Monday, February 22, 2010
Tuesday, February 16, 2010
Monday, February 15, 2010
I am going to use the experience Jack and I had this afternoon as a parallel to my life and… I’ll be the frog. These past two months have been a disaster. I have tried to stay positive but really our life had started to unravel. “Your daughter might die,” they said. One year and five months my husband has been unemployed and sinking each day into a deeper hole of frustration. And like the frog, I am hopping all over the place from one problem to the next. Lately in sheer panic.
First I will expand on Isabelle’s surgery and results from last Tuesday. We headed to Seattle expecting a “routine procedure”. The routine part ended immediately when the anesthesiologist warned me, because of the high pressures in her heart and lungs, putting her under was a huge risk alone. I was so concerned that the thought of grabbing her and running for the door crossed my mind. Then I remembered I’m not in control, God is. She made it though surgery and the six hours of recovery that followed. Laying flat on her back waiting for the artery to “close up” and for her to be able to sit up. As we waited the cardiologist came in with the results. And they found the problem… Heartbreak, as her doctor in Bellingham should have found the “large hole” in the value connecting the right and left side of the heart called the PDA. He should of found it years ago and then we would not be in this position. And we can’t close the hole now because her body has used the hole (that caused the problem in the first place) to keep her alive. To add to the drama, I no sooner had her inside the front door late Tuesday night when Joe noticed blood all over the front of her dress! The artery opened and blood was escaping her like a fountain. 911!!! And must I brag a moment.. the paramedics were completely impressed by the technique I was using to stop the bleeding. Exactly as I was shown hours before. We spend most of that night in the ER. She made it though the entire ordeal.
And from the wisdom from Children’s Hospital we have a plan… Medication, three times a day. We might not see the pressures start to come down for a year! But the meds should cause her to start feeling better, able to do more things like she used to. They might try and close the hole in 3 to 5 years but we will have to wait and see what the medicine and God can do to bring down the high pressures in her heart and lungs. We will be heading to Children’s every three months to check her progress and dosage.
Back to the overall picture... As you can imagine, being unemployed for one year and five months can bring on a multitude of problems with money being the least of our worries. About a month ago I noticed my husband sleeping late and waking grouchy only to find him back in bed in the afternoons. Welcome depression, frustration and an overwhelming desire to leave this “one horse town”. As you can imagine with any man searching day after day, after yet another day for work can really bring out the worst in someone! With no job prospects in sight and many tears latter we decided it would be best if we could spend some time apart, with Joe going to Missouri to look for work and spend time with his mom and other family members, after all the fighting has to stop.
Back to the frog. As I watched it hopping all around while Jack was chasing it, I was reminded once again of me. Sheer panic, I can’t loose my husband, I can’t loose my daughter. Hop, panic, hop, panic. Then these huge hands swooped down and held him snug and secure. He calmed down and just was at rest. And that is exactly how God works. Joe got a job offer yesterday and Isabelle got up at basketball practice and RAN all the way across the court to get a drink of water!!! (after only 15 doses in her cute little body!) So could of our Lord swooped in- in the nick of time and made it all better? It’s possible. My husband will have an office to go to every day, he will I pray be blessed beyond measure in his work. And could God have created such a drug that will save my daughters life? It is more than possible… after all He did create the universe. And so I will rest, fully aware that I am in the father’s hands. And He didn’t forget about us and I will praise him that His hands are so much more gentle and wise than an eight-year-old boy!
So if I may ask for yet another prayer request please pray that all the details will be worked out for Joe to start this job soon. Pray the enemy will be rebuked from our hearts and lives!! Pray that God will bless Joe with success and our family with peace. Pray that the medicine will be effective in Isabelle’s body. I am so thankful for each one of you.
Friday, February 05, 2010
Here is the information we took from yesterday. First, it is overwhelming to try and wrap my head around this complicated issue. She has had tests on top of more tests, and has taken each one like a trooper with few complaints. I am so proud of her. When we got to Children’s the specialist clarified the reason for two of her tests: First blood test indicated liver issues, blood flow problems to the liver, which would cause liver failure. Went right to ultrasound, results came back “Perfect”. No problems with liver.
Rheumatology. The study of disease where the body turns on itself. Again blood tests indicated that she might have problems with something related to these issues. Went right over to Rheumatologist where she did a full body exam looking for visible signs of lupus, arthritis, thyroid issues etc… NO VISIBLE SIGNS or reason for immediate concern. Took more blood and urine tests, waiting for results.
Both above causes can contribute or cause pulmonary hypertension. Two more issues off the list, which still leaves us with…. No answers!
Surgery on Tuesday will tell the doctor what she needs to know to prescribe medication to get the oxygen extended all the way out into the lungs. To open the tubes that are restricted so she can function without overextending her heart.
So waiting again… for the procedure on Tuesday. Then we will have some direction. Planning on starting medication by Wednesday.
We spent a tiny bit discussing the two most dreaded words I can imagine… life expectancy. I barely listen but what is clear is that this is a serious disease and it making her life so much more difficult. After they get in there and see what is going on we will know a lot more about that.I fall back on what I know for sure: God has an amazing plan for Isabelle. He will stand in the gap and bring her out of danger, He has before and He will do it again. I am incredibly grateful for the staff at Childrens, I am, but my faith in God remains the same. He is the ultimate physician and I will continue to ask Him to take care of the gift He gave me so I can be with her for a very long time. Thanks for praying…truly.
Wednesday, February 03, 2010
Thursday February 4th: Arrive at Childrens at 7:15 am, Liver Ultrasound, visit with Pulmonary Hypertension specialist about surgery next Tuesday, echocardiogram, visit with Rheumatologist, blood draw and finally fitting for new ear mold. Bellie, I promise I’ll hold your hand! Thank you everyone for praying, it is appreciate more than I can express in words. We need some answers...