Friday, January 15, 2010
Friday, January 08, 2010
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!
Wednesday, January 06, 2010
Saturday, January 02, 2010
Hello everyone...On Monday 12/28 we got a scary diagnosis from Children's hospital in Seattle concerning Isabelle's heart. Here is an overview of what happened as well as our prayer requests. She is happy at home, laying low with us. We are to keep her away from potential germs and and make sure she does not over exert herself in anyway. Because of that she will not be going back to school. I am really scared and excited at the same time to get back to Children's on Thursday. I will try and keep anything we find out up to date here. I can't thank you enough for all the prayers!
Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be known to God; and the peace of God which surpasses all understanding, will guard your hearts and minds through Christ Jesus. Phil 4:6-7
Written Monday night 12/28:
I am writing this in an email because to be completely honest I am on the verge of a panic attack... I am trying to stop crying. Joe is here and is committed to praying with me and handing me kleenex, so I feel like I have support. Today Isabelle and I went to Children's in Seattle for some "routine" tests on her heart. I will back up just in case you don't have the whole story. In October Isabelle had the swine flu, or the flu, regardless she was really sick. When she didn't fully recover I took her back in for breathing problems. A new nurse practitioner (a Christian) fell in love with her and really spent a lot of time with her. She started treating her for Asthma. When I took her back for a re-check I told the nurse practitioner that the breathing problems were not getting better. She sent us to Children's on a "hunch".
After five hours of tests she has been diagnosed with Pulmonary Hypertension. A very serious heart condition. The pediatric cardiologist entered the room with "I have really bad news" So there is a lot to say that I can't actually say out loud right now. First we will be going through a lot of testing to see WHY SHE HAS IT. The blood pressure inside her heart is almost twice what it should be, her heart is having to work way too hard. There are many, many reasons that can contribute, cause, or make the condition worse. She is on a heart monitor for the next 24 hours (at home) and they will be sending a nurse out to the house to set up oxygen for night time, she will be tested for sleep apnea as well. They took tons of blood today, we will return on the 7th for continued testing.
First Prayer Request: That the specialist at children's will be able to correctly find the cause.
After they find the "why" THEY WILL BE ABLE TO START TO FIGURE OUT HOW TO TREAT IT. There are very few cases that surgery will make a difference. Most cases are treated with a multitude of drugs. Depending on the cause a medicine or medicines with be picked.
Second Prayer Request: Her life expectancy is all dependent on how well her body will respond to the treatment. WE NEED COMPLETE HEALING FOR HER!!!! GOD HAS BEEN 100% FAITHFUL TO HER SO FAR AND I KNOW HE WILL BE AGAIN. I want the doctors to already be amazed when we go back before we even start treatment.
PLEASE PRAY FOR ISABELLE AND THAT WE WILL BE ABLE TO DO EVERYTHING POSSIBLE TO GET THE BEST TREATMENT. PLEASE PRAY FOR ME AS I ADJUST TO THIS NEWS. I KNOW I WILL SETTLE DOWN AND FEEL NORMAL AGAIN BUT RIGHT NOW I AM BUZZING WITH HURT, FEAR, ETC... PRAY FOR PEACE FOR ME, JOE AND THE BOYS AND FOR SEAN.
I love you all, I just can't talk on the phone right now. I am a wreck and I know talking about it, at least for a little while, will just make it worse.
PRAISES!!!! That we ended up at Childrens today. If not, they said she may of not made it six more months untreated.
Childrens hospital has a pulmonary hypertension specialist!!!! A woman who has dedicated her career to only this and she is right in Seattle!
Thank you Jesus for guidance!
Thank you for your beautiful love and friendship and for going to the thrown on Isabelle's behalf!
We love you all!
p.s. Please put Isabelle on every available prayer chain. Jesus is all we need!