Maybe a little too fast for Steve!
Dr. Damrose called back a little while ago. He says he will absolutely perform the tracheotomy. His scheduler will call us on Monday to set it up and Dr. Damrose will get in touch with Steve's primary doctor and discuss taking him off of the coumadin {he has to be off the coumadin and on a different blood thinner for about a week before surgery so he does not bleed too much and then he will go back on it after}.
To say Steve is nervous is an understatement. But he is still ready to do this. He just wishes it was over and done with, the waiting is hard.
A friend at church said a while back that he felt God saying "help is on the way" when he was praying for us. Maybe this is it?
Friday, October 31, 2008
Bruno today
Just had a nice visit with Bruno. Poor little guy stood right up when he saw me and walked right over. He is still having bloody diarrhea but there was no vomiting last night or today. I think he has lost a little weight but not too much. They are going to try and feed him a little today and see how he handles it. He is more alert and clearly wants out of there. He is in a tiny little isolation room all by himself and I am sure that now that he is more alert is very scared and lonely. I just held him and loved on him for nearly two hours. If there was a chair in there I'm sure I would have stayed longer!
It was hard leaving him. I kept trying to get him to go to sleep but he was having none of it and sat there and stared at me as I left. I hope he comes home soon!
The boy is too funny for his own good.
If you haven't read the previous post yet please do so now or this won't make any sense.
Done reading? Ok...
Brandon said, "it's too bad dad doesn't have his neck hole yet because we could dress him up as a Pez dispenser for halloween"!
Steve didn't think it was that funny. He has no sense of humor.
Done reading? Ok...
Brandon said, "it's too bad dad doesn't have his neck hole yet because we could dress him up as a Pez dispenser for halloween"!
Steve didn't think it was that funny. He has no sense of humor.
Decisions
Yesterday was a very long day.
First of all...the vet called this morning and said Bruno is better! He is still very sick but he seems to have turned a corner and is more alert. They are continuing IV fluids and antibiotic medicines. I'm going down there in a little while to spend some time with him. They tell me it's just like human babies, when their loved ones are with them and can hold them they get better faster. I am very thankful to God right now. I know it may seem trivial to some but the love we have for that little guy is very real and important to us.
So we met for a very long time with the pulmonary specialist yesterday and we have made a decision. Steve is going to go ahead and get the tracheotomy. I know this sounds drastic but it really isn't. All signs are pointing to Steve having an upper airway obstruction. Basically the muscles controlling his vocal cords are swelling and inflaming and closing when they are being irritated by the acid from his stomach. If he gets a tracheotomy it is placed below the vocal cords and even if they are completely shut he can still breathe without difficulty.
He will still be able to speak and breathe through his mouth and nose. All he has to do is close off the opening to the trach. This will also take care of his sleep apnea. The doctor was very clear yesterday that Steve does have asthma. Most likely caused by the acid reflux as well. The trach won't change that but he can administer his medicines through it.
The goal is to get him breathing well and allow him to heal and get well. We are still going to pursue the GI doctors at Stanford and possibly the surgery to correct the stomach problem. They do not even have a consult appointment available until the first week in December and most likely will not even consider surgery for months because of the clots in his lungs and the blood thinning drugs he needs. Steve needs help now. He's been hospitalized 13 times since the end of January, has not been to work since the first week in September and he needs to get back to his life.
Please pray that the doctors agree and if this is something that can be done it gets done very soon. Steve is very nervous but relieved. It's a little scary but a lot hopeful and he is very anxious to just get this done. So am I. I bet you all are too!
First of all...the vet called this morning and said Bruno is better! He is still very sick but he seems to have turned a corner and is more alert. They are continuing IV fluids and antibiotic medicines. I'm going down there in a little while to spend some time with him. They tell me it's just like human babies, when their loved ones are with them and can hold them they get better faster. I am very thankful to God right now. I know it may seem trivial to some but the love we have for that little guy is very real and important to us.
So we met for a very long time with the pulmonary specialist yesterday and we have made a decision. Steve is going to go ahead and get the tracheotomy. I know this sounds drastic but it really isn't. All signs are pointing to Steve having an upper airway obstruction. Basically the muscles controlling his vocal cords are swelling and inflaming and closing when they are being irritated by the acid from his stomach. If he gets a tracheotomy it is placed below the vocal cords and even if they are completely shut he can still breathe without difficulty.
He will still be able to speak and breathe through his mouth and nose. All he has to do is close off the opening to the trach. This will also take care of his sleep apnea. The doctor was very clear yesterday that Steve does have asthma. Most likely caused by the acid reflux as well. The trach won't change that but he can administer his medicines through it.
The goal is to get him breathing well and allow him to heal and get well. We are still going to pursue the GI doctors at Stanford and possibly the surgery to correct the stomach problem. They do not even have a consult appointment available until the first week in December and most likely will not even consider surgery for months because of the clots in his lungs and the blood thinning drugs he needs. Steve needs help now. He's been hospitalized 13 times since the end of January, has not been to work since the first week in September and he needs to get back to his life.
Please pray that the doctors agree and if this is something that can be done it gets done very soon. Steve is very nervous but relieved. It's a little scary but a lot hopeful and he is very anxious to just get this done. So am I. I bet you all are too!
Thursday, October 30, 2008
I just want a break.
I really have been trying to be thankful. I know I have many things to be thankful for, I really do. But today is just really dark.
The phone has started to ring and none of it has been good news.
First of all the vet called and the puppy is worse. We are awaiting blood tests and then we will have decisions to make. Yesterday they told us he could come home. Now he may never come home.
Steve's work called. Apparently Steve thought he'd be going back today and they wanted to know why he isn't there. What are we supposed to tell them? We have no idea when he will be better. If he will be better. He is doing awful this morning and I fear he is heading for another admission. Even if he doesn't he certainly isn't moving far from the bed and his machines.
I had Laryssa's parent teacher conference this morning. She is doing excellent in everything except homework. Home. Chuckie is doing even worse. I meet with those teachers tomorrow.
It just feels like it's all falling apart and I can't do anything about it. I keep wondering what I'm doing wrong.
The phone has started to ring and none of it has been good news.
First of all the vet called and the puppy is worse. We are awaiting blood tests and then we will have decisions to make. Yesterday they told us he could come home. Now he may never come home.
Steve's work called. Apparently Steve thought he'd be going back today and they wanted to know why he isn't there. What are we supposed to tell them? We have no idea when he will be better. If he will be better. He is doing awful this morning and I fear he is heading for another admission. Even if he doesn't he certainly isn't moving far from the bed and his machines.
I had Laryssa's parent teacher conference this morning. She is doing excellent in everything except homework. Home. Chuckie is doing even worse. I meet with those teachers tomorrow.
It just feels like it's all falling apart and I can't do anything about it. I keep wondering what I'm doing wrong.
Wednesday, October 29, 2008
Narrowly escaped that one!
Steve needs more prayer. Again.
We just got home from a very long doctor appointment. Her first reaction when she saw him was to say "I'm calling an ambulance". But we had a good talk and sat with Steve for a very long time and helped him get the breathing under control. His lungs are clear, it's his throat that is closing up. He had a bad night with the reflux and then woke up suddenly this morning and the wheezing started. Taking deep breaths through his nose and a couple of breathing treatments and some anxiety medicine and a shot of steroids and he is doing a little better. He is home in bed now, on the Bi-Pap and oxygen. He is very nauseous and has no appetite. And I'm sure a little depressed.
He would really like to go to the mens group for our church at Starbucks tonight. It has been good for him to see how much our church body cares about him and it would do him so much good to get out. Please pray that he feels better by tonight and can make it. This cycle has to stop!
We just got home from a very long doctor appointment. Her first reaction when she saw him was to say "I'm calling an ambulance". But we had a good talk and sat with Steve for a very long time and helped him get the breathing under control. His lungs are clear, it's his throat that is closing up. He had a bad night with the reflux and then woke up suddenly this morning and the wheezing started. Taking deep breaths through his nose and a couple of breathing treatments and some anxiety medicine and a shot of steroids and he is doing a little better. He is home in bed now, on the Bi-Pap and oxygen. He is very nauseous and has no appetite. And I'm sure a little depressed.
He would really like to go to the mens group for our church at Starbucks tonight. It has been good for him to see how much our church body cares about him and it would do him so much good to get out. Please pray that he feels better by tonight and can make it. This cycle has to stop!
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