Monday, September 28, 2009

Lets Play Catch Up

So much has happened since I last updated.
Dan had an Echocardiogram through his primary care doctors It was on friday 9/11. So we didn't find out anything about it right away but the tuesday after, his doctors office called and said he was in early congestive heart failure. So obviously we freaked out and an appointment was made to see the cardiologist on the following friday. We find out thursday night that the nephrologist has a opening and we can also see him on friday. We go to the cardiologist first who gives us the news that he isn't in CHF however he does have Left ventricular hypertrophy, which is thickening of the Left ventricle due to his chronic high blood pressure. We were relieved that he wasn't in CHF but frusterated that someone told us that in the first place. The cardiologist ordered an arteriogram and possible angioplasty for the next thursday. We went to the nephrologist that afternoon and he agreed with the cardiologists decision. I loved the nephrologist. He was a very good doctor. We then went on a date to build-a-bear, silly I know but we had a fun, care-free time.
So thursday 9/24 was the big day for the arteriogram. I had to work Wednesday night but luckily someone came in at 1 for me so I could get some sleep before a very long day. He had the arteriogram which did show narrowing of his L renal artery. It is narrowed after it branches. The arteriogram and angioplasty went well and for the most part were pretty uneventful. (Dan would disagree, they had to balloon his artery 5 times and it is very painful.) However the artery opened and he had no complications. He had his femoral cath removed that evening and got to eat and get some pain meds.
The next morning Dr. Patel the cardiologist came in and gave us the diagonsis of Fibromuscular dysplasia. It means fibrin grows in the arteries instead of muscle in some places causing the artery to resemble beads/a string of pearls. So instead of being like a straw it pinces off in multiple places like a string of pearls would. It is a very rare disease that mostly affects women. Something like 80% of the time the disease is diagnosed in an autopsy. (very sobering statistic) So the plan is frequent check ups to make sure the artery remains opened, possible angioplasties, and a possible stent/although the cardiologsit said because of were the blockage is (after the artery branches) a stent isn't a great option. However at least we have a diagnosis and plan of care. I loved Dr. Patel too. He came in and just gave us a ton of information and was very good. He also said he would consult some docs with more experience in FMD to see what they thought of Dan's case.
He has been sore from the angioplasty but overall was doing well. Until tonight.... He was making dinner and grease from the frying pan splashed into his eye. So just over 48 hours after leaving the hospital from his angioplasty he went back to the ER for his eye. He has two burned spots on his face and a burned cornea. Very painful. (We are starting to feel like JOB) I had to work tonight so Dionne met us at the ER and is staying with him tonight. He has to take eye drops every two hours and is still in a lot of pain. I am trying to encourage him. I know he is feeling very discouraged. He is such a great man and works so hard, and all of this is just a lot to handle. It seems when we get a grasp on what is going on something else happens. He has to follow up with an opthimologist which is just another thing to add to his already full schedule.

We will continue to trust God. We are obviously in a time of trial and we will stay strong and praise God for all he has given us and what a merciful God he is.
Please pray that our spirits would not be discouraged.

Monday, September 14, 2009

Have no other Gods before me.

It has been a long week. I am tired and emotionally tired with all that is going on in our little family. All week I have been praying that God take care of/heal Dan. That his BP would go back to normal. I have been feeling alone in dealing with all this, not because people haven't called, just cause how to do you explain that you fears to people? I want my husband to live a healthy long life with me. I want my kids to know their father. I know what high blood pressure, especially extremely high BP does do your body and life span. So last night at church during worship I was "dialoging with God" about why this is happening to us? And the answer I got is "just trust me" so then of course I say to God "I AM TRUSTING YOU!!!" then in a calm quiet voice I heard- "No, like Abraham trusted me" then I was quiet. 
At an old Age God went to Abraham and told him to leave his people and move to the "promise land" And Abraham Went...no questions.
When Abraham and his wife were Barren God promised to make him the father of many nations, and that his decendants would be more numerous than the stars in the sky.  And he didn't question. It actually states that Abraham laughed at himself at the thought of him having a child at such an old age. Not laughed at God, but at himself. 
Then when he had a son through Hagar God told him that wasn't the promised one....No questions. 
Then when Issac is finally born God asks Abraham to take him son and offer him as a living sacrifice to God....AND ABRAHAM DIDNT QUESTION. Now of course God stopped abraham from sacrificing Issac- but God wanted to test Abraham to see if Abraham still would put God before all his earthly "possessions".
Dan and I have started tithing. Giving God 10% of our income. But somehow I missed the fact that it doesn't stop there. Everything in this earth belongs to God. And I have to trust him/give him what is his. Not only my life, but the lives of those who I care about. I think it is easy for us to say here God take our first fruits, take all this stuff- but (insert name/person here) is mine. Dan is my person, I care more about him than anyone/anything else...so it is very hard for me to say okay God- He is yours. I TRUST YOU. With whatever path you have for him. And I know that no matter what happens you have a plan for our lives and will never leave us or stop taking care of us. 
God required so much of Abraham...I have one single test and fall apart. 
God is Good and Faithful. 

Friday, September 11, 2009

Perspective is a funny thing

So tonight is my first night back at work since the beginning of our "Labor Day BP Saga". I feel like I am being more observant with how familys react and what happens since I have now been on the other side of the health care system. For the most part I am very proud of how we treat patients and how through we are here at Childrens Mercy. I know I will never want to take my children anywhere else. It is very odd to me how easily I relax back into this side of health care. I have the power to look up lab results, to know what the plan of care is and to know what is going on. And I have the responsibility to communicate those things with my patients and their families. That is what has been so frustrating about this whole process with Dan's BP-that we didn't know what was going on and that even when I would ask specific questions I wouldn't get the answers. Right now I am not super hopeful that much good will come from Dan's high bp or that it will even be an easy road to get it solved, or an easy road in the future- however I do think experiencing being the scared, lost spouse will help me be a better nurse. I chose to be a nurse because there is a gap between the health care diagnosis and the emotional connection/well being of the families. Nurses help bridge that gap. We help explain diagonsis in laymans terms after the doctors have moved on to their next patient. We answer questions and teach the patient/family the best way to care for their new diagnosis. We care and we are the ones to ask "are you okay" when a parent/patient is upset or unsure. Yesterday dan said "I feel like none of the doctors care that I am dying faster than the average person" Where was the nurse advocating for him during his hospital stay? I feel like his experience in the hosptial was a huge failure both for the doctors and especially for the nurses. Above all we are advocates for our patients. And that is what his hospital stay lacked. It lacked a driving force pushing to find out what the problem was it lacked an advocate. So if nothing else I have become a better nurse through all of this. It has helped me professionally. And I guess that is something.

Wednesday, September 9, 2009

So since Dan got released form the hospital on Monday (Its now Wednesday) it has been a frustrating experience. We have spoken to the Nephrologists office to try to move up his Octover 6th appointment. We cannot wait an entire month to figure out what is going on. His BP has still been high 210/140 yesterday AM. We made an appointment with his primary care doc today. I had never met the guy- he is a ass! We brought up our concerns and his response was "well he has had high blood pressure forever"...yah that is not a good response. We were there to talk about options, do some diagnostic tests and to figure out what is going on.  Not to be told "well it has been high forever" I am frustrated because I want to know WHAT  IS MAKING IT SO HIGH!! and then work on getting the problem fixed. 
I am scared to say the least! This is the most important person in my life. And this stuff that is going on is not only scary because of the immediate danger of it, but also because of the future danger/serious complications of chronic hypertension. I am trying to not freak out and to be strong about the whole thing, but honestly I am beginning to fail miserably. I am very emotional and a second away from tears constantly. I cried on the way home from the doctors office today.  I know it isn't helpful, it makes Dan feel bad- he already feels bad. None of this is his fault/and it isn't anything he can control. I wish he wouldn't internalize it and take it on himself. So I feel that our life is kinda falling apart, and until we have some answers it is going to be hard to start feeling better about it. I asked Dan today why all this is happening, I know he couldn't answer, but I feel like we have the worst luck! Its not fair. I am trying to trust God and remember that he is ALWAYS faithful to me. His word also has so many promises to us. Here are a few I read in John Today.

John 14:13 And I will do whatever you ask in my name, so that the Son may bring glory to the Father. 14You may ask me for anything in my name, and I will do it.

John 14: 27 Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

John 15: 7If you remain in me and my words remain in you, ask whatever you wish, and it will be given you.

John 16  33"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."

So once again tonight We are trusting in our faithful Father and glad that we have each other.

Monday, September 7, 2009

Life just keeps happening

This has truly been a "long weekend" aside from it being a holiday weekend I think to date it may be the longest lasting weekend of my life.  Dan woke me up saturday morning and said his stomach hurt really bad, after pulling out all my nursing skills and doing a quick abdominal assessment-we headed to the ER for possible appendicitis. It definitely was appendicitis, which my thought on that was 'no problem quick fix'. But then we ran into a bigger problem. Dans Blood Pressure in the ER was 240/140 at its highest. For anyone with minor medical knowledge- that is a very very high uncommon pressure- because people usually don't live with a BP that high. Dan has had past issues with BP due to a kidney problem and thought it was pretty much dealt with. So anyway we spent 2 nights in the ICU because they had to wait to take his appendix out until his BP went down. He was put on a Nicardipine drip and had a Arterial line to measure his blood pressure. Yesterday they switched him to oral meds along with the drip and then at 3am they turned off the drip. They moved him from ICU around 1030 and we were on our way home by 1230. From a surgical standpoint he is doing VERY well! He is sore and has some gas pain from the appendectomy but overall he is recovering well! However on the BP issue we truly don't know what is going on. He is on two oral meds and we are monitoring his BP from home. We will follow up with the nephrologist to figure out what exactly his going on, to take a look at his kidneys and his heart and other arteries that may have been damaged by his BP being so high. 
So that is the medical side. As far as the emotional side. I had a very sleepless night Saturday night. Luckily I had dans pocket bible in my purse and was able to spend time in the word and just praying. It was the first time I was truly alone to process. Dan was sleeping his parents had gone home, my parents had gone home.  It is a terrifying thought to have the most precious thing in your life be threatened. All I could do was let go and say "God-all of this stuff is yours anyway. Please take care of us, you have always been faithful. I know you are faithful" It is just a very interesting thing to have your faith tested like that...not to mention our brand new marriage. Lets talk about reality check. We certainly are getting to the sicker (and soon to be poorer) part of our vows quicker than we would have liked. 
Dan is disappointed and feels discouraged about this news. He is a strong man and doesn't like to be in a weak state, or to feel like he is a burden. He is not thrilled about the prospect of his upcoming appointments and tests to figure out what is going on- he hates the Dr/Hospital. And he isn't happy about being on BP meds from here forward or our new LOW SODIUM DIET!! (Im not too happy about that either) 
So thats the update with the Ballews. We are emotionally drained. Extremely Tired and Hanging on by a thread tonight. But we are thankful to have each other and thankful that we have a God that holds us in his hands and never ever leaves us.