Back at Work

Kevin finished his first week of work. He is schedule has him going in to the office MWF mornings, and MWF afternoons + TTh all day working from home. He is tired but has adjusted relatively well.

Drain News

Kevin saw his surgeon yesterday. We were hopeful about the status of his drain because so little is coming out of it; Kevin doesn't even empty it every day. There's about a dribble every-other day. So we were going to push for its removal plus a decrease or stoppage of his antibiotics which still leave him queasy.

Before the appt Kevin had a procedure done with contrast fluid and pictures. The results are not good. He has two leaks in his small intestine. One is where his intestine was resectioned. We don't know whether it healed previously and the drain irritated it to cause it to open, or if it never healed (or was not resectioned) properly. But there we have it. The drain stays in. BUT, because Kevin's body has formed a tract for the fluid to go right out the drain and it's not throughout his abdominal cavity, he can stop antibiotics. We are hopeful this will have a positive effect on him.

So the drain issue will be revisited in FOUR MONTHS. Worse case, if Kevin's body doesn't heal on its own and we still see drainage, Dr Choi will think about surgery EIGHT MONTHS from the date the drain was placed. Dr Choi could obviously tell this was not the news we wanted to hear and said since the drain is staying around we might as well give it a name. Any ideas??

Kidneys

Kevin had an appointment with his Nephrologist yesterday. His kidney numbers are now baseline normal for the first time. His creatnin is 1.0. Excellent.

I spoke to the kidney Dr about Kevin's chances of his acute kidney failure turning into chronic kidney failure down the road. He said because Kevin is young and healthy he feels he has completely recovered and citied the kidneys' remarkable ability to heal. However, if Kevin gets very sick sometime in the future, his kidneys could relapse for a time.

Improvements

By all accounts, Kevin is doing much much better. He is able to venture out on little trips though he still won't go shopping for clothes. We both hate clothes shopping on good days, I know he doesn't want to do it, but eventually he will need clothes that fit.

Kevin is planning on being back at work on Nov 28. He will need to go in to work the first day to do some stuff to his computer and present his Dr's release. But after that we anticipate a lot of time, at least the first week, will be from home. He is still weak and mornings aren't great for him.

His next appointment with Dr Choi is Monday Nov 21. I will push hard to get Kevin off his antibitotics - at least a reducation in dosage. It's terribly frustrating that his body is making improvements but the meds are holding him back.

Family Update

Some recent happenings:
The last time Kevin was in the hospital the girls had a four-day weekend. Because the girls have missed having a bit of fun this summer plus missed extra time with their friends during the beginning of the school year, I had each girl invite a friend over for a sleep-over. I know, I'm awesome. All the girls and friends got along and it was fun. I took the living room couch so each girl & their friend could have their own room. Because I'm awesome.

Mina & Bryn, Jessica & Alaina, Claire & Maia

All the Halloween costumes were store-bought this year. However, Claire & Bryn's, which were bought on-line, were both way too small. So I had to look at how the costumes were constructed, buy matching fabric, and add panels to the bodices and also enlarge the skirts. It was quite bothersome, but I did find a fabulous and easy circle skirt pattern that was way helpful and that I will be using more often. I wish I had it when I was making my disastrous poodle skirts last year.

Alaina is a Spider Countess

Claire is a witch - first witch we've ever had.

Bryn is a rose - oh, excuse me, an upside-down rose.

The week before Halloween, Claire had a concert at school. The name was "Mighty Minds" and it was all about how smart kids are and how they should do their homework and study for tests. A few children were chosen to be Mighty Minds in the concert and they got extra songs and lines. Claire doesn't like to do any of that, but she wanted to create her own Mighty Minds character. She chose "Mighty Cursive Mind" since she started learning cursive this year and loves it. Thankfully, I made her a superhero costume two years ago and, after much digging, found all the peices. I still had to make a new shirt and skirt and mask. It was the boots I didn't want to have to make over again. Those things took me 2 weeks and a call to my mother to make.

Notice the cursive "C".

I added a cursive "C" to the old cape.

The weekend after Halloween, Kevin's extended family planned a trip to Mason City to visit Great-Aunt LaVonne. She is Great-Grandma Beaman's sister. LaVonne usually comes up for Thanksgiving, but she is slowing down and isn't going to come this year. So we met at Bonanza for lunch to see her. (It was a surprisingly nice Bonanza!)

Great-Great Aunt LaVonne with Alaina Bryn & Claire

Aunt Debbie & Uncle Jim, their kids Ben & Chad, and Chad's family were there. Chad & Amy have a darling little girl, Gracey, who we haven't seen for over a year. They had fun playing together. Thanksgiving will be extra fun with her.

Alaina and Gracey

Claire and Gracey

Another huge event was Bryn's lost teeth. Kevin pulled the first one but Bryn pulled out the second one herself!

One tooth gone

Two teeth gone

And a post about our family wouldn't be complete without Baxter. I love him.

Baxter is waiting for Claire & Bryn to come home from school.

More Pills - Just What He Wants!!

Kevin has started back on blood pressure/heart rate medicine. As you may recall, he was on a LARGE dose (freaked out the pharmacist) before, and his blood pressure was quite low. Then, when we asked his nephrologist about it, he just took him off the Rx instead of reducing the dosage.

Kevin still has quite high blood pressure and heart rate. Dr Choi suggested we go to our Primary Care Dr to take care of it. So Kevin has that appt yesterday and his numbers were: bp 125/95 and hr: 120. Very typical of him. And very high. So he'll be on that for a while. Side effects - dizziness, fatigue, nausea.

I also got Kevin some probiotics. Dr Choi suggested Kevin start eating a yogurt every day, which he has been doing, and the Primary Care Dr mentioned what a tough combination of antibiotics he is on. So we added the probiotics, with the yogurt and probitoics taken two hours apart from the antibiotics. I'm threatening to get Kevin an hourly pill box.

Last Dr Visit

Kevin had an appointment with Dr Choi on Friday, mostly because his drain has a very low output and the stitch holding it in place came out. So the drain was stitched back in place with Dr Choi estimating it was taken out another ~1.5". He said it is about halfway out now and thinks what little is coming out isn't the leak anymore, it's the abscess. So - the intestinal leak has appeared to have healed, it's only what is left in the cavity is draining. The amount of fluid has really dropped dramatically, only trace amounts each time it is emptied. The next appointment is in a month - UGH.

Kevin just had a very busy Friday - he met coworkers for lunch and wore his pre-op jeans that he had to constantly hold while walking to keep from falling down, he helped his father install a new mailbox because our neighbor backed into it (he wanted to do the whole thing himself but I wouldn't let him - I'm terrified of him getting a little cut on his finger then bleeding out within minutes), and he showered and went to Iowa City. A lot of activity in one day. And he handled it quite well. I'm ecstatic at the progress he has made this week!

Seeing Improvement

Well, I can't get Kevin to go for a walk anywhere, but he is showing lots of improvement. Though he walks like an old man (bent over at the shoulders, arms lagging behind his torso, and shuffling slow feet) he is doing more for himself at home. He gets his breakfast, drink and pills now. He came outside to the driveway to check the tread on the tires because he was sure I wasn't doing it right. (I wasn't.) He can play with the dogs for a bit and go up and down the stairs a few times in one day. And he hasn't vomited after too much exertion since last Monday! :)

Kevin is meeting some friends for lunch on Friday (me, too, I'm his driver) and I'm super excited for him to get out. He can't eat very much at once, but the social interaction will be great.

After that we're heading down to UHIC for a blood draw to check his levels and to have his surgeon check his drain. It's outputting hardly anything - yea! - so it will be backed out by an inch or so again. I hope we're nearing the end of this one. Kevin is really looking forward to the day he doesn't have ANYTHING sticking out of his body. I was thinking about that; he has had at least one device, usually more, hanging off him for 97 days as of today. That is every day since July 18, minus the five days he was home after his first discharge. I bet it will feel great to finally have his own body back.

Getting Out

Kevin was able to come to church with us yesterday. It was tiring for him but well worth it. It takes a long time for him to get ready; shower, empty drain, change dressing on his tummy around the drain, and getting dressed easily take an hour for him. But everyone at church was so happy to see him and I and the girls were thrilled to have him with us. I brought my camera but I got busy and plus hated to ask him to pose when he was having difficulty getting around.

I'm really pushing Kevin to get out of the house and walk around a bit. It's so difficult for me to insist - I figure he knows if he's not up to it, and I don't want him to overdo it. However, he just can't increase his endurance if he doesn't get up and walk around. He does have to go to the Lab twice a week for blood draws, but I don't think that counts. I'm going to try to get him to go to the mall and walk today.

Disappointed

Spoke with a law firm on the phone today. EXTREMELY disappointed. I guess the fact that Kevin is expected to fully recover and has no permanent injuries is not good for a medical malpractice case. And since he is not fully recovered, they would like to wait until he has. Wait for what? They'll just say the same thing...not a case they want to take because no permanent injuries.

I would just have a meeting with Dr Renz and ask him if he could take care of our medical bills since he did say it was his fault, but the lady I spoke with said it isn't up to him, it's up to the insurance companies. And in her experience PCI thinks they will win every case so they take everything to court. Great.

Home Again

Kevin came home as expected Friday afternoon. His blood levels were not quite within the range they wanted yet, "supratherapeutic", but released him just the same. He couldn't wait to get out of there. While were we glad he was at UIHC, the hospital rooms are shared: double the beeps, double the nurse intrusions, double the health updates and medical conversations. It was extremely difficult for Kevin to get any rest.

That and the fact that he had to have his blood drawn every 6 hours to check Heparin levels. AND the fact that he is getting hard to draw blood from now; once they had to try four times over 45 minutes to get blood from him. Another time the nurses were sent back from the lab twice for more blood because the draw didn't have enough. The third time they finally got someone from the lab for the draw. Poor Kevin has bruises and little purple dots everywhere.

This blood clot thing has really worried Kevin. He told me he has high anxiety in bed before going to sleep because he's not sure he will wake up. While breathing is easier now, he still remembers the feeling of suffocating. I talked to him a lot about doing things that will distract him, like short visits from friends, taking drives, or anything else he can think of that's not health-oriented. I think it's time for another priesthood blessing.

Another Admittance

Kevin was admitted to U of I Hospitals today for a blood clot in his lungs. He was complaining of shortness of breath and a heavy chest so I called his nurse. The Dr himself called us back and said come in for a scan now. Kevin said he was surprised. Kevin, really. Not being able to breathe is not good. I was expecting it.

After the scan the Dr came in and said "I'm glad you're here. We found a problem." I was thinking pneumonia. Nope, P.E. That's Pulmonary Embolism for those not in the know.

It is a small clot and we caught it early. The Dr is guessing the PICC line, which was in him too long at 5 weeks, released a clot when it was pulled out. For those keeping track that's 4 misses for Cedar Rapids Drs. But, Kevin reminded me, they also saved his life. That was a group effort. One-on-one they're not so great.

A bit of information I didn't know; the blood clot will dissolve on it's own. The body has enzymes to take care of that. The drugs will keep the blood clot from growing and the blood thinners will keep another one from forming. Plus they are doing sonograms of Kevin's 4 extremities to make sure there are no other clots.

Now we get to learn the ropes at a whole other hospital. Yippee.

2nd Drain Out & Waiting

Kevin's 2nd drain wasn't doing too much - only traces of fluid coming out, so it was removed on Thursday, only 2 days after putting it in. At that appointment Kevin's PICC was also removed so we are done with infusions! I am sad to say good-bye to our home nurse, Rich. He was the most competent and knowledgeable nurse we've ever had. Based on him, I would recommend Care Pro Health and Home Infusions to anyone. The pharmacist called us often to check on Kevin, report his labs to us, update us with conversations he had with his Dr., etc. We felt in good hands with them.

While we are very happy to be done with infusions, oral antibiotics have a set of problems all their own. All 3 of them have the same side effects - nausea and loss of appetite. So Kevin is back to feeling sick to his stomach, not eating, and extremely weak. He came downstairs a few days ago and I worried he wasn't going to make it to his chair. Yeah, we're back to that. Great.

On the positive side, the remaining drain, the one that's been in for 5 weeks already, is producing less and less amounts of intestinal fluid. That is very good.

2nd Drain Complete

Wow - what a GREAT visit to U of I Hospitals yesterday. Kevin, who has had some horrible drain procedures, said it was really very mild and hardly hurt. They were able to aspirate a bit of fluid and showed it to us - it looked like old blood; a possible hematoma they said. And NOT INFECTED! They were trying to grow stuff out of it in the incubator to make sure, but no infection under the microscope. Score!! So Kevin didn't have to be admitted.

And another glowing meeting with our new best friend, Dr Choi. His demeanor is just fabulous - super friendly, easy-going, funny, but super smart and confident and intent. He is changing all of Kevin's antibiotics to oral starting on Thursday. I cannot fathom what sleeping through the night will be like. We wanted him to pull Kevin's PICC line immediately, but he very wisely said that Kevin just had an invasive procedure, let's keep it to 1 today, and since he did just have an antibitotic infusion before the drain placement, he should have one after to keep down the possibility of infection. We have another appointment on Thursday for him to check the output of the drain that was just put in. If there is hardly any it will be removed. And the PICC will be taken out then.

So. On to the second drain. He said what is happening is that the drain our old surgeon put in was put in TOO DEEP and has been in TOO LONG. So you know how this whole drain thing started with just benign old blood coming out, but it has changed to nasty infected intestinal fluid? Well, it started out fine and all the old blood had drained out and is gone. But now since the tube is in too deep it is actually rubbing against and irritating Kevin's bowel (small intestine) and CAUSING the current fluid. So the drain is causing the drainage. I asked "Can I have that in writing?"  AND, Kevin, seeing how deep the drain was when it was put in and on subsequent X-Rays in the hospital ASKED the surgeon in his office in a follow-up visit how deep the tube was and what it was intefering with. He said, Oh, it's in this deep, everything in there is soft, it's ok. Really.

So Dr Choi said removing the tube would create an abscess now so he has to back it out an inch at a time, wait two weeks, and back it out again. So we are looking at maybe 6 more weeks of this one.

Another interesting moment was when we revisited the TPN issue - not eating for 6 weeks and using IV nutrition. Our infectious disease Dr, who we saw on Friday, and who we will not be using anymore either, asked us if we would be doing that. We said no, our new surgeon has some different ideas. Then he said, Well, that is the standard therapy for healing the bowel. WELL. Dr Choi said "Yes, that is the textbook answer. But in this case I disagree with it." HALLELUJAH!! A Dr that has read the textbook but is smart enough to know when to deviate from it. We don't want Drs that say, well you have this symptom, so we have to do #1, then #2, then #3, because it says so right here. We want Drs that look at the whole picture and do what makes sense. And we knew that didn't make sense for Kevin.

And when the appointment was just about finished, Dr Choi asked us if wanted to see the scans. He went over to the computer monitor, pulled up Kevin's scans and showed us each one, pointing out the fluid pockets, the tube, the bowels, everything. We nodded, uh-huh, wow, interesting, look at that, neat. I asked Kevin on the way home if he could see anything. Nope. Me neither! Just blobs of grey. :)

7th Drain

Kevin's 2nd drain (7th he will have had overall) will be placed on Tuesday. We are due at U of I Hospitals at 7:30am for him to drink contrast fluid to have another CT Scan. They want a recent scan before the drain is placed. Good thinking.

When Dr Choi called to discuss the drain with us, he said he would take care of the scheduling of this procedure himself because he wanted to choose who will do it, not just take the first available guy. Boy, do I like Dr Choi.

After they see the fluid they will determine what happens next. If it is clear = not infected, Kevin can come home with me. If it is infected (I fully expect it to be) they will keep Kevin overnight for observation. I hate to have him so far away, but if it's only for 1 night he'll be ok.

Filling My Bucket

A friend popped over unannounced a week or so ago to give me a hug, ask what she could do for our family, and ask what I am doing to fill my bucket. I thought about that. Hmmm.... I'm doing housework?? She looked at my quilt rack and asked if I had quilted anything lately. No, not lately.

And THEN a few days later, on a Tuesday, I received an email telling me about a baby shower on Thursday I missed getting an invitation for because I had to duck out of church early. A-Ha! I thought. My opportunity to fill my bucket and quilt something...in 2 days.

I looked through patterns for fast and easy ones, I looked through my fabric stash to see what I already had, and I made a plan. A quick trip to Pine Needles to find backing for the fabric I already had, and I found they still had a few bolts left from the same line!! Score.

 

Front of the quilt - very simple strips. The pattern is called "Stacked Coins".

 

The back. It's the first time I did any piecing on the back of a quilt. This is all the rage now and I can't believe it turned out straight!

 Wrapped nicely for the mom-to-be, Ivy.

 

Preparing my strips. This part takes a while. I am very conscious about NOT having any of the same fabrics next to each other so I can get the random look. :)

I would love to do some more quilting. Someone else have a baby! Quick!!

Scan Results

Again Dr Choi exceeds expectations. He called us a day early, at 6:30pm on a weekday, and spoke with us personally, to give us Kevin's scan results.

Kevin has a bowel leak. We do not know yet exactly from where in his bowel. It could be from the surgery site or it could be from somewhere else. The medical history dictation from that surgery reads "...although the entire small bowel could not be evaluated because of dense adhesions from the inflammatory process. It was felt that this may cause more damage than looking for another abnormality." So Kevin's current drain will remain although Dr Choi mentioned backing it out a bit because it is in too far. Again, if the fluid doesn't stop it will require surgery.

Kevin has another pocket of fluid near his right kidney in a "hard to reach and difficult" place. This will require another drain. Dr Choi feels this will be place about two weeks. He mentioned consulting with his colleagues about this one. This is an infected abscess so Kevin will continue on antibiotics although Dr Choi will want to do them orally. So now I think we will cease and desist with our infectious disease guy here, too. And again, if this drain doesn't stop - don't know if this is an active leak or not - it will require surgery. In a hard to reach and difficult place.

I am compelled to point out the obvious on this one: that if Kevin's current drainage stopped, the tube removed and all deemed well, this pocket would never have been discovered - until he keeled over dead one day. Or something.

The scan definitely did what it was supposed to do. We are thankful for that. It's not really good news but somewhat expected. All I see is months more of the same + more travel.

Meeting Dr Choi at U of Iowa

My biggest fear when meeting with Dr Choi was that he wouldn't have enough information on Kevin to give us an informed decision, or that he wouldn't have the time to gather the information. Thank goodness I brought hard copies of Kevin's medical records. A nurse scanned copies and I had separated out some pertinent ones. She checked on us later, apologizing for leaving us waiting, and explained the Dr was looking over Kevin's records. I said she could take as long as she wanted.

Another nurse came to sit down and chat with Kevin and get his history from him. He began to tell his backstory and she asked, "Were you ever on 3West at St Lukes?" He said yes. "Was your first room number 316? I remember you!" Turns out that she works at St Lukes on the weekends and she remembered so much of Kevin's history and she was very helpful. I knew he had quite the reputation - it followed him to another hospital in another city!!

By the time Dr Choi came in he was familiar with Kevin and what a tough road he has traveled. The visit was all we had hoped. We still don't have all the answers, but we feel much better with the direction we are headed. Some items we discussed:

* Don't know where the fluid is coming from. We did another scan at U of I, results to be available on Thursday. We have been completely frustrated with the results of ALL scans we had at St Lukes. They all showed nothing. Ever. Three scans before Kevin's second surgery and none of them showed a bowel perforation. So. Preparing for the scan at U of I we were noticing some differences. Different contrast fluid. Different equipment. Different technique. We are so hopeful that this scan will reveal something.

* Dr Choi looked at Kevin's PICC line, his list of medications, and asked "Why are you on antibiotics?" After all, his white blood count is normal. We reviewed what we had been told, and he listed all the ways being on antibiotics too long can be problematic, as well has having a foreign body - the PICC line - in longer than necessary. And boy, are we tired of doing infusions every 8 hours. We've been doing that for about one month. Dr Choi completely hit the nail on the head when he said "They are treating your STORY and not treating you as a PATIENT." Smart observation. Yes, we know they are being overly cautious with Kevin but really don't want to be doing all this if we don't have to. We have an appointment with the Dr of infectious disease on Friday which could be...touchy. We are thinking we will keep the appointment and see what he says. If we like it, fine. If he says he wants us to be on antibiotics for another 2 weeks - we may have to say forget it.

* Kevin's pouch system that holds his fluid drainage was changed. The pouch has wicked glue holding it to Kevin's skin and it alone can cause him pain. Last week I called his nurse to come to the house because Kevin developed a wound underneath it - a pressure ulcer from the bag. The nurse changed bags and packed the wound, but Dr Choi eliminated the bag altogether and put a little bulb on the end of the drain with a safety pin at the top of it - so Kevin can pin it up under his shirt and hide it. A definite improvement.

* IF the drain doesn't stop we were not happy with our current surgeon's plan of action to stop Kevin from eating for 6 weeks and put him on TPN - all to hopefully heal the colon which he suspected might be the source of the fluid although he doesn't know that. Dr Choi again listed how problematic TPN is, with which we are all too familiar. He said he couldn't really say what he would do if the drain doesn't stop because he doesn't have complete data yet. Good enough for me. We can wait a few more days.

* One of the first things Dr Choi did was to look at Kevin's fluid drainage and put the tube in a vial to get a sample. FINALLY!!! Do you know how many times I was draining that stuff at home only to measure it, pour it down the drain, look at Kevin and say "Shouldn't someone else be looking at this??" Of course, now that we are at the Drs, we couldn't get any fluid to come out. Each of us, Dr, nurse, and I, took turns pushing on Kevin's belly, asking him to do crunches, move this way and that, to try and get fluid out. It was kind of funny. AND THEN when it did start coming out Dr Choi said "It looks like intestinal fluid." WHAT?? I cannot say what horrible things will happen if it is shown that this fluid is coming from Kevin's intestine.

The results from the CT scan will be done on Thursday. I will call the hospital then and pray there is some news. And continue praying that the fluid will stop. And thank heavens we found a good surgeon.

U of I Hospitals

We have an appointment with the Director of Specialized Surgery at the University of Iowa Hospitals this Tuesday, the 27th at 9:00am. Thank heavens. I can't believe they got us in so quickly - in 2 days!! I was worried it would take weeks and we have an appt with our surgeon in two weeks. I definitely wanted to speak with someone else before then.

I went to the Records department of St Lukes and got Kevin's medical history. The abstract is free and includes the results of all procedures and Drs dictations and labs. In addition I requested the consent forms Kevin (and I) signed. All together it's about 300 pages. The entire medical history, which I requested at first, is not complete because 31 signatures from Drs from their orders are pending. But we have the subsequent procedures and those results. Plus the entire history is 1,000+ pages and the cost to print it would be $300+. So I said we'll take just the free abstract for now, thanks. :)

I am surprised to find I can understand (and pronounce!!) most of everything I'm reading. It's very interesting and I'm tagging pages pertinent to his present condition that I figure the U of I Dr will want to quickly review.

We are so so happy to be seeing someone else for his opinion. I'll post Tuesday pm for the results of the consult.

Drain: Stop Draining!!

We went to see Kevin's surgeon yesterday. It was not very promising. Kevin's drain is still draining, though the amount has lessened overall quite a bit. Because this is not an emergent situation we will wait 2 more weeks to see if the drainage completely stops. This really needs to happen. If it does not:

* Kevin would have to stop eating for 6 weeks and return to only TPN nutrition (sugar water) likely administered at night. This is longer than he had it in the hospital. This is because Dr thinks the fluid might be coming out of the colon because tests show it is not the small intestine. However, he was quick to point out that he has never been near Kevin's colon though Kevin did have a drain placed by radiology near it. Kevin not eating would allow the colon to heal on its own.

* If not eating for 6 weeks doesn't stop the fluid a surgery to find the leak would be necessary. Kevin has a bad feeling that another surgery might be necessary. Obviously we do not want this to happen.

Neither of these options is ok with us. I think we have been pushed towards getting a second opinion. I will start making some phone calls tomorrow and hope we can get in to see someone soon. Also, all surgeons in Cedar Rapids are part of the PCI conglomerate so we will have to move our search to Iowa City. I am looking for any recommendations for a surgeon so we don't shoot in the dark and end up in the same boat we are in now.

Monday, September 19

I haven't posted in a while because there has been nothing to report. Kevin's drain is still draining. He is still tired all the time (his normal awake hours are 10am-3pm, 6pm-10pm) and still on IV antibiotics. He is oh so weary of the lack of progress. Some days the fluid from his drain is minimal and we get excited but then the next day there will be more and we get discouraged. Also the fluid changes colors all the time so that's freaky.

Kevin has an appointment with his surgeon on Wednesday and we are hoping there will be some answers. But that is not very likely since he still doesn't know where the fluid is coming from or why it is there or when it will stop. :( Kevin is very afraid that he will order another test that will give us no answers. And the possibility of what a non-ending drain means... either way, we will know more on Wednesday.

Saturday, September 10: Dr appts results

The result of Kevin's Dr appts yesterday were pretty good. He is off 2 medications so he's down to only three oral meds. His infection Dr took him off one antibiotic, leaving three left, and he is finally off the Metropolol, the blood pressure med. We asked the kidney Dr about that one because it was prescribed by his partner, and he said if Kevin didn't have any blood pressure problems pre-surgery there's no need for him to be on it now. Kevin's blood pressure was actually quite low at the beginning of the appointment and Kevin has been light-headed and weak(er) for a few days. Of course they had our medication list, but it took US to question THEM about his medication and what would be best for him. We learned a long time ago that we are our own best advocates.

Also - Kevin does not need to see the kidney Dr again. His #s are great, not quite normal but getting there and will be there soon.

The surgeon is still trying to figure out where all the fluid is coming from and that was kind of a relief for me. I thought it was entirely possible that they would wait until the fluid stopped draining and call it good. This is so much better so we can be sure that the mysterious area is actually healed so when Kevin's open wound seals up we are assured he won't have any more problems...with that one area.

So Kevin has an easy non-invasive procedure at the hospital Monday morning called a fistulogram where contrast liquid will be squirted up his drainage tube and they will scan to see where it goes. Kind of backwards from what we have done before. Kevin is stoked not have to drink the contrast liquid, and kind of bummed to do another procedure no matter what the reason.

Of course there is the dire possiblity that we could see a huge problem in Kevin's tummy requiring more fixes than we would rather. Or we could see that he is healing on his own and we continue to wait, OR we could see nothing and no questions will be answered. And that has kind of been our experience with a lot of procedures so that's my vote.

Thursday, September 8: Day 5 at Home

There hasn't really been too much to report, so I'll start writing blog entries only when there's news.

Today we met with the Infectious Disease Dr. Everything's going well and Kevin's numbers are good though it's still a wait & see game. Our next appt with him is in THREE weeks and it's hard for Kevin to realize we might be waiting that long. But he is at home and comfortable in the mean time.

Kevin's #1 goal is to get his drain removed. It's still producing fluid so it's not ready to be taken out, but it's driving him crazy. It's in an awkward place, it keeps him inside and limits his activities, and it's the only reason he requires pain pills occasionally. We see the surgeon tomorrow and will get a better idea about the drain then.

Tuesday, September 6: Day 3 at Home

Wow, it was so quiet with the girls at school today. Extra time for Kevin to rest.

I spoke with the pharmacist and we are able to change the times Kevin is infused; instead of every 8 hours and hitting at 2:00am, we are changing a bit every day to eventually end up at 11pm. That will give Kevin a good 7-8 hours uninterrupted sleep, if I can take him off at midnight without waking him up.

Kevin's tummy is bothering him a bit and he says it's very sore and makes it difficult to move. I called his surgeon and his nurse said to take a pain pill. :( It's hard not to get worked up at every symptom and think it's something big; after all, every time so far it has been. But, he does have a drain in his tum-tum and it could just be sore from that.

We have 2 Dr appts Thursday, one Friday and one Monday for follow-up. Kevin's kidney numbers are STILL improving each day!! He is shooting for 1.0 creatinine levels though up to 1.6 may be considered normal. Right now is at 1.5. Yea!! I believe at one time in the hospital he was around 8.

Monday, September 6: Day 2 Home

Kevin's mood continues to get better. I'm not sure about his body. His drainage is increasing (from 15mls in the hospital to 100mls daily at home) and we don't know what that means. I will call the Dr tomorrow when he is back in his office to discuss.

His blood pressure continues to go down a bit, too, so that's good. He's eating well but I want him moving more. I am threatening to make him walk down the driveway and back.

IVs at 2:00am and 3:30am are still killing us but I'm getting used to it.

Sunday, September 4: Day 1 Home

Well, I'm getting used to the IV regimen. There's really nothing to it but the 2:00am one is killing us.

Kevin is doing really well. He's eating well and moving well. He's lost 2 more pounds and I want to make sure he is healthy, gaining muscle weight and ingesting nutrients.

Kevin gave himself a haircut today with his clippers and looks TONS better. He just couldn't take 3-month-long hair anymore.

Vitals are better. His heart rate went down from 129 on Saturday evening to 89 tonight. Blood pressure went down from 124/100 to 114/90 from Saturday to today.

Saturday, September 3: Day 5

Kevin was discharged late in the evening and is home. Again. He does have an IV and drain tube intact. Soon after we came home, the home nurse arrived with all the paraphernalia I need to hook up and remove the IV antibiotics. It's kind of fun. Except for the one he needs at 2:00am. Yep. Every morning for two weeks at least, I need to get up at 2:00am, hook Kevin up, then at 3:30am unhook him. Sigh.

One of the questions we had when we left the hospital was Kevin's heart rate/blood pressure meds. He had not been taking them in the hospital but the discharge papers said he should continue taking them at home. We questioned if he truly needed them and got no answers. Just "Call your Dr on Tuesday". But when we asked the home nurse, he checked Kevin's vitals and made a few calls right then to get us answers. We like him. Bottom line is: heart rate and blood pressure are still very high. So high that the nurse looked right in my eyes and said to me intently "If Kevin gets blurry vision or chest pains take him to the ER RIGHT AWAY." Okey dokey. Message received. So why wasn't he getting them in the hospital for the last 5 days? I really believe it was an oversight.

Friday, September 2: Day 4

There is a small chance Kevin will be discharged tomorrow. I also have Alaina's birthday party tomorrow (1 month late to accommodate our crazy lives) but the hospital has said it's no big deal, I can come get him whenever. IF he is discharged tomorrow.

It is definite that Kevin will come home with IV antibiotics. The hospital contacted the home care company and it is all set up. It is also covered by our insurance 100%.

It is also definite that Kevin will come home with his wound completely open and the drain intact. It is our understanding that the IV is in a backpack-like contraption and that he has no travel restrictions; however he refuses to go anywhere with a visible bloody pouch hanging from his belly. I don't blame him.

Thursday, September 1: Day 3

AWESOME DAY!!!!

Kevin is stronger, has more stamina, is eating well (if he likes the food), and has more energy today than I have seen in the last 6 weeks. It was amazing!!!  He took a shower at the hospital, stood up the entire time, sat in a chair (NOT in bed) afterwards, was chatty and perky and upbeat the entire time, then we went for a walk afterwards. I am telling you, he was like his old self instead of the shell of a person I have been seeing day in and day out. It was completely wonderful. I guess extracting 3+ cups of sloshing unused blood in the belly can do wonders for a person. :)

We are still a bit frustrated that there is no "plan" for him. Kevin's surgeon told him he will be gone over Labor Day weekend, so he won't be there to give the green light for discharge. So we're expecting Kevin to have to stay until Tuesday. We may not be correct but that's what we're thinking.

Kevin's infection Dr is thinking that he will send Kevin home WITH AN IV when the time comes. He said it was no big deal and teenagers can handle it. Kevin is extremely nervous about this proposition but I know I can handle it (I'll be the one doing everything with it anyway). And if it's better for him, all the more reason do it.

Wednesday, August 31: Day 2

If we thought the name "Kevin Beaman" was notorious in our circle at St Luke's before, it certainly is now. The cleaning lady in 3West stopped in our room to ask why he was back. The PICC team (PICC is another kind of line, a different kind of IV) expressed their condolences and corrected Kevin on the number of PICCs he has had (at least 4). Everywhere he goes his reputation precedes him.

Kevin's CAT scan last night showed isolated pockets of fluid. I could have told you that. What we didn't know was how they would proceed. Kevin really really really didn't want a drain put in. We have found them to be not very helpful and they have been one of his most painful procedures. So he was really really really happy that they decided to pull the fluid out of one pocket (why just one? why not both??) with a needle with no drain necessary.

We're pretty sure the plan is to wait for a few days and see if the fluid comes back. If not, he will be sent home. There is still no answer as to where or why it is there. Kevin said when his Dr came to visit him this evening he did a lot of head-shaking (as he did yesterday) which did not instill very much confidence in him.

Tuesday, August 30: Day 1 Second Time Around

Kevin went back in the hospital this evening. He is extremely disappointed to be back there but is a good sport. He knows getting upset won't do anything so he isn't.

We went to see his surgeon this afternoon because Kevin had drainage from his main incision. After asking a lot of questions and listening intently to the answers, Dr got out his surgical scissors and clipped Kevin's wound open. Just like that. Kevin said it didn't hurt and I can't imagine how it couldn't. No topical anesthesia, nothing. Just clip clip. Blood started gushing out. Stacks and stacks of gauze, lots of pushing on his tummy to get it to come out, and I even used Lilly's line of "Can't you just tip him over to get it to drain??"

It kept coming. and coming. and coming. It was just old blood, no puss, not infected-looking, no bile, etc. Every so often Dr would smell the gauze when he was throwing it away and he even had Kevin smell it. No foul smell, just seemed like blood. I'm still not clear where it came from. Something about his tummy muscle or underneath that muscle or something.

After a while Dr shook his head, mumbled about how anything that happens to Kevin doesn't surprise him anymore, said we need another CAT scan to make sure nothing's leaking, make sure there's no communication between the bowels & the cavity, probably need a drain, etc. We asked can't we have a drain at home, can't we schedule appointments and drive to the hospital for the scans, why do we have to be admitted, please PLEASE don't make us go back to that place, etc.

However, after the initial shock, and after I took a long hard look at the huge three-inch opening in Kevin's belly, I said, I can't responsible for that at home. If we are worried about infection, you can't be at home with that thing open. And Dr really wanted us in a place where Kevin could be monitored. So.

He put in a makeshift drain right there in the room (used a needle and thread and sewed it into the inside of the wound - just like that. He said "I'll try to sew this in a place where it won't sting") and a pouch that adhered to Kevin's tummy around the opening. Within 5 minutes the pouch had to be emptied. It was about 2 cups. And this was after the initial 15 minutes of gushing that they sopped up with gauze. They asked Kevin if he felt better. He gave his usual "Eh."

We are back in our good old suite of 327. Kevin is really super in the depths of despair. He said "This wasn't supposed to happen." But his lack of improvement, his bloated tummy, his lack of appetite, everything in the last 5 days led us to think there was a little something going on that shouldn't be. We found it so that's great. Now we have to give up control again. And pray.

Monday, August 29: Day 5 at Home

While Kevin was sitting he felt something on his tummy. He looked down and his incision was dripping puss. I called the surgeon and spoke with his nurse. She said it had better be looked at so we have an appointment to see him Tuesday.

Kevin is also getting a few fevers. Our thermometer was sporadic (101-102) so I don't have a definite number, but I gave him Tylenol and within an hour he started sweating buckets. I got worried but then he reminded me that he always sweats huge when breaking a fever. Oh yeah.

So the puss + fever = worrisome.

What I also don't like is Kevin's coughing spells. Monday night he coughed from 3:34am-5:15am and he only stopped when he threw up. So I will also mention that to the surgeon. Of course I'm thinking fluid in the lungs again. I hope not.

Sunday, August 28: Day 4 at Home

I have started to write down everything that Kevin eats and drinks, plus every movement considered physical exercise such as going up and down stairs. Both of us are a bit surprised at the lack of progress since he has gotten home. Nothing seems to have gotten easier or better in the last few days. He continues to have difficulty eating. I gave him three different dishes for dinner last night and he couldn't eat any of them. He finally drank a diabetic protein shake we brought home from the hospital.

Part of the problem is Kevin's coughing spells. When he starts coughing it's difficult to stop and he can cough for hours. The amount of air he takes in while coughing makes him heave, and today he threw up for the first time. Not good for someone who is barely eating anything anyway. We don't know what makes him start to cough; many times it's after meals and many times it's in the middle of the night.

We almost went to the ER last night; Kevin said his back was killing him where his left kidney is. I tried to be calm and after a while he said it could just be a sore back so we waited it out. It didn't appear to turn into anything, and I certainly didn't want to take him to the hospital. But anything including the word "kidney" and "hurt" makes us worry.

Saturday, August 27: Day 3 Home

Kevin managed to take a shower today and is using a bath stool. I'm sure being clean and feeling the warm water felt wonderful. He got "clean" at the hospital with antiseptic-smelling washcloth wipes, but it's not the same. Still hasn't gotten a haircut, we're hoping he can do that on Monday or Tuesday.

He hasn't yet done his physical therapy exercises, but I will see he does them today. He went up and down the stairs a few times yesterday and he said that was enough exercise for him. Any movement just wears him out for hours. We made a goal to attend one hour of church next Sunday Sept 4. I hope he makes it.

Thursday, August 25: Day 38

Kevin is home. He is finally home.

He is taking 5 medications; 3 antibiotics, one for heart rate/blood pressure, and one for sleeping. We have 4 follow-up appointments in 1-1/2 weeks for re-evaluation. The pharmacist said Kevin's heart rate/blood pressure med is one hefty dose, and Kevin's worried that he will continue heal and the Rx will lower either or both more than it should. The pharmacist warned us to make sure his heart rate stays above 50, and Kevin gets very light-headed which worries him about his blood pressure. Tomorrow I will probably get an automatic blood pressure reader to put his fears at ease.

Both times Kevin has walked upstairs it has been a battle to make it. He is extremely weak and it is difficult to see him this way at home. He will get stronger fast, but my visions of our walks outside won't happen soon.

One of his goals is to make it to his barber!! His hair is extremely long and it's driving him crazy.

Tuesday, August 22: Day 36

Another good day - - -

No dialysis again. 4th day in a row. If Kevin's kidney numbers hold and he does not have dialysis tomorrow, he will be done with it and his perm cath (permanent catheter for those not in the know) will be removed. I see no reason that after four days his numbers would spike, so I am fully anticipating dialysis to be done.

I still remember Kevin lying down in a hospital bed in the ER on July 18, having just finished a CT scan. He turned his head to me and said "I'm in kidney failure. That's what they said," all casual-like. I thought he was dying and I spent the next day planning his funeral. Little did I know that kidney failure would become the least of his problems over the next 6 weeks and I never really worried about his kidneys very much after all the kidney Drs said the same thing; kidneys are the laziest and most resilient organs. They will come back. And it looks like they have.

Kevin's last drain was removed today, the one he really really wanted gone yesterday. This one was put in about 2-3 weeks ago when he was in ICU when they were trying to get all the suspect fluids out of his body hoping it would decrease his infection. This one never did drain very much and was more of a nuisance and pain than any help. One more hole gone, one more scar remains.

Monday, August 22: Day 36

Kevin walked!! Really walked!! Without a walker, without holding onto his iv stand, and without the help of the physical therapist. He walked!!

Also no dialysis AGAIN!! 3 days without dialysis is definitely what Kevin needs right now. He is ecstatic at the news.

He hasn't heard anything from IR (Interventional Radiology for those not in the know) about removing his last drain. Fluid really isn't draining from it and they've talked about taking it out for a while. Kevin is very eager to have it gone.

Sunday August 21: Day 35

Today started out a little rough. Kevin tried to get up for a walk but just couldn't do it. He was extremely light-headed and felt like he was going to pass out. He did manage to take 3 walks throughout the day but it was hard to see that there is still so far to go.

Kevin's had to work hard to keep his blood sugar up. He's tested a few times daily and if it's too low they want him to eat some chalky glucose tablets - about a quarter size in diameter. The first time his blood sugar was 49 and they gave him EIGHT tablets to eat. He got through 4 and said he was done, if he had to eat any more he was going to throw up. The nurse made a big deal about it and said he would have to sign a refusal if he wouldn't eat any more. I asked if he could drink some juice, got him some, and then ran to the vending machine to get him some candy also. When I was out of the room I also called our diabetic friend (Hey, Steve!!) who gave me some good advice boiling down to the fact that juice = good, glucose tablets = suck. So after I gave Kevin the juice they tested his blood sugar again in 15 minutes and he was 119. So there.

No dialysis again today. Two days in a row is a very good sign. We are praying praying praying that this trend continues.

Saturday, August 20: Day 34

Breakfast went better and he ate - by himself - his entire pancake! Excellent. He did require Zofran because he got nauseous after a few bites, but he got back into it and did a great job.

Then his kidney Dr visited. She is not too optimistic and doesn't say much. She is usually of the "We'll see" and "You're going in the right direction" variety. But today she said Kevin does not need dialysis for 2 days and she is crossing her fingers that he is looking at TWO WEEKS TOPS. WOW. Extremely exciting. He's to the point now where too much dialysis can impede his recovery so they are taking it day-by-day.

Kevin's movement was also really good today and he took 3 walks.

They also took him off oxygen so as of today I can see his entire face. He is still on quite a few other medications - blood pressure, heart rate, antibitoics (3 still I think), insulin, calcium, anti-nausea, sleep aids, and others too probably.

Today was an extremely good day. :)

Friday, August 19: Day 33

Kevin had 3-1/2 hours of dialysis today. Now that he is off IV nutrition and s\is able to urinate, dialysis doesn't take off pounds of fluid it only cleans his blood. That's good. We have been told that he may need to continue dialysis after he is discharged. That's bad.

I hope Kevin walked today, but he had not when I left at dinner time. It is a real struggle for him to eat. My job is to force him. So, I did. For 45 minutes. I am doing my job. He managed to eat all his applesauce and drink Glucerna. That's it.

Lilly, my sister from FL who is here watching the girls, is leaving on Tuesday. Kevin certainly won't get as much of me after she leaves which I'm worried about. His parents will help out and be either at the hospital or at home when needed. I want it to be me doing everything but obviously thaat can't happen and this is the next best thing. My girls are going to miss their aunt and 2 little cousins.

I had two conversations today about Kevin being discharged. One was with a social worker and we went over what accommodations he might need when we comes home; a bed on the 1st floor, a chair in the shower, a walker, etc. I don't know what condition he will be in when he comes home so it's premature to set anything up, but it was nice to start thinking about him coming home. I am just nervous about it being too soon. Once he's home from the hospital I want that to be the end of it.

Thursday, August 18: Day 32

Kevin walked today! He walked with a walker, with the help of 2 physical therapists, but, he walked. About 50 feet total. He said he felt much stronger. Day by day.

Also good news - for a time today Kevin had no IV! That hasn't happened before. After a while they had to hang an antibiotic, but I couldn't believe the only thing had was hooked up to was oxygen for a while. Quite frankly, it made me suspicious; I thought for sure they were forgetting something.

Today was Kevin's last day on TPN, his IV nutrition. Hopefully this will make him want to eat since the nutrition obviously makes him feel a bit full and can hinder him getting calories by mouth. He really wasn't been eating well at all. Sometimes it's no appetite, sometimes he feels full, sometimes he feels nauseous. We are trying to get him to eat anything at all. We've brought in DQ shakes twice with blessings of the nurses. Any calories for him is great.

Wednesday, August 17: Day 31

OK, that's it with the "getting caught up" posts. There's too much. I just need to keep this current.

Kevin is out of ICU!! We are back to 3rd floor, post-ICU. It feels great.

Kevin's dialysis run today was 3-1/2 hours, the shortest. I don't know how much fluid they took off, normally it's 4-6 liters. 1 liter of fluid is roughly 2.2 pounds, so whenever Kevin has dialysis they take off 10-14 pounds. That's crazy to me. He gains ~5 pounds in fluid weight daily with IVs, especially his TPN which is a huge heavy bag of nutrition they pump into him

HUGE NEWS: Kevin's white count is within the range of normal. Two weeks ago he was at 35(k) and it has slowly dropped since then, with it going the wrong direction on some days. A few days ago it was 10.2. The high side of normal is 10. It's been a long time since we've heard "normal" from a Dr. Last night I asked his surgeon if this means the infection is gone. He said his cautious optimistic answer is "yes".

Other HUGE NEWS: Kevin is urinating quite a bit the last few days, sometimes as much as 250cc at a time (~8.5 oz). Usually it's around 100cc (~3+oz). This doesn't mean his kidneys are full-functioning, or even that his numbers are better which they're not. It's a great indication that "things are going in the right direction", a phrase we hear a lot. His kidney Dr this week says when he starts urinating liters, then we'll get excited. But excuse us, we are getting excited now.

Occupational Therapy finally caught up with Kevin after 7-8 days of trying to see him only to find his room empty - he's had that many procedures! Bambi, his therapist, said she was surprised to find he was an actual person! OT deals with lifestyle therapies, such as putting on socks, bathing, combing hair - stuff you would do at home. PT, physical therapy, deals with the balance, stretching, walking and standing. Kevin gets both groups daily. Bambi said two things about Kevin: how well he could move already (he could put socks on by himself) and how quiet he was. I told her to get used to it.

Today was the first day of school:

Everyone had a great first day, even Alaina who just started Middle School. I worried about her all day long but she came home with a huge smile on her face! Yea!!

Week 3

I am writing this two weeks after, so let's see if I remember the highlights of the week after "Friday evening" - when Kevin coded.

Kevin continued to write to communicate. At times it was difficult because some nurses had his restraints tied so tightly that he could hardly lift up his hand. And sometimes it was still difficult to tell what he wanted or what his question was. It took so much energy and concentration for him I hated to ask him to repeat, but often I had to.

We expanded our Dr universe to include a pulmonologist and cardiologist and continued with the surgeon, infectious disease, and kidney Drs. I began to go to rounds in the morning to get updates on Kevin's status and then I had the ability to ask questions of the entire healthcare team (around 10 people daily - respiratory nurses, charge nurse, dietician, pharmacist, social worker, and the Dr on the floor that day).

My sister, Lilly, flew in from Miami the Monday following to take of the girls so I could concentrate on Kevin instead of scheduling the girls with friends and worrying about them when I wasn't there. It was an overwhelming offer, one that I had a difficult time accepting, but I knew I would be a fool to refuse it. So she brought her 2 month old baby and 2 year old toddler with her and hunkered down.

What everyone was saying to me was that Kevin "is very sick". It became clear that there was no timetable for recovery.It was truly one day at a time, which was very distressing. Often this week I would leave the hospital at night excited for the progress made during the day, hoping it would lead to more exciting news in the morning. Then I would arrive to learn his fever had returned, his white count went back up, or he had to be put back on some medication. I started every morning by crying, realizing again and again how long and hard this would be.

Kevin's ventilator was finally taken out Wednesday afternoon - 5 full days of breathing with a machine.

August 1: Day 14 in the Hospital

I want to start giving updates on Kevin’s condition to more people at once, and also keep track of his progress for our family. I think this is the best way to do it.

I won’t include everything that got us to this place, but here’s the latest. It became apparent that there must be a hole in one of Kevin’s organs. The 2 drains put in his side to drain the bit of bile that may have seeped during his gallbladder surgery were putting out too much fluid for the leak to be small or the leak to be already healed. 2 scans and a scope showed no leak. Our surgeon asked for a second opinion on the last scan, and although a leak wasn’t found, the radiologist said there might be some air in his intestine. An exploratory surgery was scheduled for the same day, Friday afternoon. A hole was found in his small intestine which was repaired.

Kevin was sent back to ICU for recovery. He was talking to me, was in excruciating pain, and his heart rate kept climbing. I could tell, and he could tell, that his body was in a great deal of stress which he could not control. Dr Hanak, Lung Dr and Intensivist (supervisor of Intensive Care) was called in, Kevin’s kidney Dr was called on the phone, a cardiologist was called in, and our surgeon’s partner was called in. Dr Hanak kept calling me out of the room to talk to me to tell me 1) Kevin may need to be transferred to U of I Hospitals, and 2) Kevin was extremely sick. More and more bags of medicine were continuing to be hung from his now 3 IVs. I counted 12 bags. His ICU nurse kept calling out orders to others, getting Drs on the phone, and running back and forth to hang bags. The activity was constant and driven and scared me. His heart rate got up to the 170s.

I was with Kevin as much I could be during this time but left when I felt I was in the way. Kevin’s mother, Linda, was with me throughout the afternoon and also feeling the pressure of the situation. I left the room to comfort her and I heard the nurse yell loudly “Kevin! Kevin!” She started slapping his hand. “Kevin! Can you hear me!” Then she yelled “He’s non-responsive! Code Blue!” In an instant 15 people were crammed into his small room clustered around him and the flight crew ran in. I dropped my bags, went into an empty room across from his, fell to my knees in the dark and begged my Father in Heaven not to take him yet. I came out, found Linda, and a hospital chaplain who had appeared out of nowhere took Linda out since she couldn’t witness what was happening. I had to stay.

An angel of a nurse whose badge said “Patient Care Relations” stayed with me just outside Kevin’s room and explained everything that was going on in soft, even tones. He is being intubated. They are sedating him to put the breathing tube down his throat because he is fighting it. The Dr putting the tube in is an anesthesiologist. The lady in the flight crew uniform is also an ICU nurse and very good. That nurse is writing everything down that is happening. That is an EKG machine in case they have to shock him. I watched and listened to it all, not believing any of it was real.

The activity lasted about 45 minutes. Kevin’s Dad, Dennis, had been called by Linda to come in. Dr Hanak told us that the next 2-3 hours were very critical, touch-n-go. The cardiologist said his heart was secondary to his condition; no arrhythmia to be concerned with and his heart is healthy, he is just sick and his body is under stress. The surgeon said these kinds of things happen to sick people who are operated on. 

Dennis and I stayed the night in a conference room, he in a chair and I on the couch. I eventually fell asleep, surprisingly, and got a few hours of rest, I don’t think Dennis slept at all. I woke up around 5:30 and realized no one had bothered us during the night with any news which must be a positive sign. Dennis and I got breakfast in the hospital cafeteria and went to see Kevin. He was stable though his body shook with every breath forced on him by the machine. He had been anemic and was transfused. He was already off the blood pressure medicine which was a good sign.

Saturday Kevin continued to be sedated and not much happened. He was put on 48-hour dialysis that runs at half the normal rate. He put on 10 pounds of fluid overnight from all the medications and the dialysis would take it off, and this way was much easier for his body. As I thought of scheduling someone to take the girls for the night, I realized “Hey, I can stay with them!” I had not slept at home for over a week. My bed felt extraordinarily wonderful.

Sunday morning I got to the hospital around 10:00am after getting the girls ready for church and dropping them off with another family that would get them there. Linda was with him already and said that he had started writing to communicate. He wrote:

"wife" to ask for me and

"Crystal after church or before" when Linda said I was going to church. To me this was a huge improvement; even though he was sedated, he was actively thinking, planning ahead, and making inquiries.

Some of my favorites:

 

"come here" when I told him I was going to church. Yes, I would come back here.

"I need you" when I asked if it was all right if I could leave, and

"heart U" when I said "I love you".