Proverbs 3:5-6 say... "Trust in the Lord with all your heart, lean not on your own understanding. In all your ways acknowledge Him and He will make your paths straight."
T.R.U.S.T It's a word that many of us choose to use when it "feels safe". Over the last few months, its a word... its an action... I have had to put into practice every day. Not only trusting that God is still in control, but that He would lead us to the doctors we needed to see to find answers.
A.N.S.W.E.R.S That's a word we have been waiting to hear for many months. We think we have finally found answers. Here is what we know. When Cai had the bronchoscopy on March 13th, Dr. Albasida took a culture (just in case... but I know it's God's guiding hand). He received the results this week. There is a bacteria called "Moraxella" that normal resides in the upper respiratory of children... causing ear infections, eye infections etc.... but the bacteria was found in Cai's lungs. VERY rare. Actually not ever seen by these doctors in a child under 1. The probability is that he has had bronchitis since very early on. All his aspirations have probably been from reflux just complicating his condition. Hence why all his tissues are white and grey rather than pink. The lung cells that "fight" bacteria should be around 4-5. His are at 71. We also found that he is fighting one other bacteria along with 2 other virus'.
T.R.E.A.T.M.E.N.T Because of the severity of this bacteria, we were asked to have Cai admitted. Last night they placed an IV (in his head) because they needed to start antibiotics asap. This morning, they placed a more permanent line called a PICC line. The main reason they chose to place the PICC line is simply to allow us to take him home and administer antibiotics intervienously for the next week... allowing us to not have to stay in the hospital that whole week. Then, once they remove the PICC line, he will be on an oral antibiotic for 4-5 weeks. Our prayer is that he will totally be cured!
Thank you all for your continued prayers and for walking this long road with us. We have been so blessed with AMAZING doctors.... Dr. Steinmann, Dr. Beltroy, Dr. Elliot, Dr. Albasida, Dr. Castagnini. We have been blown away by all of their amazing bedside manors and they willingness to take time to research all these bacterias and virus' to better know how to treat Cai.
I will do my best to keep you updated over the next few weeks!
Friday, March 29, 2013
Tuesday, March 12, 2013
Praises, Party and Prayers
My blessings are more than I can count. Have you ever truly tried to count all the blessings that have been poured down upon you? I tried.... it was impossible! This month has been no different. In the midst of all the craziness our amazing family brings, God, once again blew me away.
On March 5th, I had to bring Malachi in to repeat the sweat test that would either confirm or rule out cystic fibrosis. Not only did the test go smoothly... no burns or blisters, no crying and lots of sweating... but I found that my stress level going into that day wasn't nearly what I expected it to be. I believe, a result of prayer... from all of you! Thank you.
That same day, two years ago, I gave birth to our amazing little firecracker - Olivia. Two?! Where have these last two years gone? She has grown into such a little "lady". Our days are filled with lots of "tubby's", Elmo, dancing, reading, pouring water into any and all things found, HUGE smiles, running to the potty a gazzilion times (she is now 1/2 way potty trained) and many many hugs and kisses. My colicky little baby has turned into a cuddle bug (Thank you Jesus!) that I hold dear to my heart.
Not only did Livi turn two on March 5th and Cai get re-tested. We got the call we were so uncertain we would get. Cai does NOT have CF. NOT! They were words I had somehow not expected to hear. God had totally prepared my heart for him to be diagnosed as positive. To accept that if that was how God was going to get glory... it would be okay. Needless to say, I was ecstatic! God was choosing to receive glory in my son being diagnosed as negative to this disease. This day... March 5th... amazing!
As I have continued to consciously be mindful of the blessings I have been given each day, here are some of my favorite.... forgiveness, hot water, beautiful smiles, soft warm blankets, my husband and children, toothpaste, mirrors, flip-flops, fuzzy pants, warm pajamas, blow-dryers, my sight, my hearing and my ability to be mobile, my friends, my family, and most of all - God's continues grace in my life.
Tomorrow, Malachi undergoes another surgical procedure. He is receiving a bronchial scope. We are praying that God will allow us to have an answer to Cai's months of struggles. If it's a structural concern, a different more intensive surgery will be needed. If he finds nothing, well, we ask the "what now" question once again. Either way, my prayer is that God will use me, that He will mold me into a woman, mother, friend, daughter, wife that is more like Him. That He will give me the strength to press forward, trusting that He will lead and that in His leading we will somehow glorify Him.
Thank you all for your prayers!
On March 5th, I had to bring Malachi in to repeat the sweat test that would either confirm or rule out cystic fibrosis. Not only did the test go smoothly... no burns or blisters, no crying and lots of sweating... but I found that my stress level going into that day wasn't nearly what I expected it to be. I believe, a result of prayer... from all of you! Thank you.
That same day, two years ago, I gave birth to our amazing little firecracker - Olivia. Two?! Where have these last two years gone? She has grown into such a little "lady". Our days are filled with lots of "tubby's", Elmo, dancing, reading, pouring water into any and all things found, HUGE smiles, running to the potty a gazzilion times (she is now 1/2 way potty trained) and many many hugs and kisses. My colicky little baby has turned into a cuddle bug (Thank you Jesus!) that I hold dear to my heart.
Not only did Livi turn two on March 5th and Cai get re-tested. We got the call we were so uncertain we would get. Cai does NOT have CF. NOT! They were words I had somehow not expected to hear. God had totally prepared my heart for him to be diagnosed as positive. To accept that if that was how God was going to get glory... it would be okay. Needless to say, I was ecstatic! God was choosing to receive glory in my son being diagnosed as negative to this disease. This day... March 5th... amazing!
As I have continued to consciously be mindful of the blessings I have been given each day, here are some of my favorite.... forgiveness, hot water, beautiful smiles, soft warm blankets, my husband and children, toothpaste, mirrors, flip-flops, fuzzy pants, warm pajamas, blow-dryers, my sight, my hearing and my ability to be mobile, my friends, my family, and most of all - God's continues grace in my life.
Tomorrow, Malachi undergoes another surgical procedure. He is receiving a bronchial scope. We are praying that God will allow us to have an answer to Cai's months of struggles. If it's a structural concern, a different more intensive surgery will be needed. If he finds nothing, well, we ask the "what now" question once again. Either way, my prayer is that God will use me, that He will mold me into a woman, mother, friend, daughter, wife that is more like Him. That He will give me the strength to press forward, trusting that He will lead and that in His leading we will somehow glorify Him.
Thank you all for your prayers!
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