I am asking everyone that I know to please pray for my dear old friend Carolyn and her son Michael. Her son has been suffering and in the hospital for over a month now, and things are not looking up for him at all. Following are messages that I have from her about her son's progress. They are very long, but once you read them, you will understand why I posted them all here.
Thank you so much for any prayer that you can spare.
LA
Last weekend, my son Michael was not feeling well. We thought that he just had the flu, although he very rarely ever gets sick, and when he does, he not a complainer. He did complain that his joints were hurting a lot, but we thought that it was just a virus that attacked the joints. By Tuesday evening, he was running a temperature of 104.4, so I took him to the Clinic. There the doctor said that his tonsils were infected, she gave him a prescription and sent us on our way. By yesterday morning he was even more sick and was just burning up and he was having troubles breathing. I immediately took him to the hospital. When we got there, the waiting room was packed, so I knew that we were in for a long wait. They led us back a hallway, and took my coat from me, and make me wear a surgical gown and mask, Michael too. Then they put us in a room where the air was purfied by a Hepa Filtering system. They started him on two i,v.,s and came in to take blood. They followed by taking a chest x-ray and some sort of breathing therapy. They started asking him questions like had he traveled to Hong Kong within the last 30 days, which then made me realize that they thought that he had SARS. I don't know if everyone is familiar with SARS, but it is a respritory illness that you can easily die from. Canada had several cases last year. At this point his heart rate was extremely high and so was his temperature. I stayed at the hospital as late as I could before they kicked me out. Please pray for my son. He is very sick, and they are doing all that they can for him. They aren't saying for sure right now, but they think that he has a very serious case of pneumonia.
I spent the day at the hospital, and Michael doesn’t seem much better. Because of the high fever he has developed a severe care of fever blisters on his lips and in his mouth. He said that he can take the pain in his chest, the coughing and suffering with the fever, but the pain in is mouth and lips is more than he can take, and they can’t do anything about it. I did speak with his nurse, and he left a message at the hospital for me that there is nothing that he can do about the fever blisters until they have his pneumonia under control, which may take a few days. They are giving him high doses of antibiotics through an i.v. drip, and the doctor has ordered this to continue for the next three days. Michael was hoping to be released tomorrow, but they assure me that there is no way that he will be coming home tomorrow or even by Saturday, he is just way to sick. And now he says that it burns when he urinates, so they are doing a urinalysis on that to see what the problem for that is. It’s just one thing after another now.
Michael does seem better today, although now he has developed an alergic reaction to one of the antibiotics that they are giving him, and he has what looks like blisters forming on his body. They are now giving him steroids to try to reduce the swelling in his lips, but the fever blisters are breaking and bleeding, still causing him so much pain and preventing him from eating and only able to drink small amount. He is still on two different i.v.’s and still doing this breathing therapy every 4 hours. He was up sitting in a wheel chair this evening, and his fever is lower than it has been, although he is still running one. The doctor said that he definitely will have to remain in hospital until at least Monday, and then he is not promising anything. He is still one sick kid, but the nurse told me that she feels that he has turned the corner now and although it is going to take awhile, he is getting better now.
They are still trying to determine what sort of virus that he has. They are still running blood tests, but can not come to any conclusions. They are treating him like a guinea pig, using different treatments on him every day. He has developed a horrible rash all over his body, and now they are appearing like blisters and breaking, causing him a lot of pain. They started him on yet a different antibiotic again today, but it doesn't seem like they are making any head way. It is so hard to sit there and see him suffering so much. His fever did break, which is good, but he has so many other problems, and is suffering so much.
Ang and I spent most of the day at the hospital with Michael. I do not feel that he is any better, in fact, I think that he seems worst than yesterday. We talked to one of the nurses and asked if they even know what sort of virus that they are dealing with. She said that they are still testing his blood in an attempt to determine that, but what they feel now that he is having an extreme reation to the antibotic, and it will just have to run its course. Michael is extremely depressed, feeling like he is not getting any better and he just wants to come home. It is so difficult to see him like this and knowing that there is nothing that I can do to make it better for him. His throat is still extremely sore, so he is still unable to eat. He can take small sips of water and milk, but then he gets the hiccups and that is frustrating for him. He is still on oxygen most of the time, and does an inhalation therapy every four hours. The therapy helps him breath easier, but it makes his lips very moist and sticky. The swelling in his lips is better but they are a solid mass of blisters that are broken and bleeding. He is also covered with huge spots that are now turning into blisters that are painful. He can't find a comfortable position in bed and spends most of the time sitting in a chair, which is also extremely uncomfortable.
They aren't even talking about when he can come home, they need to find out what the virus is first and how to treat it.
When I got to the hospital, Michael was feeling pretty rottten. The skin around his fingernails and toenails has started to turn dark and blisters are forming there now. He is developing more spots on his body and they are all turning to blisters which are breaking and weeping, which even includes is penis, so you can imagine how much pain he is in. He is still coughing a lot and his mouth and throat are still to sore to eat anything. He is drinking lots of water, and says that his mouth is constantly dry. Our neighbor, which is a nurse on Michael's wing, said that everything that is happening now is an allergic reaction to the drug that they were giving him, and it will just have to run its course, there really isn't anything that they can do but try to make him as comfortable as possible. The results from the blood work did not come back today, hopefully it will tomorrow. Maybe they will be able to determine the virus that caused all of this. His fever is normal, but he is still on oxygen all of the time and two i.v.'s.
There is no talk of when he will be able to come home from the hospital, I'm sure as long as he is not eating, they will not let him come home. Actually, I don't think that I can take care of him in the condition that he is in, he is better off right where he is. They are doing all that they can for him.
They have diagonased Michael as suffering from Stephen Johson Syndrome. That basically means that he has had a violent reaction to a medication, but which one, they do not know. I did some research on the internet about it, and it literally is that Michael's skin is burned from the inside out!!! A dermatologist came in last evening after his office hours were over. He ordered two different medications, one of which he wanted Michael immediately started on. Because the hospital had no one to fill the prescription, it was taken to a local pharmacy and filled at the cost of over $400. They started him on the other medication this morning. Michael is very depressed, wanting to come home, but the dermatologist told him that he may have to be in the hospital another two weeks!!! His lips are still swollen and extremely sore, so is the inside of his mouth. But it does look like the blisters on his body are starting to dry up and I can't see where he is getting any new ones. His recovery is going to take a while, but it does look like he is on the road!!!
The Dermatologist came in to see Michael yesterday, said that he will have to remain in hospital for at least another week. Michael is still on 2 i.v.'s and taking in only liquids because his mouth is still to swollen and sore to eat. The blisters over his body are starting to clear up, but a nurse told me that they will get worse before they get better, whatever that means! If they are clearing up, how can they get worse? Maybe when the skin from the blister comes off, it will be very sore, I'm not sure. He is still depressed, and the news of having to remain in hospital for at least another week didn't help any. He desperately wants to come home, and have this entire matter over with, but it is going to be quite a while before he is well again. One nurse did tell me yesterday, that after he is better, they will have to undergo extensive alergy testing to find out exactly what Michael had the reaction to. We have to know, to avoid it for the rest of his life.
I was feeling pretty optimistic this afternoon about Michael coming home next Monday, but after this evening, I'm not sure. Michael seemed in good spirits this afternoon, was making an effort at eating, and even mentioned around 4:30 that he was getting hungry so he ate a bowl of cereal. He said that he was walking around better, although he never got up the entire time that I was there. After my husband and I left the hospital that my FIL is in, we went to see Michael. They had him hooked back up on the i.v. and he was in so much pain he was crying. They were putting warm compresses on it, but it was not working, so then they tried ice. Finally the nurse came in and turned the drip up as fast as it would go just to get it over with. Even after it was over, he was still in a lot of pain. Then he got up to go to the washroom, I even had to help him get out of bed, and he didn't seem to be walking any better. It is so hard for my husband and I to sit there and watch him suffer so much. He just wants to get better and come home. That is what we want too, but it definitely is going to take time.
As far as Michael goes, he seemed a little better last night. His lips are not as swollen and he is making an attempt at eating more solid foods, although still "soft" in texture. One of the specialists came in yesterday, and said that he would have to remain in the hospital at least until Monday, which is a lot better than the two more weeks that one of the other specialists said the day before. He had blurred vision, but they have stopped putting in the eye cream, and Michael say's that he can see better now. I was beginning to worry that this had permanently effected his eye sight.
Michael finally got to come home yesterday (Monday), after being in the hospital nearly three weeks! I'm so glad to have him home, but he still needs lots of care and time to recuperate. It has been an exhausting ordeal, but fortunately he is on the mend and at home. He is on several different kinds of medication, and will be for awhile. He is to go back to the hospital on Friday for a chest x-ray, just to make sure the pneumonia is gone. He is still extremely swollen from the steroids, and is still covered with blisters, but they are healing. His eyes are pretty clear, and he can see pretty good now, although he is still using an eye cream in them.
I thought that it was to soon for Michael to come home from hospital, but that is all that he wanted. He spent the day yesterday on and off of the computer, and by last night his left foot was swollen up huge and two of the blisters on top of his foot were red and weeping. He was in so much pain. I finally called the hospital and talked to one on the nurses on the ward where he was, and she told me to put cool compresses on it and call our doctor in the morning. I also elevated his foot, hoping that that would help the swelling. During the night he tried to roll on his side, but keep his foot on the pillows and he thinks that he pulled a muscle in his back, and now his back is killing him. I am applying ice and then heat this morning, trying to help that pain and will be calling the doctor when her office opens to see what if anything that I can do for him. She probably will want to see him, poor kid, like he hasn't been through enough already. This morning I had him step on the scales. Michael weighs a grand total of 138 pounds, down from around 170 just three weeks ago! Can you believe it? He looks so thin and frail, and he has a long way to go to get well.
Saturday morning Michael woke up yelling for help because he was coughing up blood. He was taken back to the hospital here in Niagara Falls, but they felt that he was beyond them helping him, so they transferred him to a better hospital in Hamilton. There they did a procedure where they go down into the lungs with a scope, and then they suctioned them out. They are now thinking that he does not have pneumonia, that because of the all antibiotics, he may have developed a fungus in his lungs. His white blood count is extremely low, so tomorrow they are doing a test on his blood marrow. Today they did a test for T.B. They are going to find out exactly what is wrong with Michael, once and for all.
We talked with his blood doctor yesterday, she said that his white blood cell count is going up, but his platelet level is still extremely low, and they can not figure out why. Today they did a bone marrow test, hopefully that will come back fine. They are still talking about doing the biopsy on his lung tissue, but no talk of when. They say that it is one huge puzzle and slowly the pieces are coming together. At least his is in good hand in the hospital where he is. It is a teaching hospital, so there are lots of specialists and doctors looking at him.
He is starting to get his appetite back, and eating more. Hopefully he will start to put on his weight, he is so thin and frail looking. I am still trying to work and go to the hospital when I can. They are still giving me a hard time at work about taking off, so I am dealing with it as best as I can. Michael was so sick on Tuesday night.
Michael is still in hospital, and probably will be there for a while yet. He has a team of doctors looking after him, and have now consider him a case study. Apparently he is fighting 4 severe infections at the same time. He has a rare form of pneumonia, a rare fungal disease in his lungs, plus two others infections that I can't remember the names of. All of this stems from the Stephen Johnson Syndrome and how it has weakened his immune system. It is so mind boggling when the doctors come in and talk all that medical talk, and we just listen and hope that some of it sinks in. They changed all his meds, and he is now on four constant iv drips. They were considering a blood transfusion, but have put that on hold for now. He is having severe back pain, but after running extensive tests, they feel that it is just from all the coughing, and now have him on a high potent pain killer.
Sunday when we went to see Michael, we were met in the hallway by a nurse to warn us to how sick Michael was. She said that she was extremely worried about him, and she felt that we needed to go to administration to step up his treatment, because she could not see him getting any better. She offered to make the call for us, which she did. Later in the day, Ang and I met with three of his doctors, that insisted that "on paper" he was getting better. Then on Monday, Michael started coughing up a lot of blood. They moved him to "Step Down" where he was put on a heart monitor and more closely watched by the nurses, and then eventually was moved, when a bed was available, down to I.C.U., just in cast the blood continued. On Tuesday morning they did a procedure where they went down into his lungs with a camera, just to see what was going on, and to suction out fluid and take tissue and blood samples . The doctor that did the procedure is one of the best, and is the I.C.U. Specialist. He is very thorough, which is reassuring. After the procedure, he explained everything to me in detail. We knew that Michael has what they call "fungul balls" in his lungs, but this doctor explained in more detail. These "balls" are not attached, but floating around in his lungs. As Michael coughs, they cause abraisions inside his lungs, and that is where the bleeding is coming from. They will attempt to treat them with antibiotics, but if that doesn't work, they may have to remove them surgically, and if that doesn't work, they may have to remove part of his lungs. As you can only imagine, this is devistating news, and we are praying that it doesn't come to this. Yesterday they moved him into the C.C.U. where he is still closely being monitored, and as his own nurse watching him 24/7. He was extemely short of breath yesterday, and his nurse explained that is because of all the coughing, he now has a small hole in one of his lungs. If it creates a problem, they will insert a small tube into it, but they have not done that as of yet.
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