Help Gideon Fight Chronic Lung Disease

For: Gideon Perkins
Organizer: Andy Perkins
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The Story

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We are a family of 7 in Boise, ID, with 5 wonderful young boys aged 12, 11, 9, 7, & 4. Gideon is our oldest.

Many of you have heard about Gideon's health problems, supported us in so many ways, and even asked if you can help us financially. We've created this site to help keep you posted and to create a venue for those who wanted to help us face the financial aspects of treating Gideon.

For the past several months Gideon, 10 yrs old, has struggled with even just moving from room to room without getting out of breath.  He had lost a great deal of weight and though he gained some back, maintaining weight has been a struggle as he has been in pain, constantly nauseous, and nothing is appetizing. His weight got so bad having a feeding tube put directly into his abdomen has been discussed. He got progressively worse until mid-November when we took him to the ER and weren't sure he would make it.  He spent over a week in the hospital and underwent numerous tests including a bronchoscopy that revealed massive amounts of mucus in his lungs due to an infection. The infection is currently being treated with a month-long round of antibiotics.  A CT scan showed bronchioestasis which indicates permanent damage to his lungs and a chronic condition.  Cystic fibrosis and TB tests were negative so we don't know what is the underlying cause nor his long-term prognosis.

We have had several trips to Cincinnati Children's Hospital to help diagnose the underlying cause, clarify his long-term prognosis, and create a care plan.  So far, we don't not have any answers. We will going again in the next few weeks for a more extensive lung biopsy.  The suspicion is that his immune system is attacking his lungs for some reason.  They will take a about a 1x1x1/4inch section of his lung.  Depending upon what they find, we may be looking at several weeks of IV treatments to stop his immune system from attacking his lungs.  

We have also met with a lung transplant specialist to explore that possibility if IV treatments don't work.  This is a last resort as 5year survival rate is at 50% right now.  Not fun to think about, but something we must consider.   

Gideon is currently at home with oxygen and equipment to treat his lungs throughout the day. Our hopes are to have him as mobile as possible, strengthening the muscles that have become so weak over his months of illness.

This site gives you the chance to help us cover medical expenses and this trip to Cincinnati. 

Don't forget to Subscribe for Updates.  Please feel free to share this link as well.  There are widgets on this page to help you do both.   

Fine Print stuff: does not charge a fee because it is run by donors.  However, Paypal charges 2.9% + $0.30 for each transaction, whether you pay with a Paypal account or a credit card.  So, if you give $100, we actually get $96.8 of that.  In any case, we are grateful for any amount donated.
-You do not need a Paypal account.   You should be able to pay with a credit card. If you have issues please email us at [email protected]
-You can always mail a check if you prefer.  Use the Contact button to send us an email and I will give you our physical address.  

Andy and Lynn Perkins
Gideon, Isaac, Phineas, Atticus, & Niam

Fundraiser Updates

Posted on January 11, 2017

Posted on January 11, 2017

2017 sure has had an interesting start.  Boise is experiencing a record 15" of snowfall over the New Year.  My Maine blood is loving it and most people are enjoying the experience of a real winter, but the city sure isn't prepared to handle it.  We have been hunkered down in our cozy home and enjoying the extra time as a family.

Gideon's fundoplication surgery on December 13th went well.  During the post-surgery discussion with us, Dr. Curnow said the shape of where Gideon's stomach met the esophogus made it obvious as to why he had reflux and surgery was the only way to fix it.  No amount of diet or lifestyle changes would have helped.  This reassured Lynn and I that we had made the right choice.   Even better, over the next several weeks Gideon has made comments like 'Did you know reflux burns?' and has had several good discoveries about how eating should feel, including that burps aren't supposed to have solid content!  

We did have some serious setbacks as Gid contracted C. Diff at the hospital. Dr.Curnow was proactive and had us begin three doses of probiotics a day as soon as he heard of Gid's severe stomach symptoms. He also had Gid tested for C. Diff early just in case, even though the chances of it being that were slim. Obviously it DID end up being C. Diff, and we're grateful we began getting Gid's gut bacteria back into order early, because his symptoms are under control and he's gained several pounds of weight back, which is no big deal for him!

Gideon's attitude has been excellent through his recovery and dealing with the psychological and emotional changes of having a feeding tube.  It has been nice not having the pressure of making him eat.  The incredible feeding supplement we use is called Liquid Hope, and it literally has been Liquid Hope.  He has expressed having increased self-esteem and confidence because he feels like we have finally found a way to help him grow and answer some of his medical issues.   The plan is for him to eat more solid foods over the next several months and wean off the feeding tube.    We pray that 2017 is the year Gideon puts on good weight, his lungs recover enough capacity to make illnesses less stressful, and that we can look back on this time of suffering as one of great personal and family growth.

Thank you for your continued interest in our family and support.  Lynn and I are horrible at sending out appropriate Thank You's, but know that every note, comment, letter, gift, and smile makes a difference to us.  

Posted on December 13, 2016

Posted on December 13, 2016

Skip to the last bullet point if you just want to read about Gideon's fundoplication, bronchoscopy, feeding tube placement, and umbilical hernia repair that will occur tomorrow December 13th.

So, a lot has been going on the past several weeks here at the Perkins' household: 

-Lynn is making progress recovering from her ankle surgery in August.  She is mobile now and making progress with physical therapy, but still has periods of a lot of ankle pain.

-Andy had a vein closure done on Friday to start dealing with the varicose veins he has inherited from his dad and grandmother.  The procedure was a peace of cake compared to what Lynn and Gideon have been through so hasn't complained...much.

-We have postponed the hand surgery for Niam to separate his didactic fingers.  We were incredibly unhappy with the attitude and lack of respect for us as parents when we met the hand surgeon.  He couldn't give us a real good medical reason to do the surgery now except that, 'He needs 5 fingers...he'll be made fun of...he won't be able to do certain things.'  While it is true that his skin will graft/regrow easier now and that neurologically he will learn to use his fingers now, we could do it at a later date.  We will wait until find a hand surgeon we like, and until Niam shows more interest in having them separated.

-We are finished with the 6 months of IV stereoids for Gideon.  The last month was incredibly tough emotionally for Gideon with periods of sobbing and incredible frustration/anger.  Those emotions are largely gone now as the stereoids are out of his system.  We meet with the pulmonologist in early January, but it appears that we won't be continuing steroid treatment for his lungs as the PFT's don't really show any evidence of improvement.

-We have been fortunate enough to have met a pediatric surgeon, Dr. Curnow, who is all you could want in a doctor guiding you through some complicated decisions.  He has reviewed Gideon's case and consulted with other pediatric surgeons to determine if reflux could be a large contributor to Gideon's lung issues.  We have had evidence of reflux and aspiration into the lungs since 2013, but nobody has made a strong case for doing a fundoplication to stop the reflux.  An upper GI last Thursday showed such strong reflux that Dr. Curnow believes a fundoplication to stop the reflux is necessary to protect Gideon's lungs.  It will also help him nutritionally during this critical time of puberty.  He has seen many cases where aspiration of stomach fluid into the lungs causes many issues, and fixing the reflux improves quality of life dramatically.  

Dr. Curnow has been exceptional at walking us through the decisions, possible complications, and overall just being understanding of everything we have been through.  He's not promising a cure or fix to Gideon's lung disease, but he is giving strong hope that Gideon will start eating and growing again normally, while protecting his lungs from possible further damage due to aspiration.

So tomorrow Gideon will have a fundoplication (tying esophagus and stomach to prevent reflux), a rigid bronchoscopy to take biopsies of esophagus and look for other complicating issues, a feeding tube placed, and fixing his umbilical hernia.  The  feeding tube will be used for several months, and if we find that Gideon is eating fine without it then we will remove it.  He will be in the hospital for 3 days.  He is at peace about it all and looking forward to catching up in weight and height to his peers.  

Pray for us as this has all happened quickly.  We are hopeful and optimistic, but doubt and fear always reside as we have been through many dead ends.  

Financially this has been an expensive year medically.  Fortunately (or unfortunately depending upon how you look at it) we have met our maximum out of pocket expenses so Gideon's surgery should be covered 100%.  We have about $6,000 dollars left from previous fundraising.  I'm sure this will be used up quickly as the new medical year starts.  While we are not in critical financial need, any continued financial support helps. We continue to be blessed with a great support system helping us with child care, meals, housecleaning, and overall emotional support.  

Andy and Lynn Perkins

Posted on September 27, 2016

Posted on September 27, 2016

The past several weeks have been grueling for us.  At this point, I don't think I can even capture it all, but here's a sampling:

-First, Lynn had ankle surgery on Aug.24th.  This was something she has needed for decades, but there was never an opportune time for the recovery time of 8 weeks.  Earlier this summer she hurt her foot badly playing soccer with the kids days before getting on a plane to Chattanooga by herself with the 5 boys.  She had it checked out in Chattanooga and was told she had a bone bruise and needed to wear a boot until she could have it looked at back in Boise. The timing was somewhat advantageous in that she could 'rest' (a mom never truly rests) for two weeks since family was nearby to help with the boys.  However, upon returning to Boise and having it checked out, it was recommended she have the ankle surgery while it was still possible to fix it.  There never was going to be an opportune time to plan for the recovery stage, so we decided to go just ahead and do it.  
Unfortunately, we were not adequately warned about how painful ankle surgery is, nor how long the recovery would be.  Pre-surgery we were planning for one of week bed rest, followed by 3-4 weeks of no weight bearing.  So, she was mentally and emotionally prepared for one week of bed rest.  The kids and meals were all taken care of and I had flexibility at work to help for the first week.  
The surgery itself went fine, except for when they had to do a second nerve block after the surgery.  Lynn says she remembers waking up and shaking and being held down while the anesthesioligist did a second nerve block.  The doctor said it didn't look as bad as the MRI made it look and he was optimistic that in 6 months she would be back to normal, and most likely feeling better than she had pre-surgery.  Sounds great...until at discharge we were told to plan for two weeks of bed rest and that the first 48 hours are the most crucial and painful.  We were given Percocet, Norco, Phenegran, hydroxyzine, and gabapentin to deal with the pain.  Plus, she had an On-Q nerve block elastic ball to continue blocking the pain for 48 hours.  We were not happy about the choice of pain medicines because in the past her pain had not responded well to narcotics.  
Well,  I don't like to think back much on that first 48 hours because honestly they were pretty traumatic for us.  The narcotics were not helping much with the pain and I was struggling to find a way to give her relief.  We were both barely sleeping.  Eventually they gave us Oxycontin, which helped a little more, but not enough to make it worth the risk of overdosing.  All the docs (except the one I spoke to and gave the oxycontin prescription) were nervous about all she was taking, and yet she was still in tremendous pain.  It was frustrating for me because I couldn't get a consistent answer about what was safe or best.  Eventually we went in and had the foot rewrapped, which helped some, but not nearly enough to make Lynn comfortable.  After about a week we were able to wean her off the narcotics and start Tylenol and Ibuprofen which worked better for her, and without the nasty side effects.  
Over four weeks later and she is still in alot of pain. It's tolerable, but not at the level we expected it to be at by now.  Bones and tendons heal slowly.  AND TO TOP IT OFF, Saturday we ended up in the ER with Lynn for severe Vertigo.  Seriously.  She ended up drugged up on valium, Antivert, and something for the nausea.  We tried the Epley manuever to displace any crystals in her ear that may be causing it, and had success. She's now just dealing with residual nausea and dizziness rather than full blown vertigo.  We are optimistic, but at the same time incredibly discouraged and barely hanging in there.

-While all this is going on with Lynn, we had the 4th month of IV treatments with Gideon last week.  The 3 days were filled with more nausea and pain than the previous IV's. The IV sites were very tender and it was an emotional week for him.
It's hard to tell whether the IV steroids are working or not.  Overall he seems to be functioning better, but the PFT's and xrays don't indicate strong improvement, except in his lung volumes.  We met with the doctor to discuss whether we continue with the IV treatments. We've decided to continue two more months to finish six months of treatment and reevaluate once again from there.  Pray that we come to a clear decision.

-On Oct.3rd we meet with a pediatric surgeon to discuss separating Niam's webbed fingers.  He is 5 years old and has expressed both wanting and not wanting his fingers separated. There has been no medical necessity to do the procedure so far, but his middle finger seems to be bending a bit to fit with the ring finger. A check up will help check bone growth to make sure there's not damage being done as they grow while fused together.

-The boys are overall more sensitive and needy.  The combination of Gideon's treatments and Lynn not being able to mother as well as she wants due to her health issues, make the boys more sensitive and edgy.  They are great kids, but it has been tougher to keep them focused and loving each other.

-While all this is going on, I'm trying to finish siding the final side of the house.  This has been a 3yr project and I'm desperate to have it done by winter.  I want next summer to be normal.  No more losing weekends to siding the house when we should be swimming, playing, hiking, biking, etc... I enjoy the work, but it's been incredibly difficult to find the time and mental/physical energy to do it.  It's only because Lynn's dad, Gerry, has been able to help me out that I have a chance of getting it done before the end of October.

Please continue to keep us in your prayers and thoughts.  We are incredibly grateful for our friends and family who continue to be our lifeline.  I know it can get old or numbing hearing about us and the craziness.  I keep telling myself this is just a rough patch.  It will get better.  Even in the midst of this we continue to find joy, growth, and gratefulness.  But we are so weary.  I'm grateful that we have a God who sees that weariness and uses to refresh and stretch us in ways that would never occur otherwise.  

Click on the link for cute picture of Arlo and Lynn with her ankle wrapped up.
Lynn and Arlo

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