Saturday, March 20, 2010

Day # 9 post transplant - 18 days in hospital

Quick Update - Yesterday was pretty rough. Jim was very out of it. He didn't even know who I was. They did a brain MRI which came back with good results. Blood pressure was very high last night and he was very agitated. I was feeling like it was probably pretty slim for him to pull through this. I spoke with a PA who didn't give me much reassurance. We were all very concerned. In the middle of the night ( I have totally lost track of day or time) I was feeling pretty sad. I cried and prayed for a miracle.

This morning I was laying in the lazyboy next to Jim and I heard him stirring. The nurse told him he was OK and that his wife was here. I looked up and saw him looking for me. When I looked at him I could tell he was still in there behind those eyes. My heart lept. He mouthed (he cant talk because of the breathing tube)"What is going on." I explained everything from the beginning because I didn't know what he knew. I asked him if he was scared and he nodded his head. I told him he was in good hands and that we were all doing everything we could. He probably was a little confused why I was so happy telling him he was sick and had a breathing tube in. I was just so happy he was awake and responding to me. I told him I couldn't be in the room for the 2 hour treatment but that I would be down the hall. He gave me the thumbs up sign. That was the best thing I have seen for days.

We are certainly not out of the woods yet. He has RSV all the way down into his lungs. He still needs ventilation support and the fact he is a bone marrow pt complicates things further. I think he will end up in medical journals because the things they are doing to help him have not been done before. So, he is still very much at risk, and very sick but this is a very positive step in a positive direction and being awake more and alert just gives me more opportunities to tell him how great he is and how much I love him.

Today I Am Thankful For small miracles.

Friday, March 19, 2010

Day 8 - 1 step back

Hey, I just spent 1 hour updating this blog and lost it. Can't find it. Anyway, I will be more specific tomorrow. Right now I am very tired but I will give the run-down tomorrow.

Been a long day. Jim is stable in the ICU. Had to be intubated and ventilated. Receiving RSV treatments. I am staying here with him. Kids are with friends and family. This is a step back but we are still hopefull for his recovery. He is being "strong and of good courage." We are all hanging in there.

Today I AM THANKFUL FOR the strong, loving, BRAVE man that I am so lucky to be married to.

Wednesday, March 17, 2010

day 6

So, just a quick update on Jim. He is doing ok and is stable. Yesterday was a bit of a rough day. They moved him to the ICU because he was having heart rhythm problems which he has had before. They had to move him there to give him the medicine to fix the rhythm problem.

He started requiring more o2 and so they were concerned about a blood clot in the lungs. They discovered that he does not have a blood clot (good news) but that he has RSV (bad news). I guess alot of us have it but it is dangerous for babies and the immunocompromised. He came in to the hospital with a cough and congestion so I am assuming he brought it with him, but at that time his immune system was able to fight it off. During Radiation was when he started to get the headaches and congestion. Anyway, that makes me feel better, because we have been so careful about visitors.

So, he is still stable in the ICU. They have begun RSV treatments. The doctors are not too freaked out about the RSV because he does not have pneumonia. He is pretty confused and agitated. The MD's think that is medication related. He does not like his O2 mask and is pretty bull-headed about taking it off. He is notty.

His treatments are going to last from 5-10 days so he is going to lose his room on the Bone Marrow unit. That makes me sad. I get to go take everything out today and store it. He can't have his belongings in the room while they are doing the treatments. When he is done, they will give him another room on the unit and then I can make him a "new home away from home."

We are hanging in there!


Today, I AM THANKFUL FOR family!

Monday, March 15, 2010

Day #4

Today is definitely a new day. There is sunshine in the sky and it is beautiful outside. Wow, I slept good last night. I think all of the tiredness caught up and I slept like a baby. Yea! That was my first good nights sleep since this whole thing began.

Nate said that his stomach did not feel so good today. I don't think that he is sick, I really think it is stress. So, he is home. I was on my way out the door at 9:30 to head to the hospital and Sarah texted me that she passed out and then threw up. I went and got her. Again, I don't think she is sick. I think hers was a combination of low blood sugar and stress. So, now she is home. The two of them can sit in my bed together and watch "Animal Planet" {their favorite} and decompress. Poor kids. Grades may not be the best this quarter. Oh Well!

Don't have news on the car yet. I know it is going to be cha-ching though because they have to take it apart just to look at the oil pump and they told me that will take 10 hours. Lucky, my friend loaned me her car so that I have one and Spencer has one.

Jim did get 2 bags of red blood cells today. Doesn't need any platelets yet. He is still not eating. The nurse told me that if he still wasn't eating tomorrow that they would probably give him nutrition through his IV. He has been getting numerous drugs and fluids through his vein, but no nutrition. The MD told us yesterday, not to worry about him eating and that he shouldn't make himself eat if he doesn't feel like it because he would just make himself sick. It is common for most patients to end up getting fed through the IV for a while. He is still miserable and sleeping most of the day. Still has the headaches. No complications though. He is where he is supposed to be at Day #4. I don't know if he would say this, but I am surprised at how relatively quickly the time has actually passed though. Tomorrow he will have been here in the hospital 2 weeks. Hopefully, only 3-4 weeks left here.

Today, I AM THANKFUL FOR sleep and renewal.

Sunday, March 14, 2010

Day #3

Sorry, no blog yesterday, but it was one of those days. Thanks Nedra for giving an update. Rough last couple of days.

The last three days have been pretty brutal for Jim. Today was worse than yesterday. No complications but he just feels really bad. He is extremely congested from one of the many meds which we think are causing his bad headaches. Nausea has been worse today and now he is not eating. I guess all of this is expected and will probably last another week or so. Blood counts are lower today and the MD said that Jim will probably need platelets and red blood cell infusions tomorrow. His white blood count is at zero. If he continues to not eat, they will feed him through the IV. I was going to bring the kids today but he didn't want anyone but me. He was kind of in and out of it all day. It is probably good that the kids didn't come because I know it would be hard for them to see. It is hard for me to see. Yesterday, Brendan took the trax train all the way out here and stayed for 20 minutes because I think he just couldn't handle it. But he hugged and kissed his Dad and told him that he loved him.

So, yesterday my day was like one of those scenes out of a bad movie. I had spent Friday night and was leaving the hospital at 2:00 to go to Sarah's violin recital in Ogden. My dear friend was taking her there and my mom was there also. So, I go out to the car and have trouble starting it. I realized I was very low in gas because I didn't fill up the day before so that I could hurry to Jim. So I get it started and I am driving down the street realizing I don't know where a gas station is. I call my Dad. As he is talking me to the station, my "check oil pressure" light flashes and my car stalls of course losing power steering and brakes. Then I am able to restart the car and get to the gas station. I am still fine and still smiling because I know that I will make it to the recital. So, after I fill up in SLC I realize the oil pressure light is still flashing. So, I call my Dad again and decide to stop in North SLC to check the oil. I text Sarah to have her teacher put her last on the program figuring I would put oil in the car and be on my way. So, again my Dad is talking to me on the phone telling me what oil to buy and how to put it in. Meanwhile my cop brother is on duty and is a few blocks away. So, I know he is coming to help me. I am still calm, still smiling and assured that my situation is still fixable. So, the girl clerk and me are checking my oil. It is full. My brother comes and some other guy is helping me. The guy messes with some thing-a-ma-gig and thinks that is my oil pressure problem. I start up the car and the pressure goes up. So, I am up and running and am sure I will make it in time. My brother actually follows me to the freeway and I think I am good. The moment I see my brother turn the corner the pressure starts dropping again. Again, I am on the phone with my dad. Now I am on the highway and I realize there is really a problem. So, do I keep going to make the recital or pull over in Centerville? I have an overwhelming feeling to get off at the exit. The moment I pull off of the exit, my car dies thus again losing power steering and brakes. I am able to make it to the side of the road. Then I get a text from Sarah. "Two more people and then I go Mom". At that point, I sob, because I know I am beaten. I know there is no way to make it in time and I have to text her back and tell her I am not making it. It killed me. I felt so bad for her. I just thought how unfair that her Dad has cancer, is in the hospital and can't be there and now I can't be there. I tried so hard but no matter what I did, it just wasn't happening. It was like one of those bad dreams that you are trying to run but your body moves too slow. I text her back, tell her I am so sorry, that I am proud of her and love her so much, and to have her Nanna record it on her phone. I told her to be brave and do her very best. She later told me that she was about to cry. So, she stood up there, closed her eyes, blocked out everything around her and played her song. I heard she did well. I am so proud of her. What a strong girl. So, my poor Dad gets another call (probably the 10th at least), I call AAA (Thank goodness I renewed my membership)and we wait for the tow truck. I told my kids they had better pray that I didn't fry the engine.

I think the hardest part of the day was that I wasn't able to tell my best friend in this whole world about my day. He only has enough strength right now to concentrate on the moment. He is always the one I talk to, so I felt a little empty. I couldn't help but think for a moment that this is how it would feel if I lost him. "Lost" is how I felt. But, my sweet brother John keeps reminding me that this is only temporary. I know soon that he will start to feel better and I will be able to rant and rave about the happenings of our life and he will actually care.

So, now you know why no blog. Just a little stressed out! I don't know why all of this surprises me because when it rains, it pours. BRING ON THE RAIN! I can say that now, but yesterday I wasn't laughing.

Today, I AM THANKFUL that there is always tomorrow.