Big move planned

Not, unfortunately, to rehab. But tomorrow morning, Dad will most likely be moving to another hospital--St. Joseph Medical Center in Towson. When Mom got in to visit Dad today, she discovered that the stomach leakage had gotten worse and the nurses weren't staying on top of keeping him as clean and comfortable as possible under the circumstances. So after consulting with his main doctor, who recommended a particular GI specialist at St. Joe's, they made the decision to move him. The move will most likely happen early in the morning (I hope before the predicted winter weather sets in) and I sincerely hope and pray that this new doctor will be able to solve the problem so Dad can get the heck OUT of any hospital and one step closer to home.

No word on the swallow test. I'm assuming that with the move planned, any plans for the test were put on hold.

Another swallow test

Please keep Dad in your prayers today! The hospital has agreed to do another swallow test on him. If he's able to pass this and thus start getting food by mouth, all of the problems with the stomach tube will no longer be problems.

After I posted a few days ago that they got the leakage around his tube stopped, it started up again, just as bad as before. The doctors were stumped as to what to do and were talking about completely new surgery, new hole, new tube, etc. and allowing the original site to heal up. Given how long it took Dad to recover from the first surgery (remember all the pain he was in, and how long it took him to start receiving nutrition afterwards?), this isn't an option any of us like.

So a lot is riding on today's test. You'll remember that he passed the swallow test once before, but then they thought he was doing "silent aspiration" so they stopped giving him food by mouth. Another time they tried the test and he didn't pass because they said he wasn't able to swallow twice; he says he wasn't given enough liquid to make it possible for him to swallow twice. Since then, the hospital has been unwilling to even try--they are so nervous about aspiration and his chances of getting pneumonia again that they've been saying they won't even do a test again and that he'll need to wait until he's in rehab and his neck muscles stronger before they'll even think about doing this and allowing him to have food by mouth. But of course he can't go into rehab if his stomach tube is acting up! So please pray that he passes today's test with flying colors!

I'll update later when I know the results of the test. By now we know how hospitals work--if they said this morning they'll do the test, it doesn't mean it'll happen soon, so we may be waiting a while.

Yet another setback

Things were looking great for Dad early this week. First the success at getting his metoprolo through the G tube, then they easily got him off the Foley catheter. The hospital had warned us that his muscular control might not be the best so he might need to be re-toilet trained, but in that they turned out to be wrong.

But then two days ago, his J tube developed a blockage. At first we thought (based on what the nurse said) that the hospital had messed up and gave him his medication through the wrong tube, but it turns out that the tube had a kink in it. After debating a bit (and being unsuccessful at unkinking the tube) they decided to try giving him his food as well as his medications through the G tube (you all have this straight yet? G tube goes to the stomach and is attached to a pump so that his stomach doesn't become overly full and cause the nausea and vomiting that has plagued Dad since he got out of CICU; medications are given through this tube, and the pump turned off for a while after so that he can absorb the medications. J tube goes directly to his intestine and that's what he gets food through). They started off slowly and all went well for a while, until they put in a new tube yesterday after the old one fell out during a bath. Unfortunately, he almost immediately started leaking around the new tube and didn't stop. Stomach acid all over his abdomen--very painful and messy--plus he's off nutrition again until they can figure out why this is happening and get it to stop.

They took him down for an x-ray in the night to try to figure out the problem, but once they had him there, they realized they needed a doctor to oversee the process. So they will try again this morning. Poor man has had no food for at least a day, acid leaking all over him, and they they disrupt what little sleep he could manage by taking him on a useless trip to get an x-ray. To make matters worse, he's on his own today since we're getting snow and Mom is concerned she might get stuck on the roads (a legitimate concern with the hills she has to navigate to get home) so there is no one there to knock heads together to get action. Katie says she's going to try to make the trip now before the roads get too bad, so I'm keeping my fingers crossed that she gets there safely.

I hope they figure this one out soon so we can get him out of the hospital! We're so frustrated--on Monday, he was looking great, agreed that he felt and sounded stronger, and seemed really optimistic, and now this.

Editing to add.......
This afternoon, they got the leaking stopped. As I understand it, there is a disk around the stoma and they had been taping under this disk. One of the doctors instead taped him up on top of the disk really thoroughly and as of now, it's containing the leaking. Dad says he had a pretty good day, other than that. They had him up in a chair for a while and were planning to get some nutrition in him so it looks as if everything is back to where we were before!

It worked!

After the success with giving Dad his medications through the stomach tube, Dr. Hiatt decided to give it a try with the metoprolo. "I trust you," she said to Mom, having not researched the question of the medication's solubility herself but taking Mom's word for it (through the research done by family and friends who heard of the dilemma). As you can see from the title of this entry, it worked--he absorbed the medication just fine when it was given through the stomach tube and dissolving it in water also worked just fine.

This is a huge leap forward for getting Dad out of the hospital. All of his various infections have cleared up (no more pneumonia, c. diff, urinary tract infection, etc.), he doesn't have to receive any medications through IV, so I think now it's just a matter of getting him off the Foley catheter (draining his bladder; don't think about it too much) and he'll be on his way to rehab!

Keep praying for no more complications and a speedy discharge!

... but Maybe a Little Hope

I just got off the phone with Mom and things aren't quite as dire as they were last night, thank heaven. Helpful friends and relatives have been researching Dad's medicine (metoprolol, specifically -- and it took me about five tries with Google to get the spelling right) and have found that it is highly soluble in water (and confirmed with the drug company itself that it's stable in solution), so they should be able to get it into his J-tube. Dr. Hiatt is looking into whether the stomach is needed for the digestion and absorption of it, or if putting it into his intestine in his J-tube would be all right.

Meanwhile, the gastroenterologist came by and decided to try putting Dad's other medications into his G-tube (the stomach line). They turned off the pump for an hour, put the medicine in, and then were supposed to put the pump back on an hour later. Remarkably, the medicine stayed down and Dad reported no upset stomach symptoms at all! And they forgot to turn the pump back on, so it was still off several hours later, with Dad still at a full ration of "food". Mom called the hospital when she got home to remind them to turn it on (she'd forgotten to point it out sooner), since we don't want to push our luck right now. But there is now an itsy-bitsy, teeny-weeny hope that Dad might be able to start getting his medications long term in some form other than IV, and that would mean he could go to rehab. And in rehab he could start eating real food again and maybe get even stronger.

I know we say it every time, but please keep praying!

Catch 22

I talked to Mom last night for the update on Dad, and he seems to have reached an impasse on his recovery! The swallowing therapist says he can have absolutely nothing by mouth until he goes to rehab, because she is convinced he is still aspirating (and says that even his best tests were borderline, but they decided just to try letting him have food -- that was the fiasco a few weeks ago). But none of the rehab places will take him as long as he requires an IV to take his medicine! The oral form of the medicine apparently can't be made to fit into the J-tube his stomach has, and there's no patch form of the medication he needs, and it can't be given by injection (too abrupt, apparently -- it needs to be more time-released). So he can't leave the hospital until he can take his medicine, and he can't take his medicine until he can leave the hospital. What are we to do?

Mom is hoping to get more details from the GI doctor next time she sees one, and she and Dr. Hiatt are trying to come up with other solutions. But for the moment Dad is stuck in a holding pattern.

Mom did get Dad a lollipop for Valentine's Day, but it was too big, so the next day she brought him a popsicle, with reluctant approval from the medical staff. I wonder if there's a popsicle form of his medicine? ;)

Meanwhile, Dad's medical orders say he is supposed to be receiving daily attention from a physical therapist. But Mom says they're lucky if they see one every other day; usually it's more like every three or four days. She quizzed the PT yesterday on why they weren't there, and Mom was told they simply don't have enough staff. Mom does what exercises she can with him, and she is getting very insistent that the nurses move him into a chair every day (even though he hates it, because it's so painful with his bedsore, and so tiring), but Mom is no substitute for full-fledged therapy.

At this point we need a miracle! A priest with a good track record has stopped by a number of times -- he once read the 23rd Psalm to a 9-year-old heart attack patient (an infection run amok) who was expected to be very limited in his activity for six to nine months, and a week later he was home and back to a normal life! And more recently a patient came in for emergency octuple (yes, that's 8-way) bypass surgery and was not expected to survive, and after a blessing and the psalm from this priest he also recovered dramatically. So yesterday the priest read the 23rd Psalm for Dad. (We don't know how many times he's read this same psalm without effect, says the skeptic in me, but we cling to what hope we can!) Please keep praying for Dad, that something will change for the better soon!

From the horse's mouth

Hey all!

I started to write this about a week ago - but didn't make much progress... I am not sure what is relavant or not anymore so I will leave it all here... The interesting stuff is in the second paragraph anyway.

Once again we have been neglecting you with updates on Dad's progress. Unfortunately, there isn't a lot to tell. He is still struggeling to maintain his nutrition. He has been receiving 65cc of stuff (hospital grade Ensure basically) an hour. BUT he also has had the pump running off and on to drain off the excess to keep the queasyness at bay. The other day we were all excited because the GI doctor told Dad that he had a "plan." Well! Plan is not a word we have heard all that often from them - so we couldn't wait to hear what it was... The next day we found out that the PLAN was to give him a little bit less nutrition to see how much he can tolerate and drain off the excess. They would watch that for a little while and see how he is doing. SOME PLAN! What the heck have they been doing all of this time!??! Mom and I are hoping that that wasn't the REAL plan - and that the real one would be revealed to us soon!

So - I happened to mention to Dad about how sick he was of being in the hospital (no pun intended...) He said OH YES! This was on Valentine's Day for anyone who is date tracking or anything. He then said "I would believe it if they told me I had a heart attack - what I can't believe is the magnatude of the attack." I agreed with him. I again told him that I would have given him Tums and a glass of water. He said that he knew at the time it was different. He said "You hear about pressure in your chest. It wasn't pressure - It felt like there was a block of wood inside my chest." I thought that was interesting - and I said that it WAS kind of like that. I told him what amazed ME was how strong he was through the whole process. He was awake and lucid up to the time that they wheeled him into surgery. I said I would have thought that for the nature of his event he would have fallen down or passed out or something - but the whole time he was doing the right things and giving the right answers. THEN - even after his surgery he was stronger than anyone would have expected. I told him the story of making the kisses to us all in ICU and then how he "was telling jokes with his toes" - when Katie told him he needed a pedicure. He was VERY interested in all of this and asked if it was all written down here in the blog. I told him it was - and he would be able to read the whole story himself soon...

It was so neat hearing HIS side of the story.

AGAIN - keep up the prayers! They are needed and appreciated!

Two months today...

Hey all!

Today is the two month anniversary of Dad's heart attack. I haven't heard any new news today - so I don't have a heck of a lot to report. I just wanted to put a few of my thoughts out there for all of you that have been following his progress.

First of all, THANK YOU! All of your support and thoughts and prayers mean more than you can possibly EVER know. We all are so amazed at the true kindness of the people who know us, and know Dad. From the very beginning we have known that it is the thoughts and prayers (as well as Dad's amazing stubborness) that has brought us this far .

I know so many of our posts here have been up and down. One day he is doing GREAT, the next day further complications have hit and we are backtracking. BUT when I think where we were two months ago today (almost to the minute now) and when I think how much he has been through - and we have too - it seems like SO much longer! When I think where he was a month ago (just moving out of the CICU) I am pleased with how much he has progressed! He is still so much himself... interested in planning his next trip (cruise to Alaska in June) and getting his spring bulbs going, and worring about filing taxes. This horrendous thing that he is going through is just a pot hole on the road of his life. Jarring, and VERY much there - but soon to be passed and avoided in the future.

So - keep praying for him, if you would. He is getting better.

Ups and Downs

The celebration over Dad's new diet didn't last long! Over the next day or two, most of his food went straight out the pump, and then the pump quit and Dad wound up vomiting again. Eventually they got the pump fixed, but he was of all nutrition for a couple of days and they haven't been able to get him back on real food yet -- he's still getting only liquid nutrition into his stomach tube (actually into his intestine), at about half the level they'd like to see him get. Right now he says even tiny sips of water from his ice chips make him feel queasy, so it may be a while before his digestive system permits real food again.

I saw Dad this weekend for the first time in three weeks, and for the most part there was a big improvement. He was much more responsive and with it (most of the time) and he was talking, which I hadn't witnessed personally in two months. But yet again everyone told me I should have been here a few days earlier! The day we arrived (Friday) he had chronic hiccups, which continued all through the night, so on Saturday he was exhausted. They did finally give him some medication to stop the hiccups, but that messes up his blood pressure, so they can't give him much, or give it to him very often. He slept through much of our visit Saturday, and he had a hard time keeping himself upright on the inclined bed or keeping his jaw closed (especially when he slept) so he had a very dry mouth. They put him in a chair for a short while on Saturday, and that was extremely difficult for him. All in all, not such a great day.

Sunday was better. He got a good night's sleep on Saturday and his color and posture were better in the morning. The physical therapist came in on Sunday and gave him some exercises to do, starting with his toes and working his way up to his head. Mom learned the routine so she could help him with these -- he's supposed to do them hourly when she's there. Unfortunately they did tend to send his pulse skyrocketing, so they couldn't do as many of the exercise sets as the PT recommended. But by only the third set he was acting stronger, so if we can keep him going with therapy things are bound to get better quickly. I didn't see Dad today, but Mom said the weekday PT came in and had him sitting on the side of the bed, and that despite a bad night (the respiratory tech didn't show up to suction him!!! so he got very little rest) he was having a good day.

Dad is back on antibiotics. His C. diff. has returned, and he has developed a urinary tract infection, which wouldn't be any fun for a healthy person and is probably making him even more miserable. His antibiotics are given to him via IV for now, since his stomach is still unpredictable. Rehab centers won't want to take him until he can get them in his food, so this could cause yet another delay.

Dad looks very, very thin -- it's especially noticeable in his legs, which are mere sticks, but his arms aren't a whole lot better. We don't know what he weighs now, but we fear that after a couple of days with no nutrition whatsover last week, he's even thinner than before. We asked his nurse on Saturday, who first told us that he'd been weighed that morning, but when she tried to track down the number she told us they hadn't gotten the weight that day, and she couldn't even tell when the last time he was weighed was! Dad's nurse that day was very nice and professional but not at all forthcoming with useful information -- and she balked when we tried to get her to move Dad back into the chair, claiming he was too weak (and just how is he supposed to get stronger, unless they're willing to make an effort for him??).

I came away from this weekend visit more frustrated than ever with the hospital. I remain extremely impressed with their cardiac care, but for whole-person care they are sorely lacking. There is a total lack of oversight -- we get the sense that no one is looking at the whole picture, and they don't seem to realize that a small amount of neglect (like Dad not being suctioned, or them missing one dose of his medicine) can set him back days. Dad's cardiologist is at bat for him and comes by far more often than she is required to, particularly given that his main problems now aren't related to his heart, but the GI doctors, for example, seem to disappear for days, and don't know the whole story when they do show up. Mom is hoping to have a meeting with all his doctors simultaneously so they can get their act together in terms of a plan of recovery and a prognosis, but she will have to raise Cain to do it, I suspect!

Mom and I went by Stella Maris again this weekend to see their rehab facility (Sarah, the professional questioner, tried to come along, but they didn't have anyone to give us a tour at the time she could be there, so Mom and I were left to fend for ourselves at tour time). Their weekend admissions person wasn't particularly well-informed about their rehab (they've just completed renovating their facility, and she didn't know that they'd moved out of their temporary quarters already) but she was friendly and answered our questions as best she could. The facility was adequate, if not overwhelmingly impressive; Mom later told Dad that objectively she prefers Brightwood, but Stella Maris is more convenient and has the advantage of being Catholic, so she's torn. We are still being optimistic that he'll be ready for rehab in another week or two, but at the rate things are going some days, it could be months yet. Sigh.

Celebration Dinner!!!

Dad is EATING!!! Yippee!!! In honor of his first meal in 55 days we should all have what he is EATING as I type this - apple juice, some yucky strawberry protein shake and "some kind of meat" consumme. (For those of you who know You Can't Take It With You you will know how appropriate the soup is for him...)

So - finally they did the swallow test for Dad - and OF COURSE he passed. Oh - I really shouldn't say "of course", because there has been nothing "of course" about any of this - but as Katie said - he has been swallowing for a while now - just not officially. Anyway... there is a problem with his CURSED feeding tube. Everything he is eating is going straight out the out tube. This means the darn calories are being wasted! But at least he is getting the pleasure of eating. (I wonder if I can get one of those?)

I am not actually AT the hospital right now - I just spoke to Katie who is there with him. I am just so excited for him I HAD to post.

I am now going to rush home to make a big pot of some kind of meat soup, and mush up some strawberries for dinner!

YIPPPEEEEEE! Keep praying. It seems this was a good STEP FORWARD day - and week! No trache tube and eating! He was sitting in a chair and everything the other day! Before you know it he WILL be on his was to Alaska with me!