Thank your for praying for us, truly it is making a HUGE difference. We made it back from Seattle late this morning. Yesterday was a full day of information and testing but not a whole lot of answers. I had prepared Isabelle for more heart monitoring and echo cardiograms but we were not prepared when they took her back to put in an IV. I am so thankful that Auntie (Christine) was able to come. She was a huge help for convincing Isabelle it had to be done and taking the pressure off of me to “make her”!
We are still in the process of gathering test results from all the tests that have been taken. More tests than I ever thought possible. They have taken enough blood for hundreds of tests, at least that’s how it looks to me! Here is what we know for sure…
-Isasbelle will be having surgery in approximately two weeks. During this surgery the doctor will insert a catheter into an incision in her groin area and threat it up into her heart. There they will test for exact pressures as well as several other tests that will help the specialist determine which medication to start with.
-Isabelle did not have any of the chemical in her system that indicated heart failure. She looks great and is not in a critical situation. She does however have a level of pressures that is on the more serious side.
-Many test results have come back normal, which is great but also a bit frustrating because if we find something we can treat completely that will help to solve the high pressures in her heart. Examples: Sleep apnea, blood clots in her lungs, lung disease. All great things to NOT HAVE but still not showing us why or clues to treatment.
-Her first treatment after surgery might come into her system intravenously. L The medication would have reconstructive properties but she would have to have an IV in at home. Or, the specialist (Dr. Yung) will start her treatment with oral medications.
-There is not a quick fix to this problem. It will be a long haul with many trips to Childrens. This is a problem that we will have to watch carefully for her lifetime. No cure, just treatment. But then we have Jesus so there are no limitations for what can happen!
-We have Childrens and the specialists with all the current and up coming new drugs and facts about Pulmonary Hypertension.
-Her oxygen levels at night are not a huge concern at this point. She is sleeping safely.
-Isabelle gets to return to school as long as we are certain that she will not be in any situations where should could over exert herself.
-We have the most loving awesome family, friends, church family we could ask for!!! WE FEEL YOUR PRAYERS!!!!
-Test results will continue to not reveal serious concerns yet a reason will be found for why the Pulmonary Hypertension exists in her sweet little heart.
-She will remain healthy everyday (free of colds, flu’s, etc…) Especially leading up to surgery and the start of treatment.
-That I will not have a heart attack watching for her to have a heart attack!!! I am already secure in the fact that she is in Gods powerful hands but it is still hard for me to see her struggle and to know her insides are not working right.
-That Isabelle’s body will respond to the medications when we start them.
-God has had His mighty hands on her since the second she was born. He has saved her from many scary moments and I know He has an amazing plan for her life! Pray for the long, long, healthy life He has in store for her!
-Lastly pray for Joe- He is gone (flew out early this morning) to see his mom in Missouri. She is in testing to see if she might have ALS Lou Gearigs and is not well. He is really worried about his mom and Isabelle. It is hard for us to be apart with all this going on. He will return in NINE days!