Wednesday, November 30, 2011
Matthew's New Big Boy Bed
After Matthew's surgery he has started to do really good. They were able to extubate him on Monday morning after his surgery. (surgery was Saturday) Since he has been extubated he has also been able to get off of quite a few other medications. He has been pretty alert and seems to be comfortable for the most part. We have been able to hold him for as long as we want and twice a day. It has been great to just be able to hold him and not have to worry about pulling his breathing tube out of his mouth. He seems to like us to hold him. He just snuggles right in and sleeps pretty soundly in our arms. I was able to hold him skin to skin today. They say that skin to skin is great for healing. I sure hope so.
It appears that Matthew needed this surgery to have his organs moved to the right spots and also to help his reflux. Since then he has made great strides in the right direction. I am optomisticly hopeful. We are afraid to get our hopes too high, but at the same time all the nursing staff and Doctors keep telling us how good he is doing. He made great improvements since surgery, first getting off the vent, then maintaining his oxygen levels on just a nasal cannula and now moving to a crib and out of the incubator.
He is still struggling with getting his stomach to work right. They say it could take awhile to get it working since it never really has had to yet. They are feeding him through a tube they put into his stomach called a G-tube. He is only getting very small amounts of food right now, about a teaspoon every three hours. Once he starts to empty his stomach then they can increase the feeds through his feeding tube. If he tolerates more milk ok then they will eventually start to feed him orally. They will have to work with him to get him to learn to suck. He has not been able to until now. He has started to suck on a pacifier a little bit. He will also have to learn to swallow, which he is working on with his saliva.
We are very happy with his progress this week. The Doctors still have not given us a timeline for going home, but they have suggested that if he keeps going in this direction he will be home before we know it. We sure hope so. Well, that is about all for now.
Love, Jaime
It appears that Matthew needed this surgery to have his organs moved to the right spots and also to help his reflux. Since then he has made great strides in the right direction. I am optomisticly hopeful. We are afraid to get our hopes too high, but at the same time all the nursing staff and Doctors keep telling us how good he is doing. He made great improvements since surgery, first getting off the vent, then maintaining his oxygen levels on just a nasal cannula and now moving to a crib and out of the incubator.
He is still struggling with getting his stomach to work right. They say it could take awhile to get it working since it never really has had to yet. They are feeding him through a tube they put into his stomach called a G-tube. He is only getting very small amounts of food right now, about a teaspoon every three hours. Once he starts to empty his stomach then they can increase the feeds through his feeding tube. If he tolerates more milk ok then they will eventually start to feed him orally. They will have to work with him to get him to learn to suck. He has not been able to until now. He has started to suck on a pacifier a little bit. He will also have to learn to swallow, which he is working on with his saliva.
We are very happy with his progress this week. The Doctors still have not given us a timeline for going home, but they have suggested that if he keeps going in this direction he will be home before we know it. We sure hope so. Well, that is about all for now.
Love, Jaime
Sunday, November 27, 2011
Surgery Number 3
Yesterday Matthew had surgery number 3. The surgery was to fix a couple different things. One was exploritory for finding out wether or not his bowels and intestines were twisted, or had a narrowing or anything abnormal going on. Well his bowels were twisted about 180 degrees so the surgeon fixed that and also his stomach was up next to his patch and starting to attach itself to the patch.The surgeon also fixed that. He also did a procedure called a fundoplication. (here is a link to help explain it) http://en.wikipedia.org/wiki/Nissen_fundoplication
This will help with his severe reflux that he had. He was not able to keep anything in his stomach which in turn caused him to aspirate and get pneumonia. The Doctors all agreed that this can not happen again. So the fundoplication was necessary. They also removed his appendix since this is a totally useless organ. They remove the appendix so that there is never a question as to what would be causing abdominal pain. It will only be something going on with his diaphragmatic hernia.
Matthew did great during surgery and has continued to do so. He was able to be weaned off of some of his medications today. We knew they would wean after his surgery, but we had no idea it would be so soon. The Doctor is really impressed at how well he is doing. They are going to try feeding him again the middle of the week. It has been about 3 weeks since he has had anything but IV nutrition. Lets keep our fingers crossed that this surgery fixed all the issues with him eating. In order to get out of the hospital and come home he has to be able to eat and breath on his own. The breathing will come before the eating I am sure. He is already doing good with the breathing. In the next couple days we should see some major improvements to his breathing. All the sedation from surgery will be worn off and he will be able to take all his own breaths, instead of having the vent do most of the work.
I will keep you informed of his recovery status. We just hope and pray that he continues to do as well as he is right now. He is a strong little boy that has put up a huge fight in his short little life so far. I can only imagine what he has in store for us as parents. I am sure he will test my patience beyond anything I have seen yet.
Lots of love,
Jaime
This will help with his severe reflux that he had. He was not able to keep anything in his stomach which in turn caused him to aspirate and get pneumonia. The Doctors all agreed that this can not happen again. So the fundoplication was necessary. They also removed his appendix since this is a totally useless organ. They remove the appendix so that there is never a question as to what would be causing abdominal pain. It will only be something going on with his diaphragmatic hernia.
Matthew did great during surgery and has continued to do so. He was able to be weaned off of some of his medications today. We knew they would wean after his surgery, but we had no idea it would be so soon. The Doctor is really impressed at how well he is doing. They are going to try feeding him again the middle of the week. It has been about 3 weeks since he has had anything but IV nutrition. Lets keep our fingers crossed that this surgery fixed all the issues with him eating. In order to get out of the hospital and come home he has to be able to eat and breath on his own. The breathing will come before the eating I am sure. He is already doing good with the breathing. In the next couple days we should see some major improvements to his breathing. All the sedation from surgery will be worn off and he will be able to take all his own breaths, instead of having the vent do most of the work.
I will keep you informed of his recovery status. We just hope and pray that he continues to do as well as he is right now. He is a strong little boy that has put up a huge fight in his short little life so far. I can only imagine what he has in store for us as parents. I am sure he will test my patience beyond anything I have seen yet.
Lots of love,
Jaime
Thursday, November 24, 2011
Matthew update:
A quick update on Matthew:
He has made a big improvement from two weeks ago. He is still not out of the woods, but he is doing much better then he was.
Two weeks ago they had to put him on a different ventilator to help him breath easier. They were able to take it off and he has just been on the original vent for about a week now. They did change out his ventilator cannula to a "new" one. (It has been around for years, but they have changed they way it works and operates now).
It is responds to neuro receptors instead of diaphragm receptors and makes it a lot more comfortable for him. The respiratory therapists say he likes it better and is more comfortable.
As you all probably already know I was able to hold Matthew for the first time on Sunday night. He was 26 days old. It was the best feeling in the world. I was able to hold him for about an hour. He just sank into my chest and fell into a deep sleep. The nurses said they had never seen him so relaxed before. They only thing that would have made it better is if Jim could have held him too. He still has not held him. It was a huge production to get him and all of his wires and tubes moved so I could hold him.
He is doing much better then he was, but he is still not out of the woods. They have not been able to feed him anything for about 3 weeks. He has a very enlarged esophagus and refluxes very bad. He ended up with pneumonia because of this. That was one of the reasons he had such a bad week two weeks ago. So the Doctors say that this can not happen again. So they have not fed him anything but IV fluids. With that they feel he needs another surgery. This surgery is called a fundoplication, it is simply them taking the top part of the stomach and wrapping it around the esophagus and stitching it around it. This will not allow anything from the stomach to come back up. Yes, that does mean he will not be able to vomit. One of the side effects of this procedure. We are not sure when this surgery will take place. Possibly as early as Saturday this week. But more then likely it will be Monday. We are not looking forward to another surgery, but it is necessary to get Matt moving in the right direction. He needs to be able to eat to grow and get stronger so he can be closer to coming home. The doctors still have not even tried to guess when Matt could possibly come home. Our best guess is at least another 4-6 weeks. That is with 2 weeks for recovery and then 2 weeks for getting stronger and getting feedings where they want them and then 2 more weeks to ween everything off they need to ween.
So as you can see we still have a long road ahead of us.
I guess that wasn't really a quick update, but an update none the less. Thank you all for your continues support. We couldn't do this without it.
Love,
Jaime
He has made a big improvement from two weeks ago. He is still not out of the woods, but he is doing much better then he was.
Two weeks ago they had to put him on a different ventilator to help him breath easier. They were able to take it off and he has just been on the original vent for about a week now. They did change out his ventilator cannula to a "new" one. (It has been around for years, but they have changed they way it works and operates now).
It is responds to neuro receptors instead of diaphragm receptors and makes it a lot more comfortable for him. The respiratory therapists say he likes it better and is more comfortable.
As you all probably already know I was able to hold Matthew for the first time on Sunday night. He was 26 days old. It was the best feeling in the world. I was able to hold him for about an hour. He just sank into my chest and fell into a deep sleep. The nurses said they had never seen him so relaxed before. They only thing that would have made it better is if Jim could have held him too. He still has not held him. It was a huge production to get him and all of his wires and tubes moved so I could hold him.
He is doing much better then he was, but he is still not out of the woods. They have not been able to feed him anything for about 3 weeks. He has a very enlarged esophagus and refluxes very bad. He ended up with pneumonia because of this. That was one of the reasons he had such a bad week two weeks ago. So the Doctors say that this can not happen again. So they have not fed him anything but IV fluids. With that they feel he needs another surgery. This surgery is called a fundoplication, it is simply them taking the top part of the stomach and wrapping it around the esophagus and stitching it around it. This will not allow anything from the stomach to come back up. Yes, that does mean he will not be able to vomit. One of the side effects of this procedure. We are not sure when this surgery will take place. Possibly as early as Saturday this week. But more then likely it will be Monday. We are not looking forward to another surgery, but it is necessary to get Matt moving in the right direction. He needs to be able to eat to grow and get stronger so he can be closer to coming home. The doctors still have not even tried to guess when Matt could possibly come home. Our best guess is at least another 4-6 weeks. That is with 2 weeks for recovery and then 2 weeks for getting stronger and getting feedings where they want them and then 2 more weeks to ween everything off they need to ween.
So as you can see we still have a long road ahead of us.
I guess that wasn't really a quick update, but an update none the less. Thank you all for your continues support. We couldn't do this without it.
Love,
Jaime
Thankful!!
On this Thanksgiving day I have so much to be thankful for. First off I am Thankful for my wonderful husband that is my best friend and he would do anything for his family. I love you Jim. I am thankful for my boys, both are such miracles in our life. I don't know what I would do with out them. I am thankful for all the hospital staff that is taking care of Matthew. I am thankful that Matthew is doing better then last week. I am extremely thankful that I got to hold Matthew last Sunday for an hour. I am thankful for all of the support we have received from family and friends during all of this. I am most thankful for the faith that I have in just knowing that little Matthew will be OK and home in our arms soon.
This Thanksgiving day Finn and I are going to Jim's parents house for dinner, then later to go to the festival of trees. Put on by the hospital where Matthew is at. It is a bunch of decorated trees and Finn loves lights so I think he will do ok with it. I will be able to go spend a couple hours with Matt this afternoon while Finn sleeps at the grandparents.
Jim made a trip down to Salt Lake for business. The first trip he has taken in over 6 weeks. It was REALLY hard for him to leave, but he knew it was necessary. Matthew is holding his own so Jim could go without too many worries.
Finn is just being a sweet boy and has been doing great with all of this chaos that has been going on for a month now. He has his moments of fits, but he is 2. Other then that he has been doing amazing with all of this. So glad he has so many people that love him and are so willing to watch him.
We just want to wish you all a Happy Thanksgiving!
This Thanksgiving day Finn and I are going to Jim's parents house for dinner, then later to go to the festival of trees. Put on by the hospital where Matthew is at. It is a bunch of decorated trees and Finn loves lights so I think he will do ok with it. I will be able to go spend a couple hours with Matt this afternoon while Finn sleeps at the grandparents.
Jim made a trip down to Salt Lake for business. The first trip he has taken in over 6 weeks. It was REALLY hard for him to leave, but he knew it was necessary. Matthew is holding his own so Jim could go without too many worries.
Finn is just being a sweet boy and has been doing great with all of this chaos that has been going on for a month now. He has his moments of fits, but he is 2. Other then that he has been doing amazing with all of this. So glad he has so many people that love him and are so willing to watch him.
We just want to wish you all a Happy Thanksgiving!
Thursday, November 17, 2011
Questions???
I know that some of you have questions that I probably have not answered on here yet, so I thought I would answer some of them.
When does Matthew get to come home- We do not know and neither do the Doctors. The best answer for that one is when he is healthy enough to come home. Which at this point looks like it will be weeks to months.
Have you been able to hold him yet- No, we have not been able to hold our little boy. We were not even allowed to touch him this last weekend. We went about 5 days without touching and barely being able to look at him. He is in a very fragile state right now. When we do touch him it is just putting his little hand around our fingers. or we can hold is feet and head at the same time and that is pretty much it.
How serious is CDH- CDH is a very serious defect. It not only effects the lungs, but all the other organs and anatomy as well. The lungs are a huge part of it, but so it the bodies whole vasculature system. So Pulmonary hypertension is a huge problem in CDH kids. (PH is basically high blood pressure in the lungs).
Will he live with this the rest of his life- Yes, this is something we will have to deal with his whole life.
He may come home with feeding tubes, on oxygen and on a whole slew of drugs. We just don't know at this point.
I hope this helps a little. There are a bunch of sites that you can go to read up on CDH. They explain the basics of it. Here are a couple links you can go to to find good information.
http://breath-of-hope.blogspot.com/
http://fetus.ucsfmedicalcenter.org/cdh/
http://www.chop.edu/service/fetal-diagnosis-and-treatment/fetal-diagnoses/congenital-diaphragmatic-hernia-cdh.html
All of these sites will give you a pretty good overview of what CDH is.
As we are learning there is a lot more to it then what all these sites say, but they are good information non the less.
When does Matthew get to come home- We do not know and neither do the Doctors. The best answer for that one is when he is healthy enough to come home. Which at this point looks like it will be weeks to months.
Have you been able to hold him yet- No, we have not been able to hold our little boy. We were not even allowed to touch him this last weekend. We went about 5 days without touching and barely being able to look at him. He is in a very fragile state right now. When we do touch him it is just putting his little hand around our fingers. or we can hold is feet and head at the same time and that is pretty much it.
How serious is CDH- CDH is a very serious defect. It not only effects the lungs, but all the other organs and anatomy as well. The lungs are a huge part of it, but so it the bodies whole vasculature system. So Pulmonary hypertension is a huge problem in CDH kids. (PH is basically high blood pressure in the lungs).
Will he live with this the rest of his life- Yes, this is something we will have to deal with his whole life.
He may come home with feeding tubes, on oxygen and on a whole slew of drugs. We just don't know at this point.
I hope this helps a little. There are a bunch of sites that you can go to read up on CDH. They explain the basics of it. Here are a couple links you can go to to find good information.
http://breath-of-hope.blogspot.com/
http://fetus.ucsfmedicalcenter.org/cdh/
http://www.chop.edu/service/fetal-diagnosis-and-treatment/fetal-diagnoses/congenital-diaphragmatic-hernia-cdh.html
All of these sites will give you a pretty good overview of what CDH is.
As we are learning there is a lot more to it then what all these sites say, but they are good information non the less.
Wednesday, November 16, 2011
A rough weekend
I am not sure where to start, so I guess I will start on Thursday of last week.
Matthew was scheduled to have a minor surgery to have a central line placed in his chest on Friday. This is just a more permanent IV site. In order to do this they were going to have to give him some heavy sedation so he was going to have to re intubated. (put back on the vent) Just for the surgery. Well he ended up taking a dive late Thursday night Friday morning. He was put back on the vent and was at 100% oxygen on the vent and his oxygen saturation was dropping. That is not a good thing since he was already at 100%, there is no where to go past 100. So it was really scary watching all of this. The Doctor was equally as worried and was not sure why he was doing what he was doing. So not only were we concerned the Doctors reaction was not helping. So we spent about 3 1/2 days on pins and needles. Then on Monday this week the Doctors changed shifts and another Dr. came in and had new ideas on what they could try. So they did a bunch of tests on him. (This is a daily thing) They found that he had severe pulmonary hypertension and also pneumonia (which is not good for him). With this diagnosis they were able to start different medications and try to treat each thing a little differently. As of today (Wednesday) he is doing quite a bit better. His o2 needs are down and he is not d-saturating as bad as he was. So we are just hoping that he is going down the right path now. We don't want to get our hopes too high. They say that with these kids (CDH kids) you take one step forward and two steps back. So we just continue to ask for your prayers for our little fighter. All the nurses and Doctors say he is feisty and stubborn. They say that is how they like the babies to be.
I hope I was able to sum up a little about what is going on with enough information, but not too much to confuse everyone. It is hard to try and explain EVERYTHING they are actually doing with him. It would take up 4 pages if I would tell you all that is going on with him. He is on crazy amounts of medication for different things, but that gets really confusing. So I will leave all of that out. If you have more questions or anything feel free to either email or Facebook me. I will try to get back to you when I have a few free minutes. Thank you for all the messages of support that we have received.
Love,
Jaime
Matthew was scheduled to have a minor surgery to have a central line placed in his chest on Friday. This is just a more permanent IV site. In order to do this they were going to have to give him some heavy sedation so he was going to have to re intubated. (put back on the vent) Just for the surgery. Well he ended up taking a dive late Thursday night Friday morning. He was put back on the vent and was at 100% oxygen on the vent and his oxygen saturation was dropping. That is not a good thing since he was already at 100%, there is no where to go past 100. So it was really scary watching all of this. The Doctor was equally as worried and was not sure why he was doing what he was doing. So not only were we concerned the Doctors reaction was not helping. So we spent about 3 1/2 days on pins and needles. Then on Monday this week the Doctors changed shifts and another Dr. came in and had new ideas on what they could try. So they did a bunch of tests on him. (This is a daily thing) They found that he had severe pulmonary hypertension and also pneumonia (which is not good for him). With this diagnosis they were able to start different medications and try to treat each thing a little differently. As of today (Wednesday) he is doing quite a bit better. His o2 needs are down and he is not d-saturating as bad as he was. So we are just hoping that he is going down the right path now. We don't want to get our hopes too high. They say that with these kids (CDH kids) you take one step forward and two steps back. So we just continue to ask for your prayers for our little fighter. All the nurses and Doctors say he is feisty and stubborn. They say that is how they like the babies to be.
I hope I was able to sum up a little about what is going on with enough information, but not too much to confuse everyone. It is hard to try and explain EVERYTHING they are actually doing with him. It would take up 4 pages if I would tell you all that is going on with him. He is on crazy amounts of medication for different things, but that gets really confusing. So I will leave all of that out. If you have more questions or anything feel free to either email or Facebook me. I will try to get back to you when I have a few free minutes. Thank you for all the messages of support that we have received.
Love,
Jaime
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