me that life with him would be an adventure, and it was. He barely opened his eyes then for just a split second.

I was assigned a nurse and Bill was assigned the nurse that would have been his nurse for the day. Sara explained what would happen and then said that everything was up to me, they could stay in the room or it could be just the two of us. He was given three different medicines so that he would feel no pain or discomfort and the other meds were all stopped. The vent was shut off and he was put on trach collar. Sara silenced most of the alarms on the monitor and I told her I wanted to be alone with him.

As I watched him breathe, and watched his sats drop, along with his blood pressure, I started singing the chorus to his go-to song when he was song leader at church. When he couldn't find any other hymn that spoke to him for that day, he always picked "Turn Your Eyes Upon Jesus". For those of you who aren't familiar with the chorus it says:

Turn your eyes upon Jesus,
Look full in His wonderful face,
And the things of earth will grow strangely dim
In the light of His glory and grace.

I sang it over and over, sometimes through tear, and other times just softly. He frowned once and I smoothed his brow and told him there was no frowning in Heaven. And, as I finished the chorus one last time, he took his final breath. I whispered that to be absent from the body was to be present with the Lord and kissed his cheek.

It was such a peaceful passing and took just about an hour. Sara and Molly came in and then told me to take all the time I needed they would notify the doctor. I didn't know if he would have to come in and actually assess him to make sure he was gone, but they had been watching the monitors and saw everything flatten out, so they were able to just print out the death certificate, or some paperwork, and sign that.

I gave Molly the information for the funeral home and was still able to spend as much time with him as I wanted. I didn't know it at the time, but they had put a sign on the door not to enter without checking with the nurses so I wouldn't be bothered. Dr. Threlkeld did come in to give me a hug and tell me what a good person Bill was, and then what a faithful wife I was. Other nurses started popping their heads in, or came in for a quick hug. Social distancing was thrown out the window for the time being.

Molly came back in and said they were going to get him all cleaned up and all the lines removed and wanted to know if I wanted to stay with him in the room until the funeral home came or if I wanted them to take him to the morgue until they arrived. I knew that it could be several hours before they got there, and I also knew the room needed to be cleaned. So, I said I knew they would take care of him and that the morgue would be fine. And, I grabbed everything I had there, and walked out one last time, getting still more hugs along the way.

Even though I've had 6 months, 181 days to be exact, to get used to living alone, it feels different now. I guess it's knowing that he's not at the hospital and I can't go see him. But, I also feel free. And I don't mean that in a bad way. There's just a sense of release, for me and for Bill. Yes, I have cried periodically today. I called my best friend on the way home and she immediately started crying, which made me start to cry and I told her to stop I was driving. In typical fashion she told me to pull over!

We did the business of death this afternoon, signing the paperwork authorizing the cremation. Emily was with me for that and the representative made it very easy. She came to the house and went over everything. The one thing I hadn't considered is that he died in Tennessee so it's going to take longer before she can actually do the cremation. Everything in Tennessee has to go through the crime lab first. Not an autopsy, just the paperwork, before they will issue the death certificate. And without the death certificate she can't do anything.

For anyone local, we are not having any kind of service at this time. With so many family members living out of town and it not being safe to travel, we will do that at a later date. I will somehow left everyone know.

I've had to wait to post this until the last 2 family members were told and that wasn't until this afternoon. 

There, of course, won't be daily posts anymore. And I'm not quite sure what I'm going to do with this now. But, that's something for another day.

Bill was well-loved by everyone who knew him. He never met a stranger and could get along with anyone. His smile could light up a room. Here's my favorite picture of him.

His was a life well-lived!

In typical Bill fashion he rallied after the chaotic night and morning. He has developed a new problem, as if he needed any more. He has GI bleed somewhere in his belly. That's what he had been vomiting. An hour after the GI doctor said it was actually old blood and to restart feeds, he got nauseous. So he got a dose of zofran and his food has been cut in half to see if that helps. 

Even though he has stabilized thes DNR is still in place. He crashed within 4 hours last night. I left at 5 and they called at 9. And it's still only a matter of time. Think he even knows that he's getting weaker. 

He hasn't needed any pain meds except tylenol, but stronger ones are available when needed. 

Since most of the info was given in an earlier Facebook post I'm not going to go over everything again. For those of you who follow this but not friends on Facebook, friend me.

I'm exhausted, not only from very little sleep last night but the emotional aspect. Doctors and nurses alike forgot social distancing to give me a hug. The palliative care nurse sat beside me, with her arm around me for 30 minutes just talking and letting me cry. 

Emily and Bryan brought more meds to me. An exception has been made to allow more visitors now. They sat with him while I went to ER to move my car and I got a little fresh air. 

As I've been writing this his blood pressure is a little lower than it's been all day. Maybe it will go back up some. They could turn the Levo up but that's not in the order. As I said it's still only a matter of time. 

All for tonight. I'm going to try to get some sleep. 

It was another not so good day. Bill was still sleeping when I got there, but woke up when I touched his shoulder. He had a student nurse, of course under the supervision of a senior nurse, and it always kind of scares me. I know she did his Prograf wrong, put it through his tube instead of under his tongue. But, that's a common mistake and this far out it probably doesn't make a lot of difference.

Dr. Threlkeld came in and said that a bacteria did show up in the blood cultures and he had them repeated overnight to double check and make sure it wasn't cross comtamination from when it was drawn. He did say it was not the usual E.coli or pseudomonas but something different. If it showed up in the second culture his central line would have to be pulled. We all know that there are very few sites left for IVs with him, but with sepsis beginning, I can't speculate on what they will come up with. But it won't be able to stay in his neck. I guess I'll find out this morning.

His urine output also dropped off again and in an 8 hour period, only put out 200 cc. Dr. Morris asked the nurse (the senior one) if he had gotten his Lasix and she said he had gotten 1 dose because that's all it showed in the computer. So, he was going to write the order for a huge amount of Lasix. He also wanted to know if ID (infectious disease) was aware of the culture results, and coupled with the low urine output and rising white count, he was almost sure the line would have to be pulled.

His hematocrit was at 24, so Dr. Edwards ordered a unit of blood. It didn't perk him up as fast as it usually does. He did sit in his chair for 3 hours, though but was ready to get back into bed when it was time.

As they moved him back to bed his oxygen dropped to 69 and it was discovered that part of the tubing from the vent had come loose and he wasn't getting enough pressure to keep his airway open. Once that was fixed and his oxygen came back up, he went straight to sleep. But, to me, it didn't look like sleep, because he didn't react to anything they were doing. But, Stacy the senior nurse assured me it was just sleep.

His feeding tube started leaking again and so much bile was backing up into the tube it was hard to get it flushed. It took quite a bit of time and pressure to get it back under control. It looked to me like it was a mixture of bile, maybe some formula, and blood. The bloody aspect would be new it in fact it was blood. It was just hard to tell. Stacy finally got it to slow enough that she could get it packed again. And, it had looked good when the dressing was changed.

He didn't want to really wake up when it was time for me to leave but he did open his eyes and nod. I did not get any calls in the night that he was not responding, or to verbally sign paperwork for another line, so I'm taking that as a good sign.

I talked to Dr. Mullinax as I was leaving the hospital and he said that Bill was one of the strongest patients he has ever seen, and that I'm the strongest woman he knows, as I stood there with tears running down my face! But, you know the rest he's my husband that's my job.

I finally got the email with the paperwork about the dumpster that has to be signed and emailed back. And of course, my printer is saying that the scan function is not connected to any computer. And my computer keeps saying to pick a printer but when I pick it, it won't work. So, it may be petty, but it can wait until I get home tonight and can play with it more.

The cats are still at the vet. They are some better, but he wants to continue the injectable meds for at least 1 more day. I'll call again this morning to check on them.

And now, you know the drill, time for me to grab some clothes and head out. I chatted online with a very dear person who has gone through some of what we are going through and I asked him a question that had been bothering me for awhile about feelings. He assured me that it was normal, which made me feel so much better. In fact, I only woke up once to use the bathroom about midnight and then slept deeply until the alarm went off. Hopefully it will be a decent day, at least for us, and a good day for everyone else!

Yesterday was not a good day, the first in more than a week. Molly said that he had a good night until about 6 in the morning and then his oxygen level started dropping and become somewhat unresponsive. He also vomited again. Dr. Edwards ordered an ABG which tells if he was retaining CO2 again, and as I walked in, Molly was rushing out with vials of blood cultures. She and Andrea both told me he did not react at all to the blood sticks, no pulling away, no stiffening of his arm, no grimace. He did open his eyes when I touched his shoulder and said hi but closed them almost immediately.

Dr. Threlkeld had already ordered 2 different antibiotics and the first one was hanging, just waiting for an IV pump. He is the one who ordered the blood cultures and those take a little bit of time, even if they are done STAT.

He was doing what they call guppy breathing where he just kind of gasps shallowly for air and I asked Andrea if she thought he would do better in full vent volume control mode. She agreed, but she couldn't make the decision, it has to come from the doctor, which it did soon after. He fought it for a bit before he settled with it, but he was still really struggling to breathe.

He did finally respond to Dr. Threlkeld some, and said he felt OK and was good. We both called him a liar! When he would open his eyes, it would take him a bit to focus on whoever was talking, usually me. His heart rate was up, his oxygen sats were good, but on 100% oxygen, they should have been, but his blood pressure was on the lower side and it wasn't long before it started dropping. At one point in was 88/55, so Molly got a bag of Levofed ready and let Dr. Edwards know. It was then started, after getting another IV pump, at a pretty low rate. His pressure went up and the Levo was slowed again, and his pressure went down, so it was increased again. That's a tricky thing, to get the  right rate going.

A chest x-ray was done and Dr. Spooner said that it looked worse than the previous one. I told him that he had vomited and probably aspirated some and he said he did not know that. I don't know if it didn't get charted, or he just overlooked it. Anyway, Dr. Edwards personally told the pulmonologist on for this week, Dr. McCarthy, that he wanted him bronched and that was finally done about noon. Even with a little Fentynal, Bill did not go completely out and, as I came back from the cafeteria, I watched the end of the bronch from the hallway since his door was open, he was fighting the tube being down his throat. They got a lot of gunk out that looked really nasty and sent it off to be cultured. Dr. McCarthy and Dr. Spooner both said without knowing what was in there it was hard to say what was causing the secretions. I told them he had colonized pseudomonas and Dr. McCarthy just said that's some nasty stuff and with it being colonized it will keep flaring up, as if I didn't know this already. But, I didn't say anything. He did say that Bill just doesn't have much reserve left, which I also already knew. So, we'll see what the cultures show.

In the afternoon, he finally really rested and his breathing slowed. HIs numbers were fairly stable and I could tell he was sleeping, but that would only last a few minutes and then his eyes would fly open. He finally watched some TV and seemed to be coming back to "his" normal.

His urine output dropped off again after normalizing in the night. From 6 am until noon he had only put out 50cc of urine, which isn't much at all. His creatinine was 1.29 which is in the normal range, so Dr. Morris changed his Lasix from twice a day to 3 times a day IV instead of pill form. He also ordered a big bottle of Albumin to run to give him some volume. But, there was no blood, it was nice and clear. That much Lasix will deplete his potassium, so he'll probably get a bag of that in a day or two.

He woke up when I told him I was leaving and he was very lucid. I told him not to scare us like that again and he said OK. He told me he loved me and then went back to sleep. Since I didn't get any phone calls, I'm taking it as a sign that he had a good night, with no problems.

All of this proves my point that he doesn't need to be moved! If he had been in a nursing home, he would have been dead, probably before I got there. They would have had to move him to a hospital to have any of these measures done. Nothing was said about it yesterday, other than Mark, a nurse case manager, telling me that Tomika was off yesterday but would be back today. 

I looked at the advance directive Bill signed and I get to make all of the decisions on where he is placed and what is best for his care. So, that eased my mind some. I thought this morning that we always get a notice that if we think he's being discharge too soon we can appeal it to Medicare. But since he doesn't have any Medicare days left so they aren't paying, that's out. But, I also think we get one from Tri-care too, which is paying. So, I'm going to look at that today. It's in his folder that I keep in my backpack. I have several copies of it so will make sure I've got one with me.

That's it, I think. I took 5 pages of notes, which really isn't much because my new pocket notebook is smaller than the old one. Same brand, just a different size. I don't like it, but what can you do? Anyway, if I find I've left anything out, I'll add it to the next update.

Hopefully I'll get through to the vet today to see if the cats can come home. There was a lot of rain again yesterday and it messed up the phone lines. I still don't have the paperwork from the dumpster people so that's still on hold. And now, if I don't get a move on...well, you know the rest.

Something new was added for the staff yesterday that is somewhat concerning for me...face shields. Not just for those who are actively at risk with bodily fluids, everyone. Well, the doctors didn't, but the nurse practitioners did. I asked Molly if it was something I should be concerned about and she said nothing had been said other than the staff was to wear them. This coupled with the fact that they are now testing all employees makes me wonder. But, I didn't even have to stop at the desk and be approved to come up to the unit. Felicia just waved me on through.

Bill has started running a low grade fever and Dr. Threlkeld is getting concerned, not starting antibiotics yet, but really watching. He said Bill's face is a good barometer on how he is feeling and he can tell he's not feeling all that great again.

He told me it was hard to breathe when I got there, but his numbers were ok, a little low, but OK. Eric came in and gave a breathing treatment and suctioned and that helped. For most of the day his sats stayed up and there were no alarms. He did have an episode of V-tach, but to look at him you wouldn't know anything was going on. But, the alarm was going off on the monitor for a good little bit.

He's developed a lump on the inside of his right elbow and it's quite swollen around and above it. The night nurse took a picture of it and sent it to Dr. Edwards and asked if she needed to move his blood pressure cuff. They have again put it on his upper arm instead of his lower arm. He said to leave it, he wasn't concerned about a DVT in that arm again. Bill said the lump hurt to touch it.

His left arm is so bruised and black that it looks like a tattoo sleeve. It starts just at his wrist bone and goes all the way up his arm. But his hand is perfectly normal looking. His right arm is not as bad now, but it was on that hand too. Dr. Edwards said it's just from the blood thinners and any extra sticks they have to do. It is only the skin and not down into the flesh.

He's somewhat constipated from all of the formula switching. He was complaining about his belly hurting and I think that's why. He was going to get a stool softener with his 4 pm meds so hopefully that helped.

His urine output has dropped off all of a sudden. Molly and I were wondering if there wasn't another clot trying to form that was blocking it again so she did a bladder scan and everywhere she pressed, she got no urine present. She she texted Drs. Morris and Edwards. One of them sent back that he didn't want to do anything at the moment because his creatnine was below 1 which is low, so it's just something else to keep an eye on. At least it was nice pale urine again, no blood.

He sat in his chair for 2 hours and then insisted he get back into bed. I think it's because they had him a little cock-eyed and he was just uncomfortable. Once he was back in bed he watched TV and waved at people to come in. He's moving his arms really well again, but he's not moving his legs much. Of course they keep those inflatable boots and circulation things on so it might be harder for him to move those. He did have his legs bent in the bed instead of straight out.

The swelling he's been having in his legs is coming and going. His right foot was still swollen, but his legs weren't as swollen and the swelling had all disappeared from his groin area.

I got another little surprise yesterday. Dr. Edwards nurse said it shows it his chart that they've found 2 VA nursing homes in Arkansas that are willing to take him...one in Little Rock (3 hours away) and one in Fayetteville (about 5 hours away in the northwest corner of the state). She told them those wouldn't work. I told her what Dr. Edwards said Saturday and that was the first she had heard of it, so he evidently didn't put it in his notes. I was going to come home and start the process again for Medicaid, but decided not to. Maybe just a little bit of rebellion on my part. I did get a text from a friend that she has found a home health company that she's using for her husband that works with trach and vent patients. I may call her to get the info. She said it's self pay so we'll have to see how that goes as far as cost. It would still be a huge undertaking with hospital beds and all the other equipment. So, something to think about today.

I did come home a little earlier and treated the carpets with flea powder. I also washed all of the throws the cats usually lay on and then a load of jeans for me, that are still in the dryer and need to be turned on before I get dressed to go. It actually felt good to do some normal stuff. I wasn't hungry as I had eaten a huge rice bowl with steak and peppers and green beans and mushrooms for lunch. So, I fed the outside cats and got to work. I didn't even eat anything until after 7 and it was only peanut butter toast. But, that was enough. I had called to check on the cats and they are better, but not on the "Go Home" list yet, so I'm calling back today.

I finally got a callback from the dumpster people. She's supposed to be emailing me the paperwork, but still nothing this morning. That little area will completely fall in before they get the thing here! Especially since it rained in the night and is supposed to rain today.

I talked with a good friend last night, and she made me feel a lot better. We prayed together over the phone and laughed and cried. It was a totally unexpected phone call, and it was just what I needed. So, without saying any names, thanks again my friend, I love you!

That's all I've got for today. I think I got the highlights in anyway. Let's see what today brings!

I'm exhausted! I didn't sleep well last night, had another night of acid reflux even with my medicine. I tried propping myself up, and while that helped with the reflux, it killed my hip. I always thought it was just sleeping in the recliner at the hospital that did it when I stayed over, but now I think it was the 30 degree angle. Anyway, it was the early morning hours (didn't look at the clock so don't know just when) before I finally went to sleep.

It was another good day yesterday. Bill stayed in his chair, against his will for part of it, for almost 5 hours. He was only supposed to stay 3, but they brought a patient up from ER who was crashing and every nurse in the unit was needed. I explained that to him, but he wasn't too happy about it. And every time someone even walked by his door, he was waving for them to come in! When Tyler could finally come to give his meds and get him back to bed, there was no help for her, so nurse/dr. Beth pitched in. I remade his bed and then got the lift in position. After he was back in the bed, I tossed used linen from the chair and rearrainged the room again. The nurses all know I don't mind helping with things I know I can do.

Dr. Threlkeld wasn't too concerned about the fever he spiked yesterday. He's still watching him closely before starting any new antibiotics. He said that over all he looks good and just his appearance is a pretty good indicator with him on how he's feeling.

Dr. Schriner played with the vent settings again and it took Bill a little while to get adjusted to them. His numbers didn't stay as stable as they had on the other settings, but they did finally even out.

Dr. Edwards was pleased that he was in the chair, even though it was a really long time for him. He said the longer he can stay up the better it is for his lungs. I know that, it's just convincing Bill of it! He told me they'll just continue to watch him.

That was really it for the day, nice and quiet. I finished another baby hat and before I could start on the booties, I was commissioned to make 3 more of the bands I've made for the nurses to hold the elastic of the masks. It takes longer to sew the buttons on than it does to crochet them, at least for me who hates to sew anything. So, I'll do the booties today. There's one more pregnant nurse and if I understood what was said, she's expecting twin boys. So, just to be sure, I'm taking some blue based yarn with me today. Like I've told others, what else do I have to do?

I did sign up for a webinar on qualifying for Medicaid and other estate planning. It popped up in my newsfeed on Facebook. It's mostly for attorneys and estate and insurance planners, but it let me sign up as an other. It's not until the 21st so we'll see what happens between now and then.

Emily and Bryan brought me a little storage basket of goodies for Mother's Day, all my favorite treats to take to the hospital. I haven't had any snacks for awhile except for some peppermints since they closed the gift shop. There are vending machines, but I don't want to use my debit card for it and I don't carry a lot of change with me. So, these were very welcome.

That's it for this episode in our adventure. Hope everyone has a good day!

I got to the hospital about 10 yesterday morning, which wasn't bad since I took the cats first. And he did keep them. Cat was running a 102 fever and Mouse didn't flinch when he reached into his carrier to listen to him. So, they are also in the hospital! 

Bill was awake but had had a bowel movement so was uncomfortable. Tyler, his nurse, was just waiting for Eunice the PCA to come in to get him cleaned up. His numbers were only OK and when Eunice took his temperature, it was 100. I thought he had felt warm and he just looked like he didn't feel good.

I missed Dr. Threlkeld, or whoever was covering for him. I think it was Dr. Nowak because she called for Tyler while she was in the room. Hopefully they will come up with an antibiotic for him. The stuff in the collection jar looks really nasty and they were having to do a lot of suctioning again.

I also missed Dr. Morris, or Dr. Baymeadow who covers for him. His urine had started to clear after I left on Friday afternoon according to Tyler and it was still clear. It was pretty concentrated, but not pink. 

Dr. Schriner was the pulmonologist on call and after a week of pulmonology just looking at the vent settings and nodding or saying we'll just stay the course, he wanted him challenged a little. He put the vent on SIMV with pressure support. This setting would give him 12 breaths a minute and any other breaths he took, he would have taken on his own. The pressure support was like CPAP, keeping his airway open. At first Bill said it hurt his throat and that was from the increased pressure. He did have a hard time at first and started to go into panic mode. But Tyler and Kerry, the respiratory tech, decided to bump his oxygen up to 50% and that helped. Kerry said the doctor told him to leave him this way unless he became lethargic from retaining CO2 or got into distress. After the O2 change, he settled in and his numbers went into the mid 90s and his heart rate came down. We watched TV, Live PD this time, and he took a nap and we had a quiet afternoon.

Dr. Edwards came in and listened and I told him about the change in the vent. He looked at Bill's sats and they were at 96 so he turned the O2 back down to 40%. Then he asked if he could talk to me in the hallway. My thought was he was going to tell me about needing to move him from ICU. But, I was wrong! He said that he and pulmonary were on the same page that Bill is not a candidate to go home on a vent, and I agreed. He also said that if he was sent to Restorative Care, he didn't think he would do well there either. I told him there was talk of transfer and I was having trouble getting the Medicaid approval. He told me not to worry about that, he would continue treating him in ICU! His concern was if Bill would want to continue in the condition he's in. I told him that I ask him frequently if he wants to keep going, or if he wants to stop (and I asked him after talking to Dr. Edwards) he the answer so far has always been yes, he wants to continue. Dr. Edwards was OK with that. I told him I've known for a long time that he wasn't coming home, which I think reassured him somewhat that we were waiting for a magic bullet and tomorrow he would walk out of the hospital whole again. So, now it's kind of back to which doctor was pushing for transfer. I think it was probably the lung guys and Edwards can override that. Hearing that he would continue to treat Bill where he is and not to worry about the Medicaid, was like having a huge weight lifted! I didn't wake up in the night thinking about what I needed to do and who to call and where to go. I also thought, and wrote in my notes, I've been praying for guidance on this and yes, it was totally different than what I thought it would be, but God gave me an answer! Just shows never underestimate what God can, and will do, even with the "little" things!

I did also ask him about the cellcept and he's not going to restart it. He said that he's far enough out from transplant now that rejection is not really an issue anymore. He's still getting the Prograf to keep his immune system suppressed some, but he said with all of Bill's different infections, he's got to have some kind of immune system to help fight them. He also talked like this is not uncommon, and perhaps if we had been able to go to his last 2 May appointments, this would have been the case with them too. It makes sense, I just needed it explained. And, if he starts to reject the heart, it's just another condition to deal with along with the rest of them.

In the time I was in the hall talking to Dr. Edwards, Bill's sats dropped to 88/89 from the 95/96 they had been. Tyler came in for his 4 pm meds and I told her what Dr. Edwards had done and she said that Bill had been doing really good for 2 hours, so we compromised and put his oxygen at 45%. His numbers went back up almost immediately!

That's about it. It felt really strange coming home. Even though I'm the only human here, the cats were always here to greet me, with Cat telling me that I was gone too long and it was time for dinner, and that Mouse had been a bad kitty. But, yesterday it was just silence. And it was like that all evening, no cat on my lap or at the backdoor smoozing with the others, or jumping on the bed in the night or walking through the house talking. And the same this morning, sleeping until the alarm went off, not a hungry kitty walking up and down my body. I really miss the little critters!

So, that's it. I think I got everything covered. I have to start a new notebook today for my daily notes. So far this hospitalization has used 1 1/2 small notebooks. I also need to take another pen with me as the ink is getting pretty faint from the one I'm using. Someday I'll type all of the notes up so have a better record, in addition to this blog.

I hope all of you mothers out there have a Happy Mother's Day today, and that includes all of the dads that also fill that role, and grandparents who do the same. I'm sure I'll talk to my mom at some point today.

Here it is 5:49 and I'm just now getting this started. Normally I would be close to, if not actually, walking out the door. But, I'm taking the cats back to the vet today so I get a somewhat leisurely morning. I've also had some computer issues for some crazy reason this morning so the post would have not happened early anyway.

Yesterday was not as good a day for Bill as the day before. He was still very aware of what was going on and communicating, but he was very junky and congested and this time he was having a hard time coughing the stuff up and out. Even with frequent suctioning, his oxygen levels were staying in the mid-80s. His lower limit is 88 and he was hanging out at 84-86. He wasn't really in any distress, and they didn't turn his oxygen up, but he hasn't been this junky in a long time. I did look to see how long it had been since his last bronch and it was March 16 I do believe. So, it's been a good little bit of time.

Dr. Threlkeld has stopped the antibiotics. He said that the bacteria that grew was resistant to the Merreperrem that he was on. So, he's stopped it and is just going to watch. He said his white count is still coming up, but it had gotten really low again so I don't think it's actually in a danger zone yet. He did say that if he really started to get bad, or spike a fever, he would start him on a different antibiotic, but right now we're in a holding pattern while they test other antibiotics to see what will work against it. He is still getting his Bactrim and an inhaled antibiotic so maybe those will keep it somewhat at bay.

His formula has been changed again, back to Nepro from Glucerna. Glucerna keeps his sugar in check better, but it raises his potassium too high. The Nepro isn't formulated for diabetics so they have to keep a closer eye on his sugar, but it's good for potassium levels. I guess they think it's easier to just hang a bag of potassium if it's too low than to give him the medicine that makes him poop to lower the potassium.

His urine has gotten much pinker again. Yesterday it looked like strawberry soda. I looked at the drainage tube as it came out of his body and it was really dark at one point, but I could also see clear urine ahead of it. So, there is a bleed or clot again somewhere. I missed Dr. Morris. He must have come while I went to get some lunch. I had a thought yesterday that he had been Elequis since October for the blood clot in his arm. I didn't follow him to the bathroom to inspect his urine, and for quite a bit of time in the hospital there were no problems with the color. Then it darkened and turned purple and then cleared and then the bright red from the clot and your remember the rest about that. Anyway, he was taken off the Elequis when the clot finally was gone and his urine cleared slowly. He was put on heparin when they discovered the new clots and the urine stayed clear after the first few days and he's now been taken off the heparin and put back on Elequis and there is the blood again. I don't know if there is any correlation or not, just something that worked it's way to the front of my thought process.

Bill sat in the chair for 3 hours and was very straight and erect...until physical therapy came. He grudgingly did some exercises and then she slightly reclined the chair and put a pillow behind him...and he couldn't hold his head up. After he got back into bed we watched the goose that came to visit (he was looking into the window and quacking at us). 

I did discover on Thursday that he has been taken off his Cellcept, which is one of his anti-rejection meds. The nurses usually just say they are giving the normal meds and nothing has changed, but the one Thursday, who was a new hire and still under supervision, called out all his meds and I didn't hear Cellcept, so I asked. She checked with Whitney the assigned nurse who checked and it was stopped when his white count dropped so low. Since it's one that suppresses the immune system, that makes sense. So, since I know his white count is coming up, and had come up, I've asked if they are going to restart it. So far I haven't gotten an answer. Cindy said she would mention it to Dr. Edwards. So, I'll have to find out when I get there.

I didn't get anywhere with my research yesterday, or phone calls. So, maybe this week-end I can get the research done. The internet at the hospital always works better on the week-end anyway. I just won't be able to make any phone calls most likely.

I also didn't get anywhere again with getting a dumpster. They are not answering their phone, nor do they have an answering machine/voicemail. If they are not in the office, they should be doing what most businesses in that situation are doing and forwarding calls to an employees cellphone. I may have to delegate this chore to Bryan. He's already bought new tires for the Thunderbird. The flat that he had was from dry rot and instead of just getting the one tire, since they were all bought at the same time, they are all going to start doing it. They had 1 tire in stock so he could replace the flat one, or they gave him one to use, but they had to order them. Once it's back in running condition I may drive it to Memphis. I told Em I have a long chiffon scarf that I can wrap around my head like in the old movies to keep my hair from flying everywhere! It would be just my luck that the end of it would blow across my eyes so I couldn't see!

I think that catches everything up. I hope Bill remembers that I'm taking the cats this morning. I'm going to do what I did the last time and be there when they open at 8. I'm actually hoping that he wants to keep them for a few days. They are both off their food, and I do think Cat is running a fever. Mouse just lays on the back of the couch, he doesn't even really want to go talk to the outside kitties. So, I think they need a few days there for some good meds. And, the vet only charges for the treatment when he keeps them. There are no boarding charges or food charges, only the meds.

My body is telling me that I've put too much coffee in this morning and need to do something about it. I hope everyone has a great day. It's nice and cold here this morning, only in the 40s. I've gone from heat to air to heat again. Maybe it will warm up and stay warm now. 

Bill was awake again and alert when I got there. I told him what we found out about the little storage area and he understood. I also told him Bryan took the Thunderbird home and before I could tell him it was  to clean it up, he said "Damn". I also bit the bullet and explained to him about the discharge and having to talk to a lawyer about a trust to get him on Medicaid, and he said he understood about that, too. He also knew, when Bryan called about where we bought the tires for the car, and told me where. It was as good a day mentally as he has had in a very long time.

The bacteria that is growing in his lungs is not the pseudomonas that has been present before. It is something new. It may be in the same family of bacteria, but Dr. Threlkeld is researching antibiotics to see what it responds to and if that needs to be changed. He hadn't made a decision before I left, so he was on the same one he had had before.

The lung doctor wanted to try CPAP again for an hour, and again he didn't last very long. He said his chest hurt. Of course his chest hurts. He hasn't used his lungs on his own for a very long time now. So, maybe we'll try again tomorrow. And I think I'm going to suggest it be done later in the afternoon instead of first thing in the morning. There is so much going on then with meds and doctors and breathing treatments. He's always a little more on alert in the mornings, but more relaxed in the afternoons.

We noticed that his urine had pinked up a little. It wasn't actually pink or red, but just a little "peach". When the nurse told Dr. Morris, he said we are going to will it away! He's put him on pill form of Lasix twice a day instead of the IV Lasix. Of course it will get pushed through his tube.

He sat in his chair again for 2 hours, and Stacy told me had stayed in it almost 3 hours the day before when I left early! We just sat and watched TV and wiped his nose. It has started with the same nasal drip he has at home, even with using his allergy meds. We finally got some more tissues in the room and I put the open box on the bed so that he could do it himself. He was using his arms really well, raising them and touching his nose and his ear when they asked him and spontaneously pushing his glasses up. But, he was really only using his right hand and not the left. It is still really swollen. His legs weren't as bad, but they are also still swollen. And I noticed that the skin on the back of his right hand is all peeling. I don't yet know what is causing that.

I was a bad girl yesterday, and may be bad again today. I gave Bill a little taste of frosting from my cake yesterday. That's the first time I've broken the rules as far as food and drink go. It wasn't even as much as you would give a baby on your finger, but it was enough for him to lick off and taste. Maybe today I'll pick up a piece of chocolate cake and let him try that icing. I'm not going to give him any real food, but a little lick of icing shouldn't hurt.

I thought I was going to have some good news about the Medicaid situation, but we're back to square one. I did talk to an attorney who specializes in Elder Care, but all he was mainly concerned about was finding a place for him, not in trying to protect our assets as much as possible, just finding a place. He said the continuing care hospital in Jonesboro wasn't going to be an option but he didn't elaborate on why. He didn't even know the place was there! He did say that since Bill has been in the hospital for nearly 6 months now he qualifies as a Tennessee resident and we need to go through Tennessee Medicaid instead of Arkansas. He said the closest place in Arkansas for vent patients is in Little Rock which is 3 hours away. So, today I'm talking to the Social Worker in the Restorative Care Unit for some advice and then doing some more research. This lawyer did give me the name of a lawyer in Memphis that he recommends for this, but I think I'm going to look more than just take his word for it. He did say there was a place in Collierville, TN, which is a suburb of Memphis so it would still be about the same drive as I'm doing now. I was discouraged enough that I just about said forget it, I'll just bring him home and hire a live-in nurse! So, the laptop goes to the hospital today, hopefully it will work, and I'll be able to get somewhere in this process.

I also tried to get a dumpster delivered to the house so that Ryan and Kayden can start tearing out that room, but couldn't get anyone to answer the phone, and there was no way to leave a message. If they don't answer again today, I'll see if there's another company in town who does them. 

So, I think that's everything. I did take a lot of notes yesterday about Bill, and I haven't looked at them, but I think this is everything. Oh, I did forget! Yesterday was 2 months since we called the family in to say good-bye! As Dr. Wright said, he's the man with 9 lives!

I can hear it raining again and it sounds like it's coming down pretty good. I can tell a front is coming, or has come through. My sinuses are really going crazy this morning! I'll keep you posted if I find out anything today!

Bill was awake and watching the news when I got there. I reminded him that I was only going to be there until noon, and he was fine with it still. He had one of the best nurses yesterday also, so I knew he would be just fine.

He got a good bath about 10 and then into his chair about 11 and the goal was again 2 hours, but I told Stacy that if he said he was good in the chair to leave him longer. His stomach looks so much better and it has finally started to heal and close around the site. It's still tender to him but I don't know if it is tender because the skin is still so irritated, or if it's tender on the inside. But, he flinches every time it is touched.

He's still pretty edemous (swollen). But, it moves around, which is the real mystery. His privates are swollen and still his upper legs, but now his right foot, even with the vibration things on his calves, and his left arm. The arm looked awfully red and angry to me yesterday morning, but it wasn't warm to the touch.

His temp has been low 98s which is still a low-grade fever for him, although I do have to keep reminding them of that. Dr. Threlkeld is the one who ordered the blood cultures, and of course there had been no results yets. But, he said he wanted to keep a close check because of his central line, and the fact that his white count went up, even on antibiotics.

He's the only doctor I saw yesterday. The lung dr. looked toward the door after going into the room next door and the other doctors usually come by in the afternoons. I know Cindy was there when I was leaving and I think Dr. Morris, but I'm not sure about him.

I talked to the social worker about transferring him again. She talked to the VA and the closest facility for vent patients that the VA contracts with is in Nashville. So I told her that was definitely not an option. I told her I'm working on the Medicaid angle, getting all the financial information together. I'm calling an elder care attorney today. I think I've got it compiled, or at least most of what will be needed. I did read on the Medicaid website that VA compensation is not considered as income when applying for Medicaid which is the bulk of Bill's income, so that was some good news. Emily said she would go with me if I want her to but I'm hoping we can do most of it over the phone.

The news on the storage room is not as good, but what I wanted to do is what has to be done. We found that there was nothing separating the siding on the house from the drywall in the room, so the area that was leaking was also running down the wall and there is a hole in it, big enough to see daylight through! Ryan and Bryan were going to at least cover the roof with a tarp last night, but then discovered that 2 of the rafters are broken and Ryan just about went through trying to get the tarp on. So, fortunately Emily and Bryan ran into some friends from church while getting the tarp and he's a contractor, so he came by and looked at it. He said it will be an easy fix, take off the siding, tear out the drywall and then take a saw and cut the ceiling and roof off. The 2 walls that will be exposes (and I don't know what's behind the drywall, can then be sided. Bryan is going to move the light switch and light and voila...a nice little access. They had discussed getting a concrete saw and cutting the storm cellar apart to try to get it out of the ground, but this will be much easier. We also found that the cellar was not sealed to the house! I was totally exhausted by the time everyone left. Misite and Joe also came by to get some paperwork notarized. I was thinking that Joe and Barb would be thinking that something happened to Bill since I was home early and all the kids were arriving! I know Joe reads this so he'll know what's going on. Ryan's coming back today to trim the hedges, finish cleaning out the gutters and then when I get home, back to cleaning out the room again. I also have to call today to get a small dumpster delivered. Emily told me not to worry about this anymore, they will take care of it. I do have some pretty good kids!

I think that covers the day. As I said, I was totally exhausted and could have gone to bed before dark, but managed to make it until about 8:30. Allergies are kicking my behind this morning and I really don't want to get dressed and get going, but I must. The cats don't know what to do with things rearranged in the dining room and all of the people running in and out yesterday.

Hopefully Bill had a good day after I left. I still haven't filled him in on what's going to happen witth the Medicaid stuff. He may just tell me to do what's best and then again, he may tell me to do nothing and just let him go. It remains to be seen.

I said the other day that the post would be short because nothing much happened, and then it seemed like I just kept going and going and going. Well, this one is going to be short.

Again, Bill was awake and aware when I got there. I noticed the heparin drip was gone and Molly said they had switched him back to Eliquis. 

After his morning meds and rounds, running a little behind, he got to the chair and sat his required 2 hours. He said his back hurt by that time so he was moved back to bed and given some Tylenol and to sleep he went.

Dr. Threlkeld said that the antibiotics seem to be working again, but they don't know what was brewing yet. One of the drs. did order some blood cultures, but I don't know which one, and there weren't any results when I left. Dr. Morris is continuing the lasix for the swelling. I could finally see his kneecap on his left leg, but his right foot was swollen, and both ankles were swollen by the time he sat with them down for 2 hours.

And that was pretty much the day. I told him I was leaving at noon today. If you remember, I told you about the ceiling falling down in the little room leading to the storm cellar. Ryan is coming over this afternoon, he finally got his truck fixed, and we are going to clean the room out and then he's going to try to at least cover the hole until I can get someone to come who can actually fix it properly. But, I listened to it rain in during our downpour the other night. When I told him why I was leaving, he said it was fine and that I had to take care of the house. Plus, I'm going to get dinner out of it. Ryan cooked a Boston butt yesterday so he's bringing me pulled pork and potato salad!

So, there you have it, short and sweet. Maybe he'll have a jam packed morning so I'll have something to tell you tomorrow!

Bill was partially awake when I got there yesterday morning. Harding, his night nurse, said he had a good night and slept most of it, but he must have needed to recover more from getting up the day before. We don't think anything about getting out of bed, but, if you think about it, when we're sick, the first time we get up, we're usually pretty weak and get tired easily too.

But, he was medicated and in the chair before 9 am, even after having to be cleaned up from a bowel movement just as they were moving him. He didn't look comfortable at all, he was kind of cockeyed, so after rounds Mikaila got him a little better situated. He managed to stay the 2 hours, but he didn't even want the TV on.

Dr. Threlkeld said they didn't know what was growing yet, but he thought only a week on the antibiotics would work since he looked better. Dr. Muir said that his hematocrit was slowly inching down and he would need blood either today or tomorrow probably. But, there hasn't been in blood in his urine since Thursday I think, so it's now a mystery as to where it's going.

Those were the only doctors I saw. I came home super early to take care of some business. Since the wifi at the hospital is so bad, I can't do anything on the computer except play some games. And I needed to pay bills and look up some paperwork. So, I told Bill I was coming home early and he was OK with it. I told him Mikaila would take good care of him and that if something happened and I needed to come back she would call me.

There hasn't been any more talk of discharge, or at least to me. I haven't heard back from the social worker or anyone else on it. What little research I've been able to do leads me to needing to consult an attorney on how to move some assets, without penalty, so that Bill will qualify for Medicaid. And from what I've read in a book I bought several years ago on elder care, the application for the extra money from the VA can take several months. So, nice of the hospital to spring this on us now, when it's almost too late. But, I'm not going to worry about it...too much. 

I did manage to get the bills paid, but didn't get the research done. I'll blame my sister for that. She called just as I got home, thinking I was still at the hospital, and of course we talked until I would have gotten home, so I lost all of my extra time. But, that's OK, I could have told her I couldn't talk long! I'm going to have to start taking some time away from the hospital. I've let things slide so much here at the house and this is the time of year that car tag renewals come up and different business things that others can't do it for me. 

Our changing weather has my sinuses in a tizzy today. Hopefully the meds will kick in and the headache will start to go away, along with the sinus drainage. If not, I'm going to be really miserable!

All for this morning. It's cooler than it has been the last few days so maybe our stormy days are over. The birds are singing and I would not be happy with that if I was still able to sleep longer. As it is, it's a nice sound.

Yesterday was a good day, not a really great day, but a good day. Bill was awake and talking when I got there. He was North Woods Law on Animal Planet. This show, if you haven't seen it, takes place in New Hampshire and Maine and covers game wardens. It's actually pretty interesting and a few times it has shown things from Hampton Beach where Bill spent his summers growing up. So, it brings back some memories for him.

He didn't want to get into his chair so Mikaila put his bed in chair mode. I told her that she just needed to tell him it was time to do it instead of asking because he will always say no. His stomach looks much better. Even the places that were bleeding have dried and scabbed over, but the site itself is starting to close. He still doesn't want anyone to touch it as it's tender, but at least it's not pouring bile anymore. 

The Kexelate worked shortly after I left Saturday and his sodium and potassium went back to normal levels. But, he lost 4 points on his hematocrit and it was just above the cut-off for getting blood. So, he will probably get some blood in a day or 2. His kidney numbers are in the normal range, although Dr. Morris did have to add a dose of lasix because his legs were swollen from the knees up. I've never seen his thighs as big as they were!

He did more moving yesterday, which really surprised me. To get my attention, he started waving both arms around, and up until yesterday, he could hardly lift them without help. So, that was an accomplishment. He also "helped" when they had to roll him by bending his knees. He was very talkative and we had a hard time reading his lips at times because he was talking so fast. But, we did understand when he said "I have to poop". That also surprised us since he hasn't had the feeling to do that in a long time. He also told me later he needed to crap! And, he wanted to use a bedpan! So, mentally he was quite with it.

He did make it to the chair about 1 and stayed in it for 2 hours. He didn't look as comfortable as he did the other day and I think it's because his stomach was hurting from needing to use the bathroom. He had said that he had some pain earlier and Mikaila gave him some Tylenol, so maybe he was just sleepy from that.

Mikaila told me that the doctors have said they want the patients who are able to be up or in stroke chairs, to be out of bed before they round in the mornings. They round at 9. I don't have a problem with that, but, that's just another duty that has to be done at the beginning of  their shift, along with patient assessments and meds. Shift change is at 7, so they have a lot to do in the first 2 hours, along with take care of any emergent things that may pop up. Do the doctors think they don't do anything in the morning but sit around and drink coffee? So, we'll see if it actually works this morning!

All in all it was a good day. Bill would not commit to no wild parties or dancing girls because there were too many cute young nurses! When I told him I was coming home he just said "if you have to". I told him I would be back this morning and he said that would be OK but he wouldn't promise to behave! Then I got a double wink.

Have a good week!

Not much happened after the last post. Dr. Raiford (I think and my notebook is across the room) came by from urology and had the catheter inserted by the time I walked down the hall to the bathroom, did my thing, and walked back. Bill was none the worse for wear and Mikaila said he had no problems at all. He had her bring in a huge cart, like a big tool box with drawers, of supplies, and the only thing that was needed was a pair of sterile gloves, and those were in Bill's supply cabinet anyway! But, it was done and he was putting out lovely yellow urine, and continue to do so all day.

The Kexalate had not worked by the time I left, although he was getting a little stinky. It also produces a lot of gas. When the smelly part started I asked if I could look and he vocally said no and pushed my hand away! He had not gone, but a bit later Mikaila came in and said she needed to check his catheter to make sure it was clean, and she checked then. There was still nothing so I bet night shift didn't have a quiet night!

He did not get into the chair since they were waiting for that to work. He did still sleep most of the day, but he would wake up and respond when necessary. He also would wake up and ignore you (me and Mikaila) when he wanted to. Dr. Morris said that his kidney function is within normal limits now and he wanted more labs drawn to check enzymes again. But, since the medicine had not worked they were probably worse instead of better.

Mikaila did say that in the night his sugar dropped to 60 so he got a little boost of dextrose IV and it came up to the 1teens. Dr. Oktied also came in the night (I guess he's a night owl and will sometimes round at 2 in the morning) and lowered one of his insulins. He does keep a very close watch on the levels.

Dr. Nowak, who is covering for Dr. Threlkeld this week-end, started the antibiotics again. She said his white count had gone way down again, to 3, but was at 11 yesterday. And since the secretions had thickened and changed color, it was more than likely the infection was starting again.

That's it as far as I know. I left shortly after the stinkies started, but it was my usual time to leave. Oh yeah, the part that malfunctioned during the scope is the only one in the entire hospital! So, we don't know now if it will be repeated or not. But, since the bleeding seems to have stopped maybe it won't be necessary.

Today is the 8th anniversary of Bill's transplant. By this time of the morning, I knew that the heart had arrived, but I didn't know anything else for another 2 hours how things had gone so wrong. But, I've had him for 8 years longer than I would have and for that I'm eternally gratefully.

Cat is on my lap which makes this very hard to do. But, since I've said everything that needs said, I think, I'll end this here. Have a great Sunday everyone! We're supposed to get storms tonight, but none are supposed to be severe. There's a lovely wind blowing this morning and it's already pretty warm. The wind would be great...if I was only at the beach in it! Oh well, one of these days!

I may go a little later this morning. I tried something new for dinner last night and I won't try it again. I ended up throwing most of it out and about 3 this morning my body decided it wanted the rest of it out. It's easing off some now so I may wait a bit longer to go. It's Sunday so traffic will still be lighter and since the doctors aren't really saying much, except for infectious disease, I probably won't miss anything.

The internet has been zipping right along this morning. And now that I've said it, it will probably slow down, or stop working altogether!

Yesterday Bill did not feel well. He said his stomach hurt and he was nauseous and it was hard to breathe. His sats were down to the minimum acceptable levels and his heart rate was up. He also thought he might throw up.

He was rather agitated and Crystal from respiratory came by just to say hi. But, he was junky and trying to cough so she went ahead and gowned up and came in to help. Mike was tied up with the patient next door, so Crystal said that if he scanned his breathing treatments, she would give them. She also suctioned him a lot and just when she thought they got it all, he would cough more. She also changed his cannula and all of his tubing and filters. His sats did come up a little, but he was still agitated.

Molly gave him some Zofran and he finally went to sleep, but his numbers stayed off. His oxygen stayed in the mid 80s for about 2 hours. He also had some episodes of V Tach which is where his heart beats too fast. And then, all of a sudden, his heart rate dropped to normal and his sats went to the mid 90s and I could tell that he was really resting. He slept all day, but Zofran does that to him.

Molly told me that they were going to go ahead and do the scope of his bladder, even though his urine had stayed clear all night, and was still clear. She said it was scheduled for between 12:30 and 1. Later she came in and said that it was going to be at 1:30. At 3:30 she brought me the consent forms, even though she said there were no orders yet for the procedure, but she wanted me to sign them in case I left. I told her I was planning on staying until it was done so that I would know what they found. At 5:30 she came in and said she didn't know why they didn't say anything in the morning, but he had to be Covid-19 tested before they would do it. She said they would use the quick test but that takes about 2 hours to get results and she said it would most like be 4 hours. We decided that they probably would postpone the procedure then anyway, so I decided to go home. She called while I was on my way home and said that Dr. Threlkeld had over-ridden the order for the test and the procedure would be done at 7:30. I decided not to turn around and go back. He would have been taken to the OR by the time I got there. I knew I would get a call if something went wrong and I would get the results today anyway.

So, that was yesterday. Not one mention of discharge, not a phone call from the social worker, nothing. Just business as usual. I do know that the unit is full and that may be a reason. I know they moved a patient from step-down back for surgery. I talked to his wife this morning. He had a pocket of fluid that was pushing on a lung.

This morning the first thing I noticed was that there was no catheter hanging on the edge of the bed. That didn't make much sense, even for after the procedure because he hasn't felt the sensation to go on his own for a long time now. I did notice that the oxygen level on the vent was at 100% which was odd, but figured it just wasn't changed back after the procedure. His numbers looked pretty good except for his blood pressure which was a little low.

Stacy came in to re-insert a catheter and he is so swollen "down there" and he said it hurt, she decided she didn't want to do it. So she called the urology nurse practitioner. Dr. Greenberger isn't on call this week-end, but the nurse said she would call him anyway. It turns out they did not do the procedure. They decided to do it bedside and they got the camera inserted but it malfunctioned. So, it will have to be repeated, but I don't know when. Still waiting on a decision from urology. I do know that he has not voided at all. A bladder scan was done and there was about 400 whatevers (the amount they measure urine) and at 500 they will do an in and out catheter. You've seen those advertised on TV, they go in, drain the urine and take it right back out.

I asked Mike if he knew why the oxygen was so high and he said he didn't get anything in report about it. Dr. Okpor came in, looked at the settings, listened to him, said good morning and left. But he did tell Mike to start lowering the level. He's at 60% right now and doing well. He's still junky, but he's coughing it up. He's had his mouth suctioned and he's coughing it into his tubing. Mikaila has suctioned him some and he's getting a lot of stuff out.

Mikaila said that he started to de-sat in the night, dropping back into the mid 80s so Dr. Yaranov said to put him on the 100% to give him a boost.

His sodium was a little low and his potassium was a little high, so he again got the Kexelate to make him poop a lot. That's the fastest way to regulate it. He's been passing a lot of gas so maybe it will work pretty fast. Mikaila is also checking to see if they have a latex-free catheter they can use. He doesn't generally have a latex allergy, but with repeated use it can cause one. That may help with the scrotal swelling.

He's been interacting with Mikaila, answering questions. Me, not too much, but that's OK. He's snoozing right now. The docs are all coming early today but I think the ones who can get out after seeing patients are wanting to go and enjoy the nice week-end we're supposed to have. It's supposed to be in the low 80s and it's a beautiful clear blue sky.

So, you are all caught up for the last 2 days. I'm hoping the internet will stay up good enough for me to get some bills paid. There may be another post later today, once I know what it going on. The only thing I'm sure of is that about noon he's going to get in his chair. Mikaila wanted to wait until the catheter situation was taken care of, and hoping he would be finished pooping. Just keep checking!