Saturday again with Sean at the hospital

We stayed with Sean until 3 am this morning and then went home to get a little rest. His oxygen dropped to 59 last night after the nurse moved him around and a few other things were done. When we arrived home the nurse told me he was stable when I called and then this morning I called again and his oxygen was back up to 97. His mother and I went to see him a little later then normal because we were still tired from such a long night. Linda, Seans brothers wifes mother was visiting Sean when we arrived. Linda also told us her other daughter and her boyfriend had came to see Sean early today also. Shortly after the nurse needed to do an assessment and we went out of the room a few. When we returned Sean was resting and his mother and I sat with him until around seven in the evening. We had to leave for the nurses shift change and in the amount of time we had been here I never saw his day nurse which kind of made me angry. When we returned from dinner Sean had a fever of 102. which he did not have at around four p.m.. His stats were a little off and they had dropped his sedation so his blood pressure would stabilize. His heart rate was around 141 which is high and he was with fever when we left so his uncle Bob and cousin Sarah could visit him. It is now eleven in the evening and we are going to go spend a little more time with Sean before going home to get some rest. I will update as I have more.

Thursday & Friday With Sean

Sean had a fever and it was broken fairly well by Friday morning. Thursday his mother, I and Sean watched television for most of the day with him and then his brother came to see him for a few. We washed his face, hands and feet and helped to do rotations on his arms and feet. His uncle Bob also came to visit him and we watched the history channel with him for a few. Sean still had a fever when we left last night and his blood pressure was a little weird. I called when I got home and the nurse said he was fine, his blood pressure was low but was resting. When we arrived this morning Seans oxygen was at 100% which is great and his blood pressure and heart rate is excellent. His fever was broken and they still had him under the cooling blanket. We were asked to leasve for a few while they do there afternoon assessment. Seans brother & mother are speaking with a doctor about future paths in Seans care. I am out in the waiting room updating this. I will update more as I know more.

Wednesday again with Sean

We ended up staying with Sean until near 2 am. His stats had dropped really fast to where we were really concerned that he was in trouble. It undoubtly was another lung pocket as before that had made his stats drop again. Today when we arrived he had another fever of 103.0 and the nurse was trying to get his temp to drop. He was doing fairly well as far as stats and he was sleeping really well. His mother and I were taking wet washclothes to cool him off as best we could. We stayed in the room with him most of the day. We had asked about getting Sean moved to a private room the other day and the nurse went to ask about it earlier. They said they did not want to move Sean due to the fact they would have to disconnect him from the ventilator and they did not want to try that. His mother and I went to get lunch late around four in the evening and then came back and sat with Sean until around seven in the evening. His brother and sister in law came and seen him for a few then his brother chose to stay with us and sit with Sean awhile longer. His Uncle Bob had decided to stay with Sean until four this morning which was really nice. We moved out of his room around seven in the evening so his nurse could come in and do her assessment. We are heading back in now to Seans room. We are going to turn the Red Wings hockey game on the television so Sean can hear it and we can watch it with him awhile. I will update as I know more.

Tuesday with Sean Again

Sean isn't doing well today. He is retaining fluid and doesn't seem to be doing much better now. We spoke to his doctor about comfort care and I honestly am not able to sit here and type this stuff. I would much rather be in his room with him. Please keep him and us in your prayers as he is very close to heaven at the moment.

Monday with Sean Again

Sean was resting well when we left last night. I called the nurse about him around 3 am and the nurse who answered told me there was no change concerning Sean and that his nurse was giving him a bath and I could call back in thirty minutes. I told her no that was fine and thank you. When we arrived today Sean was pretty calm and his stats were great. They had moved him down to 60% oxygen but of course he still has the C-Diff so we have to suit up to sit with him. The day nurse allowed Seans mother and me to sit with him for an hour without disturbing us. We went downstairs to grab a drink while she did her assessment at around four in the evening. We ran into Seans brother and his wife in the lobby and all of us returned to his room shortly after without problems. The day nurse was awesome and allowed all four of us to sit with him a few hours and watch a movie. His stats were pretty good most of that time. They put a Colostomy bag on Sean yesterday due to the C-Diff and some of its side effects. The bag is basically to just ensure Sean stays clean and comfortable. We had to leave at seven this evening so the nurse could do shift change and so forth so we went and had dinner. When we returned Seans sister in law had left early as she needed to go to work in the morning. His mother and brother remained and we went upstairs to see Sean. The nurse said someone else was already back seeing Sean and it happened to be Uncle Bob. I was assuming it was Seans friend Eric who had told us yesterday he was coming to see Sean then changed it today and had not yet showed up. I spent a few minutes in with Bob and then he said he needed to go home as he had also been here earlier today. I sat with Sean for a few minutes and he was pretty agitated. His blood pressure was a tad high and I sat there with him for a few minutes then his mother joined me. I told her that I would like the DNR removed on Sean. She said shed handle it and asked the nurse to speak to the doctor about changing that specific order. The nurse made a comment that Sean seems to get agitated when he has family in the room I told her he had four visitors at once today and was doing real well so I did not agree with her. She is not allowing but two visitors at a time so I am sitting in the lounge and Seans mom and brother are back in the room with him. I will update as I know more.

Easter with Sean

When we arrived at the hospital Sean mother had arranged for a deacon from her church to come and pray with us and Sean. Sean family is catholic as I am not so some of the prayers I was not familiar with but nonetheless prayed with everyone. We also had a hymm of Amazing Grace as well as the the body of christ. Sean cried a little even though he is fairly sedated as well as made faces and gripped my hand. I told him in his ear that if he was staying for me and he is in pain to please not to as I do not want him hurting anymore. I then told him if he is not in pain I will fight with him as long as he wants. I also told him in no way was I saying I was giving up on him. Which I never will. We had a good long visit with him early today and watched some television with him. We went out of the room for lunch and when we returned the nurse was asking us to put on protective gear and gloves. Apparently after doing a few tests they discovered Sean has C-Diff which now due to it we have to be careful not to also catch it. They said it could be why they were suspecting an infection. They have given him anti-biotics for it. He is fairly comfortble considering and was sorta snoring earlier. We had easter dinner brought to us by Seans brothers wifes family which was super sweet. I have not been back in to see Sean but intend on it before leaving. It is already midnight.

Saturday Sean

When we arrived today Seans brother and sister in law were already in Seans room. The doctor had came and talked to them about the update of Seans condition. One thing he told us was that they were at top pressure for Sean and to do anymore as for the pressure could make one of his lungs bust. He has a slight fever and he really is not doing any better then yesterday. The doctor said that his blood pressure keeps going down and suggested a medication to regulate it artificially. Honestly things have changed so drastically and fast over the pass few days I am having a hard time keeping up. I am hoping and praying for every day we get with Sean and it feels like we are loosing them fast. I am at a loss for words and I do feel my heart is breaking everytime they tell us something else negative. Sean has had several visitors today. His sister in laws sister Kelly, his niece and her mother, his brother and sister in law, Uncle Bob and his two girls, his other sister in laws sister renee and her husband,both my parents, his friend Eric and his wife, his mother and me. He is so precious to me and living without him seems so impossible. I pray for him to live through this but right now I just don't know anymore. We have a priest coming tommorow to say a prayer with Sean and we still do not know what is next. Please pray for Sean and all of the people who love him.

Friday with Sean

Well we have recieved some pretty depressing news about Seans current status. We spoke to the doctor yesterday as I said about speaking to the cancer doctors concerning Sean and a tracheotomy. They had us come in today at 2:30pm and the meeting included his oncologist, the resident doctor and a critical care doctor. They described everything thats been going on thus far, things we were already aware of. They told us that the cancer had spread to Seans liver and it looked to be spreading more in the cleaner lung. They have him at 100% oxygen and are having to force pressure into his lungs to keep him well. He is at a good amount of sedation but is still squeezing our hands and responding. They said that no one would touch him to do a tracheotomy at this point because they believe it would be pointless and the fact he is now at 100% oxygen. They are pretty confident Sean will not be with us much longer and were discussing things such as DNR (do not resuscitate) which was agreed upon to assure Sean experiences no more pain. They do believe there is not much more they can do for him and told us we should speak with the hospice people today. After an emotional aftermath of speaking with the doctors we all went in to see Sean who was listening to everything we were talking about. He was pretty calm and we spent some time with him before leaving a few to talk to the hospice people. Once in the room with them they started explaining the hospice process. They described details about what would happen if we agreed to enroll Sean into hospice. They would remove the ventilator and make sure he was comfortable. They described the things we could expect once he more or less begins to pass. Many were a little much for me to hear and I began crying. I must admit I am a complete emotional tornado at the moment and I think anyone in my situation would be. We have not agreed to hospice yet. The day and all the news alone was alot to digest. Seans mother is in visiting with him now and I am in the waiting room updating this. I intend to go back in and see Sean before we go home. I do think he will be fine this evening and hopefully rest well throughout the night. As of today however Sean has beaten cancer a year. We love you Sean

Thursday News

This week has been really hectic but I do have a little news concerning Sean. His oxygen is going up and down and it seems like the nurses and doctors are not really sure where he stands. They tend to call it destating when Seans oxygen drops into the 80s but in truth I have seen him as low as 70% when he had his lung surgery. I do not put alot of faith into a few of the nurses who care for Sean as they seem to have no people skills. Seans brother, myself and his mother spoke with a doctor today, one whom from speaking with him seemed to not have a good understanding of Sean or his illness. The doctor halfway through the talk asked us if we knew the cancer had spread to the brain......I was really upset. He was very negative. Seans brother was under the impression that if Sean recieved a tracheotomy he would breath better, be more comfortable, possibly improve, a stew of positive things until speaking with this doctor which was not the same as he had first spoke to. Seans brother had spoken with a different doctor and the one we all spoke with was as I said negative. He wouldn't commit to anything the other doctor had said. He acted as if it would not improve Seans situation. Seans mouth is very sore and red from the tubes in his mouth. I have been trying to to keep it clean as much as possible. They are keeping him heavily sedated and one of the nurses was pretty rude to us about Sean and his agitation. She told us that he became agitated everytime his family was in the room...I am sure he does get active when we are in the room, I do not doubt that at all. Not to mention they have him sedated and on a ventilator knowing he can hear everything they are saying so when he hears a familiar voice he undoubtly gets excited. The doctor told us we should consider talking to the cancer doctors before committing to a tracheotomy. He was clueless about alot concerning Sean. He mentioned topics such as Hospice and making plans to keep Sean comfortable. I for one am not willing to give up on him or his treatment. The doctor said that they could not treat Sean for the cancer while he was on the Ventilator as if we were not aware of that already. He acted as that fact alone was enough for us to throw in the towel. I went in and sat with Sean for a little while last night. His left arm looked bad where there is a IV in his wrist. It was bloody and they still have him wearing restraints. I left the restraint off and went and found his nurse. I asked her about it and she was very rude and told me she was going to replace it. I left the restraint off as it is pulling out the needle in Seans arm and it cannot feel good. When I called a few hours later from the house to check on Sean before bed the first thing his nurse did was start asking about the restraint. Shes was like his restraint was left off and he is awake. She was very very rude to me not only at the hospital but on the phone and talked to me as if I am a child. I had only left the restraint off because I thought she was going to do her job and tend to his arm as she said she was going to. I intend to speak to her boss this morning. Sean last night was resting and his oxygen was decent. I will update as I know more.

April Fools Day

Sean was suprisingly diagnosed with cancer around this time last year. We had planned to celebrate his success with his treatments and so forth today but obviously we really cannot at this time. He is doing about the same today. I am getting behind in posting due to just how much we have been moving and doing this week for Sean. I am going to try and catch up now.

Tuesday improving

When we went to see Sean today he was very active. The nurse said they have lowered his sedation/pain meds which is real good. His oxygen is back down to 60% which is great. He had his eyes open and he was very alert. He would shake his head yes and no to answer me and seemed to understand alot of what I was saying. He gripped my hands alot and was focusing his eyes to look at me. I heard him whisper the word okay early in my visit when I was talking to him then the word "Home" when I asked him what he would like. I told him I was trying to get him home but we had to get him better first and asked if he understood. He shook his head yes. I told him I loved him and to squeeze my hand if he loved me back which he did. It really made me feel so much better that he was able to tell me that. He no longer has a fever and they also told me his elevated white blood cell could be caused from the steroids they have him on. I recalled when he had had radiation/chemotherapy before that his white blood cell count was once an issue a few weeks after treatment which made me wonder if that also was playing a role in the elevation. He has not been finished for that long with his WBR treatment so I will make sure to ask about it tommorow. They cannot find an infection except the pneumonia so they have continued to treat it with antibiotics. He was a little emotional when I was trying to communicate with him. I was afraid he was getting frustrated and I kept telling him that it was okay that we would figure it out somehow. Thats when he said okay. I am hoping he can get down to 50% oxygen soon so they can try to take him off the ventilator. He was 100% better then the other day and it made me feel so much better to "talk" with him today as I have missed him greatly. I reassured him that we would be there early tommorow and for him to get some rest and that we loved him. I noticed before leaving that they had turned his sedation down even more:) His stats looked great when we left around 1 am. I am intending to call the hospital before I go to sleep to make sure he is okay. He had alot of family visiting him today which made things nice. I will update more as I know more.

More on Monday

Seans brother Chris came in and Sean seemed really happy to see and hear Chris. His stats were really good and Sean seemed comfortable. He had alot of company and seemed to enjoy hearing everyone talk and move around him. When I arrived home I called the nurse at around 1 am to check on Sean and she said he was doing the same and was resting. I will update as I know more.

Monday the 29th

Seans temp seems to be normal today, I have not gotten much time with him so far today. When his mother and I arrived his father was in visiting with him so I came down to the lobby to update his blog and wait on his brother to arrive. Sean is active today, trying to open his eyes when I talk to him and moving his hands and such. They have reduced his oxygen to 80% which is great. A nurse was talking to me yesterday about Sean and the possibility of hospice. I am not really sure what will happen in the long run, I am only concerned with him getting better and coming home or at least being in a much more comfortable enviroment then he is in now. I will update as I know more.

Sunday with Sean

Sean had alot of company Sunday. His niece, her mother and her mothers sister came to see Sean today as well as his uncle Bob and cousin Sarah, Seans dad and Seans friend Eric. Sean wasn't as active as normal due to medication. They have him on four antibiotics now to fight the pneumonia and he is staying well hydrated. He spiked a 103.o temp yesterday and the nurse went from ice packs to a cooling blanket to help him break the fever. His father visited with him alot today and Sean seemed pretty okay and was tolerating the medications he is recieving well. They had his temp down alot before we left at near 3 am this morning. We didn't leave until late because Seans oxygen went weird and we were not content to leave until we knew what was going on. The nurse changed his oxygen pulse oximeter and his oxygen plummeted to 70% which scared me quite a bit. She tried to move it to his finger from his forehead and then to his ear. She turned his oxygen up to 100% and had an x-ray taken of Seans chest. The RN said the xrays were pretty identical as they had taken one yesterday she said. She thinks it was something as simple as a portion of his lung may have collapsed around the tumor and then corrected itself. She said at first she was concerned with maybe a blood clot had passed through Seans leg but then remembered he had the screen in his leg and dismissed it. He was at 100% when we left. I called when we got home and I made sure Sean was still stable before going to bed.

Saturday Night

Sean "watched" the hockey game tonight with us. He was quiet but I made sure that the speaker for the remote was near his ear where he could hear what was going on in the game. His brother is to arrive Monday from Iraq to see Sean as well as others are expected to be stopping by to visit him. Seans stats were good when we left which was later then normal. His friend Eric and his wife came by later this evening to see Sean. I made sure the nurse for the evening was asked to change the dressing on the left arm over one of his IVs. It had not been changed in a few days and was looking like it needed it. She was very nice and answered any questions I had. They said Sean had a small temp this morning but was gone by evening. They are still treating him for the pneumonia however and he seems to be doing well as we left. I intend to call the nurse before I lay down to sleep tonight just to check on Sean. Will write more as I know more.