**our friends set up this meal train. It has been an easy way for me to update people and you can receive emails when I post anything new. https://mealtrain.com/g475e8 I’ve been posting more on Facebook but Brad doesn’t like all the attention.**
I’ve been meaning to get on here to send out some updates but things have just been so dang busy! We had a great Christmas with Brad’s family and had our neighbors over for New Year’s Eve which was great to catch up with everyone. Brad’s sister’s family had a ski trip planned but our nephew Blake ended up with a broken arm that had been hurting since he arrived in KC. Our Children’s hospital was great and got him in a cast in a matter of hours. Since he was unable to ski we convinced Paula to leave him with us while she met up with her fiance’ and friends in Colorado. Russell and Blake loved having some extra time to hang out. Paula came back to fly home with him so we had lots of family fun over the holidays!
On Monday the 4th we kicked off our week with a Thoracentesis, lung drain, and while Brad was there I was fighting to get his oral chemo as there was a glitch and we hadn’t received it yet. He was supposed to take it Monday morning so I was urgently trying to locate it so he wasn’t thrown off his schedule. It is very specific dosing with 5 days on, 2 days off and then two weeks off. Thankfully KU Med is very good about pushing past approval and financial obstacles so they made it happen and I picked it up right before picking Brad up from the procedure. Here is a God Wink #1 in this whole situation. We try to make chemo be the first thing that is billed in the new year because they have grants that will pay for our deductible. I worked with the financial dept to push through the chemo so it would all bill correctly. If the drain was billed first we’d have to pay 100% of the deductible. There is more to that piece I will come back to it.
I had given Brad some calming tea and CBD and had high hopes of his blood pressure to hold but when he texted me after he said it was awful, the most painful procedure and his BP was 45/24 at first then 65/45 during the whole procedure. I picked him up and he did not look good at all and was in pain. He rested while I ran some errands with Russell, when we got home he and Whitney said he had been confused and wasn’t tracking on conversations. At bedtime he was in a lot of pain in his back and chest but a pain pill helped him sleep. The next day I had planned to go to my office but he just did not seem 100% so I worked from home. By mid-day he wanted me to call the cancer clinic and see if they could see him. We went in at 1:30 to talk with Dr. Chuda and thankfully they let me attend. It was a short appt, he opened up his xray from the day before and said he lung had been punctured and collapsed. We were shocked because Brad was not in extreme distress. I think he’s gotten so used to one lung being compromised so it didn’t stand out as a big difference except for the pain.
We were sent to the downtown hospital for Xrays and likely admittance. We waited for an hour to get into the ER and tried to stay away from the other sick people to avoid germs. They put in a chest tube which was extremely painful! Eventually he got moved to a room which was in the overflow section and very sketchy accommodations but the nurses were absolutely incredible. They fought for him to get answers and were very smart with information they shared with us.
I utilized patient advocacy to help push the doctors to see him and help us find out the plan. Finally at 3pm we had a literal parade of specialists coming in one by one to tell us their piece of the situation and what they will be doing. At the time we were desperately pushing for him to get his chemo drugs approved. We had them, they were sitting on the counter but the pharmacy had to verify them before they’d allow him to take them. That was so frustrating after I had push so hard to get them approved and through the system on Monday! The cardiothoracic surgeon, Dr. V, was amazing and so positive! He brought us an article to read about a procedure he wanted to do that involved putting mesh on his diaphragm to help block the fluid from going into his lung. It would still go in his abdomen but that was a much easier process on him to get drained than these lung drains. We were so happy to have been seen by everyone, ended up getting the chemo approved and were feeling so accomplished!
I went home to be with Whitney and Russell and get some items Brad had requested and attempted a good night’s sleep. I woke up to a very disappointing text from Brad that said he had infection in his lung fluid and the surgery was cancelled. His liver doctor came by and said she was against the surgery now or EVER and didn’t want anything foreign in his body because there would be a very high risk of infection if he had the mesh or a permanent drain inserted. Disappointment turned to worry as we needed that infection to be cleared. My level of urgency to get him in a new room was elevated and escalated with Patient Advocacy. My husband with infection flowing through is body did not need to be in that grungy room 3 feet from a disgusting toilet! By bedtime he was moved to the cardiac floor which is quiet, clean and there is a well equipped real bathroom.
On Friday we had follow ups but nothing new. It was a relaxed day settling into his new room with the new rhythm of the staff. We knew the weekend would be quiet but hoped he would get the chest tube out before Monday. There is a massive volume of fluid coming out because there is no resistance to the fluid’s path. It had to work hard to find the easier path into his lung and now that it can just drain out the liver and kidneys are not taxed with backed up fluid and resistance. His labs are showing that his organs are less stressed as they’ve all come down from a peak on the 5th due to infection and stress.
I had some friends come by on Friday evening to drink some wine and catch up. It was so nice to laugh and share stories with my girls. I think it was good for Whitney to let lose a little as well. Russell went to his soccer friend’s house for the night and enjoyed a steak dinner and a workout with his buddy. It has inspired him to set up the weight bench in our basement and work on strength training. This kid is growing up so fast this year, mentally, physically and maturing in how he attacks his goals.
On Saturday I spent the day with Brad and we treated ourselves with a yummy meal from a local asian restaurant. The hospital has some amazing restaurant within walking distance so that is nice change of pace from hospital food. He was pretty tired and I had plans to go to dinner and the Heart of America Youth Ballet with our dance friends. It was an absolutely wonderful night and break from the grind of the hospital stress. The ballet was Sleeping Beauty and was wonderfully choreographed and performed. I loved watching Whitney and her friends enjoy the show from the audience for the first time.
On Sunday Whitney had planned to hang out with Brad while I took Russell to his soccer game in the morning and had some cleaning and food prep to do for the week. I was so exhausted I didn’t get everything done but did enjoy a lettering class by one of my favorite ladies, Gale Nation. She has been a crafty friend for a long time and I’ve been wanting to take a class from her for a long time. The plan was for Whitney to take the class with me but it was a good time for her to go hang with her dad. He requested her to bring dominos and candy. I loaded up a bag of snacks, banana bread from a friend and sent $50 that was given to us for a good lunch. They had a good day and I got some much needed rest.
Late last night a nurse said something about surgery today to separate his organs. We were like “WHAT SURGERY?”!!! I told Brad just relax, she was probably reading about the mesh surgery and got confused. This morning the doctors confirmed, no surgery and want to keep the fluid draining and monitor how the diuretics affect the fluid if at all. It is looking like the chest tube will come out tomorrow and we will work to get him released. With his lab numbers looking really good we hope all meds will be tweaked and a schedule for fluid drains will be established. While it is a hassle and his blood pressure drops “Vagal Response” are scary and uncomfortable we will try to manage our way through them. Anything is better than being in the hospital so we will just have to power through and accept this as the best option.
Please pray for Brad to continue to *heal, *maintain a positive attitude, *enjoy the good in his days and for all of us to *keep our stress level low, our *hope high and remain *strong in our faith that God is holding us close and carrying out his plan for all of us. We are juggling work, school and activities along with these medical appts and situations. I’m sure we will continue to grow in strength as a Family and in our Faith.
God Bless, thank you for your prayers! Kim and the FamBam