Tuesday was a hell of a trip. Not only had Parker's lip gotten worse, but now we were really worried. This would result in the morning being spent going from pillar to post to see doctors and get medicine.
So we begin at the beginning. We got up at 6 a.m. as normal and went to check on Pud. Needless to say the lip was swollen. I gave him two benedryal to help with the swelling, with the side effect of making him sleeping. Susan and I decided to skip the saline and pulmozyne treatment until we figured out what was causing the swelling. So vesting it was and that was easy. From there we went to the one minute clinic at CVS. Since they do not open until 8:30 we called Ally at CF clinic. She supported the minute clinic and we were told to call and get the results. We waited in line until after 9 for the minute clinic. When it became our turn, they side there was nothing they could do, and they waved the fee, and sent us to the medical clinic on bee caves.
Off we went to the clinic. On the way I talked with both Susan and Ally to bring them up to date on our status and our next steps. When we got there we checked in. Of course I had to fill out 100 sheets of paper to get him in to see the nurse, then PA, then doctor. His CF always presents a issue for most folks. What I loved about the entire conversation is the PA was unfamiliar with his CF, and did not have the courage to admit she did not know. I had to push to see the doctor, who actually looked up the data about Pulmozyne and verified that there would be no issue with the augmentem. While I want my doctor to be sure, I do wish he would ask questions when he does not know something. I see this in my job quite a bit, but I notice it more and more in the medical field. I have always had a great deal of respect for doctors, and I still do, but the arrogance is almost stupifying. My need to educate myself in dealing with Parkers CF has made me much suspect of doctors and their all encompassing knowledge. I am driven by passion to learn about Parkers needs, while a doctor has to deal with the entire range of the human condition. How can they know everything about my son's issues?
So we left the place, in the middle of the first rain storm in 2 years, to head to Tarrytown Pharmacy and fill the prescription. We drove in the rain, talking about nothing much. When we got to the pharmacy there was a slight rain. We left and went to the Randall's to pick up a few things. In the 10 minutes we were in the store, we walked out and holy moley!!! It was pouring down rain. Parker and I both got drenched running from the store to the car to the Pharmacy to get his prescription. By the time we got home after this we were both soaking wet and it was only 11:30 a.m. WOW! I would spend the rest of the afternoon with a careful eye on the boy while he adjusted to the benedryal and we worked on reducing the swelling. This involved him sleeping and playing on his computer. That is going to have to change soon, I need him outside!
In the meantime, Marietta had headed off to school, and Susan to the hospital to sit with her dad. He is doing better, and has finally sat up on his own, more or less, but I want him up and walking. He needs to get moving, or I fear the worse.
She spent from 10 to 3 at the hospital! She is exhausting herself with worry and care. Even her mother is there less. I can tell she is worried and I am now worried about her. She is running the ragged edge and she is the only person who knows where everything in the house is located. I am at a loss to find things most times as a result.
Tuesday night Marietta and I went to see Dale at the hospital. He is still being a bit morose, but he is more awake and less scattered. He misses a lot of conversation from his hearing and that causes him to get upset and angry. I was a bit worried about his confusion on the nurses name, but cannot fix that.
We came home and watched Glee, surprise, and then off to bed. It had been a crazy day. and that is my life so far.
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