I used this blog to put my feelings down all of last year but my heart has been remembering so much of the actual stuff (though I am sure I have forgotten so much) lately that I must write it down. As I was driving home from Walmart the other day an ambulance passed me without its sirens on but certainly with a mission and it brought back so much emotion. I found myself crying as I was driving. Normally, I'm not much of a crier. Clearly I'm still carrying a lot of baggage.
So even though my son doesn't want to think about it anymore and doesn't want to be talked about anymore I have to put these things down.
February 6, 2015--Friday
Adam had been having a lot of itching skin and he went to his local doctor and had labs done. His liver numbers were up so they made an appointment for him to see his liver doc the following Monday.
February 9, 2015--Monday
Adam went to see his liver doc and they did a liver biopsy. His liver looked great but they found a stricture in his bile duct. They said to come back on Friday and they would do a simple procedure to open the duct and possibly put in a stent.
February 13, 2015--Friday
Adam entered the local hospital after getting violently ill and experiencing shortness of breath and horrific pain following a "simple" procedure done at KU Med earlier that day to open a narrowing of a bile duct in his liver. Most likely the narrowing was scar tissue due to the sewing together of his vessels and his donor's.
February 15, 2015--Sunday
Our doctor following his case in our small town decided to send him to KU Med Center in Kansas City because his white count had jumped up considerably (9,000)and they wanted him nearer to his liver doc.
We waited a couple hours for the go ahead from KU and then Adam was taken by ambulance and we followed in our car. Anna was taken care of by friends as we had rushed out of church to attend to Adam.
When we arrived at KU they had Adam on the 5th floor in a room with another patient. He had been doing well with pain control in Sabetha and in the ambulance (it was given every 15 minutes) but now he had gone over 3 hours without any pain medication because orders had not been put in the computer for him. He was in agony.
By the time we left to head home in snow and ice they were getting orders for him and he let us know while we were driving that he was getting a bit of relief.
February 18, 2015--wee hours of Wednesday
We got a call from Adam in the hospital at 2 a.m. saying that he couldn't take the pain anymore and he needed help but no one was helping him. Craig called to speak to a doctor on call who promised to call back with information and we waited almost 3 hours and heard nothing. Craig headed to KU to get to the bottom of things and stayed in the hospital with Adam.
February 19, 2015--Thursday
I arrived to stay at the hospital after making arrangements for Anna to have someone to stay with indefinitely until we got things figured out. By the time I arrived Adam had been moved from 5th floor to 6th floor and then ultimately to the ICU. My first sight of him he was extremely yellow and his breathing was so labored that it made me feel sick to my stomach.
He had not eaten or had anything to drink since all of this had begun almost a week before. He begged us for a sip of water and we had to refuse him. It was the worst suffering you can imagine to see your child go through with the pain and the inability to drink anything in order to wet your mouth. He wanted us to "break the rules" and get him out of there.
Before the evening had even begun the doctors on his case for that week came to us and said that because of how sick he was and with his mental state degrading from the pain, the sickness and everything he was experiencing they felt it was best for him to be intubated and put under sedation in order to keep him calmer and allow him to rest a bit. I begged his ICU nurse to explain to him what they were doing and why before we were whisked out of his room and out to the waiting area outside of the ICU. For what seemed like an eternity we waited and sobbed our eyes out talking about how it felt so "end of life" and we couldn't believe all of this was really happening. Our church family was at a big Sidewalk Prophets concert at our church so we called who we could call to get support. I called my friend and Craig called his sister. I sobbed out what was happening to Vickie and she promised to pray. At one point we were both just sobbing into the phone and Trish calmly and confidently prayed for us giving us strength.
When they came back to get us and we went back into the ICU our son was intubated and looked like he was dying. It was probably the worst experience of my life (though we had been in almost this situation once years before). I asked the nurse whom I had asked to explain to Adam why they were intubating him what he had said when they told him what they were doing. and Jonathan said that "he said, I guess this means I'm not going home tonight."
Thus began 5 of the worst days of our lives to that point.
For 5 days we sat by our son's side, each of us holding a mitten clad hand of his, and spoke to him, prayed for him, sang to him and tried to calm him while he was sedated. One of the worst things for me as a parent was when we left at night to go sleep at the hotel. We had to let go of his hands! In the morning when we came back his hands were still tied to the sides of his bed as they had been during the night while we were not there to hold them. It KILLED me to see his hands tied to the bed. He couldn't talk but he wasn't completely asleep so he would get agitated from time to time and try to get whatever was in his mouth out though he didn't know what it was. The nurses would come in and suction out his lungs through this tape thing that ran along with the tube down his throat. It seemed a horrible procedure. Thankfully, he doesn't remember it. During this time his blood pressure was extremely high and they were concerned about it as were we. His kidneys were under a great deal of stress and it seemed he got more yellow every day. The sedation was decreased a bit each day and at one point he "asked" for a paper and pen in order to communicate with us by writing. It took a while sometimes for us to figure out what he was writing but he was incredibly good at communicating even though at times it was hilarious or scary what he was writing. He wanted his friends in "The Quad" to come to see him and he often asked for something to drink. We kept those papers to remind us of that time. He opened his eyes from time to time but only seemed to look at us vaguely with eyes pleading to get the plastic device out of his mouth. Once he wrote "why do I have a bird in my mouth?" The plastic that held the tube in place went across each of his cheeks and to him they felt like bird wings.
February 23, 2015--Monday
Extubation day! Getting that tube out of his mouth was one of the greatest moments of my life. Not out of the woods yet by any means but being able to communicate with him again regardless of how drugged he was made it so much better.
We stayed in ICU for a bit longer though I didn't write down how many days, though it was a couple of weeks. When he was ready Adam was moved to Unit 66( though I can't remember what day) to continue his care. During this time he still couldn't eat but eventually he was able to take sips and chips. He could have one sip of water or one chip of ice per hour and that was amazing. All he did in his mind was count the minutes until his next opportunity to have something cool touch his mouth. He could be watching TV or talking to someone and he would say "it is 23 minutes until I can have a chip". During this time he had had a biliary drain in his side to take the bile out of his body since the stricture didn't allow it to function normally.
There was a period of time where he had a feeding tube put in to help him nutritionally. If you've ever had one or know someone who has you know it is a horrible process getting it put in. You basically gag it down until it is in place. I think he had to have it done twice. One time his GI doc came into the room and did it himself because he was so good at doing it. Dr. G told us he had practiced on himself during med school so he could learn how to do it best.
We saw teams of doctors every day and some were students and others were part of the GI team that was in charge of his case. One day one of the docs who came into the room just blurted out that they had seen a marker that could possibly mean that this stricture problem was a result of cancer. I don't think I had felt the sickening thud in my stomach like that since my doctor had said the C word to me. Quickly after, I went out into the hall and asked that they not mention that word in front of Adam again as he had sort of heard it and had become upset by it naturally. I'm not sure that doctor ever came into his room again. He met with us later and profusely apologized for having scared us. It turned out many weeks later that we were informed that cancer was not part of the equation. So much relief! However, around the time that they first first mentioned it I had a phone conversation with my mom and she said "at least we aren't dealing with cancer." I had to choke back my fearful tears when she said that. Craig and I carried the fear of that around in our hearts and minds for many weeks until we were given the all clear.
They started to talk about sending Adam home with us eventually and he was given the chance to eat a little bit of pureed food. But it seemed to me that whenever he ate he pretty much threw up whatever he had eaten within a short period of time. But he wanted to go home with us and we certainly wanted out of there if we could do so. So when they got the feeding tube out and he seemed to get a bit better with his white count they released us to go home. All we had to do was take care of that biliary tube. At that time THAT seemed like a huge medical accomplishment for amateurs like us. We knew that going home was just a temporary thing until they could do surgery to correct what they could inside of him but we all wanted to go home in the meantime if we could. The doctor that sent us home did it a bit reluctantly saying that she didn't want us to have to come right back if something went wrong which it very likely could and we knew it well.
March 11, 2015--Wednesday
We got home fairly late in the day and though he was anxious to eat home cooked food rather than pureed hospital food Adam really wasn't able to keep much down without having a lot of acid reflux or throwing up.
Note: Up until this time Craig and I had both been at the hospital full time and Anna was staying with friends in Sabetha. She stayed with the friends even through this time we came home because of things she had to do at school and since the basketball team was going to state and they were playing in the pep band.
As we were getting ready for bed that night and doing what we needed to do with the biliary drain I saw that there was a serious leaking problem. We ended up calling KU to speak with a "fellow on call" and he talked us through the problem but suggested we take Adam back down the next day to have it looked at. Indeed, while I was at a morning appointment Craig got a call from the hospital and they wanted him back down there to look at the drain. So the guys went down and they fixed the problem. They were gone most of the day. So much for being home.
March 13, 2015--Friday
Adam was still not able to keep much of anything down except a little bit of fluids and just generally was not feeling very well. We called again and got some medication from our local pharmacy to try to help with the reflux.
March 14, 2015--Saturday
EARLY in the morning Adam woke us and insisted that he wasn't feeling well at all and wanted to go to the local ER. We thought maybe he just needed some more medication to help him so Craig took him over. Mid-morning I got a call from Craig saying that Adam's white count had shot up to 45,000 and that they were going to put him in a helicopter and fly him back to KU within the hour. Immediately I called my sister, my mom and Craig's sisters to tell them and started packing a bag to head back to KU. When I got to Sabetha they were still waiting for the copter to arrive. The doctor and the nurses on duty that day were all from our church and the doctor prayed over Adam in the ER before they took him. Once again watching them put my son into that seemingly very small helicopter was a surreal experience.
We got into the car and took off driving before they even had gotten out of the town's airspace. It took us 2 hours to get there and took them 20 minutes to get him there. Thank goodness it did.
When we arrived we were in yet another different ICU than the first time we had been there. Our 3 adult kids were on their way as well but when we walked up to the room Adam was in they shooed us away because there was a team of doctors and nurses putting an arterial line and a central line in him along with other assessments and emergency treatments. We waited in a hospitality room in the ICU while we waited for our kids. Not long after the kids arrived they let us go back to the room. One of my big, strong, tough sons started to cry at the sight of his brother. Adam was reassuring to us that he was going to be okay but he certainly didn't look it. We all knew better as well.
As the evening progressed we had already had a constant parade of doctors, surgeons, kidney experts, and other professionals parade through the corner room. There was a build up of a lot of infected fluid inside Adam and it needed to get out. CT scans and other tests had been done. They told us that they needed to get some drains in and get that fluid out-- probably 2 drains they said. They had to bring in the IR (interventional radiology) team because it was a Saturday so we waited for them to get there and they started to work on Adam around 9 p.m.
3 drains were put in that night. Total drains= 4.
That night I had to call Anna before she returned from the state tournament and tell her that she wouldn't be able to come home that night (instead of staying in Sabetha) after all. At that point she stopped believing we would ever come home.
Over the next many days we began the odyssey of dealing with drains, CT scans, in bed X -rays, and many other procedures that would become a daily part of our lives. During the first week they also did needle draws to pull fluid out of the spaces in Adam's body that were filled with infection. I think about 2 gallons of really nasty stuff were removed in that way during that time. It wouldn't be the last time that needle would go in to get fluid out.
The surgeons were brought in and they explained that nothing could be done yet with surgery because at this point it "looked like a bomb had gone off" in our son's belly and the spaces around it. We were told he could possibly lose his pancreas. His kidneys were in trouble and we had to see nephrology docs every day a couple times a day to check on his numbers there. We were warned that he may need dialysis to help him get through this time and he possibly would be on it for an indefinite period of time.
We prayed. We asked our friends, family, and church family to pray. The kidneys eventually started to go in a positive direction after several days and dialysis was never needed, praise God! At least one thing could be checked off of the list of concerns.
At one point, Adam's favorite nurse (whom he called First Nurse because she was the one who took care of him as he was taken off the helicopter) told us that Adam had been much sicker than what she had been told before he arrived. He had had to be put on pressers (medications to keep his blood pressure up to normal) to keep him alive in the helicopter and she had faced a much sicker patient than what she had anticipated. It's always good to find those things out AFTER the fact rather than in the moment.
March 17, 2015
Got word that my dear cousin Nancy had died of cancer which I had been dreading would happen when we were in the hospital with Adam. It did. Tough day all around.
Physical therapy started at some point during our second stay in ICU and we began a relationship with a wonderful therapist who would continue with Adam throughout the rest of his time at KU. The first day he could only take a couple steps from his room into the hallway outside his door. But he continued from there and as he got a bit better and not needing to be in ICU they sent him to Unit 64. We" lived" there for a very long time.
We had been hesitant to go to Unit 64 because we had really gotten to know and like the nurses on 66. But 64 is the transplant unit and the nurses were familiar with all of the drains, etc. Little did we know how we would come to love the people working on that unit! I'm pretty sure that every single nurse that worked that floor had Adam as a patient at one time or another.
Adam had been on TPN during his previous hospital stay which was nutritional feeding through an IV line and had also had a nasogastric (NG) tube taking nutrition to him but had not really been thriving very well. He was losing weight and by this time had probably lost around 40 pounds. Sometime in April or May they put a GJ tube directly into his stomach and much of his medications which didn't go through his PICC line (IV) went in this way as well as his feedings. The feedings would by pass the area of his duodenum which we had been told was virtually "shredded" from the infection and disease of pancreatitis. He was able to drink clear fluids but for the most part they were for comfort only. He would drink them, they would go to his stomach and the G (gastric) part of the tube would pull the fluid right back out of his body into a bag. When giving medications and feedings they would shut the J(jejunal) part off. The feedings had to be suspended a few hours before and after his immunosuppressants (because of his liver transplant 17 years before) were given morning and evening.
As time wore on and the pain and suffering continued it was hard to see an end in sight for all that Adam was going through. One doctor who had previously worked at Mayo clinic had famously told us that first week back after the helicopter ride that Adam would not be well until 2016. We kind of scoffed at that and thought he was a bit extreme. But then, he knew what he was talking about and we didn't. Thankfully, at that time, we didn't know that he was most certainly fairly accurate in his prediction.
Eventually, after scores of CT scans and other miserably uncomfortable tests there were 3 more drains inserted into our son's body--4 on the front which were arranged mostly on the two sides of his trunk (although one was kind of just off center of his chest) and 3 in the lower back which were so uncomfortable. There was no good position to be in while in a hospital bed with that all going on. The drains had tubes that through gravity and suction from the vacuum collection bags "pulled" out the infected fluid in and around his belly and it was stored in bags called J-Vacs . During a 24 hour period those J-Vacs were all emptied and measured, flushed and recapped every 4 hours or so. The wounds around those drains which were quite large had to be kept as dry and clean as possible. It was almost impossible to keep them clean because there was so much drainage and leakage. The drainage was breaking down the skin around the wounds and it was a vicious cycle of pain that never seemed to end. Dressings were done sometimes 2-3 times a day at that point.
There would be talk of one surgery or another all this time but the surgeon was never willing to put Adam at such risk as it would have been to do it. We were getting anxious wondering if we were doing the right thing by waiting or if we needed to maybe get another opinion. I really never felt we needed to go anywhere else but the frustration level was extremely high. Adam's good nature that had been prevalent throughout most of our time in the hospital was wearing thin and he was becoming quite discouraged. He felt like he was never going to leave that hospital. Finally in late May, for the good of his mental health, Adam's main doc thought he should get out of the hospital for a break. They were hoping for a 2 week period to get him out of the hospital frame of mind and help him to be more positive. We talked about possibly going back to our local hospital but they really were not equipped with staff or protocol for the kind of care Adam needed. So we took him home.
May 29, 2015--Friday
It had been 106 days in the hospital and home looked really appealing to all of us. We would have Home Health coming a couple days a week to do blood work and help with any problems we might have which required a true medical professional. The rest of the care was up to us. I don't know what made us think we could do it except that we had been watching the nurses do it for 106 days. We had had kind of an intensive short course of medical school by proxy. But it wasn't easy. In fact, it was the hardest thing I have ever done in my life. It required so much organization and physical care that I don't think I could ever convey it with simple words. The time spent with our Home Health nurse was minutes a week. Our schedule was insane and that didn't include all the cooking, laundry, trash collecting (medical waste is huge when you have lots of things going on) and sleep, although that was a commodity in short supply. We were pushed beyond our physical strength and in all truth Adam was not getting stronger. At one point one of the drains fell out and we had to go back down to get it replaced. When you are doing several IV antibiotics and tube feedings making a 5 hour round trip to the hospital isn't very fun. None of the care or the experience for Adam was remotely pleasant. But together we did it. Our kids came home over the weekend to help and Katrina was here most of the time since she had withdrawn from the summer class she had planned to take. Those dressing changes were the hardest on all of us but most of all on Adam. It took so much time, many hands, and was so messy. He needed help just standing up next to the bed. It was very physically demanding for all of us. It lasted 10 days.
June 8, 2015--Monday
Early in the morning Craig told me that Adam's temp had been 100 a couple hours previously. When I checked it again it was 101. We were required to report it to Home Health if it went over 100. So we did and they told us to call the doctors at KU. The doctors said to bring him back to the hospital. We called an ambulance and our local crew took us to our Sabetha hospital where they evaluated him before sending him in yet another ambulance to go back to KU. I got to ride with him but it wasn't a fun experience for him and he was not happy about going back in the first place. There was a lot of road construction and it was a long, bumpy ride. Once we got back to Unit 64 it felt like Craig and I could breathe again. So much stress was lifted off of our shoulders to know that professionals were back to caring for our beloved son.
Later in that week a person came into the room to check something which now I can't remember and she was alerted by something and called for a special team (I can't remember what the code was called) to come in and check on Adam. Immediately the room started to fill with people who were from ICU and were doing all kinds of tests on him. Adam had drifted back to sleep from pain meds and when he awoke the room was filled with people in special gowns crawling all over him with different tests. He looked at us and asked "am I dying?" What a horrible way to be woken up. Later the floor nurses told us that it was kind of an overreaction on the person's part to call for the alert but it sure did scare all of us. By the end of that week we were told that Adam had 2 blood clots. Thank goodness we were back in the hospital where they could detect them!
They started talking surgery again around this time and deep in my gut I had a BAD feeling about surgery. Every time they mentioned a possible time I felt as though they were telling me the day my son would die. It just didn't feel right. But they were gearing up for that it seemed so I called my sister. She had wanted to know when they were doing surgery so she could bring my mom out and they could both see him prior to surgery. We made sure the other kids came to see him too because honestly, I really felt like surgery equaled death. Craig had the same bad feeling. But it seemed as though there were not any other options to try to get him better. Through surgery they could go in and clean out some of the infection through a "washing" technique and try to take out any dead pancreatic tissue while they were in there.
Once again the surgeon came in and told us that he felt it was far too risky to do surgery even though the main doc had really been pushing it. I felt so much better knowing it wasn't going to happen.
By the third week of June our frustration had grown along with everyone involved as to how to make healing go better for Adam. We asked for specific things to be prayed for and within 24 hours we got answers. Craig had been constantly asking the doctors why they couldn't do something more efficient to get the dreaded infection out more cleanly and with more volume. Then our infectious disease doctor, main doctor and the nurses came up with the idea to try to "pull" fluid directly from the drains instead of waiting for it to just run into the J-Vacs through gravity and the vacuum suction. The first time they tried it they got 10 times more out in one draw than they had in one 24 hour period previously. Everyone got excited about the new method with the exception of Adam. It was more painful to have the fluid pulled out with a syringe than it was to have it come out through the tube with gravity. But it was working.
Healing was still slow but not AS slow as it had been. Over the month of July they continued this method and some of the pockets of fluid were shrinking! Physical therapy was able to do more as Adam felt some better to get out of bed and move. We still had a long, long way to go to full recovery but we were finally moving in a more positive direction.
Bit by bit, by the final weeks of July they took him off of each antibiotic one at a time for 24 hours to see how his white count looked. It steadily came down after the new method was put into place and his heart rate got some better as well. He had been on heart medicine for a long time now as well as having had at least 3 different sonograms on his heart to check for damage. The high heart rate he had had for so long due to the terrible infection was finally getting a bit better.
At this point Adam had lost 70 pounds. Over the course of his hospitalization he had had 10 blood transfusions I believe. His strength needed to be renewed a little more before he could get out of the hospital but they were working on that. The feeding tube came out and Adam was able to eat real food for the first time and enjoy it in over 6 months. Watching the dye test that they did to check his duodenum and see it UN-shredded was so wonderful! It was the another miracle among the many we had seen in our lives.
July 31, 2015
We headed home for what we were hoping was the last time in this unending saga.
We were far from done with all the drains but at least we could be in our own home.
August 19, 2015
Adam and I went back to KU to see IR again and also to have that stent put in that was never done all those months ago because of the illness. You can read the details of that day here. To say that what happened that day was a miracle is an understatement. All of the prognoses that we were given during the course of this illness were pretty negative and time after time God proved us all wrong. He was in control of what was happening, not us. To go from possibly needing a surgery to completely redirect his digestive system to needing NO SURGERY at all is an absolute miracle. From possibly losing his pancreas and becoming a brittle diabetic and possibly also losing kidney function to being healthy again is a MIRACLE. Jesus be praised!
I took care of what I think was the last 4 drains and the many medications here at our house for 4 months. Adam went back to work half days in September and eventually went back full time albeit with all those drains. He began to gain the weight back slowly and he ate almost all the time it seemed.
When I dropped him off at work that first day in September it was so overwhelmingly wonderful to see him do something so completely normal.
Those 4 months were slow, monotonous, and draining. Neither of us liked getting up at 5 a.m. to do all the things we had to do to get him ready for work. He and I often butted heads. But our hearts were knitted together. No matter what we argued about I truly felt like my son and I were great friends.
October 21, 2015--Wednesday
Appointment with IR to examine drains to see if any can be pulled. No go.
Time and again we hoped for all of those dratted drains to get removed but we had to wait. Eventually, one of the last two drains had been looking good for quite a while. One day the J-VAC on it came apart and we didn't have a way here to replace it. Adam made the decision to just take the drain out. He did it and we never heard anything about it. He immediately said he felt better after taking it out. It healed eventually and the doctor never said anything about it.
November 20, 2015--Friday
Adam and I went back to the interventional radiology department to, hope against hope, get that last drain taken out of him for good. I had high hopes that it would happen because the fluid coming out of his drain for a long time was no longer looking infected. Day after day we had been emptying those drains and measuring the amounts and flushing them with sterile saline fluid.
They prepped him and got him ready to go back to the procedure. I really thought it would happen but I was cautiously optimistic in front of him because I knew he would be SO disappointed if it didn't come out.
When they brought him back from the procedure he was still asleep but they told me the good news--the drain was gone. EVERY.SINGLE.DRAIN.WAS.GONE.
Tears of relief and joy filled my eyes. I texted Craig and then I called the medical supply company and told them they could come get the hospital bed and take it away from our house. Finally the symbol of illness would be gone from my dining room!
Once he was mostly awake I told Adam that I wanted to go upstairs and tell the nurses on Unit 64 that he was free and to hug them and tell them thank you once again. We both went upstairs and had a wonderful reunion with those dear people who had become like family over those many long months. And then we got into the car and left that place for what we thought was a very long time.
Until we got a phone call on our way home.
Craig told me that the transplant nurse had contacted him and said we had been supposed to go down and see his doctor before leaving although when I had asked the appointment person about that in October they said no. I also had an email from the transplant nurse herself that had told me we would be coming back later to see the doc.
He told me he wasn't going back. Adam went to his own house and stayed that night for the first time in 10 months.
But then when we got in touch with them later that day we were told that because there was a chance of infection after taking out that drain we would need to do 2 WEEKS of IV antibiotics for good measure. So we lined up for Craig to take Adam down on Sunday to get another PICC line put in and started doing treatments again at our house that night. I had gotten rid of the hospital bed so we had to set up in the room upstairs where Adam had been sleeping. It wasn't as convenient to do IV treatments up there but we managed. Neither he nor I were happy about having to do it but we didn't seem to have a choice.
So we were back to getting up super early so we could start treatments at 5 a.m. and get him to work on time. Since we live 15 minutes further from his work than he does it was a push. We had to administer 3 bags of IV meds in the evening and 2 bags along with an IV push medication in the morning. It was very stressful for me because we had to do it like before with gravity IV lines instead of a pump which they have at the hospital. Getting those lines air free was very stressful for me because if there was air in the line it could kill him. Nothing like facing trying not to kill your child twice a day for two weeks after what we had already been through!
We made it through the 2 weeks and the day FINALLY came for Adam to go to the local hospital, get his PICC line removed and be free of medical procedures, hopefully, for good. December 7, 2015 he was finally free of all the "hardware" that he had carried around for almost 11 months.
You can't imagine how freeing it was for both he and I to have come through it and be done.
God is good. We are so broken. But God is good!
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