Swollen is the Word of the Day
Scott is retaining so much fluid today! He is now up 20 lbs. since surgery. This is all water weight. His fever was low grade today for the most part. I think the highest it got was 101.8. At other times of the day, it was only low 99's.
PT/OT - physical therapy came in today, at my request. Since he can't walk the halls, I wanted some ideas of what he can do to get some exercise. Everyone talked, and PT was able to have him put on a yellow gown and gloves and take 3 laps. He was cleared to take laps with me after 9PM also. We did 3 laps at 9:30 and 3 more at 11:30. She showed him some excercises to do in the room and gave us a pedaling machine to use when sitting in a chair.
Because of the fluid retention, they gave him Lasix, which is supposed to help reduce the fluids by making him pee it out. They reduced the IV fluids to almost zero. It isn't working so well, since his weight and the swelling went down for a bit, but are back up again. They just drew blood to run the midnight lab work. Once results are back in an hour or so, we'll find out what the plan will be.
His drainage tubes both needed to stay in, because they are both draining too much. They keep saying that's a good thing because the fluid needs to come out.
We surely have our ups and downs each day!
Scott and I work very well as a team! I'm here for him no matter what! It doesn't matter what it is that he needs, I will be there to help him. He feels bad that I have to do so much for him, but that's what loving someone is all about! I just wish I could take some of his pain and problems away. All I can do is be there to support him, pray with him, read devotions with him, and trust in God's plan for us. Thankfully, we're best friends and get along with each other so well. We're both patient with each other and just know what the other one needs. God has blessed us with each other, and for that, I am so thankful!!! God is good!
We still have no idea how much longer we'll be here. Each day is getting harder and harder for us to be away from our kids! Once we're together again, I am going to hug them so tight and never want to let go!
6/13
Saturday/Sunday Summary
It is now 1AM on Monday morning. I took a break from updates because of a rough and busy day on Saturday. Sunday was semi uneventful and I took a much needed break for myself. Oh how I wish Scott could get a break from the 9th floor!
Saturday: We are able to get out of our isolation room to walk the halls during off hours, when no one else is out there typically. Those hours are 9PM - 6AM. We sleep crazy hours, but that's OK. 😀
6AM Saturday, we did 3 laps. At 9:30PM we did 5 more laps.
Fevers were up and down all day Saturday. His high for the day was 102.6 and the low was 99.6. Even though it's sometimes very low grade, we can't seem to be able to get rid of it for good.
His swelling got really bad on Saturday, and he was so extremely uncomfortable! I felt so bad for him! They gave him Lasix to help reduce the fluids, but it didn't seem to help very much. However, from 10:45AM - 5:45PM, he dropped almost 4 lbs. He was SO uncomfortable though, that he didn't notice much difference. We're talking over 20 lbs of water weight, mostly from his waist down.
Sunday: A little after midnight on Sunday, they drew blood for labs. The results showed that his hemoglobin was low. At 5AM on Sunday, he received another unit of blood.
Right before they started the blood transfusion at 5, we walked 6 laps at 4:15AM. We weren't able to do more until 10PM, when we did 6 more, and then 6 more at 11:50PM. That brings me here, writing this after 1AM. I changed our sheets after our walk at midnight, so we would both have fresh bedding for the night.
They have been giving Scott some extra pain meds to manage his pain and discomfort these past couple of days.
His fever remained between 100 and 100.6 all day. I'm happy it didn't go any higher.
The swelling improved more today, and he is down to 219 lbs. Still at least 13 lbs of water weight to shed.
I didn't leave at all on Saturday, because it was a rough day overall for both of us!
Sunday, we watched our 4th church service online in New York. After church and breakfast, I went to Ronald McDonald House to shower. I then met up with my new friend Barb. I met her at MSKCC day hospital, when she was there with her daughter a couple weeks ago, Since she found out we were not from here, and away from our kids, she offered to help in any way she could.She has been fantastic! She texts to see if I need food, to get out for a walk, or anything else.
We got lobster rolls and walked to West River to sit and eat. It was a great break from the hospital.
6/14
Monday, June 13th - Wednesday, June 15th (4:30PM)
On Monday, between the hours of 1:45AM and 11:45 PM, we walked 28 laps. That's 2 miles in less than a 24 hour period! After his major surgery and the setbacks that we've experienced, I am extremely proud of him! Well, I'm always proud of him! 😍
His weight went down about 5 lbs (water weight) since Sunday evening. Every lb of water weight that he sheds is a great thing!
Throughout the day on Monday, he had low grades fevers. By 8:15 PM, he was fever free for the rest of the night.
On Tuesday, he was down 1 lb more, and was running a low grade fever throughout the day. We walked 20 laps total.
At 4PM, while I was at the Ronald McDonald House, he was told that he needed another CT scan. They took us for the scan at 9PM.
Today (Wednesday), the team of Doctors visited and told us that a pocket of fluid by his liver was showing on the CT scan. IR would evaluate it and get back to us. We just found out this afternoon that they will drain the extra fluid tomorrow sometime. He can't eat or drink anything after midnight. Hopefully they get him in early, but it all depends on when they can fit him into the schedule.
His weight was down another 4 lbs today, and he is currently fever free. So far, we've only been able to walk 8 laps today, at 5AM. Our cut off time for isolation is 6AM. It would be so nice if we could get out of isolation and be free to roam the halls during the day and visit the 15th floor. There is an outdoor patio on the 15th. Fresh air would do Scott a lot of good!
We appreciate every card, text, prayer, and thought for Scott, me, and our children!
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