Sorry for the wordiness today. I know it is suppose to be Wordless Wednesday, but no matter how hard I tried I could not say all of this with one picture.
Yesterday Nathan had a visit at the CF Clinic. The hour long trip to the hospital was fairly uneventful. When I say uneventful I mean the usual lane closures on the highway, decision to take alternate route, the GPS refusing to locate a satellite, all while enjoying the sound of a screaming child in the backseat. I was just happy that the parking lot was not full when we arrived to the hospital ten minutes late.
At eleven months and a little over one week, his growth statistics are as follows:
His weight was 20 pounds 15 1/2 ounces. He still grew but Dr. A was not satisfied with the amount. This is where the changes come into play.
He measured 29 3/4 inches while standing. If you look at the chart below, his previous length was 31 inches. How did he shrink? The previous measurement was taken by a nurse at one of his visits to the pediatrician. I'm attributing the shrinkage to the difference in measurement techniques. Now that he is standing, I think the CF clinic's measurement is more accurate. I think I can technically say 29 3/4 inches is his height rather than his length.
Dr. A made some changes to his diet. Based on his current weight, Nathan can have a maximum of 18 Creon 6 (new name, same stuff as Creon 5) Enzyme Capsules per day. I had been giving Nathan 2 enzymes for every 6 ounce bottle and 3 enzymes for every 8 ounce bottle. Dr. A would like me to change this to 2 1/2 enzymes for every 6 ounce bottle and 3 - 3 1/2 enzymes for every 8 ounce bottle.
1/2 enzymes? Yes, it is a pain in the butt but I have already done this in the past at times. Now need to open the enzyme capsules and dump half of the contents onto applesauce and save half for later. To make life easier my husband and I usually split them and divide them in halves in advance using the empties.
I know the enzymes are best stored at room temperature and exposing them to heat will deactivate the contents. I had gone to the opposite extreme once the heat hit and threw my supply in the refrigerator. Anyone know the effect colder temperatures would have on the enzymes? I know moisture is no good for the enzymes but all the bottles are sealed. I may give Solvay Pharmaceuticals a call today to see if I destroyed our supply of Creon.
I actually decided to call Solvay while writing this post since I knew I would be placed on hold. The pharmacist is checking the stability studies for Creon 5 at this very moment. And I am now off the phone. Apparently the information about refrigeration should have been removed from the label. It just says protect from heat and moisture. If any of the bottles are open I will discard of them otherwise I will continue to use them store at room temperature in the future.
Moving right along. The social worker assisted me in the financial department by letting me know what funds and programs are available. I was particularly upset that the Wee Care Program that was supposed to supply Nathan's enzymes and vitamins until the age of two is no longer in effect. This program is now Solvay Cares and is available to CFer's of all ages for a twelve month time period, I believe. I will be calling Solvay Cares shortly for the new program information.
Lastly, the respiratory therapist who I had to hunt down because Nathan was screaming for the food I would not give him until after his sputum culture. No need for vomiting entire meal after having a swab shoved down your throat, right? No results this morning. Dr. A will call with the results to of yesterday's sputum culture to see if the pseudomonas has returned. I would like to say that I am optimistic but I am not. I am anticipating the culture to grow pseudomonas and will be prepared to begin Tobi by the end of this week.
I expressed my nebulizer and compressor frustrations, remember here and here. The compressor works fine although it would have been nice not to have to pay $80 out of pocket when the company that provided me with the original compressor should have replaced it under warranty. But being that the respiratory therapist was not in the office last week and I needed a compressor asap I needed to pay up. She replaced the compressor so now I have a back up.
The nebulizer cups that the medical supply company delivered may as well be garbage because I cannot disinfect them properly. They call for soaking in vinegar rather than boiling. Sayonara nebulizer cups, no need for unnecessary exposure to bacteria for my little boy!