Help Gideon Fight Chronic Lung Disease

For: Gideon Perkins
Organizer: Andy Perkins
$45,468
of $100,000 goal.
Raised by 245 donors
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The Story

- Check out Gideon's Christmas Challenge on GoLovePeople.com! Gideon's Christmas Challenge
-Please click on the UPDATES tab to learn the latest.


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:
-Youcaring.com 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.  

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

Fundraiser Updates

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

Posted on June 23, 2016

Posted on June 23, 2016

A long overdue update...

-The biggest news is that we've decided to go ahead and do six months of steroids in order to try to improve Gid's lung function. We did this back in 2014 for three months but stopped because we didn't think we were getting any improvement. The doctor from Seattle thinks we should try it again because he believes there was improvement based on x-rays that showed his diaphragm shape improving after the IV steriods. This is a new measurement we where not looking at in 2014.

We will do 3 days a month of IV steroids in order to bring down inflammation, heal scarring, and try to improve his lung volume. It will be a tough six months as the steroids make him emotional, his immune system is suppressed, and it's generally tough on everybody in the family. It takes a lot to coordinate the three days of therapy and we appreciate those who will support us during the upcoming months.

Last week was his first month of treatments and we were blessed to have it go fairly well, considering how bad it could go. It takes roughly 6 hours each day to do the IV drip slow enough so that he isn't overwhelmingly nauseous. By the third day it was pretty tough and it was only with the support of friends who sat with him that he was able to make it through. Lynn was so exhausted at the end of the 3 days she threw up the following morning and spent the day in bed...wiped out. Thanks again to those who took the other boys during those days and made it special for them. We also got to enjoy some meals provided to us, including homemade chili with Idaho elk.

The good news is that his O2 levels have been good since the treatment. We'll see how long it lasts. We are praying that he receives a long-term benefit, and not just a short term benefit from inflammation being reduced.

-Summers in Idaho are excellent, but they also can mean significant smoke and poor air quality when forest fires erupt. The air quality can be horrendous, effecting even those with 'healthy' lungs. We are working on isolating and improving the air quality in the house, and especially in Gideon's room. We already have a high quality air purifier, but in order to guarantee Gideon has a safe place to go we are going to be installing a ductless air system (heat pump) in each room upstairs, and installing a UV lamp in the existing ducting to kill bacteria/virus/mold that may circulate in the house. UV light treatment is pretty standard in hospitals.

We are also tearing up the remaining carpet upstairs and putting in laminate flooring. I will be working like a mad man to do this while the family is in Chattanooga to celebrate Lynn's parents turning 65. All of this isn't cheap, but it will ensure that the house air is as free of particles and bacteria/virus as we can give Gideon a high quality of life in his own home.  It will also help the other famiy members who struggle with allergies in the spring.

I'll leave you with a quote from Lynn's Facebook page:
Gid and I finally got home today about 8:30, eight and a half hours after we left. He is woozy, dizzy, flushed, and nauseous, but the slower drip seems to be helping the side effects not be as severe as last time we did this. He did go ahead and take a dose of Zofran when we left the hospital and we have a prescription called in. Even with the Zofran he says he feels yucky and his tummy feels "all wriggly and stuff, like it's being squeezed". We're going to try another oil mix and see if it helps.
His oxygen saturation rate, however is doing well, at 97% which is well into the normal range. :-)
As you remember us please remember Gid's friends, too, who are there for him and who are processing the reality of his diagnosis and treatments too.


Posted on April 25, 2016

Posted on April 25, 2016

Gideon turned 13 last Thursday!  We have a teenager!  And a great one at that.  He's glad to be 13, but isn't sure what the big deal is about becoming a teenager.  Ha!  Somedays he has no problem being a teenager, and other days he says he doesn't want to be a teenager.  Guess that pretty much defines being a teenager.

His last x-rays showed a little bit of improvement on the shape of his diaphragm, but his PFT was a little worse.  We are waiting to hear back from Seattle before deciding whether to do the IV steroids or not.  We are nervous about making the decision.  Thee last few weeks he has been doing pretty well, but we don't want to miss something that will help him long-term.

Posted on January 29, 2016

Posted on January 29, 2016

This is an overdue update on Gideon. On January 19th we made a trip to Seattle Children's Hospital to see an expert, Dr. Redding, in pediatric chest deformity and lung function.  Going into this specialist we had two assumptions about Gideon's condition:

  1. Gideon's sudden decline in lung function was a one time thing, and now it is just a matter of recovering. 
  2. So far we had been told Gideon's deformed chest, diagnosed as pectus carinatum (chest pointing out), was a secondary issue, if any at all.  His chest was bigger, so it should give him more room to breathe.
Dr. Redding flipped those two assumptions on us and now it looks like Gideon has probably always had a lung issue, and his lungs are actually pushing his chest out to make more total volume for him to breath.  This is very depressing for us and causes us to rethink many of our assumptions.  There is a glimmer of hope in that Dr. Redding did see evidence from x-rays that the IV steroid treatment from early 2014 might have been effective atimproving his lungs.  So we have a short window of time during adolescence to heal Gideon's lungs, keep him from deteriorating further, and get him out of the lung transplant zone. The doctor thinks his lungs will continue to be damaged if we can't find something that helps, and there's no guarantee that if we find a helpful treatment, it won't get worse again over time again.  We just don't know.  So we have to proceed with hope and faith, knowing that everyday is a gift.  A cliché, but it's true. 

Here is our plan over the next few months:
  1. Monitor Gid's lungs every 3 months with lateral chest x-rays to view his diaphragm shape and chest.
  2. Do breathing tests in a box to get his total lung volume (TLV).  This will tell us whether his lung's are actually getting better, or his chest is just enlarging.
  3. Consider doing IV steroids, cancer drugs, etc.. to see if anything can help heal his lungs while he is growing.  These are not easy decisions to make as there are long term side effects to consider.  But, if his lungs are in fact getting worse, we really don't have a choice. So if we find something that indeed helps we will continue through the years balancing the long term effects of treatment with the very real fact that he won't have much of a long term without treatment. 
It looks like we will have regular visits every 6 months or so to Seattle while figuring this out.  While not as bad as going to Cincinnati, it still is an emotional stress and financial stress on our family.  With that said, I'm going to ask for another push for funds to help us. We have some previous funds leftover to cover the immediate medical needs.  Additionally Gideon has been approved for Katie Beckett Medicaid.  This will help cover medical costs, but there is still a ton of medical and other non-medical expenses related to a chronic disease.

Ideally I'd like to turn these visits into good family bonding times for us, rather than a time when we are split apart.  It's been a rough time emotionally here as the younger boys are dealing again with fears of losing Gideon.  Gideon himself woke up with such fear and panic this morning that I haven't seen in a while.  And meanwhile, Lynn's TMJ has flared up to a point where it has incapacitated her.  She is a tough woman and takes pain well, but even prescription painkillers haven't helped her.  It's rough here folks.  We are in the thick of it again.

I'd love to use the trip in August as a time where we go as a family to Seattle and do things to build memories with Gideon, like visit the zoo.  It would be cheaper to drive the eight hours there when the weather is good enough for us to make the often snowy pass, but we don't have a vehicle reliable enough to make any trips. Roughly it costs about $1700 ($250 x 7) for a plane tickets, $150 a night for hotel, $120 a day in food, and $100 per day for extraneous things.  You all know how much Gideon has been an advocate helping kids with disabilities and chronic diseases yet he's never asked for a cent for himself.  You all have blessed us immensely with support and I'm throwing it out there that we need another push, if you can.  As usual, please do as you feel led. 

Posted on December 3, 2015

Posted on December 3, 2015

We have a special Holiday treat for you all.  GoLovePeople.com has created a video of Gideon's Christmas Challenge.  It is a great summary of where Gideon and his Heart are right now.  Enjoy, and find someone who needs your extra help and love!

https://youtu.be/A474a85GuLw


Posted on October 20, 2015

Posted on October 20, 2015

The past two weeks have been incredibly tough as both Gideon and Lynn have been sick.  Gideon has had a cough, a fever up to 104 degrees, and was in a lot of pain. He was back on the oxygen at night and pretty much coughing constantly.  His weight dropped 5 pounds and he is at a mere 50 pounds.   In addition, there was another fire nearby and the air quality was horrendous for about a week.  The days are long and tough for the whole family when Gideon is sick.  Isaac gets especially emotional and has a hard time leaving Gideon's side.  He is so concerned about Gideon dying.  We all are when he gets a cough and don't know how his lungs will be affected by colds and flu.

Fortunately, we were able to avoid steroids and antibiotics to treat this.  We seem to have found a combination of essential oils that boost Gideon's immune system and help fight viruses and bacteria.  We were able to manage his pain, fight off infection, thin his mucus, and diminish the cough some.  The doctor said the infection never moved into his lungs.  As of right now, Gid's fever is gone, he is coughing much less, his appetite is up, an our hope is that he is feeling better by the end of this week.

Oh, and while Gideon was sick, he managed to raise $280 for his friend Whit and the MDA.  That's not all.  He raised $520 for the Be Bold Be Bald Campaign which raises awareness for cancer.  His heart has been changed by his own illness.  He has seen how giving changes lives. 

While all this was going on with Gideon, Lynn has had migraines and incredible fatigue.  She tried as best she could to take care of Gideon and the other boys, but her body wouldn't let her.  She has had a cough that won't let her sleep well.   Please continue to pray for her.

We appreciate those who continue to fund Gideon and our expenses through this site.  While we seem to be out of the life-threatening stage where we need funds just to keep Gideon alive and pay huge hospital bills, we do continue to have about $200-$400 per month expenses for therapy, oils, and oxygen.  There are many, many people out there who are where we were a year ago.  Please support them first and then Gideon.  Always give as you are felt led to.

Posted on April 22, 2015

Posted on April 22, 2015

Happy 12th Birthday Gideon!   We are so proud of how awesome he is doing.  He made it through a round of pneumonia with no further apparent lung damage.  It looks like this summer we will be able to get back to enjoying some outdoor activities in Idaho such as camping, hiking, and just being free this summer.  

While his lungs are doing while, Gideon is still struggling to gain weight consistently.  We are doing enzymes, probiotics, herbal supplements, essential oils, and everything we can think of.  His appetite has improves ome, but he is still not gaining weight like a soon-to-be teenager should.  Please pray that his body continues to get the nutrients it needs to heal, and that he will reach a tipping point and accelerate in growth.

And, I haven't forgotten about the T-shirts.  Hopefully I'll get some time this summer to sit down and get them out!


I'm having trouble posting images, but the link below is Gideon after donating his hair in honor of his friend Lula.  We all miss her greatly still.  

https://513ced67baaaa13df2f0-c87e80355ecc54d3dbfce9a4568d3633.ssl.cf1.rackcdn.com/6a3318b1-25ac-443d-b3e0-6aac97e7e726_profile.jpg

Posted on March 17, 2015

Posted on March 17, 2015

Gideon has had a cough the past several weeks that would not go away.  Despite that, he had remained fairly active and his oxygen levels were good until last night.  His levels dropped down to 90% and his heart rate went up.  We couldn't get an appointment with his pediatric pulmonologist because he is booked solid, even through his lunch breaks.  Our general practicioner said it sounded like pneumonia and so Gideon is on antibiotics and stereoids. We are scared because his lungs don't have any room for further damage.  

Please pray that the pneumonia would not spread and that it would go away quickly.  And by away...I mean far far away. 

On a lighter note, we would like to start a t-shirt campaign to raise funds for Gideon's on going care.  If you have any creative ideas/slogans/drawings related to children and lungs, please let us know.  Here are some I came up with, I'm sure you can do better:

- "I Breathe For Gideon"

- "No One Breathes Alone" (front) - "Gideon's Mighty Warriors" (back)

- "Every Breath is Magic"

- "My lungs suck." (front)  "Lung disease blows." (back)

- "Would you smoke if you knew it could kill me?"

- "My Breath comes from Above" (front)  "Gideon's Mighty Warriors" (back)



Posted on February 4, 2015

Posted on February 4, 2015

It's time for a general update on Gideon.  The bad and the good are below:

-On January 19th, Gideon had a very important PFT (pulmonary function test) that we where hoping would show significant improvement in his lungs.  While there was some improvement in lung volume, the critical FEV1 test did not show enough statistical improvement to move him out of the range where he is considered a possible lung transplant risk.  This is discouraging as it solidifies the fact that for the forseeable future Gideon may not improve much beyond where he is now.  While we are incredibly happy that his daily qaility of life is more normal, we would like him to show continuous improvement.

-The first real test of Gideon's lung through a sickness seems to be over.  He had bronchitis which required two rounds of antibiotics to tame. Our big concern was that it would spread into his lungs, turn to pneumonia, do more irrepairable damage, and ultimately drive him to a lung transplant.  Thankfully, he seems to have fully recovered and not suffered any long term damage.  This is a HUGE relief as it shows that his body can fight pulmonary illnesses.

-Gideon's weight is the other big problem we are fighting now.  Over the past year he has hung around 50-54 lbs.  At most he would gain half a pound per week, and then lose it. He has been working towards reaching 56lbs in order to get a certain prized Pokemon book. Over the past three weeks he was slowly creeping up to 56, and then on yesterday's weigh in he was at 57.3 lbs! This is the heaviest he has ever been.  Be prepared for when he hits 60lbs, we are going to throw a big party!

-We are coming up on a year when Gideon's good friend, Lula, left us because of cancer.  Pray for him, our family, and Lula's family as we all miss her.

-Be on the lookout for news of a benefit T-shirt for Gideon.  More news soon to come.

Thanks again for all the support, financial and moral.  Your financial support helps us keep up with the monthly costs of stuff our insurance won't cover;  nutritional drinks to keep his weight up, homeopathic doctors, essential oils for pain management and pulmonary improvement, medical equipment odds and ends, etc...  We continue to move in a positive direction thanks to all of you!   

Posted on December 25, 2014

Posted on December 25, 2014

It was about a year ago that we started asking folks to support us through Youcaring.com. Last year on Christmas Eve we were flying home from Cincinnatti Children's Hospital with Gideon thanks to everyone who gave.  We are so grateful for everyone who has supported us and brought us through the year.  We have still have many challenges and unknowns, but it feels doable most of the time.  We have seen Gideon make great progress and are praying that he defies the prediction that his lungs will always be on the verge of needing a transplant.  Your support keeps us afloat!

I'll leave it to Lynn to close out the year:

It's been a tough year but one of such amazing growth. Looking at the pieces FB put together, it had me in tears. Right now, Christmas Eve, I remember a year ago today when Andy, Gid and I were released from the hospital that morning and flew home in time to see our other four boys on Christmas eve. I look at where we were then, not knowing if Gid would be with us from week to week and I'm so incredibly grateful for not just how he is doing, but where our hearts are as a family.

I remember purchasing ticket after ticket to see the specialists in Cincinnati and being humbled at the crazy way all you guys have supported us in SO many ways. We didn't need to worry about the plane tickets, hotels, and other expenses because you've lifted us financially as well as emotionally, spiritually, and physically. When I had to leave my other four boys in order to treat Gideon, I knew they were being loved, entertained, and even spoiled.  We are loved and you guys have been God's hands and feet, carrying us when we couldn't walk.

I see the pictures of us dressed up for Lula's funeral and the wind is knocked out of me. She was a priceless rarity, gave so much to us, and continues to strengthen Gideon and encourage us to live life fully, bravely, and genuinely.

I see these pictures of Gid, remembering how he was on supplemental oxygen 24/7, wheelchair bound, being carried from house to car, unable to walk even to the bathroom, and I can't give words to how grateful I am at where he is now. He's off oxygen 99% of the time, walks, plays, and sword fights. His good days outnumber his bad days and we picture our future with him in it. It has been such a year of loss, indescribable sorrow, tentative hope, and unexpected progress. We sit now, as always, in unfathomable grace, stripped of illusion, knowing the little control we have and resting in the hope of who holds us.

This year I pray we live fully. Love deeply. Love truly.  -Lynn Perkins

https://www.facebook.com/GeriLynnPerkins/posts/10204320464065571?notif_t=like_tagged



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