Scott and Marcus website

Thursday, Dec 21 evening, (T+3 Months, 16 Days)

Scott has been home for two weeks now!!! Whahoo!!!

We have been very busy getting ready for Christmas. It is so wonderful to have Scott home! We have actually been able to take him shopping! He gets in a wheelchair and tries to avoid the crowds. People are more apt to make room for wheelchair so they don’t get as close so it helps him get around as well as keeps him a little safer.

I had every intention of sending out Christmas cards this year. Pictures of the new liver, family photos, pictures of Scott at the hospital, etc. But it is not going to happen. Too much else going on. I will be glad to just survive the holidays. Everything takes much longer than expected and I have just run out of time.

Scott went to go see his hepatologist (liver specialist). We are being weaned from the surgery team back to the hepatologists. Because he still has surgery issues (open wounds, bad fluid buildup) there will be some overlap. Hopefully the two teams can work together when necessary. Anyway, Dr Thulavath wants Scott to have an MRI at Hopkins to hopefully find out where all this fluid buildup is coming from. The doctor will have to talk the insurance company into paying for it. So it has not been scheduled yet. The ascities (fluid buildup) has gotten very bad. Scott has put on more than 20 pounds of fluid in the two weeks since he has been home. He is extremely uncomfortable and tomorrow he is going to Hopkins to have the fluid “tapped off”. He also needs to have a blood transfusion - but that cannot be scheduled until at least next Friday. We spent a large part of the day arranging everything. (referrals, appointments, etc).

Scott and I had two treats this week. We went to Erin’s choir concert on Wednesday and Shannon’s tonight. We came very close to sitting next to another liver transplant patient! David H. , whose son goes to the same school as Shannon and had a transplant a few days before Scott, but he had to stay home at the last minute. David was much weaker going into the surgery (ok., he was in a coma), so he has had to have he has more physical therapy issues to deal with. But in other ways he is doing better than Scott. Anyway, he came home last week! So his family got a wonderful Christmas present too! He cannot walk as well as Scott (yet) - and they have more stairs, so getting into and out of his house is much harder. He needs a wheelchair van for transport, and the guy that volunteered to help him out of the house got sick at the last minute, so David could not make it. But his wife did, so we get to talk to her. I wish them the best of luck! Anyway, the concerts were great - and my daughters were awesome (ok, maybe I am a little prejudice!)

Scott went to his branch Christmas party today. They went duckpin bowling! Scott did not bowl but he did get to visit and assure his co-workers he is still alive (and still sick!). I wanted to personally thank all of Scott’s co-workers who have donated leave to Scott so he has not had to go without pay. It has been such a relief to know we will continue to get a paycheck. Thank you!

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Friday, Dec 22 evening, (T+3 Months, 17 Days) - OK, I STARTED on Friday

(Scott writing)
I went for the pericentesis (aka tapping) this morning (thank you so much Jody for the ride, and sitting around all morning). Belive it or not, they removed 8 liters of ascites fluid, and only stopped there because that’s their policy (previous taps were around 3 liters). There was still plenty of fluid left. Estimating that the fluid is about as dense as water (2.2 pounds per liter), that’s 17.6 pounds of instant weight loss! Talk about throwing off your balance. Those first few steps were more than a bit weird, but walking has become more natural now.
As I stare Christmas squarely in the face - with all my shopping finished, thank you very much - I can start to see all that I have to be thankful for. Sure, my hands and feet are always freezing, my legs and feet are still full of fluid and weigh a ton, I have two open wounds in my chest, I can’t really hear well at all, and I have all kinds of little aches and pains to deal with, BUT I’m on this side of the grass, and have every reason to believe that I will stay here for a very long time. In the movie “It’s a Wonderful Life”, there’s a scene near the end when George Bailey realizes all that he really has and he says to Burt the cop “Hey Burt, my mouth is bleeding - isn’t it wonderful!”. I hear that line in my head alot lately as I realize the incredible gifts that I have in the form of family, friends, coworkers, and medical folks who truly care about me and support me in any way that they can. Thank you, and I love you all. Whatever you happen to celebrate this time of year, have a joyous Solsti-kwanza-hannu-mas.

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Sunday, Dec 24 evening (T+3 months, 19 days)

Scott is doing good. After losing over 2 gallons of fluid, Scott was a bit off balance yesterday. His center of balance had changed - and it took him a bit to adjust. But he felt much better and he is doing better now. However, I can tell the fluid is already starting to come back. Hopefully, he will have the MRI soon and they can find out the problem - and fix it.

Anyway, we have lots of holiday plans with family this week. We are trying to keep it simple, and restful - but that is not working.

From our family to yours - ( for those of you celebrating Christmas) - HAPPY CHRISTMAS TO ALL AND TO ALL A GOOD NIGHT. (To the rest of you, enjoy the day off!)

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Saturday, Dec 30 (T+3 months 25 Days)

Scott has been home just over 3 weeks and getting a little stronger each day. There are chairs he could not get out of before, that he can now. He can climb stairs a little bit easier and can stand and walk a little bit longer. He still cannnot get off the floor without help (especially when tired, which is when he is mostly likely to fall) but it is getting better.

The ascides (fluid buildup) is worst than ever. The 8 liters of fluid they tapped off last Friday is completely back. The best way to discribe it, he looks like a concentration camp victim (because his arms and shoulders are so thin) who is pregnent with twins. His legs have lots of fluid in them too which can cause problems too. Putting his legs up helps some - but there really isn’t anywhere for the fluid to go.

Yesterday we went to Hopkins and he recieved 3 units of blood. While we were there we went to Nelson 7 for a social visit. It was nice to go up there - and leave again. We dropped off some t-shirts for the surgeons that said in Latin (with a translation on the bottom) that said “If I wanted your opinion - I would have read your entrails” Has a different meaning from a surgeon rather than the SCA sword-jocks who usually buy the shirts (we saw them at our Medieval camping event and ordered them). Dr Singer thought there might be another transplant last night - and promised to wear it under his scrubs.

We are still waiting to schuedule the MRI which will hopefully tell us why Scott has all this fluid buildup and hopefully - how to fix it. One theory is that there is an artery or vein or something that has a constriction. I don’t know how or if it is related to why he keeps needing blood (he received 3 units of blood 3 weeks ago when he came home from the hospital too). He has been getting iron supplements and some injection that was suppose to help him produce more blood - and he was still very anemic.

We had a GREAT Christmas (Scott being home was my favorite Christmas present!). It lasted 3 days (Christmas with Scott’s mom on Christmas eve, with my family on Christmas day, and Scott’s dad on the day after.) Erin has gotten to have sleepovers with her cousin and with her best friend Kathleen, so she should be happy. Shannon has gotten to watch what she wants on TV and play on the computer - without her mother telling her to go do her homework. She stayed home while we were at the hospital yesterday, slept in and did what she wanted (watched cartoons!) - and never even got dressed until we got home!

New Years plans include sitting in front of our fireplace watching a movie and toasting the New Year with sparkling apple cider. But at least we will be together.

I am wishing each of you a toast of good health, good friends, and great family for the New Year.

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Wednesday, Jan 3 2007, (T+3 months, 29 days)

Happy new year! I am a little late, but I am writing my post-2006 Christmas letter. I am having trouble with my address book and can’t find many of your addresses. If you want a copy send me your address (and phone number!) to my email address, rheannon1@comcast.net

I uploaded a really nice picture of Marcus and his family to the the “Marcus” page. Check it out.

Scott and I spent most of the day at Johns Hopkins (but he got to come home!). He is very miserable with his ascites and he went this morning to get “tapped” and had 6 liters pulled out. Unfortuantely, I think there was a lot more - but that is where they stopped. My theory - they drained a large pocket of fluid - but not the only pocket.

Anyway, while we were there we managed to arrange to finally have the MRI done. We have an appointment with Scott’s liver doctor on Friday, and he wanted this MRI done before then. Fortuantely, there was a cancelation and they were able to squeeze us in. We will hopefully know the results on Friday. We also managed to squeeze in a lab test and pick up some prescriptions. We got a lot done. They let me sit in the room during the MRI - it was very interesting! While the machine was running, Scott’s legs kept twitching! Somehow the magnetic field was affecting this nerves. But no pain nor lasting effect, so I can laugh about it.

We had a good new years. Nothing exciting, just stayed up with the girls watching TV. Then went to bed. I hope you had a good one too.

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Friday, Jan 5 evening (T+4 months, exactly)

I have some good news - and bad news.

We went to go see Scott’s liver doctor and found out the results of the MRI. There is a constriction on the vein that goes into Scott’s liver. (This is confusing because this is the only vein in the body that goes INTO an organ.) Anyway, the blood backs up (much like a dam in a river) into his abdomen and then leaks out of the vessels as ascites. Apparently it is pretty bad.

Anyway there were many options including doing nothing (since the ascites is continuing to get worse, it is not a VIABLE option.) There is a surgery option which was also rejected due to Scott’s tendency towards infections. The idea of a shunt was considered and rejected since the vein has gotten so big that the shunt would like to start to “float” around the vein - and that is a BAD THING. So the only option left is angeoplastic. A doctor is going to go in and use a ballon to try to widen the conscription. That was the good news.

The bad news is this is not without risks. To minimize them Scott must go back to the hospital on Sunday. They will need to use a dye which is hard on is already weak kidneys. So they will give him medicines to help minimize the damage. The procedure will be on Monday. The doctors did not mention how long he will be in after the procedure.

To make matters more complicated, my build-in babysitter (my mom) is leaving for Hawaii for 6 WEEKS. (It is a ROUGH life!) So hopefully he will not be in for very long. Fortuantely, the girls are old enough that they can be left alone for short periods of time. They just aren’t as reliable as I would like about getting their homework done.

Sigh.

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Sunday, Jan 7 evening (T+4 Months, 2 days)

Kids are in bed, hopefully I can get my thoughts together and let you know what is going on.

Scott has been admitted. Nothing too exciting: a lot of sitting around waiting. When I left they were still planning on tapping some of the excess fluid as well as making sure the picc line is still usable. They were very concerned about all the times he has fallen due to his swollen feet/legs and his balance being off due his abdomen and some of the medications messing with the balance in his ears (as well as his hearing) . He does not react very quick when he does stumble, so he usually falls. Most of the falls can be blamed on trying to do too much, too soon or poor judgement. (Such as trying to bend over to retrieve a dropped item while sitting in a rolling chair. Suddenly the chair is scooting across the room without him. ) But he had bandages on his knee and hand, and bruises in several spots.

I wish I could tell you exactly what the procedure will entail or when it will be - but I don’t know yet. I am guessing when I get there tomorrow - he will already be at the procedure. I know it is considered an angeoplastic (I am guessing at the spelling - I know I don’t pronounce it right, so I have no hope of getting close with the spelling.) But it when they put a ballon up into the veins/arterys normally around the heart - in this case the liver, and open them up. Sounds simple and hopefully it will be.

They will keep him for a least 24 hours after the procedure to monitor his kidneys, the fluid buildup, etc. So he could be home as early as Tuesday.

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Monday, Jan 8 evening (T+4 months 3 days)

Scott’s procedure went fine. There were no complications and the stricture was opened up successfully. However, it may not be the “magic bullet”. The pressure differential before the procedure (the difference in pressure above the stricture versus below the stricture) was not as great as expected. If it was causing all the ascites, it is expected it would be much higher. But it is at least improved.

I do not know if he will come home tomorrow or undergo more tests. The doctors had not come to talk to him about it when I had left.

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9 Jan - just after midnight

I just talked to Scott - he is spiking a fever again. We have no idea the cause. It was one of the last complications I expected. He has not run a significate fever for about 2 months. He is obviously scared. I have been on the phone trying to keep him calm - mostly by talking to him about anything else, cats, kids, etc. But he had to hang up when they came in to do a chest x-ray to check. His fever has gotten over 103.5. They will do lots of cultures and blood work - but for now all they could give him was regular strength tylenol. But the chills have stopped for now, so maybe he can at least get a little bit of sleep.

Needless to say, he is not coming home tomorrow…..

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Wednesday, Jan 10 morning (T+4 months, 5 days)

Scott ran high most of the day yesterday. At one point his blood pressure and pulse rate went up also, which made the nurse very nervous. He also could not keep lunch down either. They still do not know root cause of the infection, but the main suspect was the procedure he had on Monday. They doctors suspect that bacteria was introduced into Scott’s system at that time.

Anyway, they started him on broad spectrum antibiotics late yesterday afternoon and he immediately started to feel better. The fever came down, vitals returned closer to normal and he was able to eat dinner without any problems.

Today they are going to do an ultrasound to rule out any large pocket of infection in his abdomen. I also belive they may tweek the antibiotics based on what the results of the cultures are - which should start coming in today.

They would not speculate when he might get to go home , but when I asked if I should reschedule his dentist appointment for Friday, they said yes.

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Wednesday, Jan 10, evening (T+4 months, 5 days)

Scott ran a fever most of the day, but it had gone down again by the time I left. He had an ultrasound, to look for large pockets of infected fluids which might need to be drained - but there were not any found. He had an MRI to look at how the blood flowed through his liver - don’t know the results.

Scott was moved from a regular nursing unit to a “progressive” nursing unit. They could monitor his vitals better and keep with his medications, bandage changes, etc. Although his fever was obviously going up this morning, they were too busy to take his temperature or check his blood pressure again. Nor could they find the time to change his dressing. (We were not on Nelson 7, where they treated him better.) So I am glad they moved him. The bad part is they must monitor his heart rate constantly

They are giving him strong antibiotics again and will have to remove his picc line for now. (With the infection in his blood - his picc line is will become infected if it isn’t already.) The antibiotics are already doing not nice things to his system.

Just to warn you if you come to see him - he has been losing hair, even beard hair, for a while - but it has gotten to the point where it is extremely noticeable - and he looks more unhealthy than ever - even though he was getting stonger. I don’t notice it much since I have been seeing him all along. But for folks that have not seen him in a while - it is a bit of a shock. Who knows how bad off the antibiotics will leave him this time? Sigh.

I just talked with Scott. Apparently they still have not changed his dressings because “the doctor has not written the order for it yet” - and Scott is about to get two units of blood. So much for sleeping tonight….

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Thursday, Jan 11 (T+4 months, 6 days)

Scott started running a fever last night shortly after I talked to him. It climbed to over 104 degrees!! But it had disappeared again by morning. So today he was very tired. But he had no fever all day. They modified his antibiotics which will hopefully help.

They did tap him again. They wanted to get a sample of the fluid to make sure it was not infected, and while they at it they pulled off 7 liters of fluid. The fluid that was in his legs is gone, so my theory is that it went to his abdomen - because the abdomen was not filling up from other sources. Which would be a good thing. We shall see if the ascites starts to lessen. If the procedure did not help - we are up the creek, because the doctors are not going to try any other procedures that could release more bacteria from his bile ducts.

The MRI and the ultrasound did not show any pockets of fluids that would need to be drained. Which is good. That means the antibiotics should be enough.

My sister, Mary, is coming into town tonight to help me out through the weekend. I did not realize how stressed out I was until she said she was on her way to help out. Hopefully, the worse is over - but knowing she will be there to take good care of kids and the house, will help me focus on getting Scott better and home again.

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Friday, Jan 12 evening (T+4 months, 7 days)

No fever since Thursday morning. But he his blood cultures have continued to come back positive - however, these are the ones were taken when he had a fever yesterday morning. For some reason, I thought it sounded reasonable - but they doctors seemed slightly concerned. I suspect that they will come back non-positive tomorrow.

Because the cultures were still postive, the doctors did more checking for absyses. They are not expecting to find any though. However, the MRI they did yesterday did show something. The doctors discribed them as “small pockets of air” in one of the lobes of the liver. It could be nothing - or it could be the beginnings of an absyses in his liver. They will another MRI on Tuesday to confirm or deny anything. So he is not coming home on this weekend.

Scott received two more units of blood today. Apparently his numbers were very low - again. But otherwise he looks and acts much better today. Stronger, etc. So maybe I am worrying about nothing. Apparently, the doctors are also thinking he is doing better too - because they are moving him again - tonight, to a step down unit. Unfortuntely, they are insisting that he turn his cell phone off (they were suppose to tell him that in the last unit - but in reality they did not care.) Anyway, if you want to call him his phone number (until they move him again) is (410) 502-4945. He is in room Olser 4 rm 472. He could use some cheering up since he has to be there all weekend.

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Saturday, Jan 13 evening.

Not much happened today except the infamous Ravens playoff game. (I must pass the stadium on my way to and from the hospital, so planning my trip to avoid traffic was important.) So I went in this morning long before the game - and came home in the middle of the game. The traffic was light - but what there was acted very strange. I saw lots of speeding, cars that would not stay in their lane, and two cars that totally ignored red lights. I was glad when I got out of the city.

However, we did something. We cut Scott’s hair. I was hoping cutting it short, it would look ok. No such luck. So we attempted to shave it - unfortuantly, we did not have the right tools for the job. Neither his trimmer nor his shaver were ment to work his baby fine hair on his head. (They were designed to work on much courser beard hair.). You can see our humerous attempts on the new page called “Scott’s haircut”. He still had the mohawk when I left - but was going to attempt to get rid of that later in the evening. (He needed a break - and I needed to leave to avoid the football traffic).

The story will continue tomorrow….

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Sunday, Jan 14 evening (T+4 months, 9 days)

Scott finished his haircut. I put new pictures in the “Scotts Haircut” page. Sigh.

He had an ultrasound today. I don’t think it showed much, since they did not say anything. Scott’s liver doctor was on call today and did rounds. He said the ascites was a little better, but it is coming back. Unfortuantly, there is not a whole lot more they can do apparently at this time.

They believe the infection is on the run, and depending on how much longer he needs to be on the antibiotics will depend on when he comes home (assuming the MRI on Tuesday does not show anything unusual.)

After they send him home, they will tap Scott when necessary, but basically they are just going to watch him for the next 4-5 weeks and then talk about further options. The one he mentioned at did not sound good, but we will know more in a month.

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Tuesday, Jan 16 (T+4 months, 11 days)

Scott did not have the MRI today. Because he is stable and doing well - he was low priority, and apparently they had a hugh backload from over the long weekend, so only emergencies got done. The good news is they don’t expect to find anything.

If all goes well, tomorow he will get the MRI and get a new picc line (they had to remove the old one because it probably would have gotten infected due to the bacteria in his blood). Unfortuantely, it takes a while to schedule the picc line. (Fortanatly I convinced them to go ahead and schedule it even though they wanted to wait until after the MRI). IF both of those happen and everything goes well - he MIGHT be able to go home tomorrow. Unfortunatly, scheduling on my end is a nightmare. We have no idea when he could come home - and I need to be home to help Shannon stay on track to get a big English paper done. I am

He got tapped for 5 liters earlier this evening.

Scott has been working yesterday and today. I took him his work notebook computer and he was able to use the phone in his room for a dial-up connection. So those of you from Goddard, you might get an email from him - he is trying to get some work done. If you need to get hold of him, send him an email (to his work email address) - just not with a big attachment!

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Wednesday, Jan 17 , evening (T+ 4 months 12 days)

So close we could taste it.

I worked this morning while Scott got his MRI. Since he has been stable (no temperature) for 6 days now, no one except the paranoid one (me!!) thought it would show anything. Then he got the picc line and the home nurses had been called and medications ordered.

Then he got the results of the MRI. (”Just because you are paranoid, does not mean they are not out to get to you”) There was an abscess, apparently in his liver, about 3 and a 1/2 centimeters in diameter. The doctors were not in agreement, some thought it should be drained (which is not without significate risks), but the ones that said Scott could go home prevailed. The plan was for him to go home for two weeks on the IV antibiotics, be carefully monitored, and then repeat the MRI and see what had happened. Maybe the anitbiotics would work and kill the infection (not very likely, but possible).

But just before he could leave - Scott decided to run a fever. Not very high (100.5 degrees) and it went back to normal a few hours later, but enough that they could not let go home. The doctors apparently have a meeting every Wednesday afternoon to have a round table discussion on each case - so they were going to re-evaluate his case based on the re-occurance of the fever. We don’t know the results. So he may - or may not come home tomorrow.

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Thursday, Jan 18 evening (T+4 months, 13 days)

No surprise - they decided to drain the abscess today. I was on my way in, waiting for the elevator, when one opened up with a patient on a stretcher. My thought - “I guess I will need to wait for the next one” - then I realized the patient was Scott!! So I jumped in - even through it was not going my way.

He was on his way to ultrasound for the biopsy (don’t panic - that is what they call it when they use a needle to drain an abscess and take part of it to be tested - in this case, it has nothing to do with cancer.) . However the funny part was that after a few minutes all the doctors started whispering - and going out to the hall to talk. Then they came in and said - “We need to send you up stairs for while. Your platelet count is low and we need to get you some more before we proceed. ” So he went upstairs to his room, got some platelets (and some lunch) before going back downstairs for the biopsy. Unfortuantely, it hurt a lot - so I am glad I was there to hold his hand, but they got it drained.

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Friday, January 19, evening (T+4 months, 14 days)

Scott is HOME!! Shannon is at a girl scout camping trip (indoor!) and I sent her a message via her leader - and apparently the whole troop cheered!

Baldy is now sitting in front of the warm fire place - and sound asleep. He got had a nice dinner, comfortable chair, warmed up, and zzzzzz….

Prelimary results of the fluid in the abscess says it was infected with the same bacteria they are already treating. So I will be continuing to give him IV antibiotics twice a day for at least a couple of weeks.

We have changed the way we are treating the open wounds in his chest. That is where they had to reopen the stiches about two months ago. It looks like a rhinosaures got him, there is a smaller wound up top, and a big wound below. (He actually convinced one nurse he was gored by a rhinosaures!) The wound expert looked at it and said that it would never heal they way they had told me to treat it. Great. So hopefully this new method will help. When she said he could take a shower (provided he cover the picc line with saran wrap) - and change the dressing afterwards, I almost kissed her. Not that washing his hair is much of an issue right now….

Please look at the pictures from his hair cut - and give us your best caption (Mary’s suggestion). If there are any other pictures you would like to see, I can probably add them to the site now that I am getting better at this.

I need to go sort out Scott’s pills for the night.

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Sunday, 21 January evening (T+4 months, 16 days)

We had a mostly uneventful weekend. But busy. Medicines, vitals, laundry, meals, clean up, etc, etc, etc. Boring stuff, but that is a good thing.

For those of you not living in Maryland, it snowed today. Not very much - 1 inch. But it is the first snowfall we have had this winter. That is unusual, we usually get a lot more snow than this by now. The road are a bit icy and dangerous, but fortuantely, we don’t have to go anywhere. The girls have tomorrow off from school (not due to snow - end of the marking period), so we all just played a game together and enjoyed being snowbound - and just all of us being together.

There is a weird soft lump on Scott’s side. We mentioned it to the doctor who shrugged and said - “nothing showed up on the MRI”. They may not be concerned, but we are keeping an eye on it to find out if it changes or gets worse.

Scott’s ablity to hear and understand voices has gotten even worse. He hears constant background noice and noices that most of us ignore (dishwashers, fans, background music, etc) sound louder to him - so that voices are very hard to hear above the other din he hears. Please be aware of that when you talk to him on the phone (which he avoids, if possible) or in person. He will probably have to ask you to repeat stuff. He will be like this for months, possibly years, possibly forever.

Scott’s ablity to keep himself warm is very poor. Basically, unless he is in a very warm room - he is constantly cold. Especially his hands. He usually has to wear gloves, even in the house.

Shannon had a great time “camping” - her leaders confessed it was more of a two day slumber party. Shannon never even got dressed yesterday! Definitely not roughing it, even though it was cold. (It was at an indoor, heated lodge). Since I went to help bring the girls home, Erin had to be Scott’s nurse this morning and give him his medicines, including the IV one. She did great!

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Monday, January 22, evening (T+4 months 17 days)

I really thought Scott would be back in the hospital this evening. I am VERY glad to be wrong! Scott had a bad night - and woke up with a fairly high fever of over 102 degrees. We decided to wait until after breakfast - and check again. It had come down some but neither of us were excited about calling to report the fever since it would probably mean having to go into the hospital again. But - the doctor called us! She said they had found different bacteria in the fluid from the abscess they drained - and Scott’s fever made sense! She then called in two more antibiotic prescriptions into the nearby pharmacy.

The good news - no hospital and the bacteria that caused the latest fever should be under control soon. The bad news - he is now on three very strong antibiotics, which are bound to have an effect on his stomach soon, and who knows what other negative side effects? Kidneys? More noise in the ears? Unable to digest food again?

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Thursday, 25 January, morning (T+4 months, 20 days)

We dodged another bullet. Late Tuesday evening while we were giving Scott his IV antibiotics, his picc line got a clot in it and stopped working. We were suppose to call the home care nurse even though it was late, but we did not know that. We knew she was coming the next morning and figured that would be good enough. Apparently we were lucky. Often clots that are not taken care of right away cause the picc line to need to be replaced. That would be a bad thing. But this one came out and the picc line is now working again.

Scott is starting to suffer from three strong antibiotics in his stomach. He is dizzy and light headed, so he tries not to walk around without his walking stick for support. While the doctor did say he could start to drive again - provided he felt safe, that is not an option anymore. He is also starting to lose his appetite, but so far has not be very nauses - yet. It took time last time for his stomach to rebel enough to be a problem.

I am off to work. I don’t like leaving him alone - but he prefers it that way since he can usually get more work done when I am not around.

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Thursday, 25 Jan afternoon (T+4 months, 20 days)

Another bullet we a trying to dodge. The liver doctor called - Scott’s red blood cell count is extremely low. (We have no idea why, and when we ask, they do not seem to be concerned with “why” - only that is fixable. ) So Scott needs a blood transfusion. ASAP. However, trying to arrange something is not easy. If we cannot arrange something as an outpatient - we may have to go to the emergency room. This is the one thing I would prefer Howard County General Hospital for, since we don’t need a liver specialist to get blood. In theory, we could get in, get out, and don’t have to drive into the city - or pay for parking.

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Friday, January 26 afternoon (T+ 4 months, 21 days)

You can’t keep dodging bullets and exect to never get hit. We finally got hit. Scott is back in the hospital.

We were all set up to get the blood at Howard County General later today, but we had to do a “Cross and type match” first. So we went out in the very cold night (the coldest night we have had this winter). When we got back he started shivering - and then his fever went up. Considering he is on three very strong antibiotics, this was a very bad sign. I called the doctor on call - and between the low red cell count and the fever, he had to come - that night, in the coldest night of the winter.

So we found places for both girls to go for the night (with class mates, so they could catch the bus with them in the morning for school. I want to thank Sarah B and Tammy R for taking in the girls late at night on a school night. ), packed an overnight bag and headed to the Hopkins emergency room. As great as the reputation for Hopkins hospital is - that does not include the emergency room. We spent about 12 hours in the ER, getting blood work, a cat scan, an ultrasound, etc. The bed was just a stretcher with no pillow - and I got to sit in a plastic chair. Needless to say, neither of us got much sleep.

The bad news is, the abscess is not the problem this time. Apparently there is a small clot that is blocking part of a vein - and already causing possible damaged to the liver. They are going to wait and monitor it (We are getting an MRI later - then see what it looks like next week). If the liver is damaged - they can’t cut part of it out this time, there is barely enough there now.

He will possibly need a new whole new liver. Which would mean that Macus’s wonderful, awesome gift would be lost. This time he would get a cadaveric liver, which would apparently help with the infection problems. (Infection issues are worse with live donor transplants because the tube between the intestines and the liver stays with the donor - and recipients liver gets tied right into the intestines - which causes easy contamination of the liver.) This may not be totally accurate, but this is what we understand so far.

Fornicate.

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Saturday, Jan 27 afternoon (T+ 4 months, 22 days)

I am updating this from Johns Hopkins. I found a computer with “public access” - and if no one is looking I can use it. (The nurse knows, but she asked me to keep the door closed since other staff might disagree with her letting me use it).

Scott’s vital signs seem to be ok - or at least better than yesterday. He finally got his blood transfusion they have wanted since Thursday morning. He has had FOUR units of blood since last night. I am glad I donated one unit to the Red Cross on Tuesday. He had an MRI last night which they will compare to one he will get on Monday. He also had four liters of fluid tapped off his abdomen.

However, he does not feel well. His back and side are hurting. Maybe he is just tired.

They also are looking into why his left eye is not focusing very well. It seems to have a lot of pressure behind it - sometimes. Very hard to diagnois an intermitten problem. His hearing his still bad and they are trying to figure out how to improve it.

They also started treating him for low acting thyroid. They tested his thyroid last time he was here (two and a half weeks ago) - and apprently someone just did notice the results. Apparently hair loss is a symptom - so they decided to test him. Hopefully the doctor can explain it better.

Shannon baked some brownies and we brought him with - with a file it, so he can “escape his incarceration”.

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Sunday, January 28 afternoon (T+ 4 Months, 23 days)

Updating from Hopkins again. They are about to downgrade him to a room that will probably not have a computer in it - so I doubt I can get online again until I am home. He will still be monitored but not as intently.

He saw all kinds of doctors yesterday. Infectious disease doctor came in trying to find a possible source for the infection besides his liver. Nothing obvious. Then nuerology doctor came in (multiple times). He has had something nuerologicly wrong with his hands since the transplant. Tried all kinds of tests. Then at MIDNIGHT an optomogist (eye doctor) came in to try to find out why his eyesight is getting worse. At somepoint Ear, nose, and throat may come in for a consult too.

He has been left alone for the most part today - which is good, he needs some sleep, `cause tomorrow he will spend all day in all kinds of tests. (Every doctor wants to get him further tested on Monday.) The most important is the MRI which will tell them how that “spot” on his liver is doing.

My plan is to go to work on Monday - while he is tests all day, then come in on Tuesday and hopefully find out the results. So don’t be surprised if I don’t update the website until then - unless something goes wrong.

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Monday, January 29 evening (T+ 4 months, 24 days)

I must have mis-understood something, because there was no MRI today. They even talked of sending home Scott tomorrow!

They are still testing his hearing and eyesight to see how bad they are - and what can be done to bring them back. The doctors are not going to try to find the source of the infection or the gradual blood loss. So I guess both could easily come back - oh joy.

I don’t know what to expect over the next few weeks/months. Maybe the doctors are hoping the problem will go away on its own - and maybe it will. I do know they don’t want to anything that might cause more problems, so for now they are going to do nothing for now and wait for it to get worse or better.

I have added a few pictures under “various photos”. I will add more in the future, so keep checking back. Also, there are new pictures under the “Scott” and “Marcus” pages.

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Tuesday, January 30, evening (T+ 4 Months, 25 days)

Scott is home again!!! He is on two IV antibiotics, twice a day, for the next 4 weeks.

Scott had a hearing test today. The news was not good. The medicines have made a significate difference in his hearing since November - and it was not great in November. He can barely hear well at the range were people speak - which is why he is having trouble hearing what I say. It was recommended he get hearing aids very soon. The doctors think they know which medications are the culprits and have taken him off of them - but most likely the damage is permanent. But hopefully it won’t get worse.

Scott’s eyesight was pretty bad when we went in on Thursday - but that seems to be getting better now that they have switched mediations.

The general plan is “wait and see” what happens with Scott’s liver. It could still get better, but will take time. There should not be any rush to replace the liver even if it does not get better. They want to wait as long as possible so Scott can get stronger and healthier - and to give his liver as much chance as possible to heal itself. He had no MRI since Friday - I totally misunderstood that information. They say the abscess is getting smaller, but is not gone yet and they assume that that is where this latest bacteria infection came from.

We hope we will be home for a while - we shall see what happens. Scott will be working from home as much as possible. Hopefully the medicines that were making him dizzy are gone, so he can think about driving again too!

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Friday, February 1 morning (T+4 months 27 days)

A quick update. First, when Erin got home from school - she started throwing up. Apparently there is a stomach virus going around - and I realized I had it too. I never threw up - but I was very nauseas. So we skipped dinner and Scott and Shannon had leftovers. When Scott threw up too, I thought he had it too - but he started running a fever. At first it was low grade at first. Then at 3 am we realized it had gone up again to over the threshold where we are suppose to call - and they would tell us to come to the emergency room. We decided to be very bad and not call in until morning. The throught that we end up in the emergency room at 3 in the moring with me throwing up and explaining - “no, no, he is the patient”. Plus what to do with the girls - one of which was sick. But I am feeling a little better today and we got some sleep.

Most likely Scott will be in the hospital by days end.

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Thursday, Feb 1 afternoon

We tried, but Scott is still running a fever. It has been up and down all day - but never below 101, even with tylenhol. So we are going to have him admitted.

Thank you Sherry for taking the girls this evening.

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Friday, February 2, evening, (T+4 months, 28 days)

Scott has been running a fever off and on since Wednesday night. So far, although he has had a fever, he has been fairly stable otherwise, as in no trips to ICU or anything. The source of the infection is apparently still the abscess in his liver.

Scott actually has two things wrong with his liver right now. There is the abscess that is a pocket of infected fluid that was created when they did the angeoplastic in his liver. Then there is an area next to the abscess that was created because there is a clot in the small vein that feeds this area blood which is not being profused correctly (meaning not getting an adequent blood supply). Apparently it is damaged enough to show up on catscans and MRI already. This area is not currently infected, and the doctors are trying to keep it that way.

Today’s big adventure was to do something with the abscess. The choices seemed to be - put in an actual drain, a tube that would go into the abscess and out to a bag on his side. The downside would be the abscess is fairly small and there is more chance of complications, including the tube itself could get infected. The next choice is to just put in a needle into the abscess and “aspirate” the spot, (pull out the fluid). The last choice was to do nothing and treat with antibiotics, which so far did not seem to be working. They chose to aspirate the abscess this evening and so far it seems to have gone well. His fever had broken this afternoon and it has not come back.

There is one antibiotic that would apprently be their first choice to get rid of the current set of bacteria. Pray they do not get to a point where they must use it. They are pretty sure it would destroy what remains of Scott’s hearing and he might get to a point where even a hearing aid might not help.

The area that is not being profused cannot be fixed. It might get better on it’s own, but probably won’t. When the doctors have gotten rid of the infection they will probably start the processes of listing Scott to get another liver as a “special case”, meaning he can still get a liver even though his meld score is realitively normal. If by some chance the liver starts working better, they can always take him off the list. However, if they cannot get this infection under control, they cannot put him on the list. They will not put a new liver into an infected abdomen. So if the poorly profused area gets infected and due to poor blood supply they cannot get rid of the infection… (the doctors did not finish this sentence either)

Marcus, I am so sorry that bad luck, infections, and mistakes have destroyed your amazing gift to us. We have been trying so hard to protect and preserve your gift, but it was apparenly not ment to be. Your liver was perfect in many ways and I will never forget the sacrifice you and your family went through for us.

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Saturday, Feb 3 evening (T+4 months, 29 days)

Good news, no fevers all day.

The bad news is he called me this morning very upset. They had started a new antibiotic yeserday and apprently it was having some bad side-effects. He was very dis-oriented, the ringing in his ears was worse (meaning his hearing was deteriating), and one of his eyes was swollen and out of focus. And he was due to have another dose of that antibiotic real soon. And he was too disoriented to make sense of what to do.

So I rushed up there and told the nurse to not give him the antibiotic until we had talked to a doctor. About 4 hours later the intern (aka graduated from med school last year, and we had never met before) assigned to the floor came in and babbled “he is running out of antibiotics, and the bacteria is very resistant”. I lost it, I was not going to let some first year intern who did not know his case decide to condemn him to deafness. I want to absolute confirmation that there is no other options before I let them give him another dose. I did not want one of his regular doctors to say on Monday “I wish I had known, you had problems - we could have tried XYZ. Too late now to save his hearing.” I cried several times. Anyway, at dinner time we finally got a doctor with a little more experience who agreed that since he has not had a fever in a while and we did not have the results of any of the cultures back yet - it could wait. So he will not get the medication today at all. Tomorrow’s story has not been written yet.

Good news, he was feeling better by the time I left. Making jokes (bad ones, of course) and talking normally. He was no longer disoriented and his eye was less swollen (although still not seeing well, but I am hopeful a little more time would improve that too).

I am sorry to vent like this, but I felt you would want to know how close he came to losing his hearing - and he still may.

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Sunday, February 4, evening (T+4 months, 30 days)

The day did not start out good. He was passing blood from his lower digestive system. And he was running a fever again. Not super high, but defintely there. He called me again this morning very nervous, since the intern wanted to put an NG tube down into his stomach for some reason. This made no sense, since the bleed was definitely coming from his lower digestion system, not his stomach. So I ran out of the house to be with him.

Fortuantely when I got there, the bleeding had stopped. And a more informed doctor had come in and agree with Scott that an NG tube was a completely useless idea. They decided he needed more platelets so his could stop the bleeding on its own. (They had given him two units of red blood cells yesterday.)

The transplant infectious disease team finally came in and talked to us about antibiotics options. They had gotten the results of the culture from his abscess - and there are only two antibiotics that will work. One is the antibiotics he got on Friday that made him disoriented, blind and seemed to make his hearing worse. The other option was one that made his joints hurt and would DEFINITELY cause more hearing problems. The first one was not suppose cause hearing problems, but is known to cause the dizziness, disorientation, and eye sight problems - none of which was suppose be permenent. It is probably something else making his hearing worse, oh joy. He will get the first dose sometime tonight so tomorrow will probably be bad, as in hard to walk to the restroom and not able to see well - but at least he knows that is expected - and won’t last.

The doctors have been pumping Scott full of fluids to help keep the fever under control by making sure he does not get dehydrated. Unfortuantely, much of the fluid has become ascities, so he has been uncomfortable today. This evening they tapped off 6 liters of fluid.

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Monday, January 5 evening (T+ 5 months - exactly)

Scott was on the new antibiotic today, and was indeed very disoriented. He said something about his eyesight - but it did not make much sense. (I can deal with this since I know it is temporary). He was also very groggy. But this was also due to the fact that he ran a fever most of the day too. Hopefully the antibiotic will help soon. I am trying not to think about too much.

My friend Kirstin and her husband Dave gave him a cleaver little device. It is about size of an MP3 player with headphones - but it amplifies noises nearby - such as voices. She works in a nursing home and several of her clients use them. It helps him a lot. He can hear and understand what folks like the nurses and doctors are saying. It does not work as well as real hearing aids - but we will take what we can get for now that works.

He is suppose to get two more units of platelets tonight.

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Wednesday, Feb 7 morning (T+5 months, 2 days)

It snowed last night. Not very much, but the kids are off of school and very happy. My mom comes back from Hawaii this morning (she is coming back about a week and a half early - she hates the cold and she is leaving beautiful Hawaii to come back to snow and the coldest week in 3 years. I REALLY owe her.)

Scott spent the day in preparations for a colonoscopy this morning. I won’t go into details. But I got really excited when I arrived yesterday because his temperature was normal. So I got very disappointed when it went up again later. The infectious disease doctor said that the source (the abscess) is still producing bacteria. She did not speculate what they are going to do about it - that was up to his primary doctor - who never came to see us. The doctor who had been our doctor is heading back to England, and the new one does not impress me much. So far Scott has only seen him once, and I have not met him at all. He has a patient (and wife) who are nervous and scared, and he can’t be bothered to come talk to us.

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Wednesday, Feb. 7, 2007, 9:15pm

Original Mary doing update for the Clone Martha tonight (sorry, no improvement on grammer or spelling, it’s genetic).

We will start with the good news. The colonoscopy went today and they discovered the bleeding is hemorrhoids.

Bad news: The infection appears to now be antibiotic resistant. They are going to try draining the infection again.

Scott and Martha are in desperate need of another miracle (Marcus, thank you, was the first). Miracles can and do happen. We all need to pray for them.

Martha is staying at the Johns Hopkins tonight with Scott and holding his hand. She is very discouraged. Grandma Jody is back from Hawaii and is taking the girls.

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Friday, 9am

 

Mary, again. Martha is still at the hospital with no access to the internet. The girls are off school, and Grandma Jody & I are with them. I came over to Columbia from Pittsburgh to be with the Hulls & Pachuras. The high here is expected to be a balmy 32 deg.F. (our high was 9deg F earlier this week).

Maybe your prayers are working. Yesterday, Martha got a more positive outlook from a different doctor. The liver transplant surgeon said that if Scott can be fever free and have a clean BLOOD culture for 24 hours (note, no reference to the infamous abscess), he can be placed on the liver transplant list (high priority) and may have a new liver in 48 hours. That is still a big “if” but is possible. They may start him on the antibotic soon that will damage more of his hearing. His kidneys are struggling because of I don’t know what but should recover if this does not go on too much longer.

Many of you have asked what you can do to help. Pray. Studies have shown that it does help. Also, make sure your family knows that you are willing to be an organ donor.

 

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 Saturday, Feb.  10, 2007

 

    Mary still reporting as Martha is still with Scott at JHMC.   Martha sounded more positive this morning.  The liver doctor talked to them and seemed to think the infection is decreasing.   In addition,  Scott walked with Martha down to the cafeteria.  He was weak, but he did it.

 

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Saturday, Feb 10 evening (T+5 months, 5 days)

    Thank you for all the well wishes, prayers, etc - apprently they are working. 

 

     To make a long story short - we got some mis-information on Wednesday, that put us through HELL.  The intern (a doctor who graduated all of about 8 months ago) who is assigned to the case, reviewed and thought we were out of options, and mistakenly thought it was her job to let us know this.   She actually thought we should sign a DNR (Do Not Recesitate) because she thought there was no way to get rid of the infection.  What really bothered me was I had seen him much sicker than he was then, and she was trying to tell me that there was no hope.  What she did not know was the Infectious Disease doctors and the Attending liver doctor (senior doctor on the case) both had Aces of up their sleeves that she did not know about (which is why they are attending doctors - and she is only an intern).  Unfortuantely, not knowing what we were going through they were trying to working out details and wait for results before they came and talked to us on Thursday.   So that is why things looked bleak on Wednesday and much better on Thursday.  (Needless to say the intern is going to be “talked to”).

    As Mary said, the abscess is not drainable at this time, but is getting smaller (which is supposedly a good sign).   So the doctors decided to bring out the last of the “big gun” antibiotics.    The mission - get the infection out of Scott’s blood - not necessarily the liver.   As soon, as he starts getting clean blood cultures (it takes 72 hours for a culture to be proven clean), then (after a small victory party) get him listed on the transplant list as quickly as possible , get all approvals (especially our insurance company), and move him to the top of the list and hope he gets a liver before the infection can come back.   Scott has not been “febril” (a fever of 101.5 or higher) in a couple of days - and today it was normal all day. (OK, the temperature was normal - Scott has never been normal - that is why we all love him )  The bad news is the cost may be Scott’s hearing.  Hopefully it won’t get so bad that he can’t even use hearing aids to communicate.

     I hate to think that someone has to die for Scott to live, but this person would have died anyway - and now part of him ( or her) will hopefully live on through Scott.   It is a shame, because Scott and Marcus were such a good match, rejection was not going to be much of an issue.  Who knows what the future holds?   I can’t imagine the new liver will be in half as good a shape as Marcus’s was.  However, the part of Marcus’s liver that is still in Scott is not in very good shape right now. 

      I can’t believe after 5 months we are hitting the reset button and starting over.  I am less scared of the surgery this time because it is the only chance he has left.  Hope was taken away for a short time, but thanks to his doctors, your prayers and well wishes, we have it back.  The situation is still very frightening and may not turn out like any of us want, but we have tried our hardest.  

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Sunday, Feb 11, evening (T+5 months, 6 days)

   Not much to say, which is good thing.   He has had no fever at all for more than 24 hours.  Wahoo.   Now we play the waiting game and wait for the cultures to come back - hopefully negative.  

    I have gotten conflicting reports about how long we will have to wait after we get a negative blood culture before he get put on the transplant list - so I won’t try to confuse you too.  

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Monday, Feb 12 evening (T+5 months, 7 days)

      Scott ran a very mild fever last night for a very short period of time.   Apparently, this is expected and not a concern.   So far all the cultures since Saturday are still clear.   No official results yet, but “so far, so good”. 

      Maryland is suppose to have a winter storm tomorrow.  Unfortuantely, it is will not be much snow - it will be ice.   I am going to try to get into the hospital before it gets bad - but I may not make it.   As Scott put it - he needs me tomorrow - but not as much that he can afford for me to be hurt in an accident.   Fortuantely, main roads will probably be fine - and most of my trip will be on main roads.  If I make it there - I am not coming home until late Wednesday.   Hopefully I can find a way to update you from the hospital.  

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Tuesday, Feb 13, afternoon (T+5 months, 8 days)

     I am acutually doing this report from the hospital room.  I have official permission to borrow the one notebook computer that belongs to this floor.  They used to have 5 or 6 other notebooks - but the rest were all stolen.   They now have some stations that are bolted to the walls  in the hallways - but they’d rather I did not use them.   I am spending the night here at the hospitial because the weather is supposed to get much worse.  The snow is supposed to switch over to ice - and be possibly quite messy. 

    Good news, Scott had official results of blood cultures coming back negative.  Technically he is eligible to be listed on the liver transplant list.

      Scott’s kidneys are also doing much better.  They were doing quite poorly over the weekend - and since the new antibiotic is supposed to be hard on the kidneys, they expected them to get worse.  But they got better instead.  Also, his liver numbers have also improved - they had gone up due to the infection and are now going down again. 

      The bad news - his liver numbers and kidneys are doing better.   Apparently the doctors were going to use these as a reason to put Scott at the top of the list.  They can’t use the real reason of an infected liver - because that would make him ineligible.  They are going to have a couple of meetings over the next few days to plan a course of action.  

 

PS:  Scott here.  I appear to be alive and well, despite the odds.  I’m not quite sure what they’re going to do with me in the near future, as it  may now be a long wait  for an organ.  Once they read the tea leaves they may send us home to wait it out on the antibiotics, so please call ahead (Martha’s cell 443-676-4847) if you plan to visit.  We’ve had some wonderful visits with friends and family lately, and they’ve really cheered me up.  Well, that’s it for now - back to the baby’s life for me: eat, sleep, poop, repeat.

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Tuesday, Feb 13, evening (T+5 months, 8 days)

    The doctor just came in with lots of news.  Scott has been officially re-listed on the liver transplant list.  They used the liver and kidney numbers from a few days ago, so his score is fairly high for now (For those of you who know what this means - he has a MELD score of 19).  This is scary but good news.  They will re-evaluate at some point and it will probably be lowered.  But that may be appropriate at the time.   

     The doctor is very pleased with how well Scott is responding to the antibiotics.  He is encouraging Scott to eat easy to digest high protein.  Scott fills up quickly (he ate half of a small hospital meal and was full).   So Boost shakes are a good idea.   He is also encourging Scott to push it as far as walking around to build up his stamina and strength.

       I am a little upset with Hopkins right now.  This is suppose to be one of the best hospitals in the world - and they can’t keep toilet paper in the ladies room on this floor :( 

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FYI - I will start a “Daily Status 3″ as soon as he is listed on the transplant list.  

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