Scott and Marcus website

Tuesday, Sept 12, 2006 8pm (T+7Days)

Let’s start with the good news, Scott is eating solid foods. Not very much because his stomach is shrunken and soups seem to go down the easiest, but it is nice that he can eat whatever he wants.

I talked to Kim briefly. Marcus is doing ok. He over did a bit and got tired, but he was getting a nice nap when I called.

If you were hoping for more good news, you may want to stop reading now…

We have had first set-back. Apparently there is a small leak in the bile duct leading from his liver into Scott’s intestines. This can be quite serious. Because the bile fluid is so acidic, it cannot heal on its own and will possibly get worst over time. Eventually, if we did not do anything, he would have to have another surgery to replace his ducts. (The strange thing is, my father had this same problem 7 years ago after surgery to remove part of his pancreas due to cancer.)

However, there is a procedure that they will do tomorrow that should help. They are going to insert a small tube through his liver, inside his ducts, down into intestines. The bile will be carried by the tube instead of the duct which will allow the duct to heal. The bad news is the tube will be hanging out of his liver for months and will need constant care to keep it from getting infected. (I am not as convinced as the doctors that it will work since it did not work for my father. They had to opened Dad up four times…. But I keep telling myself, different doctors, different circumstances…)

The second bit of bad news is his vocal cords are damaged and could take over a month to heal on their own. Apparently the incubation tube over stretched them. Kind of like a piece of elastic that is stretched beyond the point where it can spring back. Anyway, there is a procedure that can help with that too, they can put collagen (like they use in lips to make them full and sexy) into his vocal cords. (I guess this means he will have a sexy voice J .) The fix is temporary, but hopefully by then his cords will have healed on their own.

Third: they have found a small infection started in the fluids in his abdomen. So more anti-biotics …

Fourth: Apparently his sodium concentration in his blood is low – and increasing his salt intact won’t help. The only solution is to dramatically decrease his fluid levels. (One liter, and that includes even fluids from soups, ice chips, water, juice, etc. Remember how I said only the soups were going down well yet…)

In general is not very happy. He did not sleep at night well due to some of his medications. Then he spent hours away from his bed at tests and appointments this morning. At one point he was “parked” in his wheel chair facing a wall for an hour and half. No book, no magazine, etc. He had to pee – and he could not get up or contact anyone for help, because he can only whisper. He was also exhausted, sitting up for that long is very hard with sliced up stomach muscles, and he was hungry because they had yanked him away just before breakfast had arrived. Fortunately, the BBC team tracked him down after a while, kept him company, calmed his nerves, and brought him some much needed water. By the time the E.N.&T. doctor got around to looking at his throat, he was still grumpy – but better than he had been. The BBC team was also able to call me and let me know where Scott was (I was just getting to the hospital) so I got to see his vocal cords and the damage to them.

Tomorrow, hopefully, they will be attending the Intervention Radiology procedure and they can give me the “real” scoop. Not to mention telling me where to go, since the doctors didn’t.

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Wednesday, Sept 13 2006 8:30pm (T+8Days)

No new bad news. Just a tough day.

Scott had his procedure to put a tube into this liver, through his ducts, and down into his intestines, with a drain coming out his side. I got nervous when it took 3 ½ hours instead of 1 hour – it turns out the doctor who told me one hour was just WRONG, and 3 ½ is very normal under the circumstances. Fortunately, Gareth and Jamie (from the BBC team – they were not allowed to film) kept me company and kept me from going stir crazy. During recovery he was pretty funny. He had not been completely put out, only given a
LOT of painkillers. So as he was recovering he wanted to talk, so he would start a sentence, doze, and then finish the sentence. He would fight the sleep as hard as he could; I kept encouraging him to rest for a few minutes so he could say a WHOLE sentence to me.

This afternoon I gave him a sponge bath (no fun allowed L ). But his sutures and drains were leaking so bad he was a mess again as soon as I was done. His poor dignity is so trampled on, he did not care that he was standing there naked and anyone could walk in the door. I kept encouraging him to hold a towel in front of himself (I am his modesty police), but he was to tired and sore to care.

Last night his hands cramped very badly. He was paranoid it would get worse. He tried to tell the nurse by buzzing her – but the front desk responded saying “can I help you”. He could not respond so they assume he hit the button by accident. Today I made sure that they put a note at the front desk letting them know he is temporarily mute and cannot respond.

Tomorrow he is scheduled for a CAT scan to see what his new “Ranger” liver looks like and he should have the collagen put into his vocal cords in the afternoon. I don’t know how long it takes to work, but maybe this time tomorrow he can talk.

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Thursday, September 14, 2006 10pm (T+ 9Days)

Please see new “note” on main page of website. Scott would like a few visitors this weekend. If you want to be his “advocate” for a shift (fill in for me) on a weekend or even on a weekday evening so I can go home early and have dinner with my kids, let me know.

Start with the good news! Scott can kind-of, sort-of, talk!! The collagen treatment seems to be helping. He sounds very horse right now but it does not hurt to talk (and he does not need to “rest” his throat since it is not horse due to illness) and still a little quiet, but he is improving and understandable above a whisper!! He can also ask for help when he needs it now. Once too often he would call for help – and no one could hear him.

The bad news is, his bili-rubin went up today. He is more yellow today than he has been for the past 3 ½ years. It was about a 5 when I got there, and just over 7 when I left. (It has been between 2 and 4 the past several years). Doctors are not sure why and are hoping it will improve on its own (I think, if this was a rejection episode his other liver enzymes test would increase also). If it does not go back down, they are probably going to go back to Intervention Radiology and “re-position” the tube in his liver. (They think, somehow bad placement of the tube may be causing it).

Scott had his CAT scan today to check out the new liver, and part of his liver is not doing very well right now. I did not really understand was what was wrong. The doctor had a “wait-and-see” attitude. Scott will probably go for another test sometime and see if it gets better or worse – and proceed from there.

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Saturday, September 16, 2006 10pm (T+11 Days)

Thanks to my friends Kirsten, Charles, and Deirdre, I got to take the day off.

Anyway, the doctors think they have gotten the bili-rubin problem under control. They re-positioned the tube into his liver on Friday evening. Today they did a scan and it appears to be not leaking anymore.

His sutures are apparently not leaking anymore and his sodium levels are going in the right direction.

Dr Malay told Scott that he might be going home as early as Tuesday or Wednesday! (Assuming no new glitches). That will be only two weeks in the hospital!

Once again the Hull boys are making everyone else mad by breaking the curve.

I am a little too tired and stressed out to believe the early homecoming will go without a hitch (I can’t see the forest for the trees), but I do believe he will be home with me very soon – and then the real work begins…

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Sunday, September 17, 9 pm (T+12Days)

A nice slow day. Gave Scott time rest and heal. Unfortunately due to some stitches coming loose, he was bleeding. It was not a dangerous bleed - just messy. Unfortantely, there was a kidney/pancrease surgery going on - and an emergency ( a transplant patient started bleeding and needed to go back to the OR) so all the surgeons were busy. (Not to mention it was Sunday). Since they all have been standing in pools of blood, the surgeons do not think Scott’s little bleed is very critical. So they have asked him to sit tight (it only bleeds when he moves around too much) and hope it heals up. I am just glad I don’t have to clean up the mess.

Other than that, he is starting to get better. Before he started bleeding, he took some longer walks. His bilirubin count is going down and he was leaking less from his other tube. He got some much needed rest and got a bath. Maybe he will be ready to come home later this week…

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Monday, Sept 18, 9pm (T+13Days)

Another boring day - but that is good. Boring means nothing went wrong and he is heading in the right direction. Although he is still “leaking” it is getting less. He can’t go home until it stops, (I think the doctors thought it would stop by now, but it is slowing down, just slower than anticipated. I am willing to except that.) So he won’t be home in the immediate future, but it is not far off if he continues to do well.

I predict that we have a 50/50 shot that he will be home this weekend. I doubt that they will send him home Saturday or Sunday (too many “t”s to cross and “i”s to dot from folks who don’t do weekends. )

The only bad thing is - the collegen treatmeat for this voice does not seem to be working anymore. He is almost back to whispering again. But if there was something that was not going to work - I would rather it be the collegen treatmeant than liver transplant. He (literally) can live with that….

He also has begun medication for the pain/numbness in his fingers. Apparently it is caused by one of the anti-rejection steriod medications. Hopefully the new medicaton will help - but apparently that is not likely. And taking him off the steriod is not an option at this time. (He is just entering the time period that has the highest probablity of a rejection episode. One of the other liver transplant patients on the floor that we know is going through that right now- and it is not fun.)

Martha

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Wednesday, Sept 20 8pm. (T+ 15 Days)

Scott is doing great except and may come home this weekend ! They are still “tweaking” his medications levels and waiting for drainage to stop. So it is not for a bad reason that he is still there.

He is a bit on the lonely side and would like some visitors. However, last weekend we had too many visitors on Saturday (wore him out) and no one (except me) on Sunday (or since then). Please coordinate with me if you want to go visit so vistors don’t overlap too much - and not such big gaps in-between.

His medications make him want to communicate (although he is suppose to conserve his voice some!), the nurses are too busy to visit much and only can only be there some of the day (I need to get a few last minute things done on the house - such as bed ready and safety bars next to toilet.). Besides, we see each other so much - we are running out of new things to talk about.

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Friday, Sept 22 12pm (T+17Days)

Good news. They have removed the “central line” (a super IV in his neck that must always be hooked to at least saline to keep it open. It is used for taking blood for tests, giving IV medication - and massive amounts of blood/fluids in emergencies). They only do this when a patient is very stable and not in any danger (and may be going home soon). Although he has an IV in his arm, it does not always have to be hooked up to an IV pole - meaning he can go for a walk without his IV pole!!! (He had named it “Roscoe”).

The bad news is, one tube was suppose to be removed and the tube other capped off. (They go into his stomach to remove fluids). They had capped off the one tube, but they other one within an hour showed signs of bilirubin in it (this is a bad thing apparently) so they put the bag back on the tube and announced both tubes must stay for a while longer yet. I asked if this would delay his going home - and they said no, he would just go home with the tubes and bags attached (oh boy.). This may mean no showers for a while longer yet (more joy.)

Tentatively, the doctors are thinking he may go home Saturday (tomorrow) but there is one major kink in that plan - me. I have a cold and possibly Erin too. I got sent home yesterday and told not come today until this afternoon. The risk of his coming home at this time may be too great and (believe or not) our preference would be to wait until Monday. He will be high maitanance - and if his primary caregiver is contagious…. His immune system is so weak right now, a simple cold could do major damage.

He is going to see Ear, Nose and Throat doctor this afternoon (which is why I am going in then). It will be interesting to hear what they have to say. He is having a Cat Scan right now to see how his liver is progressing.

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Saturday, Sept 23 2006 11:15am (T+ 18Days)

18 Days after his liver transplant surgery - Scott is coming home!!! He still has a long way to go but

He would love to see folks for short visits. Please make sure you are not sick and call first so he does not have too many visitors at the same time. Hopefully he won’t catch MY cold.

Martha

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Sunday, Sept 24 noon (T+19Days)

Scott is in indeed, home. Since Marcus felt bad about leaving a week and half ago and “leaving a man behind”, he came up to the hospital yesterday so he could leave with Scott. (Of course, all filmed by the BBC). It was great to see them walking out together (then they got back in their wheelchairs). We had 3 bags full of medicaitions, bandages (for his tube drains), pads, gloves, etc.

He requires an amazing amount of “maintance”. Glucose testing and insulin 4 times a day. A total of 32 pills (14 different kinds), at 5 different times during the day (some on a full stomach, some on an empty stomach). Dressing changes. He has a “bag” that holds bile and a “bulb” that holds fluid that must be emptied and measured every couple of hours. Temperature and blood pressure to monitor twice a day. And everything must be recorded. Plus meals (at predetermined times so as to not interfer with the medications) and extra cleaning. .

But he is getting around great! He managed to walk up the stairs (first time) slowly but surely this morning for a shower (that felt really good, and he looks more like “my Scott” with clean hair and a shave). We had our first mess. His “bag” popped open (got caught on a chair) and spilled stuff all over the new floor. So I guess I need to mop today too. He did not sleep well last night, (part of that is we had dinner way late). But he thought the new bed was comfortable.

We have our first “clinic” appointment next Friday. Apparently, it is good idea to bring 24 hours worth of medications with you to clinic and an overnight bag. It is not unusual to show up for routine 15 minute appointment - and get admitted for a few days. They want to keep the medications just high enough to prevent rejection - and the only way to know what that level is is to let him start to go into rejection. (Which requires a short hospital stay). So I doubt we are done with Nelson 7 yet.

Tomorrow sometime a home health care nurse is suppose to come, check how we are doing, take some blood (one less trip to blood lab where he could catch something) and give some advise.

Visitors are welcome. Please call first so we don’t end up with too many folks at one time. Flowers / plants are discouraged since they might have mold or fungi. Your smile and time is enough of a gift. (And you don’t have to pay for parking!)

See Scott’s comment in the comment section

Shannon said to say “Chicken Butt”. (I don’t know why - she is a teenager, she isn’t suppose to make sense).

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Tuesday, Sept 26 (T+21 Days)

Two steps forward, one step back.

Do not panic. There is a herd of six foot killer rabbits heading in your direction. Do not panic.

Do not panic, but Scott is back in the hospital.

This morning he started running a fever and around mid-morning it had spiked to about 102 degrees. We called the transplant office and they said they need to admit him to see what what was wrong. The good news is it is not anything like pneomnia or the surgery site infected. As a matter of fact, his fever was starting to go down this evening. ( He actually felt cool this evening when I left.) I suspect he had a mild infection - and his body is successfully fighting it. Hopefully, he will get to come home tomorrow. If this gives you a clue - he actually took a shower this evening before they put the IV in.

Scott’s liver enzymes are slightly elevated. If they continue to go up he may have to have a liver biopsy (not fun). But this is unlikely.

Otherwise things were going pretty good here at home. We were starting to get into a routine taking care of everything. It was very nice to have him home. Sigh. The home health care nurse was suppose to come today - but we left for the hospital before she got here.

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Wednesday, Sept 27 (T+22 Days)

Scott is still at the hospital but doing good. His fever has continued to be down but we think the doctor has pinpointed the infection. Scott’s back back was hurting - right where the tube goes into his side, travels around his back, and into his liver. Apparently the tissue around the T-tube is infected. He is now on a new dose of antibiotic which will hopefully get rid of the infection.

If he continues to do as good as he is now (or better) he should go home tomorrow.

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Thursday, Sept 28 (morning) (T+23Days)

I just talked to Scott. They have found another area that is infected. The bag that contains the bile from his liver also contained bacteria. I guess this means there is some infection in his liver as well. Also, his fever is back up again even though he is on extra antibiotics.

I guess this means he won’t be coming home today. Sigh.

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Thursday, Sept 28, evening (T+23Days)

Scott is not coming home for a few days

His fever was about 102 most of the day and his side was hurting a lot.

Hopefully the antibiotic will kick in soon and he will start to feel better. But he will probably be in the hospital “at least a few more days” (at least most of the weekend, I think).

He would love to have visitors or phone calls if you can’t make it. (He has his cell phone with him). His phone number at the hospital is 410-502-4398. He back in Nelson 7, room 795.

I am considering taking Saturday off and taking the girls to the Ren Fair.

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Friday, Sept 29 morning (T+24 Days)

I just talked to Scott - his fever has broken and has been back to normal for about 12 hours now. The pain is back to more normal levels and he can lay on his back again! (Although sitting up slightly is still more comfortable). All this is a good very good sign that antibiotic has got this infection on the run.

He is not coming home today, but I think my plans for going to the Ren Fair tomorrow may be messed up

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Friday, Sept 29 Evening (T+24Days)

Although the antibiotic is working, the infection was more widespread than orginial believed. The blood cultures also came back postive for infection. The current plan is to “monitor” Scott though the weekend and if all goes well he will be release from his current incarceration on Monday at the earliest.

I am not going in on Saturday (I am going to the Renissance Fair with my daughters) so it would be wonderful if folks could visit him. Please call first so not everyone goes at the same time. 410-508-4398. (and make sure he is not scheduled for a test at that time). If you can’t make it for a visit, just call and visit with him.

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Sunday, October 1, evening (T+26 Days)

Shannon, Erin, and I went to the Renissance Festival yesterday. We got to see one of our favorite groups called the Medieaval Baebes. We already had all of their CD’s, but they had a DVD. We bought that and had all the “Baebes” sign it “To Scott, Get well soon”. He thought it was great!

All day Friday and Saturday, Scott was fever free - and we thought we had the infection on the run. But the fever came back Saturday night, and at lunch today, his fever went up again - and he did not know it. He got up to go for a walk after lunch - and almost passed out. Apparently he starated to go into shock. His temperature was about 103. His pulse was racing, etc. They did an EKG in case the infection went to his heart, but his heart was fine. Fortuantely his temperature started going down right away. When I got there he was feeling better and sweating profusely. He took a walk with me after dinner - and did fine.

Apparently, fever spikes like this are not unusual when the patient is on immune suppresent drugs. But they are un-nerving. We shall see what happens.

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Tuesday, Oct 3 - 6 am. (T+28 Days - 4 weeks exactly)

There are good days and bad days - this is not one of the good days.

Last night, because he was still having fever spikes, they went in and replaced the “T-tube” that goes into his side, through his liver, and into his small intestines. When he came out, he started shaking and his started fever spiked again. It was interesting to see one from the very beginning. Apparently when the “mucked around in his bowels and bile” they stirred up a bunch of the bacteria. But they gave him lots of anit-biotics right there and “stablized him”. His fever was suppose to come down. But when I left he seemed a little better.

He just called at 5:30am. His fever is up, pulse was up, and now his blood pressure is going low. (aka he is not stable). He was being moved to back ICU. The ICU units where he was were full so they are moving him to Weinburg ICU (normally for cancer paitients). I don’t know details, but I know I probably won’t have a cell phone. As soon as I can get the girls on the bus or get someone else to get them on the bus - I will head up there. Today would be a good day for prayers……

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Tuesday, October 3, evening (T+28Days)

You know feeling when you have been on a roller coaster and when you get off you feel sick to your stomach for hours afterwards? That has been my day today. BTW, how was the weather? I was at the hospital from dawn to dusk…

Scott has a fever just north of 101 most of the night and then early this morning his blood pressure started to go down. When his’s blood pressure was down to about 70/30 at around 5 this morning they decided to move him to Intermediate Care Unit so he could be better monitored and get faster care. There was no room at the ICU he was in before so they took him over to Weinburg ICU (which is normally for cancer patients) That turned out to be a good move because he got worst. When I got there his fever was gone (they were givng him a “cocktail” of antibiotics), but he now had a central line again and a least two other IV’s. He also had an “A-line” so they could monitor his pressure/heartrate/oxygen lives internally. They added a foley line shortly after I got there (NO, NOT THE POLITICIAN!! The term “Foley Fallout” has a whole different meaning in a hospital. A Foley is a cathader for urine. Enough said).

Anyway, they decided he needed to units of whole blood (they explained that since they had pumped him full of so much fluids to keep his blood pressure up, they had diluted his blood). But when they tried, his back started spasming, then blood pressure shot up to 200 something over another big number (enough that the alarms were going off for being too high) and then his breathing got very shallow. They stopped that bag of blood, gave him some Benadryl. He seemed do better for a short while. It went low again to set off alarms again (about 70/30 again). They adjusted his medications to bring it back up. Then they started the second bag of blood, this one burned going in. They had to stop it too. Many times that morning his blood pressure was so low it would set off alarms, then his back would start spasming which would cause the pressure to go so high it would set off alarms. That was my roller coaster ride all morning. I am glad the BBC team was there filming it - or I would not have believed it had happened. It would be down for a while, up for a while, then stable for a while. He did get an ultrasound to find out about fluid flows through liver and later cat scan to find out if there were any pockets of fluids that might contain the infection.

But this afternoon the “stable” periods lasted longer and longer and finally the fluctions stopped entirely. But he is completely whipped out. He was hallucinated due to everything (Chuck - apparently you visited him today ) and was not even aware of when I left. I just called the nurse at 8:30. He is still stable (and still drifting in and out). They are trying to slowly lower his blood pressure medications and hopefully his blood pressure will not go down again.

They have changed his antibiotics many times trying to find the “right” cocktail. Some of the bacteria are proving resistant to many of the antibiotics. He never did get the whole blood.

I want to give a big Thank You to my mother for watching the kids until late last night and again early this morning. I also want to say Thanks to Sarah B. for getting some much needed cat food (and the cats appreciated it!!)

Hopefully tomorrow will be better. But if there is a “pocket of infected fluid” they may want to due a proceedure to remove it - or possibly even surgery.

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What day is this.??? Oh yeah,

Wednesday, Oct 4, early morning, (T+29Days)

I just talked to Scott’s nurse (no phones allowed in ICU). He is doing better and has been weaned off all the medicine to regulate his blood pressure. That is a good sign.

The T-tube the replaced on Monday is not draining correctly, so there is talk of going in for a fourth time to move it around and get it draining right. Hopefully not stirring up any bacteria this time…

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Wednesday, October 4 evening (T+29Days)

If you any day that he did not get worst is a good day, then today was good. His blood pressure was stable, his temperature was down (actually slightly lower than normal - around 96 degrees??) and no procedures. But he was wiped out, he could only sit up for few hours and walking 10 feet was almost too much, and he was grumpy (apprently that his normal after being returned to ICU. Go figure.).

He did have a fever spike last night, not real high, but it did mean that had to do ANOTHER blood culture. He is apprently running out of good veins. One student doctor and a resident decided they needed to learn to do blood cultures - on him. He was so sore and bruised afterwards. They had to dig to find a vein. I hope the bacteria is gone - ’cause he can’t take much more of this.

If his temperature and blood pressure remain stable, he will be back on Nelson 7 tomorrow. I am sorry, I am tired and a bit negative minded right now also.

Please his mood could really use some improvement. He would really appreciate, comments to the website, a phone call, or visits. I copy the comments onto a flash drive and let him read them on my laptop.

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Thursday, Oct 5 evening (T+1 MONTH)

Thanks everyone for the comments - they cheered me up and I am sure they will cheer up Scott too. We both need some cheering up.

He is still in ICU (but technically he was down graded to Intermediated Care Unit). He was not moved out of ICU, not because anything was wrong, but simply because they wanted to keep a more watchful eye on him. He is a little high maintance right now because he is so immoble.

I found out that when you have an infection that starts to effect other systems, that is when it is considered “Septic”. That is what he was on Tuesday. But the antibiotics are working now and he is now stable.

Scott is still weak, sore, and dis-hearted. Just sitting in a chair for few hours wears him out. Walking more than a few feet - not an option. But nothing bad happened and he if all goes well, he should be back in Nelson 7 tomorrow.

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Fri.,Oct 6 afternoon (T+1 month 1 Day)

Good news!! Scott (daddy)can be found in Nelson room 781. He can be reach at (410)502-4739. He is no longer in ICU!!

P.S. this is Shannon (older daughter) speaking the last time I tried to add something it went in as a comment.

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Friday, October 6 evening (T+31 Days)

The comment section has been moved to its own section. Please leave us a comment!!

Yes, Scott is indeed back in Nelson 7. (see note above for details) His mood is much better.

He has had no temperature or blood pressure fluction in several days. He even got up this evening and went for a short walk once around the nurses station but that wore him out. His is not eating as he should but he is getting more of an appetite.

He is currently on FOUR antibiotics. Three of which are IV only and will continue for at least 2 weeks. The other is the one he was on to prevent infection before this started and will continue. But today they mentioned they may send him home with a “Pic-line” so that he can continue his IV treatments here at home. But don’t expect him home in the near future. They are going to keep him there for a while to keep an eye on him. He was VERY sick for short while there - and it will take him a while to get well. The sepsis or the antibiotics may have some unforseen consequeces and may take some time to be noticed. (Example, today they did an EKG in case there was damage his heart. But apparently it is ok.)

I know I sound paranoid. But there is a spot on his back that still hurts. This was the spot that was the source of one the infections - and may not be clearing up with the antibiotic. But the good news is, he had at least two different bacterial infections at the same time. The nasty one that caused him to go into sepsis, seems to be clearing up. The one that is probably in his back (VRE) and is more resistant to the antibiotic is not nearly as dangerous. I am not 100% sure I understand this all myself, but the doctors seem to think the worst is behind us.

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Saturday, October 7, (T+32 Days)

We had a really good day. He was able to take three walks, no fever, and less back pain.

They will remove his central line tonight and he will be down to one IV in his arm. So the tube count is coming back down! Also, one of the tubes in his side came out ! No more “J.P. line” . (we affectionitly called the “Holy Hand Granade” .) He will keep the foley line for little longer since they are giving him strong diretics to get rid of all the excess fluids.

Scott also received two units of platlets. Apparently he was quite anemic.

The girls went to go see their daddy for the first time since he has gone back in the hospital. A little chaotic, but well worth it.

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Sunday, Oct 8, morning, (T+33 Days)

I just talked to Scott. He is continuing to feel better and get stonger. However, there was some confusing news. Even though he is doing much better, some of the cultures are still coming back positive for the bacteria. The doctors are little confused too. But since he is obviously doing well right now, I think they are going to do a “wait and see” and more testing of course. So, don’t start planning that coming home party quite yet.

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Sunday, October 7, evening (T + 4 weeks, 5 days)

I just talked to Scott. He had a CT Scan today which showed a small pocket of fluid near his liver. They belive that the fluid is coming from his bile system, aka if they just syphon it off it would just refill. So they are going to go in tomorrow and put another tube that will drain outside of his abdomen. (Much like the JP tube they just removed). Sigh.

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Monday, October 9 evening (T+4 weeks, 6 days)

Today was a good day for Scott. First, his voice is the strongest I have heard in a long time. For short periods he even sounded like the old Scott. Then it would get horse sounding again, but still fairly strong. He believes it is a combination of getting rid of the excess fluids accumlated when he was sick last week and getting a good night sleep lying down (possible due to less fluids).

He felt fairly good, except for hungry. He was “NPO” (stands for some latin phrase meaning “Nothing by mouth”) due to needing a procedure. It was decided not to put a tube in his side, but simply syphon it out of his back. They got a grand total of 2 1/2 cc (about a teaspoon). But it looked gross, probably due to it was probably infected. It will be tested for all kinds of things. His back still hurt, and 2 1/2 cc’s of fluid should not have caused all that. It will be interesting to see how it turns out.

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Wednesday, Oct 11 (T+5 Weeks, 1 Day)

In this case, no news was good news. The last two blood cultures have not come back positive (yet, apparently they are still working on them, but they test for the obvious first). If this continues, they will put a pic-line into Scott , monitor him over night and send him home. Maybe early next week, possibly sooner. This will mean adminstering IV antibiotics at home, which could be a pain in the neck. But we will cross that bridge when we get to it.

I actually went to work yesterday. Scott got two units of whole blood, and I do not have an understandable reason of why, since his red blood cell count was supposedly normal the day before.

Scott desparately wants to go outside today and enjoy some fresh air in the courtyard. If I have to break him out, I will make sure that happens. He wanted to yesterday, but they came in and said he needed the blood and could not leave the floor - and that took 8 hours. Of course, tomorow it is suppose to start getting cold.

(Erin going camping this weekend with the girl scouts this weekend. I hope it is not too cold.)

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Wednesday, Oct 11 evening (T+5 Weeks, 1 day)

They mentioned him going home sometime soon if he continued to have no fevers and no positive cultures, and Scott and I saw the light at the end of the tunnel and started to get excited. It was the light of an oncoming train.

Scott started to run a fever again today. We managed to sneak outside to a courtyard for a few minutes, but turns out that was when his fever was starting to go up and he got very cold. But he enjoyed the fresh air. We got back and he actually threw up. FYI - anytime your fever goes about 101 or above, you are considered “febril”. His got up to 102, before coming back down. He felt better this afternoon. But he sure has the doctors puzzled.

They did a cat scan and did a blood culture this afternoon. The Scan ruled out pneumonia, and they saw a small pocket of fluid between his back and liver. Tomorow they are doing a test to rule out an infection of the heart.

I just talked to Scott this evening and he is having another fever spike with chills etc. But the chills had subsided when I talked to him. And his blood pressure was still normal.

Sorry to bring you more bad news, but needless to say, I am a little depressed myself.

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Thursday, Oct 12 (afternoon)(T+5 Weeks, 2 Days)

Scott’s fever was about 103.5 all night. As a result, this morning they moved him to ICU (again). Originally, they were going to move him to Intermediate Care -but changed their minds and sent him to ICU instead. (FYI- he is in Surgical ICU in Halstead 7). So they spent the entire morning putting in an “A-line” (monitoring) again, and a Foley (catheder) again. They were just going to give him some extra IV’s to get all of the antibiotics (he is up to 5 now) and fluids into him. But they could not find a vein, so he has another central line in his neck, again. His fever has come down to about 101.5 and he is completely out right now. But his blood pressure has remained stable and he has not had chills since last night.

He is going for a procedure later today to look at the blood flow thorough his liver and posibly put a stent into his artery that supplies one side of his liver. Apparently something did not look right on the latest ultrasound, and they are worried that something is wrong with that blood supply. Worst case scenario, they will remove that part of his liver if it already irreversibly damaged. But what is left should be enough to get by, apprenently.

Even his Dr Maley (who is usually Mr Confidence) looks concerned.

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Thursday, evening

I have better news. Although he was very sick this morning (fever got to 104), and he was almost catatonic this afternoon, but things got better. He had a procedure to look at the blood supply in his liver - and