Thursday, April 26, 2012

Why is it?

Why is it that Tom's biggest health challenges seem to come in the middle of the night, or on the weekend, or when the doctor is out? About 3:30 this morning I heard Tom stirring. When I got out to the den, he was panicked that he couldn't get up. My thought is that he has so much fluid in his abdomen and legs, he simply cannot lift himself up. His response was "I don't know", which I've been hearing a lot lately. I worked from home today so that I could help him get up when needed. Mostly it's his legs and he can't move them on and off of the ottoman. I called Dr. Rutland's office as soon as they opened to beg him to arrange for Tom to get a paracentesis. Dr. Rutland normally works half days on Thursdays but today he wasn't in at all. The nurse called back and told me to double the amount of lasix Tom was taking - which they had already doubled yesterday. We were told if Tom was not better tomorrow that he would need to be admitted to the hospital and get IV lasix. Tom already had an appointment to get bloodwork done late this afternoon. I reminded him of this about 10:30 am. He told me he would need to take a shower. I thought yeah, right, he's not going to be able to do that. But, he did! I told him to sit down and rest afterwards and then we would go to the doctors office. He decided he wanted to go right then, so we did. While I was waiting on Tom to get his blood drawn, UAB Liver Center returned his call from yesterday (he had called them himself to ask about the fluid problem). I told the wonderful nurse that is so helpful and does all the MELD calculations, where we were, what was going on with Tom and Dr. Rutland's plans. She told me she would call Dr. Eckhoff and then call me back, which she did 20 minutes later. She told me we needed to be at UAB at 6:30 am on Tuesday for lab work and at 7:30 am, Tom would have a paracentesis. Then, she said we would need to be at the Kirklin Clinic at noon on Wednesday for an appointment with Dr. Eckhoff so he could check the shunt. So, the reservations are made, the house/dog sitter has been booked and I've moved some work stuff around. The only thing not rescheduled is my hair appointment - which is pretty important too :-) Now, we just have to make it until Tuesday - prayers are needed here. Tom still cannot lift his legs on and off the ottoman which means I need to stay with him pretty much all the time. He could put his legs down but that makes his feet swell even more so we're kind of stuck between a rock and a hard place right now but we'll get through it. I am so relieved that we have a plan of ACTION! As inconvenient as it is to go to Birmingham in the middle of the week, I think this will make a huge difference in how Tom feels (it better). I'm still worried about the shunt, I really want it to be working and I have no idea what will happen if they determine that it is not. Two of my devotions this morning talked about taking things one day at a time so I will focus on today. Tom has really been discouraged (translation: in a bad mood) lately. I think news of a plan has helped. The biggest gift was a visit from his friend Dave on Sunday night. It really lifted Tom's spirits. Tom still has some itching from an unexplained rash but it's not as bad as it was. He's been really cold again too which has been miserable for me - I can't sleep when it's that hot. I wonder if that's related to the fluid? The heat and lack of sleep allowed me to get a good bit of work done today, I'm pretty excited about that. I was on a roll this morning and again this evening - it feels good to accomplish something! Ok, it's past my bedtime so I'll sign off. Thanks for keeping us in your thoughts and prayers.

Thursday, April 19, 2012

DOCTORS OFFICE RECAP

Both doctors said relatively little about Tom's "condition" and wanted to wait until the blood test results came back.  Dr. Rutland's nurse called this morning and said Tom's Vitamin D level was extremely low (5.9).  Normal is between 31-100!  So he will now be taking another Vitamin D supplement weekly for 8 weeks.  I told him to go out and sit in the sun!

She did not mention anything about adding back the Lasix.  Maybe both doctors want to talk before a decision is made.  If I don't hear from them by tomorrow afternoon, I will call.  I mentioned to both of them that something needed to be done about the fluid retention.  It may be that we go back to UAB to have the shunt tested and some fluid pulled off, I don't know.  The shunt was supposed to change his INR reading which would help him move up the list but it's been close to normal.

I also confirmed that UAB had received the test results for the MELD calculation.  Tom is back down to an 11.  The nurse said she would submit them today - I told her to please wait until the last possible moment tomorrow to send them in - we are still praying hard for a liver!  Still, the news is discouraging. 

Tom's doctor recommended another kind of lotion/cream to use on his rash/dry skin issue.  We must have a dozen or more different bottles and tubes of lotion.  He said Tom's liver condition is the cause - that is the answer for everything - and it's probably true, but the fact that it is a new one makes me wonder.  I guess we'll wait and see what happens.

Tom decided that he wanted to walk from one appointment to the other yesterday.  That's about two blocks away using connectors between the buildings.  So, I moved the car and by the time I got to Dr. Rutland's office, Tom was crossing the connector to that building - I was impressed - he had to have moved pretty fast.  I think it made him feel better too. 

I'm still praising God that we got Tom's confusion under control on our own.  Tom was a trooper to take the extra medicine.  It was huge that we caught it early but it could have gone down hill very, very fast.  I try not to worry about it but it's hard.  He gets very irritated when I ask him questions - but when you get one-word answers, it difficult to tell his condition. 

As I said from the very beginning, one day at a time.  God is in control.

Tuesday, April 17, 2012

BACK TO HIMSELF

Just a quick note to let you all know that Tom is doing much better today.  He took 3 1/2 doses of the ammonia medicine between the time I got home yesterday and the time I left for work today.  I hung out at home just a little longer to make sure he was on the right track.  I told him he would need to "amp up" on the medicine for the next few days just to get his ammonia level back down.

I was proud of myself for staying calm although I did have minor panic attacks at midnight and about 2 am.  It was a long night but I'm thankful Tom was willing to take the medicine.  I'm also grateful that he will get bloodwork done tomorrow to make sure nothing else is out of whack.

Your prayers were definitely the difference AGAIN!  Thank you!

Monday, April 16, 2012

A little extra prayer

I was planning to wait until Wednesday night for another post, Tom has doctors appointments on Wednesday afternoon.

However . . .

Tom is a little bit confused tonight. I talked with him about 3 and he seemed fine but when I got home about 4:45 he was having a little trouble. I don't know how much of the ammonia medicine he had today or if I could trust what he told me. He did take a full dose about 6:30 tonight and I'll try to get him to take another full dose about 10. He was complaining that his stomach hurt and he wondered if he should go to the doctor. He was pretty upset. I asked him if he wanted to go ahead and go to the doctor, his response was "I don't want to go". I then asked him if he felt he should go and his response was "I don't know". After about an hour, his stomach felt better. He didn't say he ate very much today but he did take the iron supplement at noon so that might have been why his stomach was bothering him. He's eating a pretty good dinner tonight so maybe that will help.

Tom still has a lot of excess fluid. I don't think he's doing any extra pumping and I'm still not convinced the thing is even working. I am going to ask Dr. Rutland on Wednesday if there is a option for Tom to get some of the fluid removed as an outpatient or something. He needs to get rid of some of it so he will feel better and move around easier. It will take weeks in the hospital to get it off with just lasix and albumin.

The blood work Tom gets pulled on Wednesday will get sent to the Liver Center for a new MELD calculation. Even with the fluid and probable higher ammonia level, I'm expecting his MELD score to drop again. But he still has a few more days at a 22 so I'm thinking positive and praying hard.

Please pray that we'll get over this hump and Tom's confusion will get better instead of worse.

Friday, April 6, 2012

No hospital stay

Tom had a pretty good doctors appointment today. He's not feeling great but he's a lot better being at home and not in the hospital! I think we both thought that is where he would end up.

Toms been having back pain and a rash. The doctor has added a muscle relaxer to his medication list. He also gave us an RX for prednisone but told us not to fill it until we heard from him. He has not called. I don't know if that is good or bad. Toms white blood cell count was up to 17,000 last week so I'm hoping it is back down to normal. The doc thought the rash looked like a drug reaction so I guess we'll wait and see about that. I went ahead and filled the prednisone just in case because I was already at the pharmacy and wantd him to get it ASAP if he needed it.

Not a whole lot was said about the fluid. Tom has gained about 40 lbs since being at UAB. It is difficult for him to get around. His weight hasn't changed much in the past few days. He is taking lasix but not every day. He assured me today he was pumping his shunt too. I don't know . . . I guess we'll see how he does this week. He'll be beyond miserable if he gains any more weight.

I want to thank you for your prayers for my bosses husband. He want home on Wednesday! He is incredibly fortunate. His doctor told him only 1% of people survive the kind of heart attack he had and even fewer suffer no heart muscle damage or brain damage. That is the power of prayer!

We're still praying for a miracle like that and that Tom will get a liver before his MELD score drops.

We wish you all a wonderful Easter and remember Christ's sacrifice for us. Praise God He is risen!

Monday, April 2, 2012

BUSY TIMES

Sorry I have not posted.  Actually, I've been hanging out at the hospital - but not with Tom. 

Tom is doing alright.  He is holding on to some fluid - he's gained about 30 lbs since leaving UAB.  Of course, now that we're looking at a long, holiday weekend, I am anticipating he will be back in the hospital (I'm such a pessimist).  He, of course, is refusing to hear any of it.  I tried this weekend to explain that I am a "planner" and if he can't get on top of this fluid thing, I want him to go to UAB so that they can address the issue and also check the shunt (which they couldn't do the last time because he had no fluid).  I'm not convinced there still isn't something wrong.

His doctors office called him this morning (as I was writing this) and said his white blood cell count is up and wants him to come in later this week.  He now has a doctors appointment on Friday afternoon.  He says he is NOT going to the hospital!  I told him if that's where he needed to be, that's what would happen.  It's gonna be a long week.

He has made slight progress in dealing with the fluid and his weight is down a little but I am worried that he could dehydrate his blood vessels.  I will keep a close eye on him this week.  I have neglected him much of the weekend.  On Thursday morning, my bosses husband had a massive heart attack and collapsed while running.  He received quick attention but since he was not wearing any identification, no one knew who he was until 4 pm.  By that time, my boss and her daughter were on a plane to visit Clemson.  We tried to find her a flight before she landed but she ended up driving 6.5 hours back to Nashville on Thursday night.  The outlook at the time was very grim.  They used cooling blankets to lower his body temperature and preserve brain activity while sedating him until she could get back to town.  On Friday morning they began warming him up and by yesterday he was out of ICU, off the vent and talking.  As the cardiologist said Saturday morning "this is a Jesus moment".  So, again, we have experienced a miracle.  Her husband is a teacher and coach and has touched so many people.  I ask that you pray for him as well.

I sure hope there are more miracles - Tom still needs a liver.  I continue to hope and pray that he will be fortunate enough to receive one while his MELD score is higher.  I am going to try not to worry about the white blood cell count but I do wonder if there is an infection around this shunt.  Tom has tried to be more active and I think it's made a difference.  I hope that this WBC news doesn't get him down.