August 24, 2009

2am...can't sleep...wonder why...about a gabillion reasons. Update since we've been home, Scott woke up at 5am Saturday morning with the machine they sent him home with the assist in a speedy recovery from his infection alarming. Here's the deal, no one at the hospital explained to us how to use the machine. The discharge burse had no idea but explained that someone from the company that manufactures the machine would be calling on Saturday. We're thinking "okay, what could go wrong between now and then." At 5am with the alarm going off we realized that, yes in fact things can go wrong! After a good 15 minutes we determined how to turn the alarm off - but couldn't figure out how to determine why it was alarming in the first place. Had to call the manufacturer. The person walked us through some basic steps and apparently there was a leak. Well I would say so, because we soon discovered the reason (I'm pretty sure on this, but it was very early after a very long week) that the machine was never turned on by the nurse, which is not a good thing. So the tech tells us to tape the leak - thinking it's the machine leaking. Problem solved until the next alarm at 8:30am. Had to call again for help. Called again and started a series of calls that took up most of the morning around Scott and I trying to get just a bit more sleep. The conclusion of the calls resulted in them telling us they would send someone out Sunday to review everything. Well how in the heck is that going to help things if it wasn't turned on for 9 hours when we left the hospital...the damage is probably done at this point! Okay, whatever, they'renot going to be here so fine, we'll just do until they get here...in 24 hours. So the nurse calledabout 11am Sunday to find out when to come by. I asked if she knew about the issues we had with the machine and she says that yes the information was passed onto her.She showed up around 5pm goes through all the presentation stuff...clearly covering the do's and don'ts of the whole process with the nurses and them about 7pm she finally gets to removing the machine to swap everything out with "fresh" items (Note - I don't want to gross anyone out so I trying to stick with safer descriptives). She mentioned several times that the area the machine is treating should look a certain way and that if it did not then they would have to have their head nurse come to the house to determine if the machine could coninue to be used. Sure enough that's is exactly, exactly what happened. I swear I couldn't make this up if I were trying any harder. The reason this is such a big deal is Scott is going to have to wait for this to heal before he get's back to transplant surgery. She explained that with the machine it's a minimum of 4 weeks. So, another setback, because without the machine my best guess is add two more weeks or even four more weeks...that's 2 months. Scott and I were just pretty much numb when she left. He's back to dialysis tonigh and I'm here...not able to turn my head off. ARGH!!!!!

August 22, 2009

Yesterday Scott got to come home from the hospital - yea! Having spent the last three years of him being in and out of the hospital I tend to get a bit anxious when they're ready to release him. One of the things that is GREAT about the hospital is that if there is something going on - they know how to deal with it (most of the time). Once he comes home he's usually medicated in some form or fashion which means I end up having to figure things out - hense my anxiety. This time he was bringing somesort of machine they have attached to him from one of his surgeries this week. My first thoughts are I don't wanna!!! So when the nurse came in lst night and told us that someone would be coming to our house to take care of it for the duration I could have kissed her. This week has been a real stresser for both Scott and I. He's got the stress of being sick and stuck in the hospital and I've got the stress f being back and forth between the hospital and home. There are things in both places that need my attention. It would be ever so nice if when someone had to be admitted to the hospital the rest of life was able to suspend itself in time...no such luck. Anyway, we've survived another (what I hope to be ) minor setback - whew. He should recover from the three proceedures just fine over the next few weeks. Being that we were both so taxed neither of us have followed up with the Transplant team to find out if the stress test results were good - nd they've not reached out to us since I visited on Tuesday. We plan to try and contact them on Monday I would assume they're going to need to review all the records from Scott's trip their this past week. One of the things Scott and I tried to do while at the hospital this week was to speak with a representive from Chaplin Services. We are both so emotionally exhaulsted from everything and having someone to speak to about it all sounded like it would be helpful. I would like to think in the next few days or weeks that our individual conversations with him will bring some relief - but I think at the moment there are many, many layers to our onions. It may take a bit more time than a half hour to remove some of the scars left by all the punches Scott and I have received over the past three years - and really for Scott going back to when he was first diagnosed at 14 with the diabetes. Nonetheless for that half hours some doors were opened that had been tighly closed for quite some time. Happy weekend and thx to everyone for your continued support.

August 21, 2009

Scott had a good day yesterday. The low grade fever he had on Wednesday was gone so they were able to put in his new dialysis port and remove the temporary one. Because he was scheduled for that though he missed breakfast AND lunch. So he was grumpy from the start and just spiralled from there. He seems to be feeling a little better today. It was decided he might do well with a visit from Chaplin Services, so they are scheduled to come by this afternoon. I really hope he's able to express some of the frustration, anger and fears he's been carring for so long now. We don't have any news back still on the type of infection it is nor have we had any further information from the Transplant Team about his stress test results. Currently I'm not feeling up for calling them (I am emotionally and phsically tapped right now) and I am assuming the transplant surgeon will need to review all the records from this weeks hosptial stay before we get any further news.

August 19, 2009

Scott called at 7:45 this morning telling me they were taking him off for surgery in his arm, to put in the by-pass on his fistula. For the past two das Scott and I have been explaining to the drs that Scott doesn't want this surgery since he's so close to tranplant. He feels it's unnecessary and invasive (it's also permanant). So they weren't supposed to be doing this. He was paniced so I asked hime to buzz for his nurse. After staying on the phone with him a few minutes and both of us falling back asleep I just told him to call me back when she came in. When I woke up an hour later I called again because I'd not heard back from him. We paged the nurse again and she came within a few minutes. She explained that someone from radiology was the room and she needed to speak with them and asked to call me back. I told her sure - but that he couldn't go anywhere until she and I spoke. When she called back she explained to me that they wanted to take Scott to put in his "perma-cath", his new dialysis port. So the freenzy of Scott being paniced was just simply him misunderstanding what they told him. Now here's the thing. For three years, being in and out of the hospital and various outpatient surguries I can't begin to express the importance of having someone with you who is capable of understanding. Scott's had and infection attacking his system for days now, two surgeries in the last 48 hours and has been on a pletera of medications that alter his thinking. The medical staff has to continue moving forward with treatment(s) and often can't wait for a patient's caregiver (or whoever) to be there. This is why I try and stay at the hospital for as long as possible when I am there. This has become my full time job, taking care of Scott and what Scott has to deal with. Today I'm home. I would like to say I'm sitting around getting some rest, no so. Because Scott's been in the hopital since Friday and I've been with him nothing here at home has been tended to. I'm having to move forward with the list of things Mom and I started before she left last Saturday, all of which has to do with Scott's medical. The list had about 20 things on it. I'm having to deal with doctors offices calling wanting payment - three of which are at the point of refusing service. The house is a mess, and to top ift off my doggies hate me right now. They've been left alone all day and when I do get home I'm way to tired to take them to the dog park or on a walk. Mind you they have a fenced in back yard to romp in but they are pack animals and want someone around. This has been going on for three years now with Scott's kidney failure and the other medical issues and complications. The first two years I was working full time. I tried to go to freelance and have picked up some work this year. Because we are so close to transplant though I can't commit to a gig where if we get the call I'd have to cancel. If I opted not to cancel I wouldn't be able to give 100% to my job. I am emotionally and physically fatigued. Enough ranting from me for the time being. Back to the to-do list.

August 18, 2009

Scott got back to the room around lunchtime and was feeling pretty good - amazing how a little anesthisia can do that to you. He had lunch, called his parents and then watched some TV. The cultures to determine what type of infection it is are still not solid. Hopefully we'll know something more on that in the next couple of days. On the way to my car I stopped in at the transplant center to touch base with our transplant coordinator. As Scott's transplant status changes so do his coordinators. He's had 3 now and until today I'd only met one. Anyway I chatted with her a few minutes and I'm feeling much better having taken the time to meet and talk with her. She said the test results will be discussed tomorrow at "conference" and she'll let us know as soon as she knows something - so any addtional, extra or multiple prayers are most welcoming. I would imagine that he's probably starting to feel some pain now as the meds wear off and encouraged him to catch up on some rest tonight. Thx.

August 18, 2009

I spoke with Scott late last night to see how the rest of his day went after I left the hospital. It was a busy day. He had a new (temporary) port put in so he can get dialysis and got back to the room just after lunch time. He got about half of his lunch finished before they came to take him down for "mapping". I've not asked for clarification on exactly what mapping is, but we think it has to do with the drs scanning his body to determine where the permanant port can be placed once the the infection has been irradicated. I know the results of the blood cultures drawn at dialysis last week have been faxed over to the hospital, but have yet to ask anyone what the results were. He was very groggy when we talked last night so I asked him to call his nurse so I could find out what his schedule was for today. Oddly we did not see another dr yesterday after about 10:00am. His nurse told me he was scheduled for 10:30am to go and get the arm treated. With the nurse and Scott not being able to tell me anything more about today I decided best to try and arrive for dr rounds, between 6:30 and 7:30am. At 6:45 am the nurse came in to tell him transport was on the way up to get him for the surgery. Almost 4 hours early...good thing I got here when I did. Since the drs had not been here for rounds I asked the nurse to call someone to come up. It may seem like a big stink Scott and I are making about seeing the drs, however over this past weekend they wanted to move in a direction that Scott did not want too and we've not seem any of these drs since the weekend. A little bit scary. So the one dr I saw yesterday morning was the same one that came up to confim that we were all on the same page - we were - whew! They took him off for the surgery and while I've been typing this the surgeon came in to tell me that they're done and Scott is doing fine. They will probably keep him down there for a few hours to keep an eye on him.

August 17, 2009

My heart is heavy this evening.
Our family got some bad news this past week (for privacy reasons I prefer not to go into details). We've stayed focused on Scott's needs, but we're going to have to allow room to deal with this as well.
Heavy, heavy heart.

August 17, 2009

We spoke with the main dr late yesterday and he understood we needed a bit more explanation on what Scott's choices are with a new dialysis site. They want to do dialysis before they try and treat the infection. So I was back to the hospital this morning at 6am to be here for the dr rounds. At 7:15 a tranport person came to pick Scott up, before any of the drs showed up...so a bit a frustration with that. They are putting in a temp dialysis port for his duration here at the hospital. I've also, in piecmealing bits of info, realized (and confirmed with the one dr I've seen today) that Scott will be here forthe duration of the infection treatment...about two weeks. Argh. I fianlly spoke with our transplant coordinator this morning and she was passing on the info to the one Transplant dr that is inhouse today. Scott's transplant surgeon is not here today. Lastly (for now anyway) I've put in a call to Scott's Nephrologists asking that once the results from the blood cultures that were drawn at dialysis last Thursday are sent to them that they need to then fax them over here so that Scott's team here can review. These results will determine what type of infection it is that Scott actually has. Cat nap time for me.

August 16, 2009

So I ended up having to come to the hospital after a somewhat frantic phone call from Scott just before lunchtime. Apparently the whole team of drs came in to see Scott at the same time , about 6 of them. Working as a team to treat Scott, based on what he's in the hospital for. Of course he became overwhelmed and for him that usually turns into anger - anger usually stems from fear. The nurse just paged one of the drs to come back and talk with us now that he's had time to process everything and I'm here so that we can let them know what we want to do, which is a bit different from what they want to do. In the mean time we don't really want too many decisions made without someone from the transplant team staying in the loop. At this point, we've not yet seen anyone from the transplant team because it's the weekend.

August 16, 2009

The dr I ran into in the elevator yesterday finally made it to Scott's room around 7:15pm. I decided that I would let the dr tell Scott everything - I didn't/couldn't deliver the crappy, potentially crushing news to Scott myself. Seems that Scott took it well, at least for the time that I was there. I left a few minutes after the dr came and went. The dr said today would be insert new cathider and dialysis day adn that Monday would be surgery day. I''ve not spoken with Scott this morning - I'm just waking up. After being there with him for the past two days and knowing I'll be there all day tomorrow I'm thinking I might not go today. This of course if the guilt of not being there doesn't overwhelm me. Also, when I'm not there I miss what the updates and info from the drs. So we'll see how our Sunday goes.

August 15, 2009

I just ran into one of Scott's drs in the elevator. The results of the ultrasound are not good. Scott's got blockage in his fistula so they are going to have to go in and correct it. The downside is that the fistual can't be salvaged. He's going to have to go back to a plastic port they'll attach to him that can't get wet. He had one for about 6 months before and they really stink. Damn, damn, damn!

Trisha Huggins Sisk Reply Post: keep on keeping on guys... thoughts & prayers are with you. - August 15 2009 at 8:50pm

August 15, 2009

So with my last post on Aug 13th we had another issue going on. That issue has landed Scott back in the hospital. Wednesday night he went to bed at 10:30pm and slept until 2pm the next afternoon. No biggie, we've had parents visiting and sometimes Scott just needs that much sleep. On Thursday afternoon, however, he was complaining that his left arm hurt - the arm he has his fistula in for dialysis. Upon closer inspection his fistla site was swollen and red...looked like a good solid infection was kicking in. We called dialysis and they said they would take a look at it when he came in for his Thursday nght dialysis. The dialysis team is usually pretty good about letting Scott know if something medical needs immediate attention. They drew bloodin order to run cultures to see what was going on. They prceeded with dialysis, just "poked" him lower in his arm and then on Friday morning gave him 50 cc's of Vancomiacin (sp?). When he got home from dialysis that morning he told me all that info and that they wanted him to get in to see the fistula surgeon that day...Same day appointment...with a surgeon...on a Friday...yeah sure, no problem. I didn't wake him up until I had spoken with the dialysis team directly to determine if a trip to the ER would to be necessary. When I woke him up later we decided it would be best. He told me he was worried that the infection might be MRSA. We also decided to come to Emory - so the records will stay in the system and the transplant team will have immediate access to them. We arrived at the ER at 6:30pm and over the next 6 hours eventually made it back to a room to see a doctor. Just as I had originally thought once the ER team started looking at it they told him that he wouldn't be going home. I left at 2am, he was still in the ER but was transferring to a hospital room. It was decided by a specialist that a surgery wouldn't be necessary. At some point this morning though , before I got back at 11am, it was decided that were going to need to do a surgery. They had prepped him but as the morning unfolded Emory ended up with 6 transplants so that ended up putting Scott off for today. I'm guessing, unless something else shifts, he'll have it first thing Monday morning. They've taken him to have an ultrasound and I thought I'd take a minute to post some updates for everyone. Oddly it's not a holiday weekend - Scott has a niche for landing in the hospital on holiday weekends.

Cathi Davis Reply Post: Jeez louise. I hope it's not bothering him too much! Thinking of you guys :) - August 15 at 5:28PM

August 13, 2009

At least it's not a "No" at this point.

August 13, 2009

Our transplant coordinator just called to let us know that the transplant surgeon wants to reveiw Scott's stress tests results with the dr that originally ordered both. So we'll be waiting to hear more early next week. I have to trust that this is ALL happening the way it's happening for a very good reason!

August 13, 2009

Our transplant coordinator called back yesterday to let us know the the surgeon *sic* worked. She had all the results in from the pulmonary stress test. The coordinator was meeting with the surgeon this morning to review all the results. We also found out yesterday that the pulmonary stress test Scott took is a risk assesment test. I'm letting Scott sleep in this morning because I think I'm stressing enough for the both of us right now waiting on the coordinator to call us and let us know what was determined.

August 11, 2009

We are still waiting on the pulmonary test results to be completed and turned over to the transplant team. The pulmonary group told us it would only take 24 hours to have everything posted for the transplant team. It's been 6 days nows...excluding weekends! Our transplant coordinator was going to (her words) "sic" the transplant surgeon on them to see if they could get the results finished up.

August 7, 2009 (III)

he had back in April/May. He had dialysis the night before the appointment and came home and went to sleep as he usually does. I woke him up to go to the appointment and he complained he was not feeling well. This is also usual after dialysis - so I pushed to the point we had a big fight - but got him out the door. Whe...n he got to Emory Midtown (that's where the Drs office is) he pulled up in front of the parking deck and just about passed out. Security came over - pulled him out of the car and took him around to the ER. Apparently dialysis had taken an extra kilogram of fluid off - the result of this is that the blood pressure goes dangerously low. He ended up missing the doctor's appointment and staying in the hospital overnigh for them to get his BP back to normal. The addtional hospital bill - big thanks to dialysis for the goof up - and never mind the stress and duress - were two things we really didn't need. Jumping ahead to July 29th dialysis session Scott woke up Monday morning to realize they had not taken all the fluid off that they discussed the previous evening. It's a joint effort between patient and the tech. So he had an addtional 3 kilos of fluid on him plus whatever he would put on prior to his return on the next Tuesday night. Normally no big deal...except tha...t before he returned to dialysis Scott was scheduled to take the Pulmonary Stress test and having an extra 3 to 6 kilos of fluid on him might in fact mess up the results of the test! ARGH!!!!! I spent Monday afternoon on the phone with his current clinic, his previous clinic as well as his nephrologists trying desperately to see if any of them could fit him in before his test on Tuesday. The answer was an resounding no. Meltdown management is a course I think I could tech at this point in my life. So we called the pulmonary office to reschedule (they did confirm that the extra fluid would skew the test results). Luckily the were able to get Scott resceduled for that Friday...just three days later...just three more days to wait. Thanks Dialysis!! That was last Friday. We went, Scott took the test and we were told the results would be in the Emory records system (they're computerized so any Emory office can pull ALL of Scott's records at any time - LOVE THIS). The techs that administered the test said that Scott did really great and the results of the test were great results. So Monday...no news. Tuesday no news, Scott asked if we should call. I suggested we wait till Wednesday. Wednesday afternoon the transplant team called to let us know that the test results still had not been posted. Okay, should we call...would that help. We tried Thursday to call and we couldn't get through to the right person. This morning the transplant coordinator called to let us know they STILL did not have the results. It's been another week!! ARGH. I did get in touch with the correct person this morning and she told me that the results of the test had to be retranscribed and then signed off on by a doctor. She promised though that it would be completed today and faxed over to the transplant coordinator. So that's kinda where we are today. A few other bumps along the road during the past three weeks. Because we are so close (at lea...st we keep trying to tell ourselves that) I've not picked up any freelance work. Our power company notified us that our power bill will be increasing $60 a month starting in August. Well I can certianly tell you that the extra $60 is not &60 we have right now to budget in. Thye won't work with us at all - oddly all of the utility companies offer no programs for disabled people - which I find a true shame. I will be tackling this once we're on the other side of this. Another incident that happend just the other day was the city notified us that the grass was getting to long in our front yard. Well the last thing I want to do with it 90 degrees outside is cut the grass. We have a neighbor kid who wants to cut it for us...but we don't have the money to pay him. I actually feel worse for him because I remember being his age and wanting to earn the money. On the better side of everything we've had a month of parents visits. Scott's parents were here for about a week with us and then right behind them being here my Mom has been here for a week. Always great to get to spend time with them when we can :)


So this is why I've not been posting the past four weeks...I hope everyone understands.

August 7, 2009 (II)

Continued from August 7, 2009 (I) Post:

This seemed like a good time to leave - since they were getting closer to taking him off to the OR. Plus I had to call Scott's cardiologist and have the records faxed. Plus I was about to fall over from being so very tired. I went outside to make the six or so phone calls and then went to the cafe to get some breakfas...t. The whole time I'm having conversation in my head to make sure all the "t" were crossed and the "i" were dotted. Once I was settled with what I needed to do I turned it over. I took breakfast back to the room and ate. Once I ate I made up Scott's bed and promptly laid down. It was only a short time later that the surgeon popped in. I knew instantly that something was wrong. He must have read it on my face because the very next thing he said was that Scott was just fine. He then went on to explain that the donated pancreas was not up to standard (pancreses are actually hard organs to transplant - we're currently learning) and he was not comfortable moving forward with the transplant due to the risk of rejection. As the disappointment washed over and I continued to listen to what he was saying my admiration of him was growing. His concern is for the patient. As much as he might understand how hard it is for us to wait longer - he's more focused the success of the ...tranplant. He left and I started making phone calls again. I had to tell Scott's parents to turn around and go home - how very hard that was. About an hour later they brought Scott back up to the room. Let me back up a bit...they had taken Scott into the OR and started to sedated him. During this time it is customary for the surgeon to inspect the donated organs and it was at this time the surgeon made the call. So they had to bring Scott back out of the anesthesia and then back to pre-op to monitor him for a bit. He says when he woke up he immediately realized there was no pain. They then told him that the transplant did not happen. About an hour later they wheeled him back up the room. From there we asked for him to get dialysis at the hospital since he had missed his session the night before. This is another thing I don't understand. When the call came in Scott was at his heaviest wet weight Wet weight for dialysis patients is the amount of flui...d they put on in between dialysis treatments. For those that don''t know what kidney failure does as a whole - when you kidneys stop working the person stops urinating. Urination is a way for the body to expel fluid from the food we eat and the beverages we drink. When you can't urinate you can't get rid of the fluids. As the body breaks down what it's given all of the nutients from the food build up and become toxic...and deadly. If kidney patients did not get dialysis then every single one would die within a seven day period. Back to Scott So Scott was at his highest wet weight because he get's dialysis on Tuesday, Thurday and Sunday overnights. On Sundays he's not had a treatment for almost three days. One of the first things they did when he went in for the transplant was to weigh him. He was 12 pounds over his dry weight of 203. At the transplant team...s request Scott had just lost 10 pounds the previous few months to get to the 203...that they requested. We tried to explain that this was Scott's wet weight, not his dry weight, but we could tell they were concerned about it. I do not understand that once the decision was made at 8:15pm to wait until the next morning for the transplant why they did not give him dialysis at the hospital? If the surgeon was concerned a 2 to 4 hour dialysis session overnight there would have taken care of the extra fluid. The only response I got was on Monday and I was told that once they put the new kidney in it should start working immediately to remove the extra fluid. So once Scott got back to the room it took a couple of hours for them to come and get him to take him to dialysis. By the time he returned to the room it was going on 6pm. I tried to get some sleep, but to no avail. At that point he was released and back home we came. I think we were both in bed by 8:30pm and slept for... at least 12 hours. The next day was tough on me because I started going through the "why's?" of it all.I took me a couple of days to make peace with it. About the time I made my peace with it Scott started. It's just like anyone else going through a grieving process; shock, guilt, fear, depression, denial, anger and then finally (finally) acceptance. I say it only took a few days for each of us...that's probably an understatement. I think really until it was time for Scott's parents to arrive (second week of July) that we "snaped" out of it. The joy of it is that time does not stop to allow you to go through those seven steps. I don't think anyone really ever gets that time...and that time is needed to heal. So during this time after the first phone call we had things to take care of. Some of it to our advantage, but nonetheless gruelin...g. The transplant team called that first Friday we were home and was STILL having problems getting records from Scott's cariologists office. So I had to jump on that and get it taken care of. Once that was done the surgeon had to review all the records again for Scott's transplant. It was at this time that our transplant coordinator called us back, that next Monday, to let us know about the Pulmonary Stress Test. Scott has been an on again off again smoker for years. It was a given that they transplant team said he would have to quit. He quit last May and has been very successful in quitting. He had to wait six months after quitting to retake some of the pulmonary stress tests the transpant team wanted him to do. So last Nov, maybe Dec he went in to take the pulmonary test and he passed. That was when we were notified (three days before Christmas) that he was cleared for the transplant. Well what all of us had forgotten was that there were 2 pulmonary tests scheduled, not just the 1 he took. So we called to double check that Scott had in fact not taken it and sure enough he had not. At the time, late last year, the machine was broken. So we got it scheduled, but the earliest they could do it was two weeks out, Tuesday July 28th. Okay - damn - okay - damn!!! So were back to waiting. Now to most two weeks really doesn't seem all that long to wait...well when you're in hell, both physically and emotionally) two weeks can seem like an eternity. during these two weeks we still had all the other stuff going on. Emory offers a "Charity" program to it's patients if they qualify. They had called and asked if we would like to try and qualify - a resounding yes from both Scott... and I on that one. So we received the 18 page packet from them. all 18 pages had to be filled in and we had to collect tax documents and other stuff to submit with it. Mind you too, both Scott and I are still realling from the firt transplant call and being sent home. So I asked my Mother to help me collect everything and we had to ask Scott's parents submit to us a noterized document that they needed too - so this packet became quite the family affair. About a week later (a week past the deadline Emory sent) we had everything collected and I went down to turn it all in. On the 14th of July Scott was scheduled for a follow-up for the tonsillectomy (continued in next post August 7, 2009 (III))

August 7, 2009 (I)

Let me see if while it's quiet I can get a little done here...


The sunday, July 5th, we got called into the hospital was one of the longest days for both Scott and myself. We arrived at Emory at 2pm and the rest of the day was spent running tests and meeting various people with the transplant team. They wouldn't tell ...us if the organs had arrived at Emory yet, so we spent from 2pm until 8:15 pm waiting (let me stress the waiting part) for them to let us know if the transplant would happen that day or be postponed until the next morning. Finally (FINALLY) at 8:15 it was decided that the transplant would happen first thing Monday morning. In the mean time Scott's parents and sister were doing the first part of their drive from Florida and Scott's local aunt and uncle were on standby waiting to see when they needed to leave to arrive at Emory for the surgury. I was able to leave the hospital once the decision was made, to come back to the house to pick up the dogs and get them dropped off with my friend Tonya since we expected the next few days to be grueling. It was my Mom that pointed out to me that we needed to do something with them...and she was right. Thanks Mom and Tonya! I arrived back at the hopital around 10:30pm Sunday night. Mind you - Scott was asleep when Emory fir...st called Sunday and since we didn't know when the transplant might happen he didn't eat or drink anything. When I left the hospital he was one grumpy grump because he's not eaten since Sat night. The hopital wouln't let him eat until it was decided he would have the tranplant the next morning. On a personal level I noted that Emory realizes that family can be a great resource for information about the patient. One of the things I've encountered moving through the past three years is that most doctors only deal with the patients, excluding family most of the time when it comes to the illness. I think they for...get that family usually ends up being the sole caretaker for the patient - and in Scott's case that's me. I know his illness and history better at this point then he does. Emory's transplant team (all 8 or so that we met during our day and a half there) listened to me, asked me questions and then asked if I had any questions...I was floored. After three years I just got to the point that I thought all doctors and various medical staff personal were the same. Emory also have the transplant room set up for family. The room was very large. It included a full bathroom with a shower and a reliner that pulled out into a bed. This may all sound selfish on my part...but put yourself in my shoes. If it were your husband or wife, your child or a parent wouldn't you want to stay as well. Truely these small things make such a difference for the whole experience. when I returned to the hospital Scott updated me on the few staff visits he hd while... I was gone. I got the bed/chair ready and we were lights out by 11pmish. We knew the next day was going to be really, really long. As expected (no matter how comfortable the bed/chair is) the staff was in at least once an hour checking various things. Scott can sleep through just about anything, I however am a light sleeper (probably more so since Scott went into kidney failure) so I think I got one solid hour of sleep between 2and 3 am. Otherwise I was up everytime they came in. Scott and I both woke up around 5:30 expecting them to come and get him for the surgury at any time. I called his parents at 5:30 to let them know that they should continue heading north. About 6:15 they came to collect Scott to go to pre-op. I went down with him. It's always a bit sureal in the pre-op and post op areas. So much activity going on. With Emory the staff is doubled because of the students. for those of you that may not know Emory is a teaching hospi...tal. So always so many doctors, techs and students running around. Once we arrived we had an onslaught of people coming over and doing their specifics with Scott and I getting him ready for the transplant. We found out during this time that some of Scott's cardiologists records were missing from his file at Emory - and the surgeon wanted these resuts. Then the surgen came in to see Scott - this was the first time either of us had met him. One of the very first things I noted was that he wore a pin on his color that was a "Donate Life" logo - Loved it!! (continued in next post)

August 1, 2009

Here is Scott taking his pulmonary stress test.