Feel the awesome.
11
Aug 2012
Medical Update
Let me first start off with these two photos…for no other reason than I could look at them all. day. long.
I thought I would take a post to give a medical update on the boys. This blog is primarily used as a keepsake for the boys and for Jeremy and I to forever hold on to the memories we’ve built as a family. But, another component of it is to keep a bit of a medical journal (we do use other sources) on how the boys are doing, and to live this journey of having Cystic Fibrosis in front of people to bring awareness and to share the real ugly of this disease. I feel like I’m helping my boys by sharing. There is power in awareness.
It’s easy, even for me, to get lost in the cute faces of Asher and Beck, and forget about the untamed beast of a disease called Cystic Fibrosis. You would never guess that they do hours of treatments a day (that’s when they’re feeling well), and they take almost 1,500 pills a month to fight this battle. I want to forget that they have cf most days. And, honestly, I think that’s good for all of us that we do. We do treatments, we take pills, we live in our normal, and we’re determined for this disease not to rob our boys of the joys that life has to offer. But, yesterday made it hard to forget the all out battle we’re in.
We got the call that Beck has Pseudomonas. Instant tears. We know what this bacteria means for our boy, because Asher has it as well. People with Cystic Fibrosis share lung bacteria with one another, so when we found out about Beck having CF, we knew it was inevitable that he would contract it as well. It didn’t make the call any easier though. This bacteria freaks me out. I’ve shared this before on the blog, but I’m going to do it again because it’s really the most simple explanation and illustration…
Pseudomonas aeruginosa settles into the thick mucus trapped in the airways. Once it sets up house in the respiratory tract, Pseudomonas aeruginosa is hard to get rid of. Respiratory failure caused by the infection is often the ultimate cause of death in many people with CF. Here is a illustration that gives a clearer picture of how it transforms and really truly turns into a monster!
The first picture is where the dr.’s try to catch PA. Once it reaches phase 3/4 it goes crazy! And, by phase 5 it is sending new feeders out voraciously trying to acquire new territory in the lungs and destroying every part it can. There are currently only a couple of antibiotics that work against it. The CF person’s PA is very likely to become resistant at some point to these antibiotics because of high use (every other month). The problem for a CF person is not only becoming resistant to the drugs, but the antibiotics are so harsh that it also ends up destroying the liver, kidneys, and/or the heart.
Asher was 11 months old when we got the call about him having Pseudomonas, and it’s been an on and off again battle trying to keep this ferocious bacteria at bay. It makes our hearts hurt that we have to fight this same, yet unpredictable bacteria with Beck who is about 4.5 months old. It means adding an antibiotic, Tobi, that takes about 20 minutes to administer, twice a day for 28 days. Tobi has proven to be really hard for Asher to tolerate, so I’m not sure how a little 4.5 month old will react. It makes me sad to have to put him on it…but we’re thankful we have something to fight this bacteria. So we roll up our sleeves.
Speaking of treatments. We got a vest for Beck. We were nervous about whether or not Beck would be approved by our insurance since he’s so little, and we weren’t sure how much we would have to pay for it since it’s a $20,000 machine. We got the call and our rep from the vest company said, “Your insurance company paid for a portion, and Obama passed a law that covered the rest of it.” Absolutely amazing. We thank the Lord for making this all happen. And, the best part about it is that Jeremy and I were prepared for Beck to lose his mind when we turned on the machine (because Asher did) and instead he fell asleep. The shaking lulls him to sleep! That is of course after we’re finished with his nebulizers. He turns into psycho, freak out baby during his nebulizers. But, we’re 1/2 way there. The happy vest experience has been a huge blessing!
Current Meds for Beck: Elecare formula (Beck has a dairy allergy); Culturelle twice a day; 6 Zenpep 3,000 with each bottle; 1/8 tsp salt; Prevacid twice daily; antibiotic to treat E Coli (from meconium ileus and reflux); Vitamax; 6 treatments of Xopenex daily (inhaled treatment); Pulmozyme daily (inhaled treatment); Hypertonic Saline daily (inhaled treatment); Tobi (inhaled treatment).
Current Meds for Asher: 5 Zenpep 10,000 with each meal; Zantac twice a day; Prevacid once a day; Culturelle once a day; Azithromycin three times a week; Vitamin D daily; Multivitamin; Albuterol twice daily (inhaled treatment); Hypertonic Saline twice daily (inhaled treatment); Pulmozyme once daily (inhaled treatment); extremely high fat diet
Between keeping up on the medicine orders, cleaning and sanitizing breathing equipment, doing treatments, frequent doctor appointments, cooking up something salty and fatty, finding organizations and seeking grants to help with expenses, dealing with insurance companies, keeping medical bills organized, doing research to make sure we are taking care of them the best we can…it can be a bit all consuming, and honestly, it can be overwhelming. I’m truly not complaining, I love taking care of my boys, but that doesn’t mean it’s an easy disease to manage. Some days the heaviness of cf and the reality that things will only get more complicated for them as it progresses can be crushing. Some days it can be hard to find joy in the boys having Cystic Fibrosis. We work hard to not let them feel any of these emotions, but secretly pray like mad men for the Lord to make it all go away.
Asher is doing his treatment so the background noise is a little loud, but I just had to share what most of our days are filled with…
…and we are blessed. We are fueled and energized to be their caregivers and cheerleaders. And, we pray. Thank you, Lord, for making us their Daddy and Mommy. We come to you begging you to share the wisdom with the pharmaceutical industry so our boys no longer have to be warriors in this CF battle.
We would be so honored to have you join us for the 5th Annual teamASHER + BECK Silent Auction on Saturday, February 23rd from 4:00-6:00pm at Redemption Church Gilbert.
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The teamASHER Silent Auction
A Slice of Yesterday
Pressed on all sides but not broken comes to mind. You are strong and abounding in love. You are a mother extraordinaire. I am so sorry that Beck has this and that Asher fights this and that there are realistic things to tug at you toward worry and fear. It makes my heart hurt for you and for them. I am praying for a cure for your most wonderful, beautiful boys and that God continues to sustain you and keep you focused on the eternal weight of glory beyond this home that is so difficult and trying at times.
Rachel you truly are a Proverbs 31 woman. (I can hear you laughing) You love the Lord, your husband and your beautiful boys. You care for them in a way that honors the Lord. My favorite verse is Isaiah 41:10 Fear not for I am with you, be not dismayed for I am your God, I will strengthen you, I will help you. I will uphold you with my righteous right hand. We are lifting your family up to the throne praying that a cure would be found quickly and that God would continue to sustain you. LOVE YOU!!!!!
Rach, my dear, thank you for sharing the struggles, realities and fears of this battle with us. Asher exudes such joy and enthusiasm–it is so easy to think of him as the kid running circles around every other kid on the soccer field or dressed in his super hero attire, and forget the battle you are fighting with him everyday. And it is easy to look at Beck with his never ending smiles and his soft, squishy baby chub and forget the enzymes that have helped him gain that weight and the treatments that help him breathe easier and smile. I hate the CF reality, but, man, do I love your little warriors. They are fierce and precious. We pray for them continually and this post will bring even greater intensity to those prayers! Love you guys!
Praying for you my dear friend! My heart has been heavy since I read your post. I HATE CF!! Hang in there. God is good and I am so thankful that He has given your boys such a wonderful mommy and daddy! We continue to pray for you and will be knocking on Heaven’s gates on behalf of Beck and Asher.
Both of your boys are BEAUTIFUL! It is so much fun to see Beck. (All of my kiddos had to gather around the computer to see Baby Beck that we have prayed for often.) Much love and hugs to you!
Asher and Beck are so lucky to have you and Jeremy as parents. Thank you for sharing. Keep fighting.
Love u guys!!! and continuing to pray for u as a fam!
Tears of a mothers heart that is tugged at are flowing down my checks. My God is sufficient is where I need to land as I read and re-read your blog. Truly the giggles of Beck fill the heart with joy and the hum of the treatment machine with Asher bring the reality into focus. Rach, thank you for your openness to your life in lovingly pouring yourself into the lives of your boys with the rest of us. For me to pray seems both the most important and at the same time the least I can do. Holy Merciful God pour out upon the entire Olimb family Your grace!
Love you guys, colleen
That is a lot to manage but you do such a great job. I too see your boys as fun, active, smiling boys but I will continue to pray for a cure and for health!
Rachel, You are amazing! I know you are strengthened by the LORD, for where else would you draw the strength needed to care for them. God bless you and Jeremy as you raise these boys for HIS glory! Love all of you.
Love. Love you and J, love Asher and Beck. Love your honesty and openness. Love the army of warriors you have fighting, thinking and praying for you. Love that you are part of our lives. LOVE that video of Beck being so giggly. Love you.
they are so precious! Miss you guys! These boys make the world more amazing. And you guys – you inspire me every day to be a better parent, to be half as awesome even. Your amazing attitudes and outlooks, and your amazing children – what a testament of love & strength.
You are in my pillars of women Rachel! Those pillars in my life that came along and showed me what amazing mothering looks like…. and i tucked it in to my life notes for my journey. You will always hold that special place. And these 3 boys will always hold carved spaces on my heart.