Kelly asked me this afternoon if I would jump on the computer and give a quick update as to what the latest is... After 15 minutes trying to remember how to post I am finally starting to write. That what I get I guess?!?
Anyway no major informative news today really. Kelly saw the doctors early this morning and was given the same general initial 7am report that they were continuing to watch her levels and were looking for signs that the viagra was doing what they had hoped. Kelly informed them that Kathryn began her pattern of desats during the night last night and that it was concerning to us that now at 3.5ml of viagra and 2L of oxygen that she was starting to show signs of repeat again. The basic response was the we should probably expect for a while that she will do it off and on until she can get past it, and that as long as the episodes were not too frequent or long in duration that it was not something that we should worry about. Unfortunately for us right now, not being concerned is easier said than done since this pattern is exactly why we have spent almost 6 of the past 9 weeks at Childrens Hospital.
Later this morning Dr. Rowe came to speak to Kelly and reitterated the same basic report with respect to not worrying about the pattern repeating. He noted that yesterday's experiment with feeding every 3 hours was not a success and that he was in ageement with our executive decision as parents to go back to 4 hour intervals and just see if she can take 3-3.5 oz per feed. Dr. Rowe also mentioned that he and Dr. Lazano had consulted yesterday and would like to continue to hold off on cardiac catheter and biopsy procedures for a little while longer. His reasoning behind holding off was that he wanted to add another dose of viagra so that she is getting it 4 times per day. If that seems to help then the plan is to watch for a few more days and then revisit any thoughts on invasive stuff. While I guess this is semi-good news he did drop a mini-bomb on Kelly which is planned for tomorrow...
They plan to perform a "Sweat test" sometime tomorrow morning to test for Cystic Fibrosis. Based on what Kelly told me over the phone it sounds like more of a "lets just rule this out" more than something that they truly feel she has. Nevertheless, I know that it took me a few minutes of web surfing for CF symptoms and causes to settle down about the mere mention that they wanted to test for it. To my surprise I was actually somewhat relieved in what I read related to CF and the advances in care, treatment, and the fact that of all the places we could live Birmingham has one of the best CF treatment centers in the nation at Childrens Hospital. I never really knew that it was a genetic disorder, and that for a person to have the possibility to have it, both parents must have the gene. Even then there is only a 25% chance that they will have a positive test. As you can imagine, Kelly and I both have talked with our families today and we are relatively sure that no one that we are aware of has ever been diagnosed with CF or has been a carrier of the gene. While that doesn't exactly mean that we are positive that tomorrow will result in a negative test, it is something that we feel pretty confident in today. We also think that while Kelly was in the hospital before Kathryn was born that they ran some tests and determined that Kelly was not a carrier, which would again suggest that tomorrow is just a exercise to rule out the possibility for sure. I guess in the end if they do find that she has CF then we will at least know what to deal with... I am sure that is an odd thing for a dad to say given the serious nature of the disease, but at this point we would really like to start getting some more definitive test results so that the doctors can better plan a specific course of action.
We also got a visit from the ENT resident who looked Kathryn's ears again and was able to determine that she still has fluid present. As a result she said that we will most definitely need to have tubes. They have recommended that we keep the appointment next week at Children's South because unless we are sure that Kathryn will be in the hospital for a while they prefer to see the children in office prior to scheduling the procedure. All in all we kind of expected that this would be something that would be needed at some point. For those of you that know my dad (aka grandad) and his lifelong history of ear-related issues and procedures, my children are destined to need tubes at some point in their lives.
I guess that is the major updates from today. We will update tomorrow on the results of the tests and let you know if we are adding in more viagra yet again...
Finally we got an email from a friend tonight at home that was particularly timely and I thought that I would cut and paste to share with everyone. Thanks to Lurenda for passing this along to us and being a friend and support to us!
"He will sit as a refiner and purifier of silver."
This verse puzzled some women in a Bible study and they wondered what this statement meant about the character and nature of God. One of the women offered to find out the process of refining silver and get back to the group at their next Bible Study. That week, the woman called a silversmith and made an appointment to watch him at work. She didn't mention anything about the reason for her interest beyond her curiosity about the process of refining Silver. As she watched the silversmith, he held a piece of silver over the fire and let it heat up. He explained that in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest as to burn away all the impurities. The woman thought about God holding us in such a hot spot; then she thought again about the verse that says: "He sits as a refiner and purifier of silver." She asked the silversmith if it was true that he had to sit there in front of the fire the whole time the silver was being refined. The man answered that yes, he not only had to sit there holding the silver, but he had to keep his eyes on the silver the entire time it was in the fire. If the silver was left a moment too long in the flames, it would be destroyed. The woman was silent for a moment. Then she asked the silversmith, "How do you know when the silver is fully refined?" He smiled at her and answered, "Oh, that's easy -- when I see my image in it." If today you are feeling the heat of the fire, remember that God has his eye on you and will keep watching you until He sees His image in you.