Things just aren't improving here. The line tip from the old line that was sent for culture came back growing Staph & Yeast. And now Noah's latest peripheral and new line blood cultures are also growing yeast. The lab is still trying to identify what type of yeast. This is very dangerous for Noah and yeast is difficult to treat. He continues to spike fevers as all these antibiotics aren't touching the yeast. So our brand new line is in jeopardy. ID wanted to pull the line tonight, however, our surgeon is out of town until the morning, so we decided to wait until she is back tomorrow before making any decisions. He had another bone scan done today to see if the yeast has seeded anywhere else. No results on that yet.
Noah will be started on Amphotericin (an antifungal medication), however the drug is very very harsh and can have bad side effects, including toxicity to the kidneys. He is at even greater risk as he still needs the antibiotics (Vanco & Gent) to cover the Strep bugs. These alone are hard on the kidneys. However, we have no other options at this point.
On September 21/05 we were blessed with a beautiful son. Born with a chromosome 12q deletion (q15q21.2), the challenges were many...cleft lip/palate, complex feeding issues, developmental delays, failure to thrive, multiple infections, blood clots, asthma, sleep apnea, GI and pulmonary bleeds, TPN dependency and kidney issues. Noah embraced life and taught us how to love. On July 29/09, Noah's journey ended, leaving us on a new journey...this journey on the pathway of grief...
About Me
- Nichole
- I am mom to 3 beautiful children. I also work casual as a nurse. Our life is a crazy one, and nothing like we ever expected it would be. Yet, this journey has changed me and the way I view others. And it has helped us slow down and enjoy the most precious things in life. I wouldn't trade those lessons for anything.
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9 comments:
My Father knows your every need. He is your Rock, you Fortress, your Sustainer, your Healer. He is the God of the broken hearted, and he heals those who are crushed in spirit. He loves you and baby Noah with an everlasting love. His ways are not our ways, but He weeps with his children, and longs to comfort them. May you rest in His promises and His love, for He has promised,"I will never leave you or forsake you".
We love you guys and we're praying for all of you.
Laura
You guys are never far form my thoughts or prayers. The road you guys are traveling is so hard. I can't imagine the emotions, the numbness, the fear and the questions you face each moment of the day. I pray that in all these things, that there will still be that quite stillness of God leading you on. I pray that He will give you the strength to keep going, to keep trusting and to keep giving your precious little guy to.
I am still praying as are many others.
Ramona
It sounds scary. We'll be keeping you in our prayers.
Oh. Scary yeast and bad bugs...I am praying for all of you. It's amazing how your precious Noah has touched my life so much, through the light in his eyes and happy smile that I see in pictures on a computer screen. I am a stranger half way across the country, but your family is on my mind often.
Wow, how hard this must be, but wow, how resilient you and your precious son are. You and your family are a great example of love and determination. Although a stranger, I think about you often and know that I and others stand in awe of you. Hoping beyond hope that this resolves quickly.
Tears fill my eyes tonight as I read this post. You are forced to be so brave. May God's promises feel true -
i was thinking alot about Noah over the weekend. We are praying for him constantly. This all sounds so overwhelming and scary and I am amazed at how you always seem to understand and know everything that is happening.
My family and I are praying for Noah (as we do daily). May God continue to bless him so he can get well and come home
Take care and may God continue to keep you all in His hands
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