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.