Gabe had a rough night. He has been so fussy and uncomfortable for the last couple days. Brian's sister and husband came to visit last night during his fussiness. A friend brought up a wonderful dinner as well. She had plates, plastic ware....the works. It was great. He was so irritable during that time and they gave him some Versed. After that we had about 40 minutes of "regular" Gabe. I even got a kiss! He was chatting and talking about Elmo. It was great. After that he got a good couple hours of sleep. When he woke up, he was really upset again. He was thrashing around in his bed and reaching for me to hold him. It is so difficult to not be able to hold your child when they are asking for you to. Last night was a really tough night for mommy and daddy.
Brian worked last night and reported that he didn't sleep that great. This morning, they found that he has fluid around the heart, and in the lung. They also suspect a blood clot in his leg. They just did another echo cardiogram and a Doppler on his leg. They are going to put a chest tube back in today to drain. This will put us a little farther behind in recovery and going home. We are just waiting for the doctor to come in and let us know about these last tests and the chest tube. They will sedate him and insert the chest tube right here in the room. We really appreciate your thoughts and prayers. This might be an even tougher day then surgery.
Sunday, January 10, 2010
Saturday, January 9, 2010
Saturday
Brian stayed all night with Gabe and reported a fairly good night. He had a episode around 2:00 a.m. after he was given Tylenol when he vomited. I am sure with a fresh incision on the chest, that hurt a lot. Brian said that otherwise he slept fairly well. I am on the day shift and the doctors just rounded. They all think he is headed in the right direction.
They suspect that his art line will come out on Monday, which means we will get to hold him! That will be almost a week since we have held him and I am so looking forward to that. He should also start with some milk on Monday, which will help sooth him. He doesn't seem as mad at me today, but he is really down. We experienced this the last time. In fact, he was so depressed the last couple days in the hospital the last time, it was very heart breaking to watch. Luckily now he is into videos and we brought many Elmo videos to help pass the time. Right now, I am trying to get him to relax and get some sleep. It is really fighting it today and he really pretty cranky. I think his eyes are getting a little heavy.......hopefully.......I am off to try to facilitate a nap. Until tomorrow....
They suspect that his art line will come out on Monday, which means we will get to hold him! That will be almost a week since we have held him and I am so looking forward to that. He should also start with some milk on Monday, which will help sooth him. He doesn't seem as mad at me today, but he is really down. We experienced this the last time. In fact, he was so depressed the last couple days in the hospital the last time, it was very heart breaking to watch. Luckily now he is into videos and we brought many Elmo videos to help pass the time. Right now, I am trying to get him to relax and get some sleep. It is really fighting it today and he really pretty cranky. I think his eyes are getting a little heavy.......hopefully.......I am off to try to facilitate a nap. Until tomorrow....
Friday, January 8, 2010
Rough Night
Brian stayed all night with him and it wasn't the best night Gabe has had. He had a couple more of the spells with the pulmonary hypertension. They did another echo cardiogram today and they assure us that the heart function is good. They all think that this is the lungs getting used to the way the heart is now functioning. I know that there is much trial and error involved, but for me, the "wait and see" is difficult. I also know that the doctors and nurses deal with this everyday and they know what they are doing.
Brian is home sleeping and he was supposed to work tonight. They have arranged for someone to cover for him, so he will probably be hanging out with Gabe. I am on the day shift today. Mom and Dad come up in the afternoons and help out. The last time, we didn't break it up in shifts as much and I think this way is much smarter.
I think this current issue isn't an emergency, but it will likely keep us here longer and we will go home with more medication. Still unnerving for me.....we are hanging in there.
Brian is home sleeping and he was supposed to work tonight. They have arranged for someone to cover for him, so he will probably be hanging out with Gabe. I am on the day shift today. Mom and Dad come up in the afternoons and help out. The last time, we didn't break it up in shifts as much and I think this way is much smarter.
I think this current issue isn't an emergency, but it will likely keep us here longer and we will go home with more medication. Still unnerving for me.....we are hanging in there.
Thursday, January 7, 2010
First Bump in the Road
I knew it couldn't all go this smoothly! We had some issues today with pulmonary hypertension. The doctors and nurses have assured me that it is ok. They explained that the changes in pressure that his lungs have experienced is causing something of a shock. Remember, I am NOT a medical person and Brian wasn't here to dumb down the explanation for me.
They also think that he may be reacting to coming off the oxygen, so he is back up to 100%. They have also put him Viagra (yes it actually has a medical purpose) for the hypertension. They have assured me that this is more of a transitional thing as his body gets used to how his heart now functions. They considered this a crisis situation and they are doing everything to make sure that his doesn't get himself into another crisis. The interesting part is that he slept through the whole thing.
On a good note, his temperature has come down and his blood pressure has stabilized.
We are taking this an hour at a time. Keep the prayers coming. Love to all.
They also think that he may be reacting to coming off the oxygen, so he is back up to 100%. They have also put him Viagra (yes it actually has a medical purpose) for the hypertension. They have assured me that this is more of a transitional thing as his body gets used to how his heart now functions. They considered this a crisis situation and they are doing everything to make sure that his doesn't get himself into another crisis. The interesting part is that he slept through the whole thing.
On a good note, his temperature has come down and his blood pressure has stabilized.
We are taking this an hour at a time. Keep the prayers coming. Love to all.
Tube is out!
The breathing tube is out and he is doing really well! He handled it well and he is back to resting peacefully!
Making Progress
Gabe had a great night last night. He is still sedated, but they have been weaning him off slowly. They tested his breathing and he was able to breathe on his own, so we are now just waiting for the doctors to come in and extubate him. This will mean that he will be more wakeful today, but still sleeping a lot. We are excited because we really haven't seen his eyes open since he left for surgery. We miss his laugh and smile!
The only problems that he is having right now is the elevated temperature. The doctors are more concerned about it today and may start antibiotics soon, just in case. The other issue is that there is a blood clot behind his atrium. This really concerned me, but a couple doctors and several nurses have assured me that this will absorb and go away on its own. They said he will likely be sent home with this clot still. It makes me a little uneasy, but I have to trust them.
Gabe's color looks great and he isn't nearly as swollen as he was after the last surgery. His lungs look clear, but his kidneys are feeling the effects of him being a little dry. However, that is also how they keep his lungs dry and free of things like pneumonia. I guess it is a balance and everyone says that things are right on target.
I will post again later. I am going to get ready to the extubation because I have a feeling he won't be super happy when they take the tube out. Until later......
The only problems that he is having right now is the elevated temperature. The doctors are more concerned about it today and may start antibiotics soon, just in case. The other issue is that there is a blood clot behind his atrium. This really concerned me, but a couple doctors and several nurses have assured me that this will absorb and go away on its own. They said he will likely be sent home with this clot still. It makes me a little uneasy, but I have to trust them.
Gabe's color looks great and he isn't nearly as swollen as he was after the last surgery. His lungs look clear, but his kidneys are feeling the effects of him being a little dry. However, that is also how they keep his lungs dry and free of things like pneumonia. I guess it is a balance and everyone says that things are right on target.
I will post again later. I am going to get ready to the extubation because I have a feeling he won't be super happy when they take the tube out. Until later......
Wednesday, January 6, 2010
Day After
I am sorry that I didn't update the post after surgery last night. Things got a little hectic and we thought we were going to see him sooner than we did. Translation......1 hour hospital time = 3 hours real time. Brian and I have found that everything times 3 is the best equation.
The surgery was successful, but long. They took him at 8:00 am and we didn't see him until 10:00 pm. It helped that we had a private waiting room. Brian stayed with him until about 4:00 am, while I came home and got some rest. We are going to be doing this more in shifts. The doctors say that everything is looking good today. There were some problems with a slightly elevated temperature and low blood pressure last night, but those seemed to have stabilized. He had Brian, two nurses, and a nurse practitioner all to himself last night.....how is that for service?!?. We also have a great corner (larger) room with a view. We couldn't be getting better care.
The doctors want to keep him paralyzed and heavily sedated until they extubate, which will likely be tomorrow. So we are enjoying the peace and quiet, because once the sedation wears off......this will be a different story. I will update again tonight or tomorrow morning. Thanks for all the prayers.
The surgery was successful, but long. They took him at 8:00 am and we didn't see him until 10:00 pm. It helped that we had a private waiting room. Brian stayed with him until about 4:00 am, while I came home and got some rest. We are going to be doing this more in shifts. The doctors say that everything is looking good today. There were some problems with a slightly elevated temperature and low blood pressure last night, but those seemed to have stabilized. He had Brian, two nurses, and a nurse practitioner all to himself last night.....how is that for service?!?. We also have a great corner (larger) room with a view. We couldn't be getting better care.
The doctors want to keep him paralyzed and heavily sedated until they extubate, which will likely be tomorrow. So we are enjoying the peace and quiet, because once the sedation wears off......this will be a different story. I will update again tonight or tomorrow morning. Thanks for all the prayers.
Subscribe to:
Posts (Atom)
