Doing ok

 Brent is doing ok. Lots of uncertainty and fear, but doing ok. Today, so far, has been a good day. We decided it would be a mental health day. No appointments, no plans, no expectations. We had a visit from our dear friend (brother) Tim to start the day out well. Now, Brent is puttering out in his wood shop and working on a cabinet for our camping trailer remodel. We are so excited for our changes in the trailer, now we just hope we can get out a lot this year. Lots of factors: no water year, high fire risk due to no water, and of course health permitting. I just sat out there in our new recliners and felt happy. The mountains are our place of refuge, peace, and oh so many memories. Just sitting in the trailer parked in our driveway even brings me joy. Ha. 

We have an appointment on Monday that could potentially bring some long term plan options. We have a lot to think about. 

Brent always says he feels like he is walking in a mine field. One wrong step and boom. For him, there is little to know warning when the bomb is going to go off. It is due to nothing he does or doesn't do. Nothing he eats or doesn't eat. No activity or lack of activity. It just happens. This one is tough. The GI bleeds are happening, to the best of the Doctor's knowledge, because of a buildup of stomach acid around the anastomosis (scarring at the point of intestinal surgical reattachment.)  The acid is eating through the lining of the intestine. Sounds simple to fix, but it is not. He is on a new IV medication that will hopefully help. The areas around the strictures are weak. Surgery is ultimately the only way to help but surgery is so far not an option. Brent does not have enough healthy intestine left to sew back together. Most people have approximately 20-30 ft of small intestine and 5 ft of large intestine. Brent has approximately 2 feet of small intestine left and half of his large. Hence the reason no surgeon wants to go that route with him. He is definitely between a rock and a hard place as his GI doc said. Right now we do not know what the options are.  We may be consulting with the GI rehab team in Nebraska again (we visited Nebraska in 2022.) It's just a waiting game on many levels. We wait for the next crisis with extreme fear and anxiety. We wait for appointments. We wait for answers. We wait for some semblance of normalcy and peace in our lives. but, as it states on our sign in our kitchen, "Normal is just a setting on the dryer." At least on the dryer I have some control and I can program it to start and stop when I want it to. 

We are so very grateful for prayers and blessings. We both received priesthood blessings the other night from our dear friends. The reality and power of the priesthood is real. We have both felt it. We have slept better, with clearer minds. We have been able to see miracles for what they are whether large or small. We may not have control over much of our lives, and the twists and the turns that they take daily, but we can always see miracles if we look, and we are always ever so thankful for our beliefs and our family and friends that buoy us up.

No news is sometimes good news

 

Well, sorry for the lack of updates. We have always been pretty public about all of this, mainly because we rely on our support system heavily. Your faith and prayers, good thoughts, karma, little white horses (Brenda) or whatever you have to offer is what gets us through each and every crisis situation. But, sometimes I'm just done, and I don't want to share anything or deal with anyone. Yesterday was that day. I was just done. Done with stupid people doing stupid things. Done with the unknown. Done with keeping it all inside. I might have taken it out on a Dr. who said they were sending Brent down for a test that I immediately got red flags about. And by red flags I mean total panic attack, no way are you doing this test kind of flag. When asked if it was medically necessary, she said that the GI team thought it was and that they had no concerns about sending a bunch of liquids and dye and maybe barium down when he had been NPO for several days, just to see if there were any leaks before discharging him. Well, after that I was pretty sure there would be. I mean, I'm not a Dr. but I do have common sense and I try to follow my inner promptings and gut instinct, oh, and I AM an honorary surgeon, an honor given to me by Dr. Price after draining abscesses and such at home. So there is that. 

Anyway, all that to say that the test was rescheduled for this morning to let us think about it. :/   Then, all of a sudden this morning it wasn't considered medically necessary, and the discharge papers were started. Wait, what?  So, I drove up, packed up all his stuff and they were ready to discharge him. ok.

I was supposed to meet Michelle, Tina, and Brenda over at the park across from the hospital at noon for lunch since it's my birthday and all. I was ready to cancel but Brent said the sunshine would feel good. So, Michelle brought a camp chair and greek food and we had a lovely lunch while Ela and Tommy played at the park. Brent is still not eating so he just enjoyed the sunshine (it's 70* here.)  And, now we are home. He is tired, but doing ok. 

Nobody knows what the next steps are. Nobody knows what the long term steps should be. Surgery to remove the affected area is not an option.  There is talk of contacting the Intestinal Rehab Team in Nebraska (we visited with them a few years ago) to see if they have any thoughts/solutions.

We are grateful he is home. We are grateful for good Dr's and nurses. We are grateful for another day. 

Hurry up and wait

 Not a lot to report today. Although Brent was able to take a shower today which is a huge step. He’s now able to get out of bed which is awesome. He did get another unit of blood today. I think that’s a total of eight. Again, we are so grateful to those who are able to donate. It truly saves lives. 

We are very cautiously optimistic that things are quieting down. We are praying that the problems are resolving themselves and that no intervention is needed. Either of the two options are way too risky. 

So this afternoon a couple came in and asked if we would like the sacrament. The wife read the words to a hymn and then the husband blessed and offered the sacrament. Brent is NPO (nothing by mouth) and can only touch the bread to his lips and take a small sip of the water. It was a very touching and humbling act. The sacrament is so symbolic. We were so thankful for them and their service to those in the hospital. When Brent was in Utah Valley 20 years ago his Young Men would come down every Sunday and give him the opportunity to partake of the sacrament. It was such a great testimony builder of the importance of the sacrament and the meaning behind the emblems of the bread and water. 

We love you and are thankful for you. 

A new day

 Brent had a better night last night and I actually went home and got 8 good hours of sleep. Those two things in and of themselves are miracles. We are so very grateful this morning as we choose to see the positive and recognize the miracles. His CT results were more promising than first indicated. Right now it is a waiting game to see if he remains stable. He received two more units of blood during the night. After receiving much needed fluids he is a different person than yesterday morning. I hesitate to say that we have more hope today. We have faith. He actually just got up and out of bed for the first time since Tuesday. 😭.  

We both are feeling so very grateful this morning. We have been blessed by your faith and prayers in our behalf. We know this. We feel this. 

We know that he is not out of the woods. We know that things could still spin out of control just as quickly as they  stabilized. We know that some things are not in our hands but His. Faith and hope are hard. 

 I wish I had more news to share. We are currently in a wait and see mode. We are also in between a rock and a hard space when it comes to options. We had a long visit with Brent’s Gastroenterologist whom we love and trust. Whatever decision is made will not be taken lightly as they each carry life and death risks. Everything is dependent on the next ct scan. If it shows a perforation in the bowel, that would be worse case scenario. If it shows a distinct bleeder then interventional radiology could go in and try to cauterize it again but with risks. If it fails then it would mean immediate surgery. Then that carries many more risks since he does not have enough intestine to take any out. So, yeah, that’s fun. 

Please pray for things to just miraculously heal and work. I know we’ve had more than our share of miracles, but I don’t think God has a cap on how many miracles we can ask for. They’re not always granted or not granted in the way we had hoped, but there nonetheless. 

We’re grateful for our team, all of you. We’re grateful that we have a knowledge of a God that sees us. He knows us. He doesn’t take away the hard things in life but He does help us through them. We are pleading for a miracle. That’s all we can do. 

 So this morning does not bring good news. Brent was moved back down to the ICU at about 2:00 in the morning. He received two more units of blood bringing the total to five so far. His blood pressure hasn’t totally tanked but is low. The CT from yesterday got the surgeons all riled up as usual. They always need to be corralled and calmed down and put on the same page as the other doctors. Surgery is always THEE last option if even an option. He told them nobody’s doing anything until they talk to Dr Price who was his surgeon that literally saved his life many times over. They were just in and said surgery isn’t being considered at this time. 🙄. 

He is supposedly going down to the endo lab again for a scope to see what’s going on and if they can figure out the cause and fix it. He is, obviously, still losing a huge amount of blood. He is weak, nauseous, and oh so tired. 

Please for him today. I know that goes without asking, but just to reiterate that today he could really use them. Thanks. 💞

 Brent had a ct scan but when I left at 8:00 he hadn’t gotten any news. His hemoglobin dropped to 6.7 so he was getting another unit of blood when I left. Thank you a million times over to those of you that are able and willing to donate blood. 

Brent is weak, tired, and so frustrated. It’s hard to understand why, when things are finally going fairly well, we get kicked down again. Over and over and over and over again. 

Thank you for checking in and for your constant prayers in our behalf. We do appreciate you and really are strengthened when we’re down. On an interesting note (and probably VERY much a hipaa violation) one of the techs told us that a certain Prophet of the church (in her defense she didn’t say a name) had recently been a patient in the room Brent is in. So that was kinda humbling and cool to think about. Also kinda weird since it’s not that nice of a room, but it is one of the largest rooms they have. Trying hard to find the bright spots in the day. 

 I’m not real sure what to post, as we aren’t real sure what’s going on. We thought yesterday’s procedure went well and that the cauterization of the anastomosis (previous surgical area) was successful. It wasn’t. Currently waiting for him to go down for a CT scan and waiting to hear from his GI doc. Not sure what the next steps are. Surgery isn’t an option. 

So, how’s that for a whole lot of uncertainty and lack of news? 

If you like specific things to pray for, pray for Brent’s spirits to be lifted. Pray that a solution can be found and be successful. Thanks for all you already do for us. 

 Brent was taken down to the endoscopy lab and they were able to find the source (same place as in November) and cauterize it. He’s back and hoping to get some rest. 

 There’s not a whole lot happening this morning. Brent did receive another unit of blood during the night due to his blood pressure dropping. He is supposed to go to the endoscopy lab today but nothing is scheduled yet. He’s tired, weak, dizzy, and frustrated. That’s all folks. Love and appreciate you. 💞🙏

Annnnnd we’re back. 😢

 

Yep, we’re back. Brent is back in the ICU at IMED in Murray. He has another severe GI bleed. This time I didn’t waste any time going to Utah Valley. I drove straight to Murray. I’m hoping that since we didn’t waste 12 hours he isn’t as critical. So far his blood pressure hasn’t tanked severely like last time when they couldn’t even find a BP when we got here. He’s already had one unit of blood and they are monitoring his levels to see if he needs a second unit. I’m sure tomorrow they will decide what they want to do with his gut Dr. Hopefully it will be easy to find the cause and easy to cauterize. That’s our hope and prayer. 

I spoke in church on Sunday and at one point I was speaking about Lot and Lots wife and fear and how we should strive to have no fear and trust in the Lord. Yeah, ask me how that’s working for me. Not so much. One of those “do as I say, not as I do” scenarios. 

I had texted his boss and he said he had just had a meeting with him , and how everything can turn on a dime. I said yep, and then the dime spins and ends up in the ditch. Kind of just how our lives go. Our normal is just a setting on the dryer. 

Will update when there’s something to update. 

20 years….

 I’ve had so many thoughts this past week as we approached today. Today marks 20 years since Brent’s failed surgery and intestinal rupture. The night that he should have died. But didn’t. The night that started 20 years of hell…and heaven. The night that changed our family, good and bad. The night that we learned to plead with the Lord to save him, and He did. We will never forget that night, even though we wish we could. There are a lot of things we wish we could forget over the past 20 years. So much pain. So many tears. So many surgeries. So many procedures. Way too many hospital stays. So many times we thought he wouldn’t make it. 

BUT HE DID. There are a lot of things we do remember. So many priesthood blessings. So many friends and family members rushing to our aid no matter the time of day. SO many meals provided for the kids and I throughout this entire 20 years. So many texts of love and encouragement at just the right time. So many Dr’s and other medical professionals put in our path that know exactly what to do even though it might not be what is in the textbooks. So many second chances at life (ok, maybe 20 second chances.) SO MANY PRAYERS SAID IN OUR BEHALF. SO MANY MIRACLES WITNESSED!

Yes, so many miracles. Not THE miracle, the one where Brent would be totally healed. The one where he could lead a normal life able to do the things he loves without a care in the world. The one where he’s not hooked up to an IV for 12-16 hours a day. BUT, we truly have seen miracles, too many to count over 20 years. We see miracles every time he is discharged yet again to come home. When we are able to go do things we love, like camping or fishing or just a drive in the mountains. When we are able to travel when he’s doing well enough to survive the trip. When he’s able to spend time with our five grandkids who adore him. When he’s able to see his four kids and spouses grow and achieve great things. When he wakes up to another day. 

So, here’s to another day. It’s never guaranteed. We acknowledge that we’ve been oh so blessed with 20 bonus years. We don’t lose sight of what we’ve been blessed with. Ever. Many of our friends have lost spouses and children. We’ve mourned with them. We have no answers as to why. We are NOT more blessed, more faithful, more deserving, more needed here on earth. There truly are no answers. 

Thank you a million times over to all of you. Seriously. You can’t even comprehend our love and appreciation for you. Your years of love and service to our family do not go unnoticed or unappreciated. We are often in tears thinking of all that you have blessed us with spiritually, physically, and yes, mentally. 

So, today we celebrate life. We celebrate hope. We celebrate love. We celebrate family. We celebrate friendship. We celebrate another day…