March 5, 2014

The Rest of the Hospital Story

Quick update before we dive into all the details: We are home. Kurt was released on Tuesday, February 25th. He was in the hospital for 3 weeks and 1 day. We are all trying to adjust to being back home and getting caught up on everything. The mail pile alone was overwhelming but we are getting there. Kurt tires easily and is getting frustrated with his limitations. He rests when he needs to and tries to get out of the house and do something everyday. The doctor said that after something like this it is an easy 3 weeks to recover so we know it will just take time. The kids are all doing good. Each one is dealing with it in their own way so they keep me on my toes. Neither Kurt or Trevor are sleeping very good so between the 2 of them, I am usually up a few times during the night. Kurt and I are just exhausted. I don't know another way to describe us. We are just so tired and trying to keep up with everything ~ the business, the kids, the homework, the house, life. It all seems to work out so we just keep taking it one day at a time.

They were not able to do any procedures or operations to repair or fix the problem. He still has a partially block, dissected celiac artery with an aneurysm. Kind of scary if you ask me. All he did was stand up when this originally happened so every time he sneezes, coughs, stands up, etc., I am paranoid something will happen again. I feel very unsettled as we adjust to this new normal. Chances are very slim that the aneurysm would rupture but the chance of this whole thing happening is so slim that that fact doesn't comfort me at all. He obviously falls into the very rare category. He has done pretty good. He hasn't taken pain meds since the Tuesday he came home except the night he woke me up at 2 am with pain. Scared us both. His pain got to a 5 but came back down. We sat up for 2 hours waiting to see what would happen. It is just the unknown that is so scary. Is it going to tear more? Is he going to develop a new tear? Could something happen to that aneurysm? The unknowns are hard. Very, very hard. I feel like he is a ticking time bomb waiting to go off. Hopefully he never will but just the possibility keeps me nervous. He is still really tired and weak. He can't lift anything over 5 pounds so he can't do much at all. He says he just doesn't like the way his body feels - whether that is from 3 weeks in a hospital, recovering from his injury and procedures, the blood thinners or something else going on in there, we just don't know. Like I said, it's the unknown that is so scary and hard to deal with.

So, back to the story. We left off on Thursday, the 6th, when his blood pressure gave us a little scare that night but he was fine. 

Friday, February 7th
I arrived at the hospital, Mercy General, and we waited for them to come get him for another ct scan. If it was the same or better, they were going to release him. If it was worse, we would have to create a new plan. They did the ct scan and then his 2 doctors and the PA came and saw him before the results were back so they didn't have much to tell us. We were bummed that we didn't know the results. We asked our nurse a little later if he could tell us and he said that he couldn't, only the doctors can give you the results. Since all the doctors had already been there we didn't know how long it would be until one came back to give us the results.

Let me just add in here the "joy" of hospital roommates. And by "joy", I mean "torture." The rooms were all shared at Mercy General and from Wednesday to Thursday, we didn't have a roommate. Then Thursday we got a roommate. Poor guy. I felt really bad for him. He was really dirty and unkept and had some condition that made it hard for him to control his body. He groaned, moaned, thrashed around in his bed and made a lot of noise. He dropped a lot of things and so I was frequently going over to his side to help him. Then there were times when he would start yelling "NURSE! NURSE!" really loud. I would run and get his nurse for him. I was really concerned about Kurt being there over night with him and if he would even be able to sleep. Let alone, I didn't want Kurt getting up all night to take care of him. About 6 pm that guy's nurse came in to check on him and then came over to us and asked how we were doing. He just happened to mention that we could ask to move rooms if we wanted too. I had no idea that was an option. I went straight to the nurses station and requested a room change. I tried to wait until they had Kurt moved before I left but it was taking forever and I had to get home to the kids so I left before he got his new room. I met his new roommate the next morning on Friday. The guy watched M-TV ALL. DAY. LONG! It was horrible. In case you were wondering, M-TV is full of garbage. We couldn't stand it. Plus, every time the roommate talked to someone on the phone, he cussed like a sailor. We couldn't wait to get out of there!

So anyways, the nurse finally came in later on Friday and said that while he couldn't give us the results, he could tell us that discharge orders were written. Woo Hoo! We knew we were getting out of there! So we waited and finally the doctor came in to discharge us. When you are admitted to the hospital, you are assigned a primary doctor plus whatever specialists you need. We had 3 primary doctors during our whole stay and I have to say that we didn't like a single one of them. They seem completely pointless and egotistical. They were beyond frustrating. So the one we had a Mercy General was an old guy and he seemed to be at the point of needing to retire. He messed up on one of Kurt's medicines (wrote him an iv prescription for him to take home - uh, no iv's at home!). He also wrote Kurt's prescription for pain meds at home and then we were out of there! Kurt was free!

I got him home at about 4, dropped him off and then headed to the store to get his prescriptions. I got back home and gave him his first dose of pain pills. He was doing good, tired but was ok. We had a few friends come by and say hi to him. That night was pretty rough though. Turns out that the primary doctor wrote the prescription saying that Kurt could take the pills 4 times a day, which meant every 6 hours, but unfortunately the medicine wore off at 3.5 - 4 hours and he was miserable until he could take the meds again. We were watching his blood pressure making sure it didn't go too high. We were suppose to keep it under the 130 mark but it kept fluctuating with his pain. 

Saturday, February 8th
I gave him meds at the 8:30 am scheduled time but he didn't start feeling any relief until 10:30. It took 2 hours for the meds to kick in. It became apparent that we were definitely losing the battle against the pain. We couldn't get it under control. We debated back and forth whether to take him back to the hospital or not and finally decided to after his blood pressure went up again.

Turns out that Mercy General messed up. So Kurt is one of those people that pain meds don't work very good on. It takes a lot of pain meds to have an effect on him. For example, he was taking 2 Norco pills that were 7.5 - 325 each and they were not working on him. While he was at Mercy General for those 3 days they were using a drug called dilaudid which he was receiving through his iv. We were told that dilaudid is about 6 times (one nurse said 10 times) stronger than morphine. Mercy General just stopped the dilaudid and sent him home. They should have transitioned him onto the pills before they released him. So stopping the dilaudid cold turkey and sending him home with the prescription set him up for problems with pain management. Gee, thanks a lot! The other thing they did wrong was the fact that they had him on dilaudid for 3 days without giving him any stool softeners or laxatives. Narcotics are known to cause constipation and they took no action to prevent this; which caused serious problems later. Gee, thanks again Mercy General!

So Saturday morning, we headed to Mercy San Juan's ER (it is closer to our house than Mercy General). Want to do something fun? Walk into an ER and tell them that your husband has a dissected celiac artery and aneurysm and watch them react. This ER had a little sub-triage area that you had to go through before you sat down and as soon as I told them that, all 3 of them pulled up his file on the computer and dived into it. They were like "did you see this?" and point to something on the screen, "did you see that?" and point again. He immediately got marked for the next bed. We waited just a little bit before they called us back in. We had a great time sitting in the ER. Kurt's meds finally kicked in and he wasn't in pain and the poor guy next to us was a crack up. We silently giggled the whole time listening to him. It was hilarious. Good times in the ER. That's what our life has come to.

They decided to do another ct scan so off Kurt went once again for that test. When they came in with the results, they said the same thing the first ER said "This just never walks through the door." It was like they just didn't know what to do with us. People don't walk in with this condition. Either they die from it never realizing there is a problem or they don't know about it. They explained to us the seriousness of  the condition and we were like, "uh ya, we know. That's why we are here." They decided to admit him so that we could get his pain under control again. They wanted to put him on morphine which I had to explain that it doesn't work for him. He doesn't feel any effect from morphine but that is their go-to drug so they all want to start him out on it. I have to fight and say "No! It doesn't work." I really wish they could put something in his chart so they would know this and just skip this step. Every time we switched rooms, moved hospitals or got a different doctor, they all want to put him on morphine. So frustrating! Anyways, we were once again in the hospital. 

We called our nephew and his wife, who had offered to stay with the kids the week before, to see if that offer was still on the table. They agreed immediately and came to "move in" to our house with the kids. The week before I had different people watching the kids and I came home at night which was hard to balance everything and to remember who was watching them when. I wanted some consistency for the kids so that their world was a calm as possible. We are so grateful for Kaulana and Michelle coming to provide that consistency for them.

Kurt Saturday night

Sunday, February 9th
Sunday morning our new primary doctor came in. She was the worst. She didn't listen to us, she immediately took him off of dilaudid and put him on pain pills with morphine as a back up, which I fought her on big time, and she didn't seem to understand what his condition was and just wanted him off the dilaudid. She just kept saying "you know what I mean?" and I wanted to yell at her "Listen to us! Do you know what WE mean?" It was so upsetting. I was a mess the rest of the day. I was exhausted and just completely drained after fighting with that doctor. Our nurse was in there when that all happened and said she had never seen that side of her and tried to convince us that she was a really good doctor. Basically the doctor's point was that she wanted him off dilaudid because it was addictive and he couldn't go home on it so she wanted to switch him to the pain pills so that he would be ready to go home when they decided to send him home. That all made sense and was probably the correct path to take but the way she did it was horrible. It was very upsetting to us. The other problem we had was that Kurt hadn't had a bowel movement since Tuesday, thanks to all those pain meds that General filled him with so they started a serious attack on that problem and thankfully, later that day, he was able to go but it was a rough battle. Poor guy had to drink more goop and gunk than I would ever want to drink. The kids brightened our day with gifts for Kurt so we hung them on the wall.

You might have noticed the wall is an accordion style wall. This wing was a mixture of shared and private rooms but even the private ones weren't totally private. We were lucky enough to have this accordion wall between us and our neighbor. It wasn't sound proof by any means but at least it was better than the curtain that some rooms had between people. We had to share a bathroom with this neighbor. We were in the old section of the hospital and the room was . . . old, gross, nasty, old, stained, gross, did I mention nasty? Oh, and small. It was a tight fit in there but at least it was better than the room at General.

Kurt was able to manage his pain on the pills for the rest of the day which made us realize that maybe that doctor was correct in switching his meds. We still didn't like her but understood why she did it. We were hoping that since we had gotten the pain under control on the pills, that he would be able to go home soon.

Sunday was the first day we met Dr. Beal. At Mercy General, Dr. Hayes, the vascular surgeon, had been assigned Kurt's case because he was the one on call when we were admitted. Dr. Beal is his partner. Dr. Hayes was always very quick in and out and didn't leave a lot of time for thinking and question asking. When we were admitted to Mercy San Juan, Dr. Beal was the one on call and came to talk to us Sunday morning. She came in, sat down and discussed with us what was going on. She gave us time to think and ponder and come up with questions. We really liked her. She said we made the right choice to come in and get the pain under control again. She also said the best approach was to watch and see what happened with his condition. She said we might be able to go home on Monday.

Monday, February 10th
The pain pills continued to work over the night so we felt pretty confident we would go home. Dr. Beal came in that morning and our argument for going home was that he was on pain pills, no iv meds and they weren't doing anything for him at the hospital that we couldn't do at home so why would we need to stay any longer? She was hesitant to let us go so she only agreed to it after he ate lunch to see how he did. 20 minutes later the nurse came in with the discharge paperwork and Kurt was literally signing his name when we looked up and saw Dr. Beal, Dr. Hayes and their (amazing) PA Cathleen walk through the door. We were nervous. Anytime a whole vascular surgeon team walks through your door, you know something is up.

After Dr. Beal had left our room, she met with Dr. Hayes and Cathleen and they reviewed his scans again and just didn't feel comfortable letting him go home. They decided they wanted to try an angiogram and see if they could get a stint put in there. (An angiogram is where they go in through the artery in the leg and up into the aorta to access either the heart or other artery; in our case they would access the celiac). We were disappointed that he wasn't going home but knew that if they were not comfortable with it, there had to be a very good reason. So we prepared for a longer stay. That evening the kids came to see Kurt. Kayla was there but she refuses to have her picture taken these days.

Tuesday, February 11th
Kurt woke up at about 6 am and said his pain was getting worse. I immediately went and got our night-shift nurse, Sat. He gave Kurt his 2 Norco pills. By 6:30 Kurt told me to go get Sat again because the pain was increasing. I walked down the hall to the nurses station and told Sat that Kurt wanted him again. He came right away and by the time we walked back into the room, Kurt was sobbing. He was in so much pain. Sat and I were both a little bit shocked because he had been doing so good up to this point. Things went really fast at this point. Kurt was screaming and crying and in so much pain it was scary. Sat immediately started giving him the morphine, which was the medicine on his file for "break-through" pain. I explain to Sat that morphine doesn't work for Kurt. Kurt was coming off the bed in pain, he was bright red, sweating like crazy and his blood pressure went through the roof. The blood pressure machine was beeping like crazy because it was so high. Sat called out a rapid response and within seconds the room was cleared of all furniture, the crash cart was rolled in and a lot of people filled that small room. Sat called the doctor and was literally arguing with her trying to get dilaudid added back onto Kurt's chart so he could give it to him. Finally she agreed so Sat immediately gave him a dose, then another. So Kurt had Norco, morphine and dilaudid in him and he was still in agony. The blood pressure machine was still going nuts. I was at his head trying to wipe off his face with a cool, wet rag and trying to get him to breath. He kept holding his breath because it hurt so bad. It was the scariest thing I have ever been through. Honestly, I thought he was going to die. I thought there was no way his body was going to be able to deal with all this. Either his heart would give out from the stress of it all or his aneurysm was going to rupture because his blood pressure was so high. I thought at any minute his body would just stop working. The rapid response team all just stood there waiting for him to crash so they could try to save him. It was the scariest, most horrible experience of my life.

I started having thoughts: what am I going to tell our kids? They just saw him last night and he was fine. How am I going to raise 4 kids by myself? What am I going to do? Then the worst thought of all: Trevor won't even remember his dad. He loves his dad so much and they have such an amazing relationship and he won't even remember him because he is too little. I was so shaken up. I couldn't even believe what was happening.

His pain came in waves, like contractions so he had tiny, little breaks of mild relief. Finally, after what felt like forever, the pain started to subside. I think it was about 7:30 or 8 am by then. Sat was off at 7 am and I remember him being on overtime but he wouldn't leave Kurt's side. He was amazing. He took control of the situation, fought for what Kurt needed and helped him get through it. We loved Sat and were excited any night he was our nurse. We had him several nights and even on the nights that he wasn't scheduled to be our nurse, he would come down and check in on Kurt to see how he was doing. He was a great person!

This picture is actually taken several days later when Kurt was strong enough to be up walking around again.

Kurt was able to recover from that episode and they performed the angiogram through his leg later that morning. I called his sister, April, and her and her husband, Rick, came down to be with me while he had the procedure done. My dad also came to be at the hospital to be with me. One of my roommates from my college days happened to text me that morning right after everything had happened and I told her about it. She drove 45 minutes to come be with me too. She was so sweet!  Unfortunately, they were not able to access the celiac artery because of the angle. They came up his aorta and tried to turn into the celiac but it isn't the easiest turn and they were not able to do it. Kurt was exhausted and wiped out that afternoon but managed the pain with the pills again. They decided to go through his arm on Wednesday. The arm is a harder access point but the angle should be better for getting into the celiac. The arm also had higher chance of complications which is why they didn't do it first.

Wednesday, February 12th
Kurt woke me up at 2 am and said it was starting again. He could feel the pain coming. I ran and got his nurse, Clarissa, who had been warned about this. She came in immediately with the dilaudid meds and gave him a dose. This seemed to stop the pain from escalating, at least for a little bit, but then at about 2:30, it got out of control again. While the morning before had been waves of pain, this time it was just a steady, unrelenting pain. They always ask "on a scale of 0-10, what is your pain?" At one point he was yelling, "it's a 14! It's a 14!" Kurt realized that yelling and moaning helped release some of the pain so he yelled and moaned a lot. At 2:50 I called April and Rick and told them to get down there. They arrived at about 3:40 and it was still going on. He was in so much pain that I thought I was watching him die again. Horrible doesn't even begin to describe it. I don't know how to describe what it was like to watch him in so much pain and thinking that he wasn't going to make it. My legs were shaking so bad as I tried to stand up by his head and talk to him and calm him down. Clarissa also had to call out a rapid response so once again our room was cleared, the crash cart was rolled in and we had a ton of people in his room. A main head nurse/charge nurse came in with the crash call and she was really worried about him. She wanted to move him to ICU but couldn't without a doctors order. She called ICU on her own accord and told them to get a bed ready. Then she tried to get ahold of the doctor to get the order written. I supported her 100% because I wanted him to be watched like a hawk. They never ended up moving him - I don't think the primary doctor thought he really needed it (but she wasn't there seeing this happen!). When he seemed to be stabilizing, the crash team disappeared. When the pain started to subside this time, it only went down to an 8, which is still high on the pain scale. He was miserable and just begged for more meds. After a while, Kurt couldn't respond to the pain anymore and just seemed to lay there in a sleep mode. He was still in agony, just completely exhausted and couldn't do anything. That was almost scarier than the screaming and crying because I didn't know what was happening inside him. At least with the screaming and crying I knew he was fighting but this stillness made me scared that something else was going on but I also didn't want him screaming in agony so it was a very confusing situation. By the time Dr. Hayes (the doctor on call that night) came in, Kurt appeared calm but I tried to explain to him that he was still really hurting and that he was just too exhausted to do anything about it. So frustrating that they never saw how badly he was hurting because it seemed they didn't believe us as to how bad it was.

Anyways, here is Clarissa. She was another amazing nurse. We actually had her Saturday night when Kurt was first admitted and we had her several times as well. She was awesome in the fact that she didn't know about his condition so she took it upon herself to research it so that she would know the best way to care for him. We were also very excited for nights that she was our nurse because she was so amazing. When they were talking about moving him to ICU, Kurt said he wanted to take Clarissa with him because she did such a good job making sure she was doing everything she could for him.

Because of all his pain, they moved Kurt up on the schedule and got him in for the 2nd angiogram first thing in the morning. He was still in so much pain that he was begging them to just knock him out for the procedure. Unfortunately, they couldn't do it because that room wasn't set up to put people under. He was absolutely miserable. It was so sad and sickening for me to watch him in so much pain  and know he was headed into a procedure that he would be awake for and it was so scary not knowing what was going to happen and if he would be all right.

The procedure was long. April, Rick, my dad, Nikki (my roommate - she came back for a 2nd day), Lorraine and Christine sat with me during this procedure. I will be honest and say that I was a mess. A complete and total mess. I had hardly eaten Tuesday and I couldn't eat Wednesday either. My nerves were shot and my stomach was in knots. I had been through 2 horrific events where I thought I was going to lose my husband. I was pushed to my limits and couldn't handle anymore.

They finally said we could go see him and when I asked him if they were able to get the stint in he said he didn't think so. I was devastated. We all were. That was suppose to fix this. It was suppose to prevent anymore attacks of pain and it had failed. The tear had formed a blood clot in the artery and that was why they couldn't gain access to the artery. We thought he would now need major abdominal surgery. The surgery is very invasive as to get to the celiac artery, you have to move all the organs out of the way and they don't like to be messed with. Then once they get back there, they would have to clamp off the aorta (the main artery) and cut blood flow off to the lower half of his body including the organs in his abdomen. Sometimes the organs don't respond well to having their blood flow cut off so there is a risk of the organs having problems after the surgery. You need to have 2 vascular surgeons in the operating room for the surgery. The whole concept is just so scary. They took him back to his room and my friends went into planning mode. They were amazing! I couldn't even think straight so they just figured things out for me. They bought me food, stayed with me, figured out what was going on with my kids, etc. They just took care of everything. I will be forever grateful for their abilities to see what needed to be done and doing it. I was in no shape to be able to do anything other than meet Kurt's needs.

They gave him a pump for his pain meds so he could push the button whenever he felt he needed it. This worked really good and kept his pain away for the most part. He was exhausted and had been through so much that he tried to sleep a lot.

Thursday, February 13th
Thursday was a rough day. Kurt was having a hard time recovering from everything that happened the day before. He felt like he had been hit by a truck. He hurt everywhere. He felt sick and was miserable. It was not a fun day. Anytime he said that he hurt, my legs started shaking and my stomach knotted up as I thought we were preparing for another attack. Ok, so I was a mess this day too. I would eat 2 bites and then feel sick to my stomach so I had hardly eaten since Tuesday. Every time someone called I would end up crying like a baby on the phone. I was so scared and exhausted. April and Rick came to sit with Kurt so that I could run home, shower, see the kids, try to explain to them what had happened without completely freaking them out, pack more clothes and come back. The whole time I was home, I was anxious to get back to Kurt. I was so worried about not being with him if something happened. Kurt's dad and stepmom arrived Thursday afternoon to relieve Kaulana and Michelle as they had a funeral to attend in Southern California. I went back to the hospital that afternoon. Dr. Beal came in and said she didn't think he would need the major abdominal surgery, which was a huge relief. We just tried to keep his room dark and quiet so that he could rest and try to recover from everything.

This is Kurt's arm, 1 day post-angiogram.

Friday, February 14th - Valentine's Day
Even though they were pumping him full of fluids and stool softeners and laxatives, we had our constipation problem back. At 2 am we were walking the halls trying to get things moving for Kurt. His colon was not a happy camper. They had to get aggressive again towards his constipation problem and were able to get things moving again. The constipation problem led to another problem - Kurt didn't want to take pain meds because they caused the constipation but if he didn't take them, he was in pain. It was a real battle and balancing act trying to keep him comfortable and not constipated, poor guy. Kurt had also received some liver damage probably from a chunk of the blood clot breaking off and getting into his liver. It wasn't major damage but they were watching his liver closely and the numbers continued to improve daily.

Both Dr. Beal and Dr. Hayes were going to be out of town this weekend so the plan was that their senior partner, Dr. Clayson, was going to watch him. If anything started going the wrong direction, they would transfer him down to UC Davis and they would perform the surgery there. We prayed this would not happen.

They did an MRI to try to get another look at the artery without using all the die and radiation that the ct scan uses. They were not able to get the pictures that they wanted so Dr. Beal talked to the radiologist before she left and explained exactly what she was looking for. They made some setting adjustments and they were going to do it again on Saturday.

Saturday, February 15th
We actually got a decent nights sleep Friday night to Saturday morning. We had hardly slept for 11 nights and this night we actually got some sleep so we felt better on Saturday. Dr. Clayson came in and met with us. They did the 2nd MRI to look at the celiac artery.

3 days post-angiogram.

Sunday, February 16th
Kurt was feisty. He was done being in the hospital and wanted to go home. He couldn't stand our room anymore (remember how gross and nasty it was?). He was willing to try to make a break for it but he moved so slow, he knew they would catch him before he got to the elevators. For some reason, his sense of smell became super sensitive and he could smell everything and he hated it! He took lots of walks to get out of our room but the halls didn't smell much better. He was going nuts in there. I took that as a good sign that he was feeling better because if he didn't care then that meant he didn't feel good enough to notice. Dr. Clayson came in and said the radiologist thought the clot looked stable and that Kurt might be able to go home on Monday, depending on how Dr. Beal thought it looked. They agreed to reduce his number of iv's from 3 down to 2 and remove his heart monitoring equipment in preparation for his release. He showered and even got permission to leave the floor and sit outside. Unfortunately, he ran out of energy before we made it off the floor but I think he felt better just knowing he could escape if he needed to.

4 days post-angiogram

Monday, February 17th
We had high hopes of going home today. Kurt had some more pains this morning which scared us. They spiked pretty quick and then came down pretty quick. They started giving him Nitro with the attacks and it seemed to help settle them down quicker. We were upset that he had gone several days without pain and now he was experiencing it again. Dr. Beal came in and she said that she didn't like what she saw on the MRI. The radiologist and Dr. Clayson had looked at the scans as it was stable, meaning it hadn't changed. She was looking at the scans hoping to see that it had "organized" (meaning the clots had hunkered down and attached to the artery walls and had started to solidify) and I guess that was not what she was seeing. She said she thought that we needed to do the major abdominal surgery on Wednesday. We were upset and Kurt looked like he was physically hit when she gave us the news. We went from thinking we were going home to planning for a major surgery plus at least another week in the hospital. We were devastated. Kurt asked and begged to be moved to another section of the hospital. The drama on this floor was just too much. A "gangster" guy had moved into the room across the hall and played rap music really loud. We had asked to have him turn it down but it didn't happen and there were several security guards watching different patients on that floor. We were just miserable there. She said she would see what she could do. We started making arrangements to prepare for the surgery. I went home to once again shower and get more clothes. I packed a bigger bag planning on a longer stay this time. Dr. Beal called back while I was at home and said that they decided not to do the surgery on Wednesday. They were trying to gather more information from different doctors all over the country and even up in Canada. They were getting a 50/50 response as to whether they should do the surgery or not. They wanted more time to figure it out. We were glad that the surgery was on hold but it was very scary not to know what to expect or to know that they don't know how to help you.

Tuesday, February 18th
We were moved to a new room! We were so excited! It is a private room with our own bathroom, thermostat and we can shut the doors and not hear any of the hallway noise. We were so blessed! We loaded all our goods onto the cart and happily said good bye to the 4 North wing!

Our new room was at least twice as big as the last one. Plus it was in the new section of the hospital so it was CLEAN!!!

That couch behind me folded into a bed so I had more space to sleep.

Kurt liked to raise his bed up high so he could look at the view out the window.

After they moved him to his new room, he went down for an ultrasound. They wanted to look at all his organs and make sure nothing else was having problems in there. They had noticed on the other scans, and the ultrasound showed it too, that his gallbladder wall looked thickened. They weren't too sure if that meant anything but they were watching it.

He had had to fast for the ultrasound so he was starving by the time he got back to his room. I had picked up lunch from the cafeteria on my way back to the room so I shared my lunch with him. After lunch they have him some drinkable potassium because his potassium level was low. This was a horrible drink and ended up making him throw up violently. If you ever have to take potassium, ask of it in the iv - the drinkable stuff is no good!

Every time his body exerts a force (coughing, sneezing, vomiting, etc.) I am so worried that he will tear the artery more or the aneurysm will rupture. I think this will be an ongoing worry until we do something to block off that artery.

6 days post-angiogram

Wednesday, February 19th
They started to wonder if his gallbladder was causing him trouble because he was battling nausea a lot and was still having some pain so they decided to do a HIDA scan to test his gallbladder. They found that it wasn't contracting as it should. Dr. Beal went to talk to a general surgeon and see what they thought but she was thinking it might need to be removed.

Thursday, February 20th
Kurt had a great day today. He was up, showered, and walked around the floor. Dr. Jakobsen, a general surgeon, came and saw us first thing in the morning and said she didn't think the gallbladder needed to be removed. She thought that it was just irritated from everything going on in there and that it wasn't contracting correctly because it had hardly been used the last few weeks. She really thought it would be just fine so the surgery for that was put on hold. His blood work also looked fine for the gallbladder so her suggestion was just to watch it. She thought it would settle down.

Kurt had received some cards from his young men at church. This made him so happy. We put them in the window and every single doctor or nurse that came in commented on his cards. Kurt felt so loved!

The kids were able to come see him. I picked them up from school and brought them down. They had a great time spending time with dad.

I could just hug this little guy all day long. Poor baby just didn't understand why mom and dad were not coming home. 

Since the surgeries had all been put on hold, they put him back on his blood thinners. In order to leave the hospital, his INR had to be between 2.0 and 3.0. Today he was at 1.5.

Friday, February 21st
Kurt showed signs of a reaction to the heparin they had him on. It is a blood thinner through iv and he had been on it for awhile (I can't remember when they started it - I think it was the day the arm angiogram failed). His platelet count dropped so they immediately stopped the heparin and ran a special test to make sure it was the heparin that dropped the platelets and not something else. It is a test that has to be sent out so the results will be back in a day or 2. Only 2-3% of people will have a reaction and, of course, Kurt was one of them. They started him on coumadin, which is a pill blood thinner. He had a good day today and was even able to get outside for the first time in weeks! His blood level dropped to 1.3 because of the change up in blood thinners.

Saturday, February 22nd
He started off with a good day. The kids came to see him, which always cheered him up.

I could tell he was hurting but he didn't want to take any pain meds because of those darn side effects so he tried to tough it out. Late that afternoon he got really sick to his stomach and was hurting pretty bad. He took 2 Norco but needed the dose of dilaudid through his iv to get it under control plus they had to give him anti-nausea meds through his iv too. We had plans with our friends, Steve and Christine, to have a double date in our room. When they arrived, he wasn't feeling good at all. It took a little bit but once all the meds kicked in, he felt better and ate the yummy food they had brought us. He actually ate the whole plate they brought him. We each had the same super yummy teriyaki chicken, rice and veggies and none of us even came close to finishing our plates but he ate the whole thing! I guess we were going to test out that gallbladder really good tonight! 

His blood level was at 1.4 today and we got confirmation that yes, he was in fact allergic to heparin. His new primary doctor (he got a different one when he switched rooms) came in this morning and made me mad. She had been pretty good up to this point because when we first met her, she came in right when Kurt was throwing up from the potassium. She felt really bad for him and was really nice every time she came in. But this day she came in and said that she was increasing his coumadin dosage from 5 mg to 6 mg. We had been told by our nurse and Cathleen, the vascular surgeon's PA, that the pharmacist didn't want Kurt's level going up too fast, that they wanted it to go up nice and slow. I mentioned this to her because I think you need to always ask questions, especially when you get differing opinions. Her response was literally: "I am the doctor. I do not listen to pharmacists. They listen to me. I make the decisions!" Ok . . . good to know. So I went around her and asked Dr. Clayson (who was covering that weekend) and I asked our nurse. Our nurse (his name was Ilie and he was also awesome) had called the pharmacist as soon as he read her notes to increase the dosage. The pharmacist said that it was a reasonable thing to do. Dr. Clayson also went to check and see what she had done and said the same thing - that the amount she increased it was reasonable so I felt better about that. I just don't like the egotistical games those darn primaries seem to play. (Just a side note: it is quite funny to see how they back down when the vascular surgeon walks in the room! There is a definite pecking order.)

Sunday, February 23rd
It was a good quiet day. His blood level was at 1.6 so we were not discharged again. I don't think too much happened this day. A helicopter landed at midnight so we got up and walked down to see it but it was too dark and we couldn't see anything. (The waiting area on our floor had a perfect viewing of the helicopter landing pad and Kurt had been waiting all week to see a helicopter land. One finally did and we couldn't see anything. Bummer).

Monday, February 24th
Blood level at 1.8, almost there! Kurt was up most of the day. He did take a good nap late morning. Overall, just another quiet day. We like those days. That means nothing crazy is going on. No tests, nothing. I went out and got us lunch from the teriyaki place that we ate the other night with our friends. When I came back, I was hit in the parking garage. Luckily the damage was very minor and didn't do more other than shake my already frazzled nerves. I didn't even tell Kurt about it until today because I was typing this. I didn't want him worrying about one more thing.

We had received more cards from our nieces and nephews and so our window was even more beautiful. We had a great time reading each one and felt so loved! Thank you for our notes!

Tuesday, February 25th
Blood level was 2.3!!!! We were going home! Our nurse was one we had not had before but we liked her and she understood our need to get out of there! Everyone did their paperwork as quickly as possible so we were moving pretty quick. I went to get the car and they called for a discharge transport. Kurt decided he didn't need to wait for the transport and walked out with the nurse pushing a wheel chair behind him just incase he got tired. He was so excited to be released.

I think someone else was excited to have his daddy home!

Napping buddies

13 days post-angiogram

Wow. I did it! It has taken me a week to get this typed and finished. I can't believe everything we went through. It seems like a blur of total crazy. We completely lost the month of February. I worked in the office February 3rd and didn't go back until March 3rd. A whole month is just gone.

Like, I said before, Kurt is doing good. It is just really scary that he isn't fixed. Nothing has changed and that means that if it happened before, it can happen again. And that is our biggest fear. We just keep praying that he will continue to heal. The blood clots will never go away but hopefully the tear will heal and become stable. I just don't like that aneurysm sitting there. I feel like as long as that is there, he is in danger.

I am going to do a post about what exactly he has because a lot of people don't understand exactly what is going on. Hopefully I will get that up quicker than this one. Please let me know if you have any questions, and I will do my best to answer them.

1 comment:

jared & amber said...

So glad he is home with you guys and that things are starting to get back to some kind of "normal". We are keeping you in our thoughts and prayers!