We've all had a pretty busy day today. Gavin has been move from PTCU to Moderate Care, it would have been the General floor but there wasn't a bed available.
His liver enzymes continue to drop significantly! Stopped all diuretics. Feeding tube is out. He continues to take the bottle. We will know soon if he is being discharged this weekend. The plan is to have his surgery scheduled for next month. This will allow Gavin to recover as much as possible before he has his heart surgery.
He looks so good compared to the last week. Taking him home is going to be scary but atleast we will all be comfortable.
We will update when we know for sure what is going on.
Friday, May 6, 2011
Thursday, May 5, 2011
May 5th PM Update
Im so sorry I forgot to inform you guys on the liver enzymes earlier.
His AST went from 2283 yesterday to 1359
His ALT went from 3179 yesterday to 2824, docs are pleased with the direction of everything.
He was extubated at 3pm this afternoon and as you can imagine, it was so wonderful to see his beautiful face again. He is breathing beautifully on his own. They have since taken him off his BP meds and Adevan (spelling). He is receiving a steroid to help prevent his throat from swelling due to the intubation so that medicine does increase his BP but not to alarming levels. He was able to drink from the bottle tonight and he was so excited to see a bottle. He took 6 oz like a champ.
Still no date for his surgery as of yet, there is still debate.
We are very happy with the direction things are going. We should be able to hold him tomorrow.
Our church is having their baby dedication ceremony on Mother's Day. We were scheduled for the 9:30 service but due to is stay at the hospital we are going to miss that. However, we were able to work out skypeing the dedication service from his hospital bed for the 3rd service, We are so happy we aren't going to miss this years ceremony.
Hopefully we will have more good news to share with you tomorrow.
His AST went from 2283 yesterday to 1359
His ALT went from 3179 yesterday to 2824, docs are pleased with the direction of everything.
He was extubated at 3pm this afternoon and as you can imagine, it was so wonderful to see his beautiful face again. He is breathing beautifully on his own. They have since taken him off his BP meds and Adevan (spelling). He is receiving a steroid to help prevent his throat from swelling due to the intubation so that medicine does increase his BP but not to alarming levels. He was able to drink from the bottle tonight and he was so excited to see a bottle. He took 6 oz like a champ.
Still no date for his surgery as of yet, there is still debate.
We are very happy with the direction things are going. We should be able to hold him tomorrow.
Our church is having their baby dedication ceremony on Mother's Day. We were scheduled for the 9:30 service but due to is stay at the hospital we are going to miss that. However, we were able to work out skypeing the dedication service from his hospital bed for the 3rd service, We are so happy we aren't going to miss this years ceremony.
Hopefully we will have more good news to share with you tomorrow.
Thursday AM Update
He looks GREAT! His weight is down to 11.6k from his dry weight of 11.4 (25.5lb-25.1lb) so they backed of Lasix(diuretic) from every 6hrs to every 12. They never started the second diuretic.
He is taking 1oz/hr by continueous feed. They will try PO feeding(mouth feeding) after he is extubated, waiting 4 hrs after extubation to feed him, just incase they have to reintubate.
He's been sprinting on the vent this morning and they are going to sprint again at 1pm and if his blood gases are good they will extubate around 3pm. They have to wait 6 hours after his last feed, so they stopped his feed this morning at 9:30am while we were back there.
Decreased his blood pressure med. Miliranone, may remove it after extubation.
White cell count down to 6.4
Abdomen ultrasound later today to check for possible clots, they are always possible after all the internal trama he has experienced.
They will check to see how his blood clotting, he's been given plasma because his blood has been thin.
Removing his adevan after his extubation.
All and all hie looks fantastic! His swelling is down significantly. You can see creases in his eye lids. :)
We are going to have a good day, I can feel it :)
xoxo's
Wednesday, May 4, 2011
Wednesday Night Update
Our little rockstar is practically breathing on his own. He is still vented but during the whining process he has shown great progress, they have turned it down and he is doing well. The plan is to start whining in the early morning hours. Whining consists of turning it all the way down, allowing him to breath on his own for an hour, should he skip a couple of breaths or not respond very well anytime during that hour, the machine will take over or fill in the gaps for him. All goes well, he will be extubated tomorrow, FINGERS CROSSED.
He is moving quite a bit, which is good and scary at the same time. Man oh man we don't need him to knock out the tube. His arms are restrained a little to try to keep that from happening. He responds very well to us when we are talking and touching him, so it's best that we back off a little bit. He just moves to much. A few times we saw him tonight it looked as though he had tears pooling in the corner of his eyes. Ofcourse they were closed but it was so sad. Sometimes he whinces an a tear look alike comes out. They are trying to reasure me that it's not tears but drainage. I sure hope its not, that simply breaks our heart to think of such a thing as him being in pain an not being able to let us know or respond. :( I guess his stats would indicates some discomfort.
Doctors rounds are between 7 and 9am each morning so we will have more updates after them.
Thank you to all of you for your concerns and your prayers!
Please continue to pray for his recovery but also please extend a prayer to all of the children an families in that ward. There is so much hurt and sorrow walking those halls it can be so depressing and it sometimes make us feel guilty for having a happy moment while so many are hurting at that very same moment.
He is moving quite a bit, which is good and scary at the same time. Man oh man we don't need him to knock out the tube. His arms are restrained a little to try to keep that from happening. He responds very well to us when we are talking and touching him, so it's best that we back off a little bit. He just moves to much. A few times we saw him tonight it looked as though he had tears pooling in the corner of his eyes. Ofcourse they were closed but it was so sad. Sometimes he whinces an a tear look alike comes out. They are trying to reasure me that it's not tears but drainage. I sure hope its not, that simply breaks our heart to think of such a thing as him being in pain an not being able to let us know or respond. :( I guess his stats would indicates some discomfort.
Doctors rounds are between 7 and 9am each morning so we will have more updates after them.
Thank you to all of you for your concerns and your prayers!
Please continue to pray for his recovery but also please extend a prayer to all of the children an families in that ward. There is so much hurt and sorrow walking those halls it can be so depressing and it sometimes make us feel guilty for having a happy moment while so many are hurting at that very same moment.
Update 3
Last night was uneventful, nothing scary happened. So as I always say, Uneventful is good!
He still has excess water weight, about 2 lbs more than his dry weight. His eyes are less swollen and his color is much better. He is on Milredone for his blood pressure and to help his right ventricle rest.
Liver enzymes DROPPED! From 4500 to about 2000, int he opposite (and right) direction that the doc anticipated. He is still intubated and will be for a couple of days. They have lowered is sedation because they want him to be a little responsive, but obviously not enough for him to mess with everything. They also want to observe his neurological responses for possible damage, which is always a possibility. They may start weening him from the intubation and start sprinting tomorrow, which mean that for short periods, he will be breathing on his own. little by little. My little chubba wabba may start to eat today too, however through a pump feet/ NG tube. We are taking a teaspoon every hour and slowly increasing it. On Lasix/ diaretic every 6 hours now, they want to get the water off. They are also adding another diuretic for help with the fluid. His lung from yesterday looks good. I guess it has to perk up a bit. They are going to try to clear his lungs of any fluid and keep them clear to prevent pneumonia. White blood count is 7.6, i don't know what that means but I wrote it down so I thought I would type it out for ya.
All and all, today is a day of rest, watching him, allowing is body to heal.
He still has excess water weight, about 2 lbs more than his dry weight. His eyes are less swollen and his color is much better. He is on Milredone for his blood pressure and to help his right ventricle rest.
Liver enzymes DROPPED! From 4500 to about 2000, int he opposite (and right) direction that the doc anticipated. He is still intubated and will be for a couple of days. They have lowered is sedation because they want him to be a little responsive, but obviously not enough for him to mess with everything. They also want to observe his neurological responses for possible damage, which is always a possibility. They may start weening him from the intubation and start sprinting tomorrow, which mean that for short periods, he will be breathing on his own. little by little. My little chubba wabba may start to eat today too, however through a pump feet/ NG tube. We are taking a teaspoon every hour and slowly increasing it. On Lasix/ diaretic every 6 hours now, they want to get the water off. They are also adding another diuretic for help with the fluid. His lung from yesterday looks good. I guess it has to perk up a bit. They are going to try to clear his lungs of any fluid and keep them clear to prevent pneumonia. White blood count is 7.6, i don't know what that means but I wrote it down so I thought I would type it out for ya.
All and all, today is a day of rest, watching him, allowing is body to heal.
Tuesday, May 3, 2011
Update 2 Post Stent
Great News! They tapped into the fluid that was trapped around his lungs and they pulled out 25cc (almost 1 oz) of clear fluid and that was all. The right lung popped up. There is no need for a chest tube!!!!!!! Thank you Jesus! One less thing Gavin has to be put through, less chance of infection. I couldn't be happier.
Our little man is very puffy and is expected to be bigger tomorrow. Discolored and intubated (not breathing for himself), sedated, but no chest tube. :)
There is always a reason to smile!
Our little man is very puffy and is expected to be bigger tomorrow. Discolored and intubated (not breathing for himself), sedated, but no chest tube. :)
There is always a reason to smile!
Update1 Post Cath
He had is his Echo at 2:30 and came out at 5pm. The doctors found that his conduit that was placed last year had split inside, creating a flap that was creating a pseudo aneurysm. The flap was creating pressure and a very tight channel for the blood to flow into the pulmonary artery. They successfully placed a stent pushing the flap back to the wall of the conduit to allow the blood to flow properly and the pressure and stress on the Right Ventricle. The stent also allows the blood to flow through the aneurysm into the conduit if needed. The stent is a very temporary solution to Gavin's heart problem.
Along with his Right Ventricle Heat Failure, he is in Acute Liver Failure, due to his RV not working properly. His liver functions were 4500 last night (normal is 20-40) and are expected to be higher tomorrow just because that's how the liver works.
Having open heart surgery with any heart failure leads to a more difficult recovery. Having open heart surgery while in liver failure is not a good way to go into surgery either. Both of which make for a very difficult recovery.
He currently is intubated from the stent procedure. He will need a chest tube tonight because they found fluid around the lungs, it may be blood so they are taking a sample out to see what they are dealing with. The fluid whatever it may be is causing the right lung to collapse.
If we are talking numbers here. Pressure in the heart after the stent has dropped about 50% estimating, point is they docs are optimistic that the stent is doing what it should. Now we just have to weight for his liver to start acting right. He will be sedated for some time, remaining intubated.
I must say that seeing my little man all hooked up like this brings back so many strong emotions and new emotions too. The best way to describe him is to picture him as he was a newborn all hooked up and picture him 4 times bigger with all the same tubes.
We are asking for prayers that they successfully drain the fluid and that he is not leaking blood into that area. We ask that you pray his liver enzymes take a dramatic drop in numbers and it rebounds beautifully soon!
Also, pray that his right ventricle relaxes and recovers so that it too is strong enough for surgery, when ever that may be. Lastly (well all that I can think of right now) is PRAY that he does not contract ANY infections anywhere in his body! Please that is sooo important.
Along with his Right Ventricle Heat Failure, he is in Acute Liver Failure, due to his RV not working properly. His liver functions were 4500 last night (normal is 20-40) and are expected to be higher tomorrow just because that's how the liver works.
Having open heart surgery with any heart failure leads to a more difficult recovery. Having open heart surgery while in liver failure is not a good way to go into surgery either. Both of which make for a very difficult recovery.
He currently is intubated from the stent procedure. He will need a chest tube tonight because they found fluid around the lungs, it may be blood so they are taking a sample out to see what they are dealing with. The fluid whatever it may be is causing the right lung to collapse.
If we are talking numbers here. Pressure in the heart after the stent has dropped about 50% estimating, point is they docs are optimistic that the stent is doing what it should. Now we just have to weight for his liver to start acting right. He will be sedated for some time, remaining intubated.
I must say that seeing my little man all hooked up like this brings back so many strong emotions and new emotions too. The best way to describe him is to picture him as he was a newborn all hooked up and picture him 4 times bigger with all the same tubes.
We are asking for prayers that they successfully drain the fluid and that he is not leaking blood into that area. We ask that you pray his liver enzymes take a dramatic drop in numbers and it rebounds beautifully soon!
Also, pray that his right ventricle relaxes and recovers so that it too is strong enough for surgery, when ever that may be. Lastly (well all that I can think of right now) is PRAY that he does not contract ANY infections anywhere in his body! Please that is sooo important.
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