I have been sitting with Jake. He looks so great compared to what he looked like after the Norwood. We are having some issues managing his pain. He woke up twice right after surgery and was in a lot of pain and crying. It was unbelievably sad but I was glad I was there to hold his hand. They just increased his pain meds.
He is doing well off of the vent. Has a small amount of oxygen through the nasal canula to help him out. Not much draining out of the chest tube and he is peeing a lot which is great! Blood gasses look perfect and his blood pressure is much better. They already stopped the dopamine. He is still on Milranone (I know my spelling is way off on these).
I will update later with pictures.
Love,
The Bakers
Thursday, August 5, 2010
Jacob is out of surgery
Just met with Dr. Spray. Everything is good. He tried to get the rest of the septum but was unable to get anymore cut out and a hole was punctured through the back of his heart. He said he was able to stitch it up and there is no bleeding. He said that should not affect his recovery. He had warned us that it could happen. He said the opening is plenty big and he is not concerned about it. They almost did not need any RA lines however his pressures dropped a bit so they put one in to administer Dopamine.
They already have him off of the vent. They are waiting right now and watching him to see if he will be ok off of it.
We have not seen him yet but should be allowed back soon.
Thank you for the prayers. Please continue to pray for a smooth recovery.
Thank you!
They already have him off of the vent. They are waiting right now and watching him to see if he will be ok off of it.
We have not seen him yet but should be allowed back soon.
Thank you for the prayers. Please continue to pray for a smooth recovery.
Thank you!
So far so good
Just got our first update. To our surprise they were already finishing up the repair! Jake is doing very well so far. Please keep the prayers coming, they are working!
Jacob is now in surgery
We met with Dr. Spray he was very positive. He said that the odds of not making it through this surgery are very low. He was very please with Jacob's weight gain. He said he breathes a sigh of relief when we get to this point because the highest risk is the first surgery and the waiting period between the two.
Dr. Spray did mention there was talk of doing a lung biopsy but he does not feel it is necessary. He believes like the other doctors believe that his breathing will get better with time. He said if there is a piece of lung that is hanging out and easy to get he will but otherwise he is not doing it.
He also was not concerned about the atrial septum. He said that he thinks he got all that he could the first time. He said its a small area and when you have an intact septum like Jake with a stint in the heart then it is even harder. He said his pressures were all very good and the cath was reassuring.
The surgery should take 2 to 3 hours. I will update in a hour or so.
Please continue to pray for my sweet boy.
Love,
The Bakers
Dr. Spray did mention there was talk of doing a lung biopsy but he does not feel it is necessary. He believes like the other doctors believe that his breathing will get better with time. He said if there is a piece of lung that is hanging out and easy to get he will but otherwise he is not doing it.
He also was not concerned about the atrial septum. He said that he thinks he got all that he could the first time. He said its a small area and when you have an intact septum like Jake with a stint in the heart then it is even harder. He said his pressures were all very good and the cath was reassuring.
The surgery should take 2 to 3 hours. I will update in a hour or so.
Please continue to pray for my sweet boy.
Love,
The Bakers
Tuesday, August 3, 2010
Jacob is such a trooper. He proves to me time and time again how tough he is. He did so well in recovery. He was a bit confused and fussy when he first woke up but it was not more than a few minutes. He slept quite a bit and we were out of there and back at Ronald by 5pm. He has acted completely normal all night. You would never know that he had gone through anything today.
After my last blog entry I spoke with Jacob's cardiologist at CHOP. She gave me more information about the atrial septum.
She said that the tissue in his atrial septum has always been there. Dr. Spray got what he could but that angle can be difficult. She did not seem concerned but said that she would talk to Dr. Spray and see what he wanted to do. She was happy with the heart function and said the pulmonary vasculature was fine.
We spoke to Dr. Spray's PA and she said that Dr. Spray is going to go in there and take the atrial septum out. It is somewhat restricted. This kills me because that was such a major issue when he was born and I thought that it was done reaking havok. So it will be removed again and I am praying it will not become a problem in the future. She said that it is no big deal, he does this during the Glenn in a lot of cases and it should not affect his recovery. It will also only add about 10 or 20 minutes to the whole process.
She explained to us that these babies tend to get a hemi-head after the Glenn. Basically they get swollen from the nipples up and they turn blue at first also. This may last a couple of days or he may have some up until his fontan but it usually goes away. Their blood is re-routed directly to their lungs so the lungs need to adjust to the extra pressure. This is also why they get post Glenn headaches. Generally the kids do really well after the surgery.
Surgery has been post-poned until Thursday now. Dr. Spray had an emergency Heart/Lung Transplant come up so he won't be able to do it tomorrow. I am actually really glad about this because now Jake has a day to rest before going into surgery. So we are back at Ronald and will return on Thursday morning. I should get a time tomorrow night.
Jake has been having some brady episodes tonight where his heartrate drops and occasionally a desat but I am monitoring him and he seems completely fine. He was even smiling tonight.
I will update again all day on Thursday. Thank you for the continued prayers. Please keep them coming as his Glenn will be a little more complicated now. We are glad they did the cath however because now they know to take it out while they already have him opened up instead of it becoming a problem and needing an extra operation.
Heart Hugs.
After my last blog entry I spoke with Jacob's cardiologist at CHOP. She gave me more information about the atrial septum.
She said that the tissue in his atrial septum has always been there. Dr. Spray got what he could but that angle can be difficult. She did not seem concerned but said that she would talk to Dr. Spray and see what he wanted to do. She was happy with the heart function and said the pulmonary vasculature was fine.
We spoke to Dr. Spray's PA and she said that Dr. Spray is going to go in there and take the atrial septum out. It is somewhat restricted. This kills me because that was such a major issue when he was born and I thought that it was done reaking havok. So it will be removed again and I am praying it will not become a problem in the future. She said that it is no big deal, he does this during the Glenn in a lot of cases and it should not affect his recovery. It will also only add about 10 or 20 minutes to the whole process.
She explained to us that these babies tend to get a hemi-head after the Glenn. Basically they get swollen from the nipples up and they turn blue at first also. This may last a couple of days or he may have some up until his fontan but it usually goes away. Their blood is re-routed directly to their lungs so the lungs need to adjust to the extra pressure. This is also why they get post Glenn headaches. Generally the kids do really well after the surgery.
Surgery has been post-poned until Thursday now. Dr. Spray had an emergency Heart/Lung Transplant come up so he won't be able to do it tomorrow. I am actually really glad about this because now Jake has a day to rest before going into surgery. So we are back at Ronald and will return on Thursday morning. I should get a time tomorrow night.
Jake has been having some brady episodes tonight where his heartrate drops and occasionally a desat but I am monitoring him and he seems completely fine. He was even smiling tonight.
I will update again all day on Thursday. Thank you for the continued prayers. Please keep them coming as his Glenn will be a little more complicated now. We are glad they did the cath however because now they know to take it out while they already have him opened up instead of it becoming a problem and needing an extra operation.
Heart Hugs.
Cath is Over
Jake is out of the cath. Everything went well during the cath. Dr. Gillespie showed us pictures of what they did and of Jacob's heart.
Atrial Septum- Take 2:
They are concerned that the atrial septum growing back. They see some signs that it may be and it would be very risky if it does. They don't see this often however when they do it is on kids who have had a problem with the atrial septum previously. Jake is known for his extra tissue growing in his heart and for problems with his atrial septum. That is what caused the flooding in his lungs at birth. They said that they wouldn't do anything about it at this point if he were not going into surgery tomorrow. It is less dangerous to go in now than it would be to leave it there and possibly have to open him up again soon after this surgery.
What this means for Jake:
The Glenn is normally a very quick surgery and they don't have to cut into the heart. Now they will have to cut into the heart to see what is going on. This will make the surgery a little more risky and he will be in there longer. If there is extra tissue growing then Dr. Spray will remove it at that time.
Again, they are not overly concerned but it is in Jake's best interest to take care of this now while they already have him opened up. Please pray for Jake tomorrow and for his doctors. Please pray that this doesn't make his recovery more difficult. And please pray that this Atrial Septum goes away for good!
Atrial Septum- Take 2:
They are concerned that the atrial septum growing back. They see some signs that it may be and it would be very risky if it does. They don't see this often however when they do it is on kids who have had a problem with the atrial septum previously. Jake is known for his extra tissue growing in his heart and for problems with his atrial septum. That is what caused the flooding in his lungs at birth. They said that they wouldn't do anything about it at this point if he were not going into surgery tomorrow. It is less dangerous to go in now than it would be to leave it there and possibly have to open him up again soon after this surgery.
What this means for Jake:
The Glenn is normally a very quick surgery and they don't have to cut into the heart. Now they will have to cut into the heart to see what is going on. This will make the surgery a little more risky and he will be in there longer. If there is extra tissue growing then Dr. Spray will remove it at that time.
Again, they are not overly concerned but it is in Jake's best interest to take care of this now while they already have him opened up. Please pray for Jake tomorrow and for his doctors. Please pray that this doesn't make his recovery more difficult. And please pray that this Atrial Septum goes away for good!
12pm update
They have him under anethesia and are already in exploring around in Jake's heart. So far so good.
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