on Sunday, 05 October 2014.
Posted in Newest Info
Well, we finally heard from Keith's nurse, Kasha, on Friday. We did receive the blood work back on Friday morning via Keith's patient portal, so we knew that his AST/ALT numbers both went down by 1 point. But down is down so that's good!
Kasha said that there were absolutely no changes detected in the ultrasound when compared to the one they took last fall. Based on that and the fact that the numbers didn't go up, there is no need to do a biopsy at this time! Woo hoo! She did mention that there are areas of Keith's liver that are a bit denser than "normal" but they are of absolutely no concern to Dr. Kwon. I'm assuming that this was the "tissue stiffness" that the tech was recording.
For whatever reason, the virus issue was not part of the blood work results that we received and Keith didn't think to ask Kasha about it. We'll bring it up next time we talk to them. But they are on it, so I'm not very worried about it.
So Keith is to keep getting his blood work once a month, we are scheduled to go back down to Ann Arbor in February, and there were no changes to his meds. We just need to keep doing what we've been doing. One thing Keith is trying to do is increase the amount of magnesium that he gets from his foods. He has been taking a supplement since the transplant and is on a pretty high dose. High doses of magnesium tend to play havoc with one's gastrointestinal system, so we're trying to get it from food as opposed to pills. We met with a dietician the last time we were down there and got a list of foods high in magnesium. Hopefully by the next round of blood work, Keith will be able to knock off at least one of the magnesium pills that he takes.
Thank you all for the prayers and well wishes! They worked! We love you all and are extremely thankful for all of your support!
on Wednesday, 01 October 2014.
Posted in Newest Info
Wow, has it really been a whole year since I've posted an update on here? I know I've been posting things to Facebook, must've skipped this blog! There's way too much to catch you up on since last October so let me just give you the latest.
Keith and I went down for a clinic visit on 9/26. It had been 6 months since his last appointment; he was doing so well! He still goes for blood work once a month locally so they have been monitoring him between visits. We have noticed that his numbers have been rising slightly each month, but we never heard anything from the doctor and we've always been told that no news is good news so we weren't too concerned.
At his clinic visit, his numbers had gone up again. Not horrible, the AST is 45 and the ALT is 62; they should be between 0-35 or so. His total bilirubin is at 1.3 and the direct bilirubin is 0.3. There are 3 different ways they report the bilirubin, direct, total, and one other that I can't remember. Dr. Kwon informed us that the direct bilirubin is the best indicator of liver function and that number is really good. So it's confusing that the AST/ALT would be going higher. Of course it is. Hasn't confusion with this case been present since the beginning?
So you're probably wondering what all this means. Scenario number 1: Keith's auto-immune hepatitis has returned and has begun attacking the new liver. Scenario number 2: Keith has developed CMV, a virus which the donor had been exposed to but which Keith never has. Scenario number 3: some stage of rejection. You can imagine how I melted into a puddle when I heard those words. Isn't that what every transplant patient fears?
So now, what do we do about those scenarios? The good news is, all scenarios are treatable with medication. It just depends on what kind and how much. If it's the hepatitis returning, Keith will probably be taken off one of his immunosuppressants and have it replaced with a different type. If it's the CMV, he will be put on an anti-virus drug. He was on that for a while right after the transplant as a precaution, but they don't really keep you on it unless it proves necessary, i.e. the CMV presents itself. If it's rejection, Keith will be put on oral steriods like prednisone. If it's a more advanced case of rejection, he will need to go to the infusion clinic at U of M and receive the steroids via IV for 3 days in a row, about an hour or so per dose. Then maintenance with the oral meds.
So back to my meltdown at the appointment. Keith could tell that I was starting to lose it (and by lose it I mean that I was beginning to cry, please don't think I was all hysterical and out of my mind). He asked Dr. Kwon to remind me that this is to be expected. We knew the hepatitis would eventually come back. It's not a matter of "if", it's a matter of "when". She reassured me that they are watching Keith very closely and will catch whatever is going on very early. She emphatically stated that Keith will NEVER be where he was last year. It will never get to that point again. This is just part of the process and the bumps in the road that they told us to expect. Still, Keith has been doing so well, that it was just a shock to me to hear. That's really one of my big fears. That all of a sudden Keith will be horribly sick again and we'll get thrown into crisis mode. I'm not sure I could handle that again.
So where do we stand now? Well, the doctor wanted Keith to have an ultrasound that day to get any information that they can. I was able to watch. It was interesting even though I had no idea what I was looking at. It's easy to see a baby in an ultrasound. Not so much a liver. One thing that has me quite freaked out is that during the ultrasound, the tech was taking a bunch of measurements of stuff I couldn't see (I could tell when she was measuring the diameter of veins and artieries, this just looked like random grey areas of nothing). She left the room to call the doctor and make sure they had what they needed (again, weird, a tech has never done this before with all of the ultrasounds that Keith has had so it makes you wonder). She left her last screen shot up and the measurements she had been taking were labeled "Tissue Stiffness". To me, that sounds like cirrhosis which is not good. But techs aren't legally able to tell you anything and of course we need to wait for a radiologist to read and interpret the ultrasound and then Dr. Kwon to read that report. This just adds to my anxiety over waiting for results.
Anyway, he did more blood work again this past Monday. Depending on those findings, he MAY need to have another biopsy. That would be another trip to Ann Arbor. We still don't have any results from either of those two tests. I am about out of my mind from waiting. I think I have checked my email about 9,000 times a day. (I get notified when they post results to Keith's patient portal.) Plus, I've checked the portal daily to make sure that they didn't somehow post and I wasn't notified.
So it's wait. Again. Hurry up and get a bunch of tests and wait. It's hard. If we haven't heard anything by tomorrow afternoon, Keith is going to call. Please keep us in your prayers and send positive vibes our way! We love you all and thank you so much for all of your support!
on Tuesday, 08 October 2013.
Posted in Newest Info
So last Friday was Keith's first clinic appointment with his liver team. He has been seeing the surgical team for previous appointments, but all surgical issues have resolved so he got to move to the next level. Overall it was a good appointment, his doctor was impressed by how good he looked (she hasn't seen him since before the surgery) and he doesn't have to go back to the clinic for 2 months. However, for the past couple of months his liver levels have been yo-yoing and talk of biopsy has been tossed around. But the numbers always came back down so the biopsy was determined to be unnecessary. But his levels were the highest they have been post transplant this past Friday so he needed to have the biopsy. He also needed to have an ultrasound to make sure that blood flow was good in and out of the liver. Thankfully, we were able to have the ultrasound on Friday when we were there. The biopsy was another story. We needed to come back on Monday for that. The procedure needs to be completed and to the pathology lab BEFORE 11:00 so that his doctor could have the results by 6:00 that day. What to do? Come home for a day and turn around to go back down on Sunday? Stay downstate and shuffle the kids around trying to figure out how to get Jackson to and from school? We decided to come home and Keith's dad would go back down with him Sunday.
Let me back up a bit. There were about 4 different possibilities that could be causing Keith's erratic liver numbers. The best case scenario would be that there really isn't a good explanation; that this was just the way Keith's body was reacting to the transplant and all of the meds and trying to find its equilibrium. Option 2 was that his auto-immune hepatitis was back. This is always a possibility. It's in his system. We can't get rid of it. It's really only a matter of time. But treatable. They would just give him higher doses of oral steroids. Option 3: More background info, Keith's donor was CMV positive. It's a common virus that the majority of the population has. It presents like a cold or the flu. However, Keith was negative so he is extremely high risk to develop it since it's in the donor liver. No problem for someone who isn't immuno-compromised. But if Keith develops it, he can't fight it on his own. But again, treatable. He would just be given an oral anti-viral med. Option 4: the scariest option. Rejection. Sounds horrible, right? Of course it does. HOWEVER, even though it is called REJECTION, you're not actually LOSING the liver. Remember, the liver is foreign. His body is ALWAYS trying to get rid of it. He's always in some stage of rejection. That's what the suppressant meds are for. Making sure his body doesn't reject it. But surprisingly, even rejection is treatable. He would need to stay in Ann Arbor through Thursday and they would give him what they call pulse steroids. Basically it's high doses of steroids given by IV once a day for 3 days. After that, you need to wait and see how that worked to see if the oral steroids need to be increased. Scary options. It's our first bump in the road. We're so far from our doctors. So many things to try and work through. It's not as simple as "come back Monday and we'll do the biopsy".
So as it turns out, Keith's mom went down with him. His dad hadn't been feeling well the past few days and didn't want it to turn into anything more severe when he was downstate and expose Keith. They left about noon on Sunday and it took them FOREVER to get there. Torrential downpours and heavy traffic really slowed them down. But thankfully, they made it safe and sound. Keith arrived Monday morning for the 8:30am procedure. The procedure itself is pretty quick, the recovery was to last a couple of hours to make sure there wasn't any bleeding. HOWEVER, because of the Jones family curse we have to do everything more than once. Keith inherited the curse when he married me! The first attempt at the biopsy did not produce enough of a sample. The second attempt produced NOTHING. The third time was the charm. They moved the incision site a bit, but at least they got it. Keith said it hurt. It hurt a lot. If it hurt him, I would have been screaming and crying. He has a very high tolerance for pain. He thinks they were rubbing against a rib the first two times. Ouch.
Because they had to do 3 passes, they upped his recovery time to 4 hours. Long time to lay there with nothing to do. Then he still had to wait for the results to see if they had to stay or could come home. I'm thankful that I had to work and had the kids to distract me that day. I would have been pacing the halls otherwise. Keith and his mom went to go see Gravity to pass the time.
At about 5:40pm his nurse finally called with the results. It was GOOD NEWS!!! It was the first option. Just the way his body is responding to everything. No sign of infection, virus, hepatitis or rejection. NO REJECTION!!! Keith could come home. They hopped in the car and headed north. It's maybe a tad frustrating to me that there's no real reason for the erratic numbers. But I'm trying to focus on the positive. No rejection, no infection, no hepatitis, nothing! He will go to Munson this Thursday for more bloodwork to see how everything is going. Hopefully we're trending down again!
on Monday, 09 September 2013.
Posted in Newest Info
Today was another clinic visit for Keith. It went very well! It has been about a month since the last visit and he doesn't need to go back for another month! At that time he will transition to the liver doctors. He has been seeing the surgeons still, but all of his surgical issues have been resolved. His incision has healed beautifully and he is responding well to the meds. His liver levels were slightly elevated today. Nothing over 100 so that's great. Just a little elevated. He will go for another blood draw on Thursday like normal and see what those numbers look like. Even though it freaks me out a little when the numbers go up like that (it always makes me remember when they kept skyrocketing out of control) this is to be expected. There is something that can be done. It doesn't spell certain doom. So anyway, if his numbers are good on Thursday, we can go down to once a week draws! That will be wonderful. I don't mean to sound like I'm complaining, but it's been a bit of a struggle to try and juggle our schedules on the days Keith has blood draws. He has a very specific time frame to get his blood work done on those days, we have to get Jackson to school and I have to get to work. Sometimes having only one car is a pain.
One thing we did talk about today with the nurse was one of the side effects of his main immune suppressant meds. Keith has been noticing that it seems as if his hair is falling out and thinning more on the top of his head. It was happening a little before the transplant and we just attributed that to all of the stress he was under from work. But lately it seems to be getting worse. It's not any huge deal, just something we noticed. He mentioned it to the pharmacy tech today and she said it's definitely a side effect of the Tacro. If it's bothersome to Keith he can get some Rogaine, but it's not that big of a deal to us. Just an interesting quirk of the meds and it's nice to know there is a cause!
Another thing Keith has noticed lately is that he is having a hard time falling asleep at night. He used to fall asleep before his head hit the pillow, but no so much lately. None of the meds really cause this. The nurse attributed it to the fact that he probably just has a lot on his mind. She did mention that he can take some Benadryl to relax him and make him sleepy. I thought maybe that Nyquil that specifically for sleeping would be better. Seems that the Benadryl has a lot of stuff in it treating symptoms he doesn't have, but she thinks the Benadryl would be better. We'll try that out and see if it helps.
That's pretty much all that happened today. Good report overall! They did mention that they see Keith was less than they see most of their other transplant patients. He is doing really well. I hadn't been back to U of M since his very first clinic visit. It was strange to weave around the parking structure looking for a parking place again. Strange to see all of the same landmarks that I used to look for when I would drive there myself. It was nice to know that at the end of the day we got to come home.
All our love to you all!
on Monday, 12 August 2013.
Posted in Newest Info
Thank you to all who attended our benefit luncheon this past Saturday! It was a wonderful day full of family and friends and lots of love! Thank you also to all of our family who worked so hard organizing everything and putting on such a wonderful benefit!
Keith had another blood draw today. We didn't hear yet from his clinic nurse so we are not sure of the numbers today. They say no news is good news, but also, it sometimes takes a day for them to get the numbers from our local lab. So I guess we'll see what tomorrow brings.
Otherwise, Keith continues to do well. Stronger every day and his color is much better. I can't even detect lingering signs of jaundice at this point. But I'm somewhat use to it I guess so I may not be the best judge!
More updates as they come. Love to you all.
on Wednesday, 07 August 2013.
Posted in Newest Info
Oh my, what a long time it has been since I have posted to you! Keith has been doing well. He continued to go to Ann Arbor every 2 weeks for his clinic visits and his numbers and levels had always been really good. He had a visit this past Monday and was told that his liver numbers were a bit elevated and had been on the increase the past few blood draws. The doctor did not seem overly concerned, but asked how Keith has been feeling lately. He has had no clinical symptoms (flu like symptoms or a cold, achy-ness, fever etc.) and has been feeling fine. If he had symptoms mentioned above the doctor would have assumed Keith had some sort of virus and would have let it run its course. In the absence of said symptoms, the doctor wants to make sure that the autoimmune hepatitis isn't making itself known again and tenatively scheduled Keith for a liver biopsy this Friday. As you can imagine, this was somewhat hard for us to hear. We KNOW there will be bumps in the road. We have been told to EXPECT this. But he has been doing so well that it was a little bit of a shock to hear. They did an ultrasound on Monday while Keith was there just to make sure that all of the vessels and veins and arteries are working properly in the liver. The preliminary reports of that test look good.
So today Keith's dad took him to Munson for another blood draw. Based on these numbers we would find out whether or not Keith and I need to head down to Ann Arbor tomorrow after I get out of work. Keith's nurse Kasha called and let me know that the numbers are still elevated, but they did come down. Based on that fact, the doctor wants to hold off on the biopsy for now and have Keith do another blood draw on Monday. (He gets blood drawn 2 times a week either here or in Ann Arbor depending on whether or not he is down there for clinic.) This is such wonderful news! We'll see what Monday brings and Kasha said to call them immediately if Keith starts having any symptoms, but for now we are good and in a holding pattern.
We have had such incredible support since we have been home. Keith's parents have been camped out in our yard (in their camper in our driveway, a pretty fancy setup!) and have been taking Keith to his blood draws, watching the kids while I go to work and helping out around the house as we get back into the swing of things. His dad has been taking Keith to his clinic visits and the past couple of times they took Jackson so he could go swimming at the hotel. Meals have been brought to us and we are so very grateful for all of the support we are receiving from everyone! We continue to be humbled by the actions of our family, friends and community at large.
We have another benefit this Saturday. It will be at the VFW hall on Veterans Drive from 11-2. Our community has come together and a ton of businesses in our area have donated items for the silent auction. We have over 85 items so far!
We had a visit today from a reporter at the Record Eagle. She wanted to interview Keith as part of a human interest story to go along with the piece they are doing about the benefit luncheon. We talked for over two hours and gave her the whole story starting back when Keith was first diagnosed with ulcerative colitis. She needs to take all of our information and condense it down into a 500 word article. I do not envy her in that task! It should be printed in Friday's paper. But she did say it was possible that it wouldn't be in until Saturday. A photographer came out to take pictures of Keith as well. Excited to see how it all turns out!
I'm sure there is a TON I am forgetting since it's been so long since I've written. I will try to be better about keeping in touch! Please feel free to leave a comment if you have a question for us! It comes to me before it goes out to the site, so if you wish to keep it private, just let me know and I won't make it public!
All our love to all of you!
on Thursday, 18 July 2013.
Posted in Newest Info
Keith and I would like to thank Jonathan and Melissa Basler for all of their hard work putting together such a wonderful benefit dinner for us last night. It was so great to see so many friends and family come together to support our family. It was very overwhelming and so very much appreciated! Thank you to all who attended or helped out in any way last night!
Today is our baby girl's 2nd birthday. Can't believe she is 2 already! Time has certainly flown by fast and even more so when we missed a whole month of her life! We are very grateful that we all could be here to celebrate with her!
on Tuesday, 09 July 2013.
Posted in Newest Info
Wow how time flies! I can't believe it's been a week since I last updated the site. A lot has happened in that time! We were able to enjoy quite a few days at the Cherry Festival. It was good to be out and about. We took Jackson to the Midway on the 4th and he had a ton of fun! Unfortunately, Keith couldn't stay long since his wound began to bleed and bled through his shirt. His parents took him backstage so that he could clean up and get bandaged up. I proved what a great bumper car driver I am and Jackson and I had a blast!
We went to the fireworks at Frankfort for the 4th. They were awesome as usual! Keith got a little cold sitting on the beach. It was much colder than we thought it would be. We got him wrapped up in blankets and he was good. We took a chair for him to sit in as it would be too hard for him to get down on the sand. As is tradition, we walked a few blocks back into Frankfort to get ice cream at The Cool Spot. Keith walked the whole way and said it felt good to stretch after sitting on the beach for so long.
The next day was a rehearsal with my former choir to honor my high school choir director, Russ Larimer. He retired this year and all of his former students were invited to get together to sing under his direction again. It was so great to see so many of my classmates! We spent the evening reminiscing, singing and catching up around a bonfire at Mr. Larimer's house. What wonderful memories we shared and created some new ones. Saturday was the performance at First Congregational Church. What a wonderful time that was! To sing in front of others again was incredible and made me realize how much I have missed it.
Sunday Keith and his dad headed back to Ann Arbor for Keith's appointment on Monday. He had a wonderful follow up visit! They told him that he is one of the best post op transplant patients they have ever seen. His levels are continuing to improve, they reduced his prednisone, took him off of the water pill and told him he didn't have to wear his compression stockings anymore. They also moved him to clinic visits every two weeks! He still has to get blood work done up here twice a week on off clinic weeks, but that is obviously so much easier! So as long as his blood work is good he won't have to go back to Ann Arbor until the 22nd!
We continue to be humbled and overwhelmed by everyone's generosity. We have received more help and support than we ever could have asked for. Thank you all so much. We love all of you and could not have gotten through this time without each and every one of you. All our love always.
on Wednesday, 03 July 2013.
Posted in Newest Info
It has been so good to be home! It's strange as we fall into our new routines. On top of all of the normal day to day stuff I now get to play nurse; making sure Keith takes his meds 3 times a day and taking his vitals twice a day, putting on and taking off his compression stockings which holy cow, are a pain! I've got it down now, but still, not so much fun.
Being the die hard Cherry Fest peeps that we are, we ventured out Saturday night to see Styx. Keith did really well; wore his mask as we were walking backstage and then we hung out in the catering tent. It was good to get out and do something normal.
Mom and I got to have a girls' night Sunday night and went down to see Montgomery Gentry. What a great show! It was nice not to have to keep an eye on the kids and cart Madelyn around the whole time.
Last night the whole fam ventured back down to see Foreigner. Keith hung out in the catering tent again and Jackson hung out with his friend Kadin backstage. Madelyn hung out with me and we jammed out next to the stage. As we were getting ready to leave, Keith noticed some wetness on his shirt and went in the production office to check it out. Part of the incision that had started scabbing over had caught on his shirt and started bleeding. It frightened me since the blood was really dark; not the bright red that you usually have if you cut yourself. We pulled over on the way home to make sure that it wasn't bleeding a lot. I figured we were closer to the hospital at that point than if we went all the way home so if it was bleeding a lot we might as well head to the ER. But the bleeding at that point was very faint so we continued home. Keith kept a fair amount of pressure on it and had it stopped by the time he went to bed. It continues to bleed around the scab, but as long as there is pressure on it, it's a very slow bleed. We called his nurse this morning and let her know what was going on. She wasn't concerned about it. It's a good thing that we can get it to stop.
Oh yeah, Keith went in for blood work on Monday (here at Munson). Kasha (our U of M nurse) let him know that his magnesium fell a bit again so to look up high magnesium foods and to eat those until his supplements come. One food high in that is dark chocolate. Keith was all over that! So I got him a huge bar of it and did he share? No, he did not. Bummer.
Keith's got blood work at Munson again tomorrow so we'll see. His numbers are continuing to improve (other than magnesium, of course). We are well on our way to recovery. Please keep the prayers coming that it continues to go smoothly!
I also wanted to thank everyone who has so generously donated to our page. Like I've said before, it is very humbling and overwhelming. We did meet our goal of $2500 to receive the match and this just blows me away. I wanted to mention that we did meet the goal, since the match money isn't going to go through the site. We love you all and are so very happy to be back home amongst our friends and family!
on Saturday, 29 June 2013.
Posted in Newest Info
Sorry that I didn't post yesterday. I'll catch you up on what happened!
Keith had his first clinic visit yesterday. He had to have his blood drawn at 9:00am and his appointment was at 10:00. They told us to bring water and snacks as the appointment would likely last several hours. So we were a bit surprised when they called us back at 9:10! We met with the pharmacist who went over Keith's meds with us to make sure that we understood what they were, how to take them and possible side effects. The surgeon came in and said that Keith looked remarkably well and the incision was healing nicely. We also met with our post transplant nurse who will follow Keith forever with his clinic visits. She went over dos and don'ts with us and answered any questions that we had. After waiting for the results from the blood work, we found out that his numbers continue to improve. His ALT is down to 42 and his AST is 93. Still a little high, but WAY better than in the 5700s and 4400s! His bilirubin is down to 3.9. His kidney function continues to improve but is still a little off. Time will fix this along with drinking plenty of fluid.
They also gave us some more information on the whole eating out thing and when to wear his mask. This eased my mind tremendously. The only huge lifestyle change is that Keith can NEVER again have alcohol (not that he drank all that much). This is a small price to pay for the chance of a healthy life. The donor family gave us a wonderful gift; obviously we want to take care of it!
So after all that good news, they let us go! We were on the road by 11:30 and don't have to be back until Monday, July 8th. He will have to get blood work done here this Monday and Wednesday and based on those numbers they could ask us to come down earlier, but if not, we get the whole week to be home! As we were driving home, Kasha (the nurse) called to let us know that his suppressant levels were where they were supposed to be so we don't need to adjust that med at all. (Those results always take longer so they don't make you wait around for those.) His hemoglobin and magnesium are a little low, so they are going to add an iron supplement and a magnesium pill to his other meds. Those should be delivered early this week. In the meantime, he is supposed to eat peanut butter to get his magnesium levels up.
It was so great to drive yesterday knowing that it would result in us coming home and seeing the kids! From Clare to our house was the longest drive in the world! Madelyn and Jackson were so happy to see us and Madelyn hasn't let me leave her sight ever since. I can't go anywhere without taking her with me! They both have gotten so big in the past month and Madelyn has turned into quite the little chatterbox!
It was beyond wonderful to sleep in my own bed last night! Keith is still more comfortable on the couch or in the recliner and he said that all things considered, he got the best sleep last night that he's had in ages. I'm sure it will just keep getting better as the days go by.
This morning I made pancakes with the kids. It was so great to do something so normal! Today the sun is shining and it is a beautiful day! We're thinking about going down to the Cherry Festival tonight to catch the Styx concert and see the night time air show. We'll see how Keith feels. The good thing is I happen to know a guy who can get us parked backstage so that Keith doesn't have to walk very far. :) Nice to have those connections!
Thank you for the continued prayers and support! Posts may come a little less frequently now that we are home, but I will still continue to update as we learn more. All my love to you!
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on Friday, 28 June 2013.
Posted in Newest Info
Today was a bittersweet day. We left Adam and Cindy's this afternoon and headed to our hotel in Ann Arbor. It's nice knowing that we are one step closer to being home, but Adam and Cindy's has been my home for the past 4 weeks and it was harder than I thought it would be to say goodbye. But we set off for Ann Arbor once again to continue on our journey.
HOLY TORRENTIAL DOWNPOUR, BATMAN!!! We ran into a monsoon in Ann Arbor! The visibility was non-existent, the roads had about an inch of water on them and the parking lot at our hotel was a lake. Because Keith has those compression stockings on and they cover his feet, not to mention he walks a little slower these days and probably would have drowned in the rain, we waited in our car for about an hour for the rain to let up enough for him to walk to our room. It's one of those hotels that you walk right to your room from the outside; it creeps me out. So it's not like there was some nice awning that I could park under to get him into the hotel. So we're holed up here in our hotel for the night hoping that we can get a good night's sleep.
We made our first venture into a restaurant tonight. Keith liked it because it was the first normal thing he's done in a month. For me, it was anything but normal. I am totally freaked out now about the things that used to be taken for granted. Is the food cooked right? Does this restaurant use city water? Are there any sickies around us? Ugh, the list of my worries is endless. I'm sure it drives Keith nuts. I could barely get through the meal without breaking down into a blob of overwhelming tears.
Obviously we are hoping for nothing but good news tomorrow so that we can head home! Just think, this time tomorrow we could be tucking our babies into bed! Ahh, the normalcy of that. I can't wait...
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on Wednesday, 26 June 2013.
Posted in Newest Info
Today was a day to catch up on sleep! Keith and I took naps today (although, I must admit, I took more and they were longer!). Last night was better as far as sleeping goes, but every time Keith moves I wake up to make sure nothing is wrong.
We went for a walk outside today. It was another beautiful day. Keith did really well. The sidewalks were a bit uneven as they tend to be, so I was a little nervous, but we took it slow and it was nice to enjoy the blue sky and sunshine! It's hard to believe we've missed a whole month of "summer". We'll have to make up for that when we get home!
Keith's big thing on the agenda today: a haircut. We've found a place down here that's open until 8:00 that takes walk-ins only so we're going to go check that out in a bit. Keith was way overdue BEFORE he was transferred down here, so he's very excited to get this done tonight!
Tonight will be our last night at Adam and Cindy's. We've booked a hotel closer to the hospital for tomorrow night so that we don't have to fight the rush hour traffic down here the day of the appointment. It will be so very sad to say goodbye to Adam and Cindy. This has been my home for the past almost 4 weeks and they have been so very generous and supportive. Although it will be very exciting to head home in a couple of days, it will be very weird as well.
For the first time since before his surgery, Keith got to talk to Jackson last night. He had been holding off for a while for many reasons; his voice was all scratchy from the ventilator tube, he's been pretty out of it for a while, etc. I think the biggest reason was that it was just going to be really hard. Jackson has been missing us and wanting to know when we would be home. Now that we have more of a date in mind we were prepared if that question came up. Jackson had a lot to update his daddy about. All of the fun stuff he's been doing, games he's been playing, what Madelyn (he calls her "Madion" since he can't say his "L" sounds) has been up to, etc, etc. It was a great conversation that lasted almost 45 minutes! Jackson didn't want to say goodbye, but we let him know we would talk to him again soon.
For now, we've got to get ready and head to the barber! All my love!
on Tuesday, 25 June 2013.
Posted in Newest Info
So, time to play a little catch up here...
Keith did get out of the hospital yesterday! He was basically ready from a discharge standpoint at 10:00am. But we had to wait for the meds to be delivered (the transplant meds are housed off site) and then the nurse had to go through them all to make sure that they were correct and then do her discharge stuff. So by the time all was said and done we didn't leave the hospital until about 5:30! They don't have volunteers to wheel you to the front entrance like they do at Munson. What U of M does is bring you a wheelchair and I had to wheel Keith to the car myself! I must say, I am not a very good wheelchair driver. But we made it to our car safe and sound and headed on our way!
After a crazy drive through Ann Arbor, we stopped at Meijer to get a few things. Not to mention I wanted to kill some time before getting out on the freeway with all of the crazies headed for home in rush hour traffic.
We got to Adam and Cindy's and they had made Keith a very yummy lasagne for dinner! It was Keith's first real meal in over 3 weeks. It was delicious! And there were brownies for dessert!
Last night was a little rough for sleeping. Keith can't really lay flat because it's so hard to get up and down. We decided the best place to sleep last night was the couch. (It is actually very comfortable!) But we set him up so that to get off the couch he would have to roll to his right side. This was the wrong answer. He has a suture from where his drain was on the right side which neither one of us thought of last night. Every time he moved it would put pressure on his wounds and make them drain a bit. But he did get more sleep here than he did at the hospital and said he felt pretty good when he woke up.
Even though we are just sitting around like we did at the hospital, it's a totally different feeling to be in a house rather than stuck in a loud hospital room. We've got Keith all set up on the couch with his feet propped up, his compression stockings on and some fresh dressings on his leaky parts of the incision. The leaking has practically stopped now since his movement has decreased, but lack of movement makes his legs get stiff. So he's been trying to do some laps around Adam and Cindy's house.
He's got his first follow up visit this Friday at 10:00am. We need to be there about an hour beforehand for blood work. We have to be very particular about when they draw his blood to check that his med levels are right. It's a whole lengthy process. The meds are a whole process too! I filled his pill box last night and it took about a half hour to get all the different days and times filled! It will get quicker as I get used to doing it. Keith counted his pills this morning and he took 19 pills just in his morning dose! All in all he takes about 30 pills a day. I told him his pill box rivals most elderly patients routines! Not very funny, but true.
Thank you all for your continued support! All my love.
on Monday, 24 June 2013.
Posted in Newest Info
KEITH GETS TO LEAVE TODAY!!!! KEITH GETS TO LEAVE TODAY!!!!
(I'm a little excited, can you tell?)
I'm back at the hospital with Keith and he's had quite the busy morning so far! He's talked to his various teams and they have all given him clearance to get discharged. Right now we are just waiting for the pharmacy to bring up his meds. Keith got his compression stockings today and those are SO much better than the wraps. They go from his toes to his thighs but the toes are open. They are very stylish I must say. ;)
We're getting ready to go for another walk around the floor. Then one last lunch here at the hospital and then sometime this afternoon it's off to Adam and Cindy's! We have our first clinic appointment this Friday at 10:00 and if everything is good to go, WE WILL HEAD HOME!!!! :) In clinic, Keith will meet with various members of his various teams. He'll have blood drawn to make sure his levels with both the liver and his meds are doing well. We'll meet with a surgeon to make sure there are no surgical concerns. It will be a long appointment. They suggest bringing water and snacks. Also an overnight bag in case he needs to be re-admitted for any reason. Our nurse yesterday said that a lot of the re-admits they see are because people forget to take it easy once they get home and blow open their wounds and what not. We will always have to be on the lookout for signs of rejection and infection, and we have been told over and over that there will be setbacks along the way. It's just all part of the lifelong process we are now in.
Overall, Keith is doing remarkably well. Our nurse told us yesterday that when they talk about Keith in shift change, they describe him as "not your typical liver transplant patient".
It will be awesome to be out of here, but a little scary too. Kinda like when you leave the hospital with your first baby that first time. You're so used to having professional help at your fingertips when you need it. But we'll do great. We've got the meds down pat. We know what to be on the lookout for. We know who to call if we have any questions/concerns.
I cannot say enough wonderful things about this hospital. EVERYONE has been so caring and helpful. They explained everything to us over and over again so that we know it inside and out. I feel that they are a part of our extended family. I'm sure there will be tears of not only happiness but also overwhelming gratitude when we leave (on my end anyway 'cause you know, I cry at the drop of a hat).
We're off for our walk now!
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on Sunday, 23 June 2013.
Posted in Newest Info
Keith continued to do well yesterday. His kidney function has improved enough that they can start him back up again on the diuretic. They gave it to him through his IV yesterday so the results would be quicker. The doctor also came in and wrapped his legs since he said trying to get compression stockings on the weekend was near impossible. Walking is a bit of a challenge from all of the swelling and now the wrapped legs. But we made sure to get up and walk a bit yesterday. At first they were going to let us go outside, but then thought better of it once they gave him the diuretic. It's best to stay close by the bathroom after that!
Keith was able to get some really good sleep last night! He also lost 6 lbs of water since yesterday morning. They are going to push more diuretic today and hopefully get more water out.
Not a whole lot going on now. Just waiting for the water to go down and hoping that we're still on track for getting released tomorrow. It will be so great not to have to make the drive to and from the hospital everyday. Not to mention have Keith out of there as well! :) We'll stay in the area for about another week since he'll have his first follow up visit this Friday. Then it's off to our house that we haven't seen for 4 weeks and our beautiful babies! I was fortunate enough to be able to see them a couple of times, but Keith hasn't seen them since June 1st, right before he was transported down here. :(
All my love to you all. Gotta finish getting ready so I can head off to the hospital!
on Saturday, 22 June 2013.
Posted in Newest Info
Good morning! Yesterday was a pretty good day. Keith's numbers continue to improve. They removed his drain so now he just has one small IV in that they really aren't even using. His swelling isn't really getting any better so they are going to get some compression stockings for his legs. Amit (part of the surgical team) told him to keep his legs elevated above his heart and to drink, drink, drink plenty of water. They had started him on a diuretic but then his kidney numbers went the wrong way so they didn't do the diuretic yesterday. Keith could tell a difference. The swelling is pretty severe from the waist down, but it is to be expected. Especially in someone that had such a sick liver before the transplant.
I just spoke with Keith this morning and he had a pretty rough night again. He fell asleep in a bad position and was then horribly uncomfortable. The swelling is making it hard for him to sleep as well. They gave him some Morphine for the discomfort and that is helping a lot. He's not really in pain, he's taking it more now to help him relax a bit. He also got to take a shower this morning!!! He said that helped a ton! They are going to increase the dose of the diuretic now that the kidney numbers have started coming back down. His hemoglobin fell a bit so they are going to give him another blood transfusion today. They said it will just help him to feel a bit better. Sometimes when that number goes down it is an indicator that there is some bleeding somewhere, but Keith said that the doctors aren't concerned about that at all. All just normal stuff that can happen after surgery. Overall he is doing really well and all of his other numbers are continuing to head in the right direction. They are still talking about releasing him on Monday which just blows my mind. He will have spent more time in the hospital pre-transplant while they tried to figure out what was going on than he will post-transplant. Crazy how medicine and the body work.
Nate and Heather Sullivan came by to see Keith last night. It was so wonderful to sit around and talk and have conversations that didn't revolve around liver numbers, bilirubin, creatinine levels, drugs, incisions, etc, etc. Just four people talking about old times. Great therapy!
One major thing we learned yesterday is that Keith will never again be able to drink water from a well. Never. Ever. This presents somewhat of a scary and overwhelming obstacle since practically EVERYONE we know has well water including us. I still have to check with Amit and see if we can cook with it, but he definitely can't drink it. Can he shower in it? Brush his teeth with it? If we got a home filtration system, would that do the trick? The problem is the parasites that naturally are found in well water. For the average person not on immunosuppressants, our system naturally fights these off. Not so much with Keith. It's weird, I can handle all of the changes about having to take all of the pills, changing our diet, making sure the kids and visitors are sanitized from head to toe; but this water thing is putting me over the edge. It's the proverbial straw. I think it's because it's such a basic thing that we never think about and take for granted. I mean it's WATER. It's such an automatic thing to go over and turn on the faucet and do what you've gotta do. I know it will all work out, but honestly, I'm freaking out here just a bit.
Hopefully I can write more later. We'll see how the day goes. By the time I get to the hospital I don't feel like leaving so that I can write, and then when I get back to Adam and Cindy's I'm so exhausted that I don't feel that I can form a coherent thought. Keith had me bring his laptop to him yesterday though so I guess I can use that to keep the updates coming!
All my love!
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on Thursday, 20 June 2013.
Posted in Newest Info
Today was another day full of steps in the right direction. Keith is getting stronger every day and the doctors continue to be impressed by his recovery. He seemed like perhaps he took a step back today but we think it was just because he was so tired. He couldn't walk as much as he did yesterday and seemed to be taking shallower breaths. He took some morphine after our afternoon walk and was able to sleep for about 3 hours. It's nearly impossible to get any sleep in the hospital so I think the 3 weeks here is just wearing him down.
He said he felt much better after his nap and ordered some dinner right before I left. His docs came in and said that he'll get his drain out tomorrow. He's not hooked to anything right now, just has an IV line in in case they need it.
His legs and belly are still very swollen, but they started him on a diuretic today which will help get the fluid out of his body. They say it can take several weeks for the swelling to go down.
The incision is healing very nicely. They just used the surgical glue so he doesn't need to get staples or sutures removed.
They are saying that he will probably be discharged on Monday. Tomorrow is a little too soon and it's too hard to organize on the weekend since we'll need to see the pharmacist again, meet with a dietician and the various other things that need to happen. Then he'll be back in the clinic next Friday for the start of his weekly visits.
He is going to take some Ambien tonight to help him sleep. Hopefully tomorrow will be that much better after a good night's sleep!
On a very personal note, I know that many of you have donated to the website that has been set up for our family. I am very overwhelmed and humbled by the outpouring of support in this way. Saying "thank you" doesn't seem like it will ever be enough. It means so much to us and I want you to know how much we truly appreciate it. Everyone has been so supportive with your thoughts, prayers, watching our kids, mowing our lawn and the comments on the blog. We love you all so much and can't wait to be home among our family.
on Wednesday, 19 June 2013.
Posted in Newest Info
Sorry for the late post, but Keith was awake all day today and I wanted to spend that time with him instead of heading off to the waiting room to use the computer!
Today was a great day! Keith got his NG tube out last night and was able to go on a clear liquid diet. So basically broths, water, coffee (but no cream, sugar is ok) and Jello. He said Jello never tasted so good! He did really well with all of it. No nausea or vomiting. They said if he continues to do well with it tonight they may move him to soft foods tomorrow.
The pharmacist came in today to go over all of Keith's meds with us; doses, time to take them, what they are, what they are for, side effects, etc. The list is extensive, I think he's going to be on 14-15 different meds, but most are taken twice a day and multiple pills make up one dose. But she gave us a schedule and I feel that we have a pretty good handle on it. The good thing is, U of M will keep his prescriptions on file so whenever we need a refill, we just call them and they FedEx it to us. No need to drive to Walgreens and make sure that they have the meds and that it comes from the same manufacturer. So that will be super awesome.
They did mention that Keith MAY be able to be discharged in the next few days. No set date yet. He did meet with the discharge coordinator so at least it's on their radar.
His coloring is much better today. I had gotten used to seeing him yellow for so long that this new color he had after surgery was very strange to me. He was dark. Almost like he'd gone to the Caribbean or something. They said that is from the bilirubin staining the skin. But today, it's much better.
His mental state is getting better everyday. The sedation meds are finally starting to completely clear out of his system I think.
Overall, he's doing remarkably well. Hard to think that just a week ago was our transplant class and that he had only been on the waiting list for one day. Now here we are post transplant and talking about being discharged. Totally surreal.
Thank you all for your continued support. We love and miss you all and can't wait for the day when we can finally come home!
on Tuesday, 18 June 2013.
Posted in Newest Info
Whew! Lots to catch you up on! This morning they removed all of Keith's tubes except for a couple of IV sites. One main one and one for backup. They took him off the oxygen but left the NG tube for now. He is desperate to get that removed, but it's the surgeon's call and they haven't done afternoon rounds yet. He is up and walking again today. They said not to leave the floor. He was hoping to go back outside, but I get the feeling that that was an "oopsie" yesterday!
The good news keeps on coming; they just moved him off of the ICU to the floor. So he's back in a regular room! Only bummer is that now he has a roommate, the first time since being admitted here. Hopefully his roommate isn't too much of a problem. He's had bad luck with that in the past!
Before they let him go home (when that will be we don't know yet) he needs to know all of his meds and what they are for, how to take them and possible side effects. So he'll have a test on that so they can see where he is.
His confusion is getting better all the time. He still says some goofy things from time to time, but he'll come around.
As much as I'm looking forward to getting him home I must admit I am a little terrified about all of the changes. The meds alone are going to be overwhelming to keep straight. Plus there's making sure he doesn't come into contact with anyone who is sick and keeping an eye on his blood pressure and weight to make sure he's not collecting fluid or having a bleed somewhere. Not to mention the fact that for about the first 6 weeks he will have at least one visit per week here in Ann Arbor. Then it will taper to one every 2 weeks, once a month and so on until he's only coming down here about once a year. But bloodwork will continue at home forever. I am so thankful for our wonderful support team and I know we will get through this, but right now it's a bit much to think about. To quote Scarlett O'Hara, "I won't think about that today. I'll think about that tomorrow. If I think about that today, I'll go crazy!" True dat.
All my love to you all. Keep the prayers coming. They are working like crazy! Thank you so much!
I called Keith's nurse earlier to see how he had been doing tonight (I headed back to Adam and Cindy's around 7:00). She said he was doing great but tired from all of the walking he did today. He was able to get outside and enjoy some sunshine and fresh air earlier! She was getting him situated in bed. He has been at no pain all day today so hasn't been taking any pain meds. He was wondering if he would be able to sleep (he has a hard time finding a comfortable position). She let him know that they would prop him up and if he hadn't fallen asleep in a half hour or so, they would give him some pain meds. He was agreeable to that!
He has been a bit confused still. For some reason, he thinks that if he eats ice chips it will affect the NG tube that he has and he won't be able to get better and go home. Same thing for resting. He thinks that if he sleeps, the nurses will think he's not getting better and not let him leave. I'm afraid that he's telling everyone that he's in no pain so that they'll let him go home. I expressed this concern to the nurse tonight and she said that she'll keep an eye on it.
One of the surgeons came in while I was writing today's earlier blog and said that the ultrasound Keith had today (yes, he had another one) looked great. The liver is doing really well and the portal vein they were looking at had no changes but that they are not necessarily concerned with the higher velocity at this point. Everyone is very encouraged by Keith's progress. His vitals continue to be good.
Goodnight to all!
on Monday, 17 June 2013.
Posted in Newest Info
Last night was my first night away from the hospital since this past Thursday. Mom and Dad stopped by with the kids and I got to eat with them in the cafeteria. It was so good to see them! Dad went up with me to see Keith which was the first Dad got to see him since the whole ordeal started. Keith recognized who he was and we all talked for a bit. We decided not to let the kids come up yet because with all of the wires and ports coming out of Keith, we feel it would just be too scary to the kids. I had asked Keith what he would like and he said he would rather wait a while. If he's feeling up to it tomorrow, maybe he and Jackson can talk on the phone. I ended up going back to Adam and Cindy's with Mom, Dad and the kids and got my first good night's sleep since last Wednesday night. Both kids slept with me and it was great to be able to wake up in the morning next to them!
By the time I got back to the hospital today, Keith had already been on 3 walks around the floor! He's up and moving! They took him off of the oxygen for a bit, but his levels are still a little low with that, so when he's resting they like to have him back on it. He's VERY determined to get off of the NG tube (basically the tube that is pumping his stomach). Because a big surgery like his tends to make the digestive tract go to sleep it takes a while for it to wake back up. The stomach is constantly producing digestive juices, but it's not contracting to move that through the system. Without the NG tube right now, Keith would be vomiting that up and possibly blowing open his wounds. He's very adamant that he wants to try taking it out. I am patiently trying to explain to him why this isn't a good idea at the moment. I'll win this battle, but it's not going to be pretty.
They did another ultrasound today and everything is looking really good. The portal vein that I talked about in an earlier post hasn't really changed much. Still a lot of velocity in the flow, but the surgeons aren't very concerned with it at this point.
Right now Keith is resting and gearing up for walk number 4. They said he might be able to go outside and he thinks this sounds good.
He received some cards today. Thank you for those! Your support has been wonderful! All my love to you all. Hopefully we'll be able to see you all soon!
on Sunday, 16 June 2013.
Posted in Newest Info
Yesterday afternoon they did an ultrasound on the liver. They need to make sure the blood flow through the liver is good. The portal vein which is the vein that brings all of the nutrient rich blood from the intestines to the liver has a lot more flow than normal. This could be caused due to just a tight connection from suturing the new liver to Keith's anatomy, or there could be a clot, or just some post op swelling.
I spoke with the surgeon about it this morning and he is not very worried about it. Keith's numbers are continuing to move in the right direction so that is good. If the flow becomes a problem, they would be able to see it through bloodwork. But the surgeon said that he has good flow and that's not necessarily a bad thing. They are going to do another ultrasound this morning to keep an eye on it.
Keith's hemoglobin went down again which is an indication of internal bleeding. It's a very slow bleed that they feel will fix itself. So he is getting a transfusion right now to make up for the loss.
It was a very rough night. Keith's blood pressure dropped significantly and very suddenly. The ICU team swarmed into his room and monitored him very closely. They gave him more fluids which seemed to do the trick. They also discovered that the blood pressure seems to drop if he lays on his side, which he really wants to do, so we spent the night reminding Keith to keep laying on his back.
He still has the tube in which is draining his stomach (it's called an NG tube) so he can't eat or drink yet. He is only allowed a very small amount of ice chips. This is really bothering him because he is very thirsty and his mouth is very dry.
He is still very confused and disoriented. He's not sure about what month it is or what he had done. He knows who we are and who he is and can follow our commands, but it is very difficult for him to articulate his thoughts and carry on a conversation. The doctors say this is to be expected because his liver isn't yet processing the sedation medication from the surgery as effectively as our livers would. This will clear up. He is better than yesterday, but it's very hard to watch him struggle so much to try and get out what he is saying.
Mom and Dad will head over this afternoon with the kids so that Dad can see Keith. Keith is still hooked up to too many scary things so I don't think the kids should see him. That makes me sad seeing that they will be here and it's Father's Day. But I think all of the tubes and just Keith's overall appearance would scare Jackson. It will be good to see them though. Jackson is being such a wonderful big brother to Madelyn during all of this; comforting her when she misses us and letting her know that we'll be back for them someday. Hopefully that someday is soon.
on Saturday, 15 June 2013.
Posted in Newest Info
Keith is doing great! He is still in ICU but had the breathing tube taken out this morning. He is still very out of it and very confused as to what is going on and where he is, but they had to keep him on the sedation meds a little longer because his kidney function is still compromised and this would help sort of regulate him a little. They have since stopped that. He is on WAY less meds than he was last night but still a lot. He's got a self administered morphine drip for pain. They will start the anti-rejection meds today and will eventually switch to oral meds for that once he can eat and drink. He's got a lot of stuff sticking out of him everywhere, but overall he is doing great.
Uncle Doug, Aunt Cheryl and Lindsey came to see him this morning. It was great to see them while they were in Michigan. Wish it could have been under better circumstances! Mom left with them to go back to Grand Rapids but she will be back tomorrow with Dad and the kids. Might not let them see Keith yet. We'll just have to see how much stuff he's still hooked up to tomorrow.
Probably should go back up to the ICU now, I've been gone for a while! THANK YOU, THANK YOU, THANK YOU for all of your prayers! We couldn't have made it through this without EVERYONE'S support. We still have a LONG road to travel and it will take a while to adjust to our new way of life, but we'll get there. We'll get there.
The surgeon just came out and let us know that everything went well. Keith is out of surgery and in the ICU. The liver didn't appear as "sick" looking as would have been expected with Keith's numbers, but he said that can happen in acute cases like this where the illness comes on so suddenly. There wasn't necessarily a huge amount of blood loss. About what they expected and really only during one part of the surgery. The surgeon said they made it about halfway through the operation before this became a problem. But really, no huge big deal. Just gave him a few units of blood (we'll know how many once we get to ICU) and all is well.
He said the new liver is already producing bile and that it appears to be doing well. He's not concerned that there will be any type of complication with it not working. The one major thing we have to look out for now is bleeding. He said post op bleeding requiring additional surgery happens about every 1 in 5 cases. It's no big deal, a pretty minor problem and easy fix. He feels Keith will be in the ICU about 2 days and then to the floor. He may be discharged in 5 to 7 days. Even if a bleeding episode occurs, he said that usually only lengthens your stay by about 6 hours.
It has been an unbelievably long night and it's not over yet. We can head up to the ICU now, but Keith will still be heavily sedated and will have the breathing tube in place for about the next 24 hours. But it will be nice to see him and really know that he is ok.
Thank you all for your continued prayers and words of encouragement. Please remember to keep praying for the donor family. We will never be able to thank that family enough. They have given us this chance, this hope, this new life.
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Surgery officially started at 8:11. The OR called down and let us know that they had started and that Keith was doing great.
Also wanted to let you all know that Keith's parents and sister are here as well as my mom. He is surrounded by love here as well as all of the love you all are sending!
on Friday, 14 June 2013.
Posted in Newest Info
What an emotional roller coaster of a day. Waiting is so hard. We were told this morning that surgery would be at 6 tonight. Keith has been very tired the past few days and has been sleeping a lot.
At a few minutes before 5, transport came to take him down to pre-op. He was a little anxious so when the anesthesiologist came in to talk to us, he said he could give Keith a little something to help him relax.
Various people involved with the surgery came in to talk to Keith and explain things. They let us know that the surgery was pushed back to 7. It will take about 45 min or so to get all of his IVs hooked up, place the breathing tube, put heart monitors in place and get him to sleep. So the actual surgery won't start until about 8. They will constantly be monitoring his heart from a catheter placed down his throat which will rest right behind the heart. This type of surgery is very taxing on the heart because he is going to lose so much blood. They will constantly be giving him transfusions and platelets to help with the clotting factor.
He will be taken directly to the ICU for liver transplants when he is done. He will still have his breathing tube in for at least another 24 hours.
His team is great and I have all of the confidence in the world in them. But this is hard. Beyond imaginable hard. The surgeon told us that they will keep us updated as best they can, but that no news is good news. We have a pager and a board that will update us with his progress. I've also downloaded an app that lets me check into his progress so that I don't have to constantly check the board. Technology, eh? Crazy.
All my love. Keep the prayers coming. It's going to be a long night.
Well, yesterday was an interesting day...
I left for Grand Rapids around 3 and just as I was getting into GR, I got a call from Keith. The surgeon had just been in his room and KEITH WAS OFFERED A LIVER!!! At the time, the earliest the surgeon said they would do the surgery was midnight last night. But that wasn't set in stone yet. He told Keith that this was the Mercedes they had been wanting. So it sounds like they are very happy with what Keith will be receiving.
I got to see the kids for a few hours and it was so wonderful to see them. So very hard to say goodbye again so quickly though. Mom and I left GR at about 8:30 last night so that IF the surgery was at midnight we could see Keith before they took him to prep. We finally got to Keith's room at about 11:00 and Mom and I wandered the halls to keep occupied.
We have a tenative time right now of 6:00 tonight. Lots of stuff has to fall into place before the surgery can start. The surgeons will come in later today to go over final details and give us a definite timeline.
I know so many of you are praying for us and that all goes well and a speedy recovery. Please also remember to pray for the family that had to make a very hard and painful decision. While we are so happy that Keith is getting this chance, they are sad and heartbroken for their loss. All our love to that family.
on Thursday, 13 June 2013.
Posted in Newest Info
We were all a little burned out after yesterday's class. They gave us A TON of info, most of which we already knew from talking to the docs and Keith reading the liver binder. But the most exciting part was actually getting to meet liver transplant patients and hearing their stories. They ranged in age from 33 to mid sixties and most were about 5 years post transplant. One guy just had his transplant this past February! Two of them had PSC like Keith, but no one seemed to have the autoimmune hepatitis factor that Keith has. There is so much I could tell you, but mostly, their stories were very encouraging.
Keith was EXTREMELY tired yesterday. Even more so after class. 4 hours is a long time for anyone to sit and listen to so much technical stuff and he was tired before we even went in.
He was able to sleep a bit when we got back, but IV therapy came to change out his site (it has to be changed every 4 days to minimize the risk of infection). So she poked and prodded and blew out one of his veins (which hurt a lot Keith said) but finally got a site to work. She was none too nice. Just sayin'.
Last night was a little better. He was able to sleep before dinner came and then nap off and on. Keith said he got pretty good sleep last night since the nurses tried to leave him alone for longer stretches.
Now on to today!
Keith feels much better this morning and is planning on going for a walk once his team comes in. Then lunch and a little nap, then maybe another walk.
His numbers are still plateau-ing. Even his bilirubin. They actually all went down a little, but not enough for the docs to say he is trending down. His INR (a number that measures how thin your blood is and therefore your potential risk of bleeding; the higher the number the thinner the blood) is up but that is to be expected since his liver is so sick.
The urine and stool samples came back clear of infection. His blood cultures are not back yet. The white blood count went up again, but that can be due to the steroid. The docs just have to be extra vigilant with Keith because he can't go into a surgery with active infection. Especially once they put him on immuno-suppressants. The infection would run rampant.
So now we just keep waiting. Waiting is hard. Sickness is hard. Being away from our babies is hard. But to quote Glennon from a blog I follow on Momastery.com, "We can do hard things". We will get through this. One thing we took from yesterday's class, something that every transplant survivor kept saying over and over, you don't know how sick you really feel now until you wake up after the surgery. Even though you will be tired and sore, you will feel incredible. I am holding that little tidbit close to my heart and drawing strength from it.
Oh, one more thing: I GET TO SEE MY BABIES TODAY!!!!!!!!!!!!! So incredibly excited! Just writing about it now is making me cry. Tomorrow is the day of my cousins' open house in Grand Rapids. Mom and Dad are bringing the kids down and I am driving to GR to spend a couple of days with them. Jackson and Madelyn have no idea, so what a fun reunion that will be! I am heartbroken that Keith can't join us, but we'll all be together again soon and that gives me a small amount of comfort. Paul will still be here with Keith and that is good. There is no way I could go and leave him alone.
I would like to thank whomever it was that mowed our lawn for us while we have been gone. (Mom and Dad noticed it while they were at our house this morning.) I think Jackson's rings to his swing set were thrown in the middle of the backyard. I hope that didn't get sucked into the mower! My profound apologies if it did!
Will try to keep up the blog as much as possible while I am gone. Thank you all for your wonderful words of support and love through this site, on Facebook and direct email. If any of you would like to email me directly, you can send it
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on Wednesday, 12 June 2013.
Posted in Newest Info
Keith had a pretty relaxed night last night. Well, as relaxed as one could get here. Watched the Tigers with his Dad and got as much sleep as possible.
He's been reading the liver binder and just got through all of it a few minutes ago. Lots of stuff we already knew, but it's good to have a reference.
Today is the transplant class so we'll be there this afternoon. It's 4 hours long and I'm sure we'll learn lots.
Keith's liver numbers have sort of plateaued, but his bilirubin continues to rise. It's at 51.9 now. His white blood cells have increased some too so they are checking him for infections again. Took blood cultures and a urine and stool sample. No fever though so that is good.
It's lunchtime now so I will try and write more this afternoon when we get back from class.
on Tuesday, 11 June 2013.
Posted in Newest Info
A laid back morning. I slept in a bit at Adam and Cindy's and got some rest. Keith got as much rest as possible. He is tired today. I stopped on my way here at Burger King and got Keith a smoothie. He's been craving one. Then we went for a walk around the courtyard. It is a beautiful day, sunny and about 78. They have a section of the courtyard that is sort of like a butterfly garden and today they were getting ready to release a bunch of butterflies. The sun was bothering Keith's eyes a bit so we headed inside before we could see the butterflies released.
We wandered around inside for a bit but Keith wanted to head back and take a bit of a nap before lunch. He ordered and was just shutting his eyes when a couple of the liver surgeons came in. They said that the whole team has been talking about him and they wanted to come take a look and just see what kind of condition Keith is in. I feel that they were very pleasantly surprised. Even though Keith looks sick to us and is EXTREMELY yellow, to the surgeons, he actually looks pretty healthy. That was good to hear since we really have nothing to base this on. They said that most of the patients LOOK sick and Keith basically just looks yellow.
The MELD score that I've discussed before (an indicator of how sick the patient is and where they get placed on the list) is pretty high. The other day he was at 38 and today he is at 31. I believe it's out of 40. So, you know, high. Even though his score is up there, the surgeon feels that they can take their time selecting a perfect liver for Keith. He compared it to buying a used car. Do you need a car that has 80,000 miles on it or can we hold out for one that only has 5,000? They feel that they are going to wait for a Mercedes instead of a run down truck for Keith. That was their analogy! So that's good to hear. They feel that they have some wiggle room as far as time goes to make sure he gets the best.
We asked a little about the actual surgery itself. If there's one part that's more complicated or longer than another. For instance, does it take longer to get Keith's liver out than it does to put the new one in? He said that there are 3 phases, getting Keith's out, putting the new one in and making sure that all of the major blood ways are connected, and then doing all the little stuff like connecting the exterior bile ducts and connecting the main bile duct to the intestines. The main surgeon talking said that each section takes about 2 hours.
They also let us know that as far as Keith is concerned, clinically there is nothing else that needs to be done. He and his colleagues are ready to go. So...he gave the go ahead to get Keith listed! So within one hour Keith will be on the list! The ball is rolling people! Now we just need prayers that during another family's unbelievable loss and sadness that they give a gift that we will never be able to repay or thank them enough for. My heart goes out to the family that will look past their grief and give us the gift of hope and time.
All my love to all of you. Please remember to pray for that other family too.
A donation page has been set up for the Schaub family. If you would prefer to send something directly to the family, please use the following address:
18803 Robin RidgeInterlochen, MI 49643
Gene, a volunteer from a local church, visited Keith in the hospital and presented this poem and Keith wanted to link it to his blog. Read "The Challenge"
Keith says if you have a story or poem you would like to link or display on the blog to click here to submit. Thank you for all the support and prayers for Keith.