Stuff from the past week or so... in B flat

So... It's me this time. My phantom ghostwriter is busy bee right now, but make no mistake she IS the queen bee around here. Anyhow, the kidney doctors took me off of dialysis a week ago, and they took my dialysis port out on Wednesday. I am officially tube free. I still have some issues with my leg and hip muscles, but I'm getting stronger every day. I wobble quite a bit when I walk, and the muscle pain gets to me every now and then, but I'm here to tell you that I wouldn't even be able to sit here and write to you all if it weren't for a series of truly miraculous events. From the expert care of the doctors and nurses to the prayers and well wishes from all of you and even some wondrous (if not in some ways frightening to behold) intervention by God himself, I can truly say that I am very much blessed to be alive and well today.

The kidney doctors and dialysis nurses have my utmost respect and heartfelt thanks. They did everything they could to make me comfortable and informed despite my fears and confusion at first. They told me at first that it might take 3-4 months for my kidneys to regain function; God did it in 6 weeks. How's that for awesome?

The rehab doctors wanted to keep me in the hospital for a couple of weeks to work on my legs, but I had tossed my walker aside on the third day that I left the hospital. I've walked all over Wal-Mart, Target, K-Mart, Winn Dixie, the Commissary on base, and even the Silver Sands Outlet Mall. Yeah it hurts, but I can do it with His help. How's that for awesome?

I had to go digging for this verse because I'll admit that I'm no bible scholar, but it tugged at the back of my mind from having heard it once or twice before:

I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. Psalm 139:14 NIV

Now, many of you know that Kristy played a huge role in reeling me back in for Christ. She would drag me in to church every Sunday after we got married, and we eventually started going to a Sunday school class that focused on young married couples and relationship studies. I'm not ashamed to say that the practical results that I was able to see in our day to day lives inside of our marriage relationship played another huge role in my decision to come back to church instead of just being dragged along. I also had some miraculous examples staring me in the face to let me know that God is out there looking out for us... One of them is my Grandpa, who I often tell people is a walking example of God's miraculous power. I've told all kinds of people how Gramps bounced back from cancer 3 times. I mean he either has to be the toughest man on the face of the Earth (which might also be true by the way) or all those prayers must have gone straight to the great physician himself.

Anyhow, now I have my own miracle story: not just my current healthy state, mind you, but also something very awesome that happened to me while I was in the ICU. You see, I was pretty much trapped in my bed in a room with the same four walls for 16 days straight, and for most of this time I was on a pain medicine that was 5 times more potent than morphine... It just hurt THAT much. Unfortunately, the medicine would sometimes wear off before the nurses could give me more, and I would spend some hours in a great deal of pain.

One night it was very late and this very thing had happened. I couldn't have more meds, but I also couldn't fall back asleep. The inflating cuffs on my legs would go off every couple of seconds, but other than that I couldn't really move my legs on my own. I couldn't really do anything but sit there and cry silently in the dark without letting anyone know I was doing it. Anyhow, somewhere in the middle of this I felt a pair of hands reach in and massage my thighs where the pain was most intense. The thing is I was alone in the room, but I immediately felt better and fell asleep within minutes. I didn't really dwell on this event until after I was out of the ICU, but I find it very interesting that of all the things I CAN'T remember from my time there that this is the ONE thing that I remember so VIVIDLY that I can't get it out of my mind.

So I took it as a cue that I should let everyone know that God himself blessed me with a miracle. It was very humbling, yet the whole idea also strengthens my belief in Him. I would have never written something like this down or even told someone else before all this happened to me, but I can't keep something like this a secret. I learned a very valuable lesson in the midst of my suffering: there is no one or nothing that is either too big or too small to be above or below God's notice and His infinite Grace. I mean if He can reach down and put me at peace in the midst of all the things in this world that need His attention then I am absolutely convinced that He will do the same for anyone else in this world.

So with that, I want to thank all of you who prayed for me and sent well wishes. They really made an impact, and I hope that each and every one of your lives are filled with the Lord's blessings.

TGIF

It's been a long week. We started Monday morning with Ben having pink-eye, but thankfully we got into the doctor early and then Dad was able to watch both Paul and Ben for me so I could go back to work. My leave balance was getting really close to zero, so I needed to get to work! On that note, Paul is doing really well with leave. Working for the government has its perks, one of which is a leave donation program. If you have a valid medical need and have exhausted all of your own accrued leave, you can request donated leave from people. Everyone has been so generous and he has had over 11 weeks of leave donated to him. He's used 5 weeks of that already, so he could take 6 more weeks off, but we expect he'll be giving some of that leave back. :)



We got back into our normal Tuesday craziness. Paul went back to guitar lessons and had a really good lesson. Joshua helped him realize the creative outlet he has through the guitar and encouraged him to let all the emotion from this ordeal out. He was working on a song and maybe someday he'll share it with the world. Suzie and I met with the Girl Scouts. It was nice to see them; we'd cancelled the last two meetings because it was just too busy with Paul in the hospital. They are trying to complete the requirements for the Silver Award this year, and now we're having to cram a little more to get it all done, but I think they can do it.



Paul's kidneys are performing amazingly well and we got some good news on Wednesday. They decided to give Paul the weekend off (i.e. no dialysis Friday or Monday) and to move his appointment with the nephrologist up to Monday. We finally got his blood results today and they are looking really good. His creatinine (the kidney function indicator) is in normal ranges (1.1, normal is 0.6-1.3) and his CK (muscle-rhabdo indicator) is 267 (normal 35-232) - this is the number that was 111,000 at one point. They've been watching his BUN which is still slightly high (21 vs. 18), but his BUN/creatinine ratio is normal (19, normal is 12-20). I'm not sure what those numbers mean, but they seem ok to me. His magnesium is a little low and his blood counts are still out of whack, but I think a lot of that is because of the dialysis. Overall, his potassium, CO2, glucose, calcium, phosphorus, and some other things I don't know what they are, are all in the normal ranges. This is all really good. Paul has to collect his urine for 24 hours this weekend, then turn that in and have blood drawn Monday morning in preparation for Monday afternoon's appointment. We are really hoping and expecting that the result of that will be that the doctor will discontinue the dialysis treatment. Please pray that's the case!

Even though Wednesday was a really busy day and Paul was whooped, we got to enjoy a nice evening with Suzie, Ashley and Ryan, and Janet. Ashley and Ryan are visiting while Grant is doing some training. It was so nice to see them. We had dinner at Tradewinds - yum! - and then sat around chatting until way past my bedtime! Ryan is such a good baby, I think I only heard one fuss, if you could even call it that. He is getting so big and looks so much like his daddy. We have got to figure out a job for Grant closer to the southeast, we miss having them around more.

Paul's been having a good time with my Dad this week. I think they are both enjoying having a buddy to hang out with. They have been running all over town "exercising" (i.e. shopping...). They've been to Sears, Lowes, Sam's, Target, the motorcycle shop, the voting precinct, the gun store, Magnolia Grill, Petland... Not all in one day, of course, but they've been busy! Paul is really sore every day and his muscles are in pain almost all the time. He's only allowed to take tylenol, which has never been very effective for him, but he's dealing with it. He wanted me to tell you all that he is doing just fine!



We took advantage of the time not in dialysis today and went to the base pool. It's not heated, but they put a dome over it in the winter so it is nice and warm in there and the water isn't too bad. Ben came as well and we enjoyed some time in the water. Paul still has the dialysis catheter in his shoulder, so he wasn't able to submerge himself, but he was able to walk around and stretch his legs without the burden of his own weight. Ben took awhile to remember that the pool is fun, but once he warmed up to it, he had a blast. It was definitely a good idea to go to the pool! Now we just need to get a hot tub so Paul can lounge in there whenever he wants...



While I know everyone cares about Paul and his status, I know some of you out there are in Ben withdrawal. He is doing wonderfully and is getting bigger, stronger, faster, and chattier every day. He is finally coming around to not being so clingy and attached to me. I can leave the room now and he'll play happily for awhile on his own, and we've worked it out to where he won't pitch a fit when I leave him at daycare - he just needs to walk in the room by himself... He seems to miss his Grandpa a bit. Some days he's just really crabby, but if we get to see Grandpa, he's happy instantly. Such a Grandpa's boy! He's getting really fast, practically running all over now. He also likes to dance and spin around lately. When I picked him up today, he ran to me and then danced around in front of me, stomping his feet for a little bit. So cute! He's been trying to climb on everything the past couple days. He almost made it on top of the table yesterday and almost climbed out of the tub last night. He's getting taller too and he can now reach things on top of the table and the low counters in our bathrooms. Time to start baby-proofing a little higher and a little farther back on the counters... He's also chatting up a storm. He puts lots of different syllables and sounds together. We have no idea what most of the sounds mean, but he sure does enjoy it. Here's a cute picture of him playing in Daddy's shoes tonight. This is a new thing this week. :)


We're looking forward to an uneventful weekend. Maybe I'll get to sleep in tomorrow... Please pray that Paul's muscles continue to improve, his pain gets better, his bloodwork looks good on Monday and he's officially off dialysis on Monday (and gets the dialysis catheter removed!).

Happy Pi Day!

We've had a nice weekend. Paul's fever never got worse on Friday night, so that was a huge relief. Who knows what caused it to be high at dialysis, but it went down on its own. It was a nice peaceful day at home on Saturday - we haven't had one of those in a long time! Last Saturday, I got Paul a sausage, egg, and cheese biscuit from McDonald's, his favorite. He was only able to eat 2 bites. So this Saturday, he decided he needed to try again. I encouraged him to take a walk up there to get it (it's about 3 blocks away). He made it up there, but was REALLY tired before we even got there. He was able to eat the entire biscuit and have some OJ, then Ben and I ran home to get the car to bring him home. He overdid it, so we rested the rest of the day, but I was so proud of him for taking on the challenge. Later in the afternoon, we had a really nice visit with some friends and enjoyed a yummy dinner compliments of some more friends. We feel so blessed to have such good friends and an awesome Sunday School family!

Of course, he had to top it today. We went through the normal Sunday morning craziness - church, then brunch with M&D, then back to Sunday School. It was great for Paul to get back and see everyone that have been praying for him so much the last month. We felt like it was meant to be that we be there today because we got the best non-handicap parking spaces, even when the rest of the parking lot was full. :) After Sunday School, Mom told us to stay away from their place because Ben and Dad were napping on the couch. We ventured over to G&G's for a visit, but they weren't home from church yet so we went to Kmart. He walked all the way around the store, and we got Ben an Easter basket for his first Easter egg hunt in a couple weeks. If that wasn't enough, he decided he wanted go out to dinner, Red Lobster - yummy! And of course we had to stop at Joann's first so he got lots of walking in there too. It has definitely been a full day that would make most people exhausted! Needless to say, he went to bed early tonight.

Paul has another big week of dialysis. We have an appointment with the nephrologist on the 23rd to discuss his bloodwork and see where to go from there. We're hoping that the doc says no more dialysis. His numbers looked really good last Monday and we are expecting them to be even better tomorrow and perfect by the 23rd. :)

Have a great week everyone!

Fish!

Here's a picture of Paul at the dialysis clinic. The mural is really quite remarkable - this is only a section of it. Paul has been doing really well. I think he overdid it a bit today by tackling the commissary after dialysis, so he's already gone to bed.

Paul had a little bit of a fever (99.5) after dialysis today which concerns us all. His dialysis catheter is a direct line into his bloodstream. An infection there would be an infection directly into his bloodstream. NOT GOOD! They let him go home to monitor it with instructions to go to the ER if it goes over 101°F. We're praying we don't get there!

We're looking forward to some chill time at home tomorrow, maybe with some visits with friends, and big plans to tackle the Sunday morning craziness back at church. :)

Tube Free!

The graft took and his urethra looks great so the doctor took both of Paul's catheters out today. Hooray!!!! It's so nice to have that part of this ordeal over with. Thank you for the prayers; they were definitely answered today!

Paul had dialysis today in the outpatient clinic. It's a really nice facility. I'd say they have at least 60 chairs & machines and they were pretty much all full, all day. I never realized there were that many people that get dialysis. They have a huge tropical ocean mural painted around the room, so Paul fit in quite nicely with his fish quilt. We'll have to be sure to get a picture of it on Wednesday. Paul walked himself in and out of there, then into Dr. Thomas' office. By the time we were done getting the catheters out, he needed the walker. That's understandable though because he didn't get much lunch in the dialysis clinic and dialysis is pretty taxing on your body, so he was already weak.

The nurses today said that they only check bloodwork once a month in the clinic. We told Dr. Thomas this and he's going to call over there tomorrow. He wants them checking Paul's blood once or twice a week because we don't think he'll be on dialysis in a month. Just given all the other signs (appetite, fluid retention, urine output), I think his kidneys are just about recovered. We'll have to see what the bloodwork shows.

Both of my boys ate really well tonight. Paul had 4 pieces of pizza. That's the most he's eaten in a month... I think his appetite is coming back because he had second helpings of soup on Saturday and did pretty well on dinner last night too. Ben had 5 chicken nuggets, and he wanted more after that. Crazy growing boy. :) I'm really getting used to having Janet around. She picked up Ben from school, vacuumed, made dinner, did dishes, cleaned up the house... She's the best!

The rest of the week holds more exercising and walking to get stronger and two more dialysis treatments. I'm going back to work tomorrow because I am just about out of leave. eek!

Doing well

Paul is doing great - I gotta find a better superlative - amazing, stupendous, outstanding, tremendous... We went yesterday to the grocery store for Paul to get some walking exercise with the intention of using the motorized wheelchair when Paul got tired. He got tired, but he powered on through and walked the whole way. Awesome!! After the grocery store, we went to my folks to hang out for a little while and to get Ben, then we were on our way home to our own house with our complete family (minus dogs, we'll get them tomorrow, hopefully). Janet moved in last night to help me with Ben and with Paul - it's been great having her here.

Today, M&D, Theri, Sam, Suzie, and I walked/ran the Seaside 5K. Ben came with while Paul and Janet hung out at home. We had intended to make an appearance at sunday school, but we were late getting back from the race. Paul still managed to get through the Sunday craziness with brunch and dinner at my parents and a visit with Paul's grandparents in between. He was able to get around most of the day without the walker. He's moving really slow, but is able to get up and down out of chairs and walk around without it.

Tomorrow is his first outpatient dialysis. It seems like the outpatient people are a bit more organized and hopefully will keep to a better schedule. He's in there from 11:30-3:30 MWF. We have an appointment after dialysis with Dr. Thomas to check out the graft and tubes. It will be a long day, but hopefully we'll have a great outcome.

I am so proud of how Paul is doing and believe he will be completely unassisted really soon! Please pray for his continued strength and that we come home tube-free tomorrow!

PICC Line

Paul got his PICC line out just before we left the hospital.  It was so long he wanted a picture.  :)

Home Sweet Home

We are finally home!! Dialysis took longer than expected, as always. No problems, they were just late putting him on and had to slow down a little to give him 2 units of blood because his blood count was a little low. This is apparently fairly normal with kidney failure because the kidneys have some affect on how your body makes new blood cells. I'll have to do some more research on that, someday...

Dr. Thomas came by to see us off and give us instructions. Paul has lots of meds to continue to help with his kidneys and we were instructed to make sure he gets lots of exercise. We have an appointment with him on Monday to take out the Foley catheter and see how the graft took - the whole reason this all started in the first place. If the urethra is open, as it should be, and he can void well, he'll take the suprapubic catheter out as well and Paul will be tube-free. :)

We got home too late tonight to deal with getting Paul settled in and getting Ben in bed, so Ben is having another sleepover with G&G, Aunt Theri and Sam. We'll get him tomorrow and then we'll be one family under one roof again - yay!

Please pray this weekend that Paul's graft will have taken and healed well so he can be done with the tubes. It will be a huge relief to have that part of this ordeal over with!!

Here's to a quiet night at home. Good night.

Going Home!!!

I just got off the phone with Jennifer, the case worker.  She said Dr. Decotis is letting Paul go home today!!!!  He’s talking now with Dr. Thomas and the nephrologist to get orders for dialysis.  Jennifer is talking to insurance to see if there is any home PT care available.  They will skip PT today, so once he’s done with dialysis, I can pick him up and take him HOME!

Hurray!!!!

 

 

Aaahhhhhhhh!!!

Paul got a shower tonight. There's nothing like sitting in a hot shower to make you feel better. A sponge bath can only go so far to getting you clean, especially after 3 weeks! We waited all afternoon for the nurse to be available to walk us to the shower, but we eventually got there and he felt much better after the shower!

He did great in his PT and OT today. He got dressed this morning, no more hospital gown. :) Part of his Occupational Therapy was to play Uno with some other patients, standing up. I guess they all had to stand until someone won. Paul said he was strategizing the whole time to get someone to win - he didn't care if it was him, he just wanted to sit!! His PT consisted of more walking, exercises, and steps. He walked several laps, did 140ft WITHOUT THE WALKER!, and walked up and down some steps. When I walked in this afternoon, his first words to me were "I can get into our house!" He was very happy and relieved that he had passed that hurdle.

I talked to the nephrologist and the urologist today. They both said that as far as they're concerned, he can go home. It's all up to the rehab doctor now on whether he thinks he can go home. He'll of course still need dialysis for awhile and we'll probably have to get lab work done daily, but we can handle that as outpatient. I impressed upon Dr. Thomas that we can handle Paul at home; he's doing well with walking, he can get into and around our house, and that he would probably eat better at home and being home would raise his spirits tremendously. He is going to talk to the rehab guy in the morning and let him know all that. I've also told this to the social worker and I will call her in the morning to be sure she remembers! The PT nurse, OT nurse, regular nurse, social worker, and rehab doctor will have a meeting tomorrow to discuss Paul's progress and whether they think he needs to stay (and therefore, request more time from insurance) and I want to make sure Jennifer advocates for us and is pushing for us to go home. Hopefully they'll let him... He's scheduled for dialysis tomorrow after rehab, so I can see them trying to keep him until Saturday, but I'm going to see if he can't be discharged in the afternoon, and then do dialysis as an outpatient so he can come home afterwards. We'll see...

So, we got the story on Paul's roommate today. He went in for surgery on 2 Feb. He had a "hammer toe" where he had a bone spur in the joint of his big toe. They were just going to go in, take out the bone spur, sew him up and he'd be good to go home. They got in there and learned it was too infected so they amputated the toe. I hadn't thought much of it, but as he was telling us this I remembered from high school anatomy that your toes are very important in keeping your balance; they kind of anchor your feet and keep you from going too far forward. Sure enough, when he got up after the anesthesia wore off, he lost his balance and fell, breaking his collar bone and spraining his wrist. He also threw off his inner ear equilibrium and they say he'll probably have to deal with vertigo for the rest of his life. blah. He's still in rehab now to learn to walk with messed up equilibrium and with a missing toe. He said he should've thought better to schedule surgery for Groundhog Day...

Ok, so I totally made that up for a friend of ours. I don't know what's up with Paul's roommate, but he's a very nice man.

Double D - quit being a wuss and go to the doctor to get your toe fixed or we're going to start calling you Wussley!!!

Determined to come home

Paul was definitely determined to show them what he could do today. He walked a lap and a half around the rehab unit today, 600 ft! And he did some leg exercises in the gym. After all that, he still needed help getting his legs back up into bed, but he proved he could do that later in the day. :)

The rehab doctor came by before the PT guy did his evaluation this afternoon. He said he thought Paul would be there about 3 weeks! HA! We both looked at him like he was smokin something. We told him what all he has been able to do, and he reduced his estimate to 1 week. I'm still holding out for Friday. We had a chat with Paul's assigned social worker today and let it be known that we want him home sooner rather than later and that we can handle him at home, even now. She was going to talk to the docs, see how today's eval went and see what she can do. I just don't see anything holding Paul in the hospital anymore; Dr. Thomas said he needed to walk to get out of there and he's doing that, so we asked for more clarification on our exit criteria... He needs support from a walker and could probably walk with just a cane, but he can use a walker/cane at home just as easily as he can at the hospital. We'll see how tomorrow's rehab goes, talk to the social worker and the doctor, and see about getting out of there Friday or Saturday. I'm tempted to pull him out "against medical advice" if need be, but I hope they realize that he doesn't need to be there and let him out. I feel like they want to hold him for a week because that's the average stay in rehab, but then again the average age of a rehab patient is 70 - not 29!

Ok, I'm done ranting. We learned that rehab patients can get hall passes and are allowed to go outside. So as soon as we could, we loaded Paul up in a wheelchair, got a drink from the cafeteria and headed outside for awhile. It was really great for Paul to get out and get some fresh air and sunshine!!! Hopefully we can have a little visit with Ben out there tomorrow in a not-so-intimidating atmosphere.

Please say a prayer for Paul's strength and for the doctors wisdom and common sense to let him come home!!!!

Bring it on, rehab!

Paul is now all settled into his rehab room.  He'll have an initial eval today and has been told several times that he has to work hard and show progress before Friday or he'll get kicked out to a nursing home.  How's that for motivation!?!?

He's now in room 427b - yep, no more private rooms...  Visitors are allowed after 3pm, but he'll have dialysis in the evenings on MWF, so he may not be available for visits until after 7pm on those days, depending on the unpredictable dialysis schedule.

His direct phone line is (850) 315-7800 ext 4272 if you want to call and cheer him on. 

Moving on up, again!

Paul is scheduled to move up to the rehab unit in the morning. Hooray! He did about the same with things today. He walked around the unit today then sat up in the chair for an hour. He's been eating a bit better, but he has to take meds for his kidneys (4 horse-pills, every 4 hours) before food make him nauseous, so then he gets nausea medicine... It's been an interesting challenge to get the sequence of meds right so he can still eat without vomiting...

Dr. Thomas took away his Percocet today. He has always been sensitive to Percocet; it works great on the pain, but it puts him to sleep pretty quickly. He'll only have Tylenol now since his level of pain has decreased and we need him to be conscious for more of the day.

The move to rehab should be good tomorrow. He'll have 3 hrs of dedicated time every day where they'll do Physical Therapy and Occupational Therapy with him. I'm not sure yet what all that will involve, but hopefully it will give him a good start to getting out of there. Our insurance has only approved rehab for 3 days, so I expect he'll get sent home Friday or Saturday. They said they will request more time if he needs it, but I'm hopeful that he won't need more than 3 days. He's already getting around well enough to handle himself with the help of a walker, we just need to make sure he can get in and out of the car and up the 2 1/2 steps to our front door. :)

Visiting hours will get squirrely again. I think they are only 4:30-9:30pm on weekdays. Also, he's on a MWF dialysis schedule and with PT in the mornings, he'll be going to dialysis in the evenings. So, visiting may be difficult tomorrow and Friday. I'll post tomorrow once we know the schedule a little better and when we know his room number in case anyone wants to stop by.

Again, thanks for all the prayers. We are overwhelmed by them all; we even have strangers (albeit from the hospital chaplain's office, but strangers nonetheless...) stopping by to pray with Paul. Keep 'em coming, we can see the light at the end of the tunnel!!!

Update

Paul's procedure went well. They put the catheter back in right next to where the old one was. After an uneventful recovery, they took him back up for 4 hours of dialysis, just before 8pm. Hopefully he can get some rest and maybe feel like eating something during dialysis and then get some good sleep afterwards.

Dr. Thomas' plan is still to get Paul up to rehab tomorrow. We'll have to see how recovery goes from tonights procedure, but we are all on the same wavelength with getting him to rehab as quickly and safely as possible. If he doesn't get up there tomorrow, we're still making good progress on our own. He walked almost all the way around the PCU floor (maybe 100 yds?). He only had to stop because the nurses were concerned about his heartrate and made him sit to rest about 15 ft short of his room. We'll try to go slower tomorrow and keep the heartrate down - I think Paul just feels like the faster he goes, the faster he can sit, and the faster the pain will get better. But if he takes it slow, maybe he can do more to prolong the workout and get more out of it.

I got home in time to give Ben his bottle and cuddle a bit tonight. He makes it all better at the end of the day. Once Paul is home, I think he'll be more motivated to get stronger faster just because he'll get to see that beautiful face everyday. :)

Again...

They just took Paul back to get his dialysis catheter put in,
again... In case you missed it, his "permanent" one came out on
Friday. I think it got caught up on something or someone when he was
getting out of bed. It's been a long day of waiting for this
procedure. Paul hasn't had anything to eat or drink since midnight,
besides a little water with meds. ugh. After this, he'll go straight
to dialysis for a 4 hr treatment where he's hopefully feeling well
enough to try to eat something. I know he's ready to be done with
this day. Hopefully tomorrow is better and hopefully we get moved up
to rehab tomorrow. More later...

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