On Monday, August 28 I dropped Ayva and Abby off at school and Emma and I hit the road up Highway 99 on the 121 mile drive to Valley Children's Hospital in Madera. This road knows Emma and I well, as we have traveled it countless times over her life. Emma and I have found joys and heartache on this highway, and this day, proved to be the same.
As we sat waiting to see Emma's pulmonologist, we tried to stay entertained, Emma engulfed on the ipad with headphones in watching "Once Upon a Time" and me scrolling through Facebook getting caught up on everyone's life. Her doctor entered with a rather grim look on his face which, caught me a little off guard since he is normally full of smiles. His first few words were "Emma has gone from complicated to extremely complex." He pulled up a chair, sat down and began to explain: The fungus they found in her lungs while she was admitted was different from what they originally thought and we needed to make some changes. Emma is growing a black yeast in her lungs. It is very rarely found in humans, but has been known to colonize in lungs of those with Cystic Fibrosis. This is difficult to treat, the IV medication that she has been on since being discharged from the hospital is not working because sensitivity levels showed she is resistant to it.
So we are back to the drawing board...the doctor is hoping and working to get her approved for an antibiotic that she would take via injection twice monthly, but, like all IV Antibiotics, there are some risks involved with this drug. If we cannot get her approved for this med, there is another alternative, but it has very serious complications to her liver, so we are praying that is not the option we have to take.
Which brings us to issue number two and three...
These next two issues go hand in hand... first off, Emma is being treated for ABPA (Allergic bronchopulmonary aspergillosis) with high doses of prednisone to help bring her allergic reaction to it down. This is a normal treatment for ABPA.
Secondly, Emma's bronchoscopy showed that she is growing mycobacterium abscessus again. Emma originally tested positive in North Carolina and has been on a six antibiotics treatment therapy since March 2016 (yes for 17 months!!). She went 10 months (no break from the treatment plan during this time) with negative cultures but M. Abscessus has once again reared its evil head!! So, we now will continue for other 1-3 years on this 6 antibiotic treatment pending future culture results.
Now, here lays the issue: the prednisone that she is on for the ABPA causes the m. Abscessus to grow like wildfire, so we have to slowly wean her off. This will take approximately 4-6 weeks. In the meantime, we risk the M. Abscessus growing very rapidly. Once she is weaned off, she will have to have another surgery to scope her lungs and see how things are looking.
Secondly, Emma's bronchoscopy showed that she is growing mycobacterium abscessus again. Emma originally tested positive in North Carolina and has been on a six antibiotics treatment therapy since March 2016 (yes for 17 months!!). She went 10 months (no break from the treatment plan during this time) with negative cultures but M. Abscessus has once again reared its evil head!! So, we now will continue for other 1-3 years on this 6 antibiotic treatment pending future culture results.
Now, here lays the issue: the prednisone that she is on for the ABPA causes the m. Abscessus to grow like wildfire, so we have to slowly wean her off. This will take approximately 4-6 weeks. In the meantime, we risk the M. Abscessus growing very rapidly. Once she is weaned off, she will have to have another surgery to scope her lungs and see how things are looking.
The M. Abscessus is our biggest concern at this point. Mycobacterium abscessus is a multiresistant, non-tuberculous mycobacteria. It is associated with a rapid deterioration in lung function and increased rates of morbidity and mortality. It requires long term multi-antibiotic treatment and limits or removes their ability to receive a lung transplant.
The bottom line is Cystic Fibrosis is an invisable illness that takes a beautiful, blonde, 11 year old and destroys her lungs. It's a vicious monster that tries to rob her of her breath and freedom. Many advances have happened over the year in the world of CF, but these warriors are still fighting a never-ending battle with no cure. We are constantly saying goodbye way to early to these precious lives, and I wish we could bring a stop to that!! Please pray for a cure for all those enduring this illness!!
Now with this being said, Matt and I are diligently looking into some option to help Emma and our family as a whole. We are discussing these with her team, and have her doctor's complete support on some potential upcoming decisions. I will explain this is further detail in the near future after we have some final answers. I just ask, in the meantime that you would please partner with us as we pray for clear direction and open doors.
We are so grateful to each of you for your continued love and support. This has been a very long road, but the journey isn't over yet! We are trusting that the Lord has all things in control and has a purpose and plan for it all. We are humbled that He would allow us to be Emma's (and the other girls) parents and that He trust us to endure this life with her.
Friends, remember no matter what you are enduring today to "consider it pure joy when you face trials of many kinds, because you know that the testing of your faith develops perseverance. Let perseverance finish its work so you can be complete and mature, lacking nothing" James 1:2-4. Hang in there... God has a plan for everything!!
We love y'all!!
The bottom line is Cystic Fibrosis is an invisable illness that takes a beautiful, blonde, 11 year old and destroys her lungs. It's a vicious monster that tries to rob her of her breath and freedom. Many advances have happened over the year in the world of CF, but these warriors are still fighting a never-ending battle with no cure. We are constantly saying goodbye way to early to these precious lives, and I wish we could bring a stop to that!! Please pray for a cure for all those enduring this illness!!
Now with this being said, Matt and I are diligently looking into some option to help Emma and our family as a whole. We are discussing these with her team, and have her doctor's complete support on some potential upcoming decisions. I will explain this is further detail in the near future after we have some final answers. I just ask, in the meantime that you would please partner with us as we pray for clear direction and open doors.
We are so grateful to each of you for your continued love and support. This has been a very long road, but the journey isn't over yet! We are trusting that the Lord has all things in control and has a purpose and plan for it all. We are humbled that He would allow us to be Emma's (and the other girls) parents and that He trust us to endure this life with her.
Friends, remember no matter what you are enduring today to "consider it pure joy when you face trials of many kinds, because you know that the testing of your faith develops perseverance. Let perseverance finish its work so you can be complete and mature, lacking nothing" James 1:2-4. Hang in there... God has a plan for everything!!
We love y'all!!
8 comments:
I sat reading this with such a broken heart and tears, yet God said ROAR!!! Roar her healing from my lips! Roar with diligence!! Shout healing to the Heavens!! Stand strong all those that are surrounding her! I know that I know our God is a healing God. BELIEVE! Fight the good fight of FAITH!!! God gives us the strength we need to roar (war) in this storm....My proclamation of healing and prayers go up towards Heaven for this young lady and her family.....In Jesus mighty name!
Amein
Susan
Dear faithful God, powerful and loving Father, please touch Emma's body and just heal her Lord. Perform the miracle that declares Your Glory greater than any medical procedure. We asked God that you would relieve once and for all the suffering and agony. This family has been so faithful to glorify you and every circumstance and I just pray Jesus that you would heal Emma. We Believe completely that you are able and that you alone are able and that you have the power to touch her body in such a way that no medicine can. I beg you God, on behalf of my friends and for this beautiful child of yours, in Jesus name!
Father, You gave me salvation through no work of mine. You saved me for a day when I could reach out to others and testify to Your supernatural power. I remember Father. As I recited The Lord's Prayer, I saw You. I, humbled by Your light, enveloped in Your warmth, crushed by the full knowledge of salvation. If You saved me God for any one purpose, I pray it be this. I pray that whatever You've done for me, do also for Emma. Let her spirit be lifted in Your presence Lord. Let her father and mother see her free of this scourge. Let Your love be the lamp by which she walks. Let Your mercy be the speed in her running, running to You. Fill with joy the hearts of all that love her, let them rejoice and praise You in every breath. Lead them to You, for You are the way and the life. My tears betray my love for You and Your children Father. Let them not be wasted on the deaf nor blind. Let these words be a song to Your ear, a joy to Your heart and the supplication of my savior be thine will also. In Jesus's name. Amen.
This prayer gave me chill bumps (Holy Ghost chill bumps) I agree in Jesus Name!!!!!
Amen!!
I'm praying this morning for Emma and the whole family affected by this,God give Lisa and her hubby wisdom and strength,provide for all there needs God,give them peace in the midst of this on going situation in Jesus name clear Emma's lungs and kill the black fungus on her lungs in Jesus mighty name amen.
I am so sorry sweet Emma is facing this. She is so lucky to have such wonderful, God fearing parents. I will continue to pray for Emma and the whole family daily. Love you guys.
I am praying for miraculous clearance of the bacterias and fungus that invade Emma's lungs. HE will be glorified in this time of suffering and through your trust. He has walked closely with your family on this long road to healthiness. Your family have been so strong and have demonstrated unceasing faith.
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