Before the move could take place, Aaron developed high blood pressure. When it went up to 180/110, they gave him medication in his IV, to bring it down. They assured me this would not interfere with the move, as they were quite capable of handling high blood pressure in the cardiac unit.
The move brought good changes in the accomadtions for me. I now had a private bathroom, and did not need to use the one in the hallway. I had a shower, and did not need to go to the third floor to the Parent Resource Center. There was also a washer and dryer on the unit.
A lady came by to bring things to keep Aaron entertained. She brought in a Play Station unit, and games, as well as some Lego kits. Aaron was feeling much perkier, esp. with the chance to play video games.
The cardiologist, who specializes in the electrophysiology of the heart, came in to see Aaron. He said he wanted Aaron out of bed and sitting in a chair. He did not want him to develope an atelectasis from laying in bed.
Right after the cardiologist left the room, the physical therapist came in, and declared she did not want him out of bed. She was not comfortable with the dizziness he was experiencing. Very frustrating!
Aaron continued to use the potty chair, but was in the bed the rest of the day. His eating was still going rough. He continued to have pain when he would eat, and then he would vomit. The infectious disease doctor came in and said he would order something for his tummy.
Yet, hours later, we still did not see anything ordered. When I went to the nurses desk and asked the nurse practitioner, she got defensive, and said she had not heard any complaints of belly pain before. I walked away, rather than get into an argument with her.
The cardiologist came into the room to discuss the misunderstanding. I told him I was frustrated because one person will tell us one thing, and the next will say something completely different. Everyone seemed to agree that Aaron's poor oral intake was slowing his recovery, yet no one would address the reason why his intake was poor. If a child has pain and vomitting when they eat, they will not want to eat.
The cardiologist came up with a plan. He wanted Aaron to try to eat, when the pain started, he was to be given some Mylanta. If that took care of the pain, then he felt certain it was erosion of the esophagus, due to the vomitting and the NG tube. At this point, he would order Carafate to coat and heal the esophagus. It worked well. Now he could begin to eat and get his strength back.
In the process of our descussion regarding Aaron's struggle with food, the cardiologist informed us that the cardiac arrest was, in his opinion, related to the anesthesia, Propofal, they had given him in the PICU! Unbelievable! When I told him I had asked if that had been the cause, they denied it, said it would have happened right away, not 15 minutes after it was started. The cardiologist explained that in certain types of cardiac rhythms, propofal can cause cardiac arrest, asystole. It is incredibly rare, less than 1 in 100,000. So rare, it is not taught to anesthesiolgists, or even to cardiologists. Usually, it is only electrophysiologists, like himself, who know about this.
I was stunned, to say the least! The cardiologist told us that when the Lyme tests came back, he would be able to tell us more. If they were negative, he would lean more toward the Propofal as the cause for the cardiac arrest.
Tuesday morning, the Lyme tests came back negative. We still had no answers as to why our son had gone into renal failure. We had a possible reason as to they the cardiac arrest, even though that was not a definate, just a possibility. The cardiologist ordered a consult with a diagnostic specialist, sort of their version of Dr. House. He was very nice, though.
The diagnostic specialist could not give us any definate answers either. He visited with Aaron twice on Tuesday, looked over the tests, ect. yet could not say for certain what had caused Aaron to be so sick. With Lyme being lower on the probable list, (it still could be a possiblity, and will be retested soon), he was thinking toward toxins.
After such a stress-filled day, I needed out of there. I started walking, and did not stop til I was outside, sitting on the far side of the hospital, leaning up against a huge boulder, and crying. I could not deal with the roller coaster any more. The not knowing what had almost taken the life of our son! I sat there for a long time. If the cardiac arrest was caused by the anesthesia, how could I ever go through another one of our children needing anethesia? how was I going to ever let Dr. McManaway do another exam under anesthesia on Josh? what about when Josh needed surgery for gluacoma in the future? This was affecting the future medical care of all my children!
When I went back in, Gene informed me the cardiologist had been in. He was doing a cardiac cath with EP studies on Aaron the next morning! My fears of anesthesia were going to be faced sooner, as opposed to later!!
It was a very sleepless night for me. During the night, Aaron was referring to himself as "he" and "him", instead of "I" and "me". I felt very disheartened, not only was he going to have to risk anesthesia again, he was showing signs of brain damage!
The next morning, the anesthesiologist came in to explain what he was going to do. I told him "no" he could not use Propofal! He needed to use another medication! I was so distressed, I could not sign the consent forms. When the cardiologist came in, he said they would NOT be using Propofal. But...he wanted to give him a very small dose of it, to see if he had any reaction. He assued me Aaron was going to perfectly safe, nothing bad was would happen to him. (Hmmm, seems I heard that before, on the ride to duPont Hospital!) Another consent form I could not sign. Gene signed the consents, the first he ever has done that with any of our children.
The cardiac cath went well. The cardiologist said had he not known Aaron had been in cardiac arrest 1 week prior, he would not have been able to tell by the look and function of his heart. Praise God!!
After the anguish of the cardiac cath, I was glad we had gone ahead with it. Now I could rest assured Aaron's heart was fine. What a relief!
Rudolph! Can you tell Aaron is feeling better in this picture?
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