Obstruction

Happy Labor Day!

Mike was admitted to the hospital on Monday, August 28, 2014, after spending most of the prior weekend in pain, with what he suspected was a bowel obstruction.

Mike had been to the clinic on Friday. He has been coughing a lot and his nose has been running like crazy. His FEV1 was 27% and 25/75 was 3%. He and his doctor decided to try and keep him out for another week. He was put on Bactrim and another antibiotic and prednisone. Thankfully, his oxygen sats stayed above 92%.

Mike and I were able to go out for dinner on Friday. We went to Salty’s and had fish. On Saturday Mike started to have some uncomfortableness/pain in his stomach. It is hard to know when you have CF where that is coming from. Most CF patients live with chronic stomach discomfort or pain to some degree on a daily basis. Between the constant hunger and undigested food there is discomfort. It is hard to know if eating more will help (hunger) or eating less (bowel obstruction) is the thing to do.

He didn’t eat a whole lot all weekend. You kind of get into a catch 22. I sensed his electrolytes were getting out of whack. By Sunday he knew he needed to go in. It was just a matter of when and how.

I took Mike down Monday afternoon. His electrolytes were off and they started the liquid drano before I left (also known as golytely). Mike works so hard to gain weight and maintain it but this incident plummeted him down to 118 lbs. He struggled between being hungry and wanting to eat and fighting the obstruction. The constant coughing which increased the overall pain level was frustrating. Which brings us back to more of the catch 22.

Mike has needed to increase his pain meds, especially at night. In order to sleep, he needed a stronger drug to negate the pain to allow his body to fall into sleep. Most of us can relate to this. Some ache or pain that prevents us from falling asleep and we pop a couple ibuprofen or aspirin and voila – sleep. Pretty much same scenario only obviously on a larger scale.

Well, stronger pain meds have other side effects - like slowing down an already taxed digestive tract. Thus the catch 22.

Still coughing a lot and nose dripping constantly, Mike asked for another CT scan of his sinuses. Mike has had over 14 sinus surgeries. He grows polyps in his sinuses (10% of CF patients have this issue) that put pressure on his eyes and even sometimes his brain that cause headaches. The polyps also obstruct things and cause mucus to get trapped and become infected. This nasty infection then drips down into his lungs causing them to get re-infected. In the past, we have found that when they become blocked having surgery can give him up to a couple years of relief from the headaches, drainage and infection. It has been about 2 years since his last surgery.

The CT scan shows that his left side is completely blocked and his right side is bad but not as bad as the left. However, (deep breath here) Mike’s doctor does not feel like he could for sure survive the surgery. As we know, if they needed to intubate he would most likely not come off of the vent. Barring the vent situation she does not feel that the benefits of the surgery will outweigh the risks. In other words, having the surgery could be too much for him and send him into a downward spiral.

So there you have it. The good, the bad and the ugly we call today.

The good – another day of God’s Grace. Another day of living life to its fullest. Another day of our sisters and brothers in Christ holding Mike and all of us, up in prayer. It is a gift.

The bad – CF progresses.

The ugly – with the blessings of medicine come challenges. Mike has so much coming at him right now. Just the side effects of all the meds would be enough to put anyone over the edge. They wreak havoc on his body but most remarkably his emotions. Up one minute, down the next, anxiousness and peace, strength and weakness. Hard to regulate. The prayers of others and God’s divine Grace and intervention are the only things keeping Mike’s head above water as he continues to live each day while CF progresses.

And live he does. He is going to be here for a while. Perhaps a couple more years, perhaps not. He will be up and about sometimes and the next day he may be struggling to walk. He’s going to need your continued prayers and support. He needs your unquestionable understanding and forgiveness – it’s called love. He gets annoyed and impatient as he deals with this roller coaster ride of living he is on. He’s getting tired but he is still trying to make the best of what he has been given. He will continue to do all the things on his heart until his body tells him, no more.

Thank you to all who are still here for continuing to support Mike and all of us who love and care for him.

I will continue to update this blog as God gives me strength but quite frankly, there are some days when I’m not sure . . .

I know how much it means to this huge family to be aware of what is going on. It would be even more difficult to talk this all through to all those who, in love, want to understand what Mike is going through.

I am also aware of those who stop by from all over the world to watch Mike’s journey. When Mike was a small child it gave me great comfort to speak to the families I met while in the hospital about their journey’s with CF. It helped me to understand what they were going through. It helped me to be aware of what might be ahead….. etc. With HIPPA and isolation of CFers, blogs are one of the few ways we connect with each other. Just please remember, every person’s journey is different. The journey of children born now with CF will be so much different.

I would just ask that if you have a hard time with my blog that you step away for now. No condemnation. No judgment – on either side. I’ve always said I will keep it real and I am being true to that.

Lead by Mike’s example and God’s command, we are all living life to its fullest. Yes, some of this is sad, bad and ugly but God is so much bigger than CF. The majority is peace and love. There just isn’t space or time right now to share it all.

1 Corinthians 13:4-8

Love is patient love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails.

Love and peace to you.