Lots going on....

...today they were concerned that John is sepsis. Not good news, however, urine cultures and the last abdominal cultures were negative. Tonight they're giving him lots of fresh frozen plasma to get his clotting factor down. If it is, they will go in via endoscope tomorrow and remove the stones. The danger is bleeding, of course, and they may have to do some cutting to remove them. They are also going to remove the drain, remove fluid for cultures and insert it in a new area. The drain's been in for 5 days and that's just an invitation for more infection. I think that's everything for now, but I'm sure I'm forgetting something.

Keep praying!

John looked like crap today. Hard to imagine he seems to be slightly more comfortable. He didn't sleep well, as usually is the case in a hospital. And he is kept mighty busy during the day. Today he had a visit from the social worker who spoke with me yesterday and some physical therapy (very little since he's pretty weak). He also had a visit from a speech pathologist to check his swallowing ability. Tomorrow he undergoes a swallow study. I don't know what's all involved with that. He's been limited to a soft diet and he's not real thrilled with that. His liver specialist told me today that he thinks another infection is brewing. His white count is up again slightly and there's a stone in a bile duct. They're going to do an MRI. This may require an endoscopic procedure, which is very risky for someone in his condition. We'll know more tomorrow.

On the bright side, I ran into an old friend at the hospital. She's a nurse-practioner at UPMC and she was passing the elevator as I was getting off. It was great to see her and we'll meet for lunch or coffee one day this week.

Good day, bad day

Yesterday Anita and Walt visited John. He was still in ICU waiting for a bed. Anita said he looked good, but was irritated. He was hungry but they are concerned about his swallowing, something that has been an issue since his head injury. So he's getting soft foods and liquids with thickener. Yum.

When I went down today, he was in a regular room and sleeping. When he woke up, he was VERY uncomfortable, complaining that his stomach hurt. He tossed and turned, tossed and turned...just couldn't find a good spot. Didn't eat much either, but a hematologist who checked in on him said he could have a milkshake. He liked that idea, so I got him a strawberry milkshake and he drank most of it.

He is still draining, but they only allowed 3 litres over 8 hours. Since his BUN and creatine were good, I think they were deciding to speed it up a little. The sooner the better, in my opinion.

I also spoke with the social worker from the transplant team. She's assessing his support system, living arrangements and other things related to post-transplant care. That's IF he gets approved and actually gets a new liver. It's a daunting task after surgery; he will require someone to be with him 24/7 for at least a few weeks. The follow-up care is pretty intense, but worth it. More to come!

Happy anniversary to Anita and Walt, who married on our parents' anniversary.

Did I say piggy-back?

I meant pigtail. My brain is fried. This is what a pigtail drain looks like:

It was a nerve-wracking day. One of the docs was becoming very concerned about John's condition. They had given him plasma and platelets during the night, but his blood still wasn't thick enough for the radiologist to insert the drain. And the volume of fluid in his body was increasing, causing a strain on his kidneys and respiratory system. The doc called in the doctor from the Transplant ICU who evaluated him and determined they would be able to do the drain in the ICU.

Aunt Esther and I were able to see John after they drained the first litre. I say the first, because when I called around 9:00 pm, he was on #4. If you think that's a lot of fluid, that's because it is! We stayed till the hockey game was over (Go Pens!). His vital signs are okay. Heart a little high, but his blood oxygen levels are respiration rate are good. He will remain in ICU for a couple of days, then move to regular room where they hope to be able to finish evaluating him for a transplant.

Tomorrow Anita and Walt will visit John. I am exhausted. I need to spend some time with the dogs, do laundry and just rest. I'll go back on Monday. Thanks SO much for your prayers!

Another day....

Yesterday John's clotting factor was not in the safe range to tap. So during the night they gave him more blood products. Unfortunately, that also creates more fluid, so they consulted with a doctor from the transplant ICU to see if they would be able to tap him there. So that's where he's at right now. They will insert a piggy-back drain and monitor him in the ICU till they feel he can go back to a regular room. Dicey situation, since there are risks associated with inserting a drain with someone in his condition, but more risky to keep him full of fluid....it could cause problems with his kidneys and respiratory system. If there are no complications, the draining can begin which I'm sure will be more comfortable for him. Once he's completely drained (could take a couple of days), they will scan him to find the source of the infection. One baby step at a time....

Finally

John went to UPMC mid-afternoon and we arrived about an hour later. He's resting comfortably and 2 doctors have already been in to see him. He's doing so much better than yesterday. He looked terrible and the doctors scared the crap out of us. Once they backed off all the blood products, he wasn't so full and congested. Tomorrow they'll insert a catheter and drain the excess fluid over a couple of days. They have no qualms about doing these things...they deal with it every day. John was watching the hockey game when we left. Going back down for several hours tomorrow.

Hurry up and wait

John is going to be transferred to Univ. of Pgh tomorrow morning. Sigh. After the docs said he needs to get there ASAP. We waited all afternoon and evening for the go ahead. But, he is stable and if his condition worsens they will LifeFlight him there. It's the typical gyrations when you're dealing with a specialty such as liver disease. News to me. We're praying he remains stable overnight and can go in the morning by ambulance.

The reason Valley GI doesn't want to tap him (remove fluid from his abdomen) is because he needs A LOT of fluid removed and they don't feel comfortable doing it; it's a high risk procedure for someone in his condition. Jameson Hosp. is capable of doing therapuetic tapping, but not the volume that's required to be removed for John. At UPMC, they do this procedure often in liver disease patients and can monitor him closely afterward. In addition, they will continue evaluating him for a transplant while he's there. Time is of the essence.

They continue to give him albumin to assist in removing fluid. He had soup and sherbet for dinner, so he does have an appetite, which is good. He seemed more comfortable when we left this evening and we prayed with him before we left.

Your prayers are GREATLY appreciated by John and us. I'll update you all as often as I can.

I'm learning more about blood than I ever wanted to know!

John is getting a little better. They have pumped him up with blood products and they're going to tap him again. He's very restricted on fluids...1200 cc, which is about 48 oz. That includes all the blood products, so they give him albumin to help draw water out of his tissues. He's eating better and getting a little stronger. Maybe he'll go home in a few days. Still waiting to hear from UPMC. If they don't call today, I'm going to call them tomorrow.

I was able to get a script for my quarterly blood work faxed to John's hematologist. Going to do that today before going to the hospital. I'll see my oncologist as soon as I get back to Florida.

Stella has been quiet the last two nights so I'm hoping that was just a fluke!

What a difference a day makes

Thank God, John is coherent today. He is also feeling better. Not surprising, given the amount of antibiotics, blood, plasma, platelets and albumin he's been getting. Also sodium chloride, Lasix and his current medications. All day today and up to midnight, they are taking his blood pressure every half hour. They need to ensure with all the blood products he's receiving that he's not retaining too much fluid. A delicate dance, you could say. He was able to feed himself today and ate fairly well, so hopefully he'll start getting some strength back.

I almost always bring the dogs with me when I visit John at his place. Since I've been spending a lot of time at the hospital, the dogs are feeling a little separation anxiety. Last night, after we all went to bed, Stella sat at the bottom of the stairs and cried. Off and on, till about 2:40 in the morning. No one got a good night's sleep. She was acting like a new puppy, for goodness sake. I spent more time with them today, and I'm about to go to bed, so I hope she doesn't put in a repeat performance tonight!

Thanks for your prayers. More to come tomorrow.

The latest

John had a rough day yesterday. Pretty out of it. Confused, belligerent, uncomfortable. Sigh. They are almost certain he has an infection again. G.I. doc tapped his stomach bedside. She wanted more cultures and it relieved some of his discomfort. He's on antibiotics. We may have him transferred to UPMC if he doesn't improve. His vitals are stable, but he doesn't have much of an appetite. I hope with the antibiotics that he will feel a little better and with it tomorrow. Keep praying!

John was slightly better today. Still out of it but not as bad as yesterday. His white count is lower so the antibiotics are working. They have him on IV Zosyn which I'm not familar with but it's in the penicillin family. They also are giving him albumin since his diseased liver isn't producing enough of it. He ate a little more than yesterday (he's not feeding himself) but is having trouble swallowing. A speech therapist will see him. Could be he's weak and he had trouble swallowing following his head injury in '89. More to come tomorrow.

John update

Hope you all had a wonderful Easter. I did.

John had his stomach tapped again on Monday and he's been doing fairly well. This morning, though, he woke up and had trouble getting out of bed and the site where he was tapped was leaking. His doctor had him admitted after some tests. A concern is infection. They drew some blood cultures and those take a couple of days to grow. He slept most of the day which is good. He looked much better this evening when Van and I left. We did receive some good news this week: UPMC is moving forward with evaluating John for a transplant. They are scheduling some additional tests (stress test, EKG, etc.) which I hope can be done in the next 2 weeks. I need to head back to Florida at some point.

Loooong week

It's been a long week, I tell you! John was to get his stomach tapped Friday, but the radiologist cancelled the procedure because his protiem level was too high. I don't know what this is yet, but I will find out. I think it has to do with the clotting factor. Anyway, that was a wasted trip. It was an ugly rainy day, and I (and I know John) would rather not have had to run around in a wheelchair (him riding and me pushing).

I'm tired, but what else is new. I hope you all have a very blessed Easter!

Shame on me

I have been spending way too much time on Facebook and zero time here. I will probably do short blurbs more often.

John is doing okay. Still waiting to hear if UPMC is willing to evaluate him for a transplant. I think they are still waiting for some medical records.

The dogs are behaving, Levi is in heaven at Aunt Esther's and I'm very tired, but okay. I spend as much time with John as I can. I've been playing 500 Bid with him and two other folks at Greer House about 2 times a week. It's fun to play cards with real people instead of virtual ones!

Not sure when I'm returning to Florida. It depends upon what we hear from UPMC.

That's it for now...I'll do my best to catch up here a little at a time. xo