Ronnie last updated almost a week ago. It's been a bit chaotic since. I'll give a brief version of events. When things settle, we will update more, and fill in the gaps with more details.
Tuesday night (technically Wednesday morning, I guess, because it was at midnight), Ronnie started having another bout of hemoptysis, so they moved him back to the ICU. Things Wednesday, Thursday, and Friday were a bit hairy. He coughed up about a 1000ml on Wednesday into Thursday and a little less than that Thursday into Friday. Friday it dropped off to about 300 for the day, and same with yesterday.
In order to try to tame the bleeding, they brought Ronnie back to the IR for embolizations. They brought his in Wednesday night, but he had more bleeds within an hour of coming back up to his room (and continued to have episodes throughout the night...one of which was about 400ml). They brought him back into the IR on Thursday morning. Thursday morning they got another area or two, and that seemed to really slow the bleeding down. During Thursday's procedure there was one additional area they wanted to embolize that they couldn't get to, and he had had enough contrast and radiation for one day (especially compounded with having another 2 within the last week). So they planned to bring him back in Friday to hit that last area. Unfortunately, Friday they were unable to get to the area in the way the needed to release the beads they use to embolize, so after 4 hours of trying, they called it. He continued to bleed Friday, but it was slowed. The volume was less, and each episode it seemed to bleed slower and didn't come up to violently. Friday afternoon they decided to try to get to that last "problem area" this coming Wednesday, from a different access point (arm vs groin). So this weekend we have just been biding our time. The bleeding has improved. He only bled Saturday morning and late afternoon, again this morning, but not enough to measure, and then again late afternoon, but only about 50cc...so he's only at a little over 50 for the day! We will take it.
They have kept him pretty heavily sedated on pain meds in an attempt to keep him still and his cough quiet. It usually isn't ideal for CFers to not cough, and it's not ideal in the sense that he probably has a ton of mucus sitting in there right now, but they have decided to manage the bleeding first, and worry about clearing the mucus second. Also, his hemoglobin levels dropped into the 5s, so they transfused him with a unit of blood, in an attempt to get his numbers back up a bit to prevent organ failure, etc. Of course we wanted to avoid this if possible, as to not cause potential issues down the road with being harder to match for transplant. But once he dropped into the 5s, there was no decision to be made, it just had to be done.
It has been an interesting week to say the least. I came down Tuesday night when the bleeding started. His mom and I spend part of the day both here, and part of the time taking shifts so the other can go shower, get food, etc. He was so snowed on pain meds that he needed someone to hit his call button if he started to have a bleed, and then to help during it by catching spraying/rolling blood that he couldn't catch with his suction thing (I don't know the name of it and don't plan on needing it long enough to learn it!) The girls have been at my parents house most of the time. My mom dropped them off in Tucson on Friday afternoon and my parents picked them up earlier today, so we got to see them a bit, which was nice, but a bit too much of a juggling act. I tried to limit Mckenna's exposure to the scene for the most part, as she is VERY comfortable with medical stuff and blood, but one of his big bleeds would be a bit much, I think...especially the way people run around and some of their poor attempts to mask emotions on their faces (come on people, you're professionals, get it together!) But we did have her come to the hospital for about an hour on Friday and again today for about an hour and a half. Nana, Papi and Grandma all take turns going on mini adventures around the hospital to break up the time. Friday he was really out of it, barely waking up, and I think it took her back a little...even though she knew he was just sleepy from the meds. Today Ronnie has been the most alert, so it was a good lasting snippet for Mckenna to have linger in her brain. She is a smart little girl who reads between the lines, so it's a balancing act. No exposure for a few days and she was verrrrry skeptical, too much and well, it may be too much. We had some interesting conversations (more on that in another blog) that gave me insight into her fears and her brain. For today's visit I prepared her for the mask she would see on him (just oxygen, but via mask with a massive tube to it) by talking about him looking like a scuba diver ("just wait...it's so silly..."). We looked at pictures of scuba divers and then made him flippers for his feet out of an old box and jelly fish for his wall out of coffee filters. That seemed to do the trick! He rallied enough to kick his feet like he was swimming in his flippers.
There are a lot of missing details in there. It's all a bit jumbled in my brain as it is, and a lot to type. There was a lot of chaos Wednesday, Thursday and Friday surrounding treatment options and solutions. We were visited by a surgeon about a potential lobe removal and transplant docs about transplant (yes, you read that right, we were shocked too...I think they were a bit trigger happy!! Thursday they came in guns blazing at 6:30AM...I think it was a case of an overzealous new ICU doc). Of course things like intubation were thrown around. But thankfully things have settled, and we have chosen to take days in 12 hour chunks. Ronnie felt like Wednesday felt really far away, so we just started focusing on the next 12 hours. We are hanging our hats on Wednesday for now. If it's not successful again, we will regroup. But for now we aren't worrying about anything the the next 12 hours and getting to Wednesday with minimal bleeding.
We would love prayers. Prayers for physical and mental strength and stamina for Ronnie. Prayers for peace and sound decision-making for his mom and I. And prayers for the team of doctors and nurses treating him. Our prayer for them is that they will be calm, collected, competent and confident.
I will continue to post updates now that the dust has settled. We will go back in fill in the blanks as time permits!
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