Today little Mason had a second swallow study to determine the amount of aspiration he was experiencing. Again, with the unthickened barium liquid he silently aspirated a small amount of fluids in his lungs. Meaning he didn't even cough when it went into his lungs. The danger of this is an extremely hightened risk for pneumonia. The second try was with thickened liquid. This resulted in no aspiration. He was quite hungry, as his 11:00 feed was withheld for the 1:00 testing. There was an improvement over his last swallow study in that very little of the unthickened liquid was aspirated. It appears his vocal cord paralysis/damage is improving.
We have finally, oficially committed to going through with the g-tube surgery. This after several crazy events. This past Saturday, one of the nurse practioners came in and said she would be having surgery come in to have me sign a consent form for the g-tube/nissen surgery. I was certainly taken aback since at no time what we had agreed to. I made it clear we were not on board with doing the nissen/g-tube and that no one had said this was the "plan." She said she would go back to the team and clear up any miscommunication. Shortly thereafter she came back in and said that the team was on board with our decision. On board-that's the term we see hear alot. The next morning Dr. Bernstein came in and said everyone was in agreement and we would proceed with the g-tube only and medication management of the reflux. At this point Mason was taking Previcid and Zantac for the reflux and it has made a tremendous amount of difference-no more puking up all his feeds. At the present, we have weaned him off the Zantac and he is on the Previcid and Regalan. The Regalan has in fact caused some amount of tremors in his legs and arms but at this point the benefits outweigh the side effects. His dosage has moved, 2 times every 6 hours to 2 times every 8 hours, in the hopes of lessening the tremors. Dr. Bernstein made a comment during rounds that had me question what the was talking about. He said he learned something new-we would just proceed with the g-tube. I asked the NP what she thought he was talking about when he said he learned something new. She guessed that it was because the g-tube/nissen was usually performed together-not done one without the other. She said they had to consider the decision thoughtfully because if they had to later to the nissen, it could be viewed as a medical mistake. I don't know exactly what to think. Is this reasoning proper? Do they always just do the two surgeries together whether or not the patient truly needs them just to cover themselves? One of the nurses told me she thought 80% of the patients/families that arrive here never question the decisions by the team. I don't know if we are doing the right thing, but I feel in my heart that it will all work out for the best. I'll leave it up to God.
During my pregnancy I often found myself praying to God and "giving" our baby to God. I always had to correct myself though. I realized that I had to thank God for allowing us to have this little one in our lives.
We have been through a series of "neighbors" lately. I don't recall if I have posted this but here goes. Our teenage neighbor, Tonee, had to go back down to the PICU kicking and screaming. Apparently she was having arythmias-dangerous for her condition and she really didn't want to go back down. That was Saturday night. That morning we got a new neighbor from 5:00am to about 9:00am. She had a series of operations on her heart beginning when she was 2 days old. She is now 17 and enjoys playing golf. She was here for a catherization and will undergo another heart surgery in about 1 month. We enjoyed a quiet room for a few hours but then got another neighbor last night who was to receive a lung transplant. Apparently they drove 5 hours to get here, only to be told about 1 hour after arriving that the lungs were not viable for transplant. Another teenager, she and her family left this morning after being majorly disappointed. Shortly after a baby girl arrived who had just had her Glenn. They are a family from Albuquerque and they hope to leave by the end of the week. This baby has reflux problems as well and promptly threw up her feed. Seems to be a reocurring theme with these heart babies-the reflux that is. Someone told me that perhaps because their hearts are enlarged they might take up more room and therefore cause more problems with reflux.
Little Mason had to be hooked up in the middle of the night for a possible heart arrymthia himself. Rick, our wonderful night nurse, saw a change in his heart beat and called in the cardiac surgeon on duty. They scheduled a 12 lead EKG, which he slept through. This even after they had to reposition his leads for about 30 minutes before getting an appropriate reading. I even had to stand on a chair and lean over the bed to make sure his hands didn't pull something off. This wasn't a problem though-he barely moved. He just grunted to let us know we were bothering him! All went well-nothing to worry about. It was all probably just a problem with the leads moving-the leads he has continually hooked up to him 24/7. These are for heart beat, respiration and oxygen levels. Good news overall.
During the night, Mason takes his feeds entirely by ng tube. He typically doesn't stir much and sleeps pretty much all night-what a blessing. I stay in the room but don't even have to do anyting-the nurses take care of him all night. It sure is going to be different going home.
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