So it seems as though the events of the past six months are just a blur and thank God for that. Mason's oxygen tubing/tank prompts questions from just about everyone we meet and recanting those events seems surreal. Coming home and leading a "normal" life has made it easier to forget about all those trying times.
We had a wonderful dinner at our home with a couple of good friends this last weekend who just couldn't stop commenting on how good Mason looked. One of them stated she commended me for being so strong in dealing with his constant care. I had to say that we are so fortunate that Mason isn't really much trouble at all. Besides dealing with carting around his oxygen everywhere, making sure he has all his medications wherever we go and the g-tube feeding at night, he is no problem at all. God has blessed us with a happy baby who sleeps the entire night!
The economy has left us with a shortage of construction projects but this can certainly be seen as a blessing as well. By that I mean, I have more time to be with Mason! Attempts at going to the office and trying to deal with paperwork are certainly not on Mason's agenda and since Grandma has been in Deming, Ernie and I have been playing tag team when I really need to get paperwork done. All this makes for some hectic days but we wouldn't trade them for anything.
Twice last week Mason had evidence of central cyanosis-his tongue was extremely blue towards the back. At first I dismissed it due to the fact that I had given him grape juice but we noticed it a second time and were a little alarmed. Of course, this has made us hypervigilant, albeit we are not acting overly concerned. It may sound crazy to some, but we truly have put Mason into the hands of God. We only pray that God will give us the strength to deal with whatever may come our way and continue with our lives with as much normalcy as possible. Our happy family is just chugging along...
Friday, February 27, 2009
Wednesday, February 11, 2009
Cardiology Update
On January 28th Mason, Daddy and I traveled to Albuquerque to visit Dr. Goens, Mason's cardiologist. His 02 level was 85%. This is an improvement to what he had been running and we were glad to hear it! It is funny that the sat monitor will beep/alarm at a set point that most normal people would be in serious trouble! Yet, for Mason 85% is really pretty good. Since we were running late to the appointment we had to call and make arrangements with Dr. Fahl, Pediatric GI, to re-schedule us for a later time. Fortunately, he was glad to make time to see us the same day and told us just to let them know once we got in. Mason's condition sure gets some attention; unfortunately, it's not the kind we would wish on anyone.
After a review of his echo, Dr. Goens commented that it wasn't the best function that she had seen but that it was "fair." This is better than severely dysfunctional, so we will take it. Dr. Fahl suggested that we reduce the amount of calories per ounce of formula for Mason to 24kCal. Other than that, his G-tube site looked great and he praised us on doing such a wonderful job.
Dr. Goens eliminated the Aldactone from his medications which is great since this was causing him extreme gas and nausea. Since we have eliminated it, he has been doing wonderful. She also asked that we keep him on 1/2 litre of oxygen 24/7 until May. This should help heal his heart and get him through any congestion he may get from any viral illnesses. Having to carry around oxygen tanks everywhere we go is a bit inconvenient to say the least. I imagine Mason is a little tired of that tube being in his nose as well.
On antoher minor note, after many complaints/calls/emails to Dr.Etheridge regarding Mason's bowel movements (poop) he agreed to test it. So we collected a sample and got it sent off and low and behold it tested positive for C-diff. It looks like he hasn't gotten over it from being at the hospital. We are treating with Flagyl again and hopefully we can get it taken care of.
His current medications are:
Captopril 3 mls 3 times a day (increased from 2mls)
Reglan .8 ml 3 times a day
Digoxin .6ml 2 times a day (new med)
Lasix .9ml 2 times a day
Omniprozole 3 mls 1 a day
and baby aspirin 1/2 tablet 1 a day
I asked for his Captopril to be flavored and he loves it! It has actually gotten to be a treat for him to take his Captopril/Reglan/Digoxin/Lasix and baby aspirin as they taste great! The next time we get the omniprozole we will have to request flavoring as well. Since everything had been previously going through his G-tube, no one was concerned about taste.
It is probable that the medications have somewhat "masked" his ventricle function but we truly believe that there are forces that are allowing his heart to mend. God has gotten him this far, he can't back away now, we are counting on it.
After a review of his echo, Dr. Goens commented that it wasn't the best function that she had seen but that it was "fair." This is better than severely dysfunctional, so we will take it. Dr. Fahl suggested that we reduce the amount of calories per ounce of formula for Mason to 24kCal. Other than that, his G-tube site looked great and he praised us on doing such a wonderful job.
Dr. Goens eliminated the Aldactone from his medications which is great since this was causing him extreme gas and nausea. Since we have eliminated it, he has been doing wonderful. She also asked that we keep him on 1/2 litre of oxygen 24/7 until May. This should help heal his heart and get him through any congestion he may get from any viral illnesses. Having to carry around oxygen tanks everywhere we go is a bit inconvenient to say the least. I imagine Mason is a little tired of that tube being in his nose as well.
On antoher minor note, after many complaints/calls/emails to Dr.Etheridge regarding Mason's bowel movements (poop) he agreed to test it. So we collected a sample and got it sent off and low and behold it tested positive for C-diff. It looks like he hasn't gotten over it from being at the hospital. We are treating with Flagyl again and hopefully we can get it taken care of.
His current medications are:
Captopril 3 mls 3 times a day (increased from 2mls)
Reglan .8 ml 3 times a day
Digoxin .6ml 2 times a day (new med)
Lasix .9ml 2 times a day
Omniprozole 3 mls 1 a day
and baby aspirin 1/2 tablet 1 a day
I asked for his Captopril to be flavored and he loves it! It has actually gotten to be a treat for him to take his Captopril/Reglan/Digoxin/Lasix and baby aspirin as they taste great! The next time we get the omniprozole we will have to request flavoring as well. Since everything had been previously going through his G-tube, no one was concerned about taste.
It is probable that the medications have somewhat "masked" his ventricle function but we truly believe that there are forces that are allowing his heart to mend. God has gotten him this far, he can't back away now, we are counting on it.
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