I wanted to write one last post to thank you all for the amazing support you have given us over the last 10 months, and especially last several days. We could not have made it this far, or continue to proceed forward, without the amazing support network of friends, family and loved ones that we have. Dad lived an incredibly rich life, and you all are evidence of that. To end this long journey, I wanted to leave you all with the words I shared at Dad's funeral. [...]
I am sorry to write the news that my father, Donald Howard Westerberg, passed away at 2:30pm today. Dad put up an incredible fight, and that's putting it mildly.
After getting to the hospital yesterday, we learned that he wasn't expelling Co2 and his blood gases did not look good. This has happened before and, after doing dialysis, he came back around. We tried dialysis, but it did not help and his body had a difficult time tolerating it. They kept him on a bipap machine to keep him breathing comfortably and to eliminate some of the Co2. He settled into a comfortable place and was resting peacefully since yesterday afternoon. We all stayed over in the room with him last night and today spent the morning and early afternoon playing his favorite music and telling our favorite stories. His pulmonologist, Dr. Shaw, came in and helped us make the decision to take off the bipap machine and allow Dad to go peacefully. He was in a lot of pain the last couple of weeks and finally was at a place of comfort.
We thank you all, from the bottom of our hearts, for the love, prayers and support you have shown us and, especially, Dad. Dad taught us all to fight and promised me a while ago he would not give up too soon. After his original diagnosis 10 years ago, he was given 6-12 months to live and we've had another 9 years since then. He leaves us all with a better understanding of what resilience is. When I have a better idea of the funeral arrangements I will let you all know, but we are aiming for Sunday/Monday.
We came into this journey with faith, and we leave it with an even stronger one. After a family meeting a couple of weeks ago, Dad said to all of us "I hope you live as good a life as I have had, but you will never live a better one". Dad truly lived a life of gratitude. With that I leave you all with his favorite psalm. I hope it brings you the comfort it brought him, and brings all of us.
1 Shout for joy to the LORD, all the earth. 2 Worship the LORD with gladness; come before him with joyful songs. 3 Know that the LORD is God. It is he who made us, and we are his ; we are his people, the sheep of his pasture. 4 Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name. 5 For the LORD is good and his love endures forever; his faithfulness continues through all generations.[...]
Dad has had a difficult two weeks. We found out that his CMV infection is back and his numbers got quite high between two weeks ago and last week. This means the medicine he's been on for the CMV is not working, so they took it off. This comes with mixed feelings from us, because we hold out hope he's not resistant to treatment for CMV, but the medication he's been on has caused numerous negative side effects. He is still in a good amount of pain from the sores they caused in his mouth and it suppressed his bone marrow, white and red blood cells. Since skipping the doses at the end of the week, his white blood cells and platelets are back to a more normal number and his mouth is beginning to heal. They sent out a resistance panel to see how resistant Dad is to the drugs for CMV and we've been waiting for it to come back. He also was experiencing nose bleeds, so ENT came and found several blood clots they removed, then packed his nose with dissolvable gauze. While this stopped the nose bleeds, it means Dad can't have oxygen through a cannula, so they put a non-rebreather mask on him to give him sufficient oxygen. Eating with the mask and his plugged nose is difficult, so we hope the gauze dissolves quickly.
Dad has been confused this weekend and rather out of it. We assume this is the result of the morphine he's receiving for his pain. I stayed Saturday night and he woke multiple times, restless and worried about various things. I reassured him each time where he was and he was able to relax and fall back asleep. Yesterday he was again quite drowsy and dazed. He said he felt confused and like he couldn't fully wake up. He ate yesterday and seemed to get a little clearer headed as the day progressed, but Mom decided to stay the night with him. This morning around 5, Mom called and said the nurses were trying to wake him, and while his eyes are open, they can't seem to bring him into consciousness. We're heading to the hospital to be with him and Mom. We pray that Dad comes out of this and the doctors can figure out what's going on. I will keep you all updated when I know more.[...]
Yesterday our family had a meeting with Dad's team of doctors, his social worker and a couple people from palliative care to go over everything that has gone on and to all get on the same page. First, Dad has been in pretty significant pain from his mouth, so we wanted to know what could be done to better manage his pain. The team came up with the idea of giving Dad a self-administering pump so that he can better control when he gets medication. The CMV he's been battling is still the biggest issue, because the medication given to treat it (Foscarnate) is causing his white and red blood cells and his bone marrow to all be low and not regenerate the way they should be. The medication is also most likely the cause of the ulcers in his mouth. If he can have two negative CMV tests in a row, they can lower the dose of the medication. The good news is that last night, this week's test came back negative! He will be tested again next Wednesday, so hopefully that will also be negative and they can start to lower the medication. In addition, Dad still has some areas that show (most likely) a fungal infection in the old lung and possibly the new one. The team wants to do a bronchoscopy with biopsies and/or cultures, but with Dad's blood cell counts too low, it's too risky to do it at this time. We were told that we should be prepared for at least another month in the hospital, if not more. However, as anyone who has ever dealt with serious illness or injury knows, as much as we can try and predict the way things go, it's not always in our hands. We are hopeful that Dad's strength and resilience, along with the team's expertise, will allow him to get strong enough to get out of the hospital earlier than their predictions. Dad has fought unbelievably hard to get to this point and, though things are complicated right now, he continues to show unbelievable determination and fight. On Tuesday, despite having a low-grade temp and having the pain from his mouth, he got up, took a few steps with his walker, and sat up in the chair in his room for over an hour - he even read the paper (though with the upcoming election, this may or may not be beneficial for Dad's health :) ). Thank you for your prayers, concern, care and positive thoughts - it is all so appreciated and helpful. We look forward to watching the Nebraska game (Huskers are ranked 10 in the nation!!) with Dad in his room this weekend. It has now become common knowledge among the doctors and nurses that Dad's room on Saturdays is the place to be - we watch College Game Day (can't get it on the hospital TV's so we stream it on the iPads, complete with surround sound thanks to our portable speaker) and always bring in some sort of good food during the Nebraska Game. I hope you all have a good end to your week and Go Big Red!![...]
Dad is stable and was moved out of the ICU, back to the transplant floor, a week ago. Throughout the week, sores that he'd had in his mouth have grown and are now bleeding ulcers that fill his mouth. It causes him a great deal of pain and, based on testing, it's been concluded that they are a result of erythema multiforme - a reaction to medication. The issue is they don't know which medication. They suspect it's the antibiotic being used to treat the CMV infection, which is really strong and can be toxic, but seems to be the only drug that he's not resistant to that can treat the CMV. The hope is that the mouth sores are self-limiting (and will go away with time), but if they are related to the medication, they can't take Dad off of it. Dad had tested negative for CMV twice, but then had a positive test this week, so he must remain on the medication. He's being given pain meds to manage the pain so he can eat and sleep, but we're hopeful the sores can resolve. There's no medication that can get rid of them, but he has been given a mouthwash that helps to numb his mouth.
Besides the CMV, it appears Dad has a fungal infection in his native lung that has progressed into a ball that has created a small hole in the lung. He started a new anti-fungal medication two days ago to hopefully treat and get rid of this.
Today, Dad was supposed to have a minimally invasive bronchoscopy to wash out his lungs and get some cultures from those washes. However, he had a low-grade temperature so it was postponed. The more invasive bronchoscopy (I mentioned a couple of weeks ago) has been indefinitely postponed, for now. The doctors still think Dad has an infection they haven't caught, which is why they want to get the cultures from washing out the lung.
We are going on week 7 of Dad being here in the hospital this time, and 9 months since the original transplant. He's only been home for 2 weeks and we are so eager to get him back there. We are so grateful for this hospital and it's excellent care, but the healing that comes from being at home (and getting Mom's cooking) can't be matched. We are praying that they figure out some answers soon and that Dad's mouth heals - it is so painful for him and it's awful to see him suffer, especially considering all he's been through. We are so grateful that he has such a strong spirit and an unbelievable amount of fight in him. We're hoping for a low key, restful weekend for Dad.
We hope that all of you in Hurricane Matthew's path are safe and OK. Thank you all for checking in on Dad this week. I will post another update when we know more.[...]
Dad has pulled through again and is doing much better (hooray!!). He is still in the MICU and not entirely comfortable, but his breathing is back to what it was before yesterday's incident. They hooked dad up to the CVVH machine last night and have pulled a good amount of fluid from him, making it possible for him to get off the bi-pap machine and back onto a regular nasal cannula. He is using a little more oxygen than he was a few days ago, but he's actually able to breathe, which wasn't the case 24 hrs ago. The swelling from the allergic reaction is coming down and he looks much more like himself again. The infection in his blood is gone and the infected central line IV in his chest was removed. He wasn't cleared to eat until 5pm tonight, but once he was, he had a decent meal, including chocolate cake! Unfortunately, he still has a lot of sores in his mouth, which combined with the drying effect from the bipap and the swelling in his lips from the allergic reaction, is causing a good deal of pain in his mouth and makes eating difficult. He wanted to eat more than he was able to because of this pain. Infectious disease cultured it and are keeping an eye on it. He's worn out from what happened and I think we're all sort of reeling from what a terrifying experience it was. On top of the difficulty breathing, his body was not expelling Co2, which is dangerous. The Co2 levels came down once some fluid was removed, but last night was one of those nights that we all want to forget. However, it reminded us once again of how precious Dad is to us and how much we treasure having him. We have met too many people at this hospital that have lost their loved ones and we are so grateful for the things that allow Dad to keep fighting - prayers from friends, family, coworkers and new people we meet that hear what Dad's going through; the teams of doctors, nurses and staff that work tirelessly; our family that has come together and found new strength and bonds we've never had before; Spotify and Pandora for giving us excellent music to drown out the hospital sounds (today was an Everly Brothers "Songs Our Daddy Taught Us" kind of day); and finally Dad, who weathers storm after storm with an inner strength that makes me think he is just simply built differently than the rest of us - he didn't fight against what was happening last night, yet still fought to make it through to this other side. Part of this strength I think comes from the faith he and mom share in God, and in each other. Despite the scary situation and numbers of people running in and out of the room last night, through Dad's rapid and strained breathing, mom stroked Dad's head and they talked to each other in a very normal, matter of fact way. It was amazing to see two people really act as one unit and rely on each other in such a seamless, unified way. They both are such an inspiration of strength and unconditional love. Sorry to be a bit sentimental tonight...last night was scary and we're just so happy to see Dad progressing forward and back on a healing track. Thank you all for your numerous messages and calls of support and concern. I will keep you posted as we know more.[...]
Dad is in the medical ICU, where he was about a month ago. There seems to be a lot of issues going on and he declined pretty significantly tonight, though seems to be pushing through it and we hold faith he will come back from this. He has an infection in his blood stream, for which the doctors gave him an antibiotic that he had an allergic reaction to today. The allergic reaction, possibly worsening infection in the lungs and fluid retention have all made it very difficult for Dad to breathe. Mom and JM left Dad around 7:30 and he was ok, but around 10, the PA on duty called us. She said he needed to be watched more closely than the transplant floor was able to do, and he seemed to need dialysis right away to pull off fluid. We got here with him around 10:30, before he was transported, and were able to talk with him and help him relax a little. He is at peace with whatever happens, including the need to fight more - he's willing to do whatever needs to be done and is being incredibly brave in a very scary situation. He is now in the MICU and they are going to do the more gentle version of dialysis (CVVH) to try and remove fluid right away (they did the same thing the last time he was in the MICU). The three of us will stay tonight so Dad is not alone. While Dad was being moved into the MICU, we randomly ran into one of the 2 chaplains we have gotten close with. Daniel provided Dad some comfort and said a prayer with us, which was helpful for all of us. We pray that this is just another bump in the road and things will smooth out again. I will keep you all updated. Thank you for your continued prayers and concern.[...]
We're beginning to not trust the hospital's scheduling. Dad's PA came in around 7 tonight and told Dad he is off the schedule for tomorrow, so no bronchoscopy. She had no answers as to why. Our speculation is that it's cancelled because an infection came back in one of Dad's blood cultures, he had a fever this weekend and he's not feeling well. The silver lining is that Dad will be able to eat tomorrow, hopefully regain some strength and feel a little better before this procedure happens. He is frustrated and worn out by the way things have been going, but a Husker win yesterday helped! We have no idea if/when this procedure will actually happen, but I will keep you all updated. [...]
Dad was placed on NPO at midnight last night with the plan being that he would have the procedure today. I took the day off work and Mom and I did our best to distract Dad from his hunger this morning. He also had a good amount of pain from having his arm with the fistula opened up two days in a row. His team of doctors came in mid-day and let us know that the procedure was off and Dad could eat. They said his X-ray was improved and his pulmonolgist was not positive if the bronch was still needed. After they left, we got Dad a good NYC bagel and some pain meds. He was able to sleep restfully and was feeling better this evening. Around 7, one of the physician's assistants came in, however, and let Dad and I know that the bronch procedure has been scheduled for early Monday morning. We're grateful that Dad will have the weekend to gain some strength and won't have to spend a long time without food Monday, since the procedure will be early.
We are hopeful there are no complications. The major risk of the procedure is pneumothorax; Dad will be placed on a ventilator for the procedure as a precautionary measure to keep his breathing steady, but the hope is that after the procedure, this will be removed, he will go to recovery, and then back to his room.
Peter and I plan to be with Mom on Monday, so Dad will have his family rooting for him from the waiting room and once he gets into recovery. This process is so unpredictable, but our love and support of Dad is a constant; we thank you all for your love and support as well.
I will post updates as I have them. For now, we will concentrate on the important stuff, like a win for the Huskers tomorrow night![...]
Dad had a fistula created last spring for dialysis. He has been using it, but lately, it has not been working as well as it needs to. For this reason, he had a procedure done yesterday to insert a little balloon into the vein to keep it open in the fistula. A procedure that should take 15 minutes took 2 and half hours. When dad finally got to dialysis yesterday afternoon, however, dialysis couldn't get the fistula to work, despite the balloon being put in. Dad was taken back to his room around 7pm last night, feeling quite discouraged. One bit of good news we got is the first infection he had, CMV, is finally negative!! His numbers had been in the thousands, so this is extremely positive. However, he does still have some other sort of infection (the doctors think) in the lungs. [...]