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Help Gideon Fight Chronic Lung Disease

$29,957raised of $40,000 goal
74%

Organizer: Andy Perkins Beneficiary: Gideon Perkins

Gideon has been diagnosed with an unknown lung disease, severely affecting his health for months now. Help us cover medical expenses and many trips to Cincinnati Children's Hospital for more answers.

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-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 10, 9, 7, 5, & 2. 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 andy@andyandlynn.com
-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
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Updates

Updates

07/31/2014
by Andy Perkins
The text below is from Lynn's Facebook. Enjoy.

So. I'm up starting to pack for our upcoming trip to Cincinnati. Gideon, Isaac, and I are scheduled to leave 10:30 Saturday morning. Ike is beginning to get better. We're still alternating ibuprofen and Tylenol but his fever is staying normal, even when meds start to wane. He was a bit more active tonight and the twitching is almost completely gone. Gid is very tired and was hurting a lot tonight. The math camp he's attending is a half day, four days in a row and I'm hoping it isn't pushing him too much right before the trip.  Andy is hurting but actually went to bed tonight instead of staying up working on the house siding. 
Gid's up and down. He'll have really good days, then really painful days. He has spurts where he's pretty active with his friends, even running a few feet here and there, but not only does he exhaust easily, having to take frequent breaks, but he usually pays for the activity in pain later that night and often days after.
This trip is going to be a whirlwind trip of meetings with the experts in various fields like Pulmonology, immunology, GI, and so on. We'll meet with the lung transplant team to get their input and discuss "long term prognosis" and other fun stuff. We'll discuss the success of treatment (or relative lack of) thus far and hopefully come home with a plan of treatment for the next six months or so.
When first measured after Gid got sick his lung function was at 20% and he collapsed 50 seconds into the six minute walk test. At this point he is able to finish the walk test but is usually exhausted, and his lung function numbers have stayed stubbornly at 25-27% for several months now. All the studies (only on adults, & usually CF patients) show if lung function is above 30% you usually have a greater chance at life without a lung transplant, but if function is below 30%, you usually live longer WITH the lung transplant, even with 5 year survival rates being only 50%. But Gid has been at peace and clear from the beginning that he didn't want a lung transplant. He feels if God is going to heal him it will be with his own lungs and that if he's not going to be healed he doesn't want to go trough all that just to buy a little more time here. As he said, "I'd rather just go home."
That being said, we feel hopeful about having him around here a good bit longer. His lung function numbers aren't budging, but we see good improvement in his stamina, in his daily oxygen saturation levels and in how very infrequently he needs supplemental oxygen these days. 6-7 months ago he was on supplemental oxygen 95% of the time. These days he's OFF it 95% of the time! He's slept with oxygen only one time this last month and needed it in the day for a few minutes maybe once or twice. He is not a well boy, but he is so much further than nine months ago when I didn't know if I'd have him from one day to the next.
And above all else, his heart is amazing. He has grown emotionally and spiritually this last year beyond anything I could describe. His faith, peace, and assurance is humbling. I've told many people about how I always wanted my first son named Isaac but when we found out we were having Gid we knew he wasn't Isaac, and we were certain he was Gideon. We were questioned by some as to why we would name our boy after such a faithless weakling. And that's exactly why. Because in the middle of our helplessness, our weakness, even our faithlessness, he comes and greets us as "Mighty Warrior". Not because we are strong, but because His power is made perfect in our weakness. And we see that promise played out daily in our Gideon's life. The weakest of weak who, when he chooses to submit to God's goodness in the baffling, excruciating pain, rises a Mighty Warrior. I remember vividly the moment last year when I saw that transformation. We didn't know if he would be with is from day to day and I was a sobby mess, but he looked at me calmly and spoke. "I know God could heal me with a miracle. Or he could use the doctors to heal me. Or I could go home to heaven. No matter what, I win."
Tremble, oh forces of evil! Because this four foot, fifty pound warrior comes armed with faith and assurance! And no matter how this ends, he wins.
 — Lynn Perkins
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07/16/2014
by Andy Perkins

It has been incredibly busy since our last update when Gideon was getting his IVIG treatment.  Here some updates:

    When people ask how Gideon is doing, we generally say something like: "He used to be on oxygen 95% of the time, now he is off of it 95% of the time."  Instead of a large oxygen tank on wheels, he uses a small oxygen in a backpack.  I can't remember the last time he had to use supplemental oxygen at night.  This is a huge blessing and let's us sleep better at night.
    However, the random pains continue to haunt Gideon.  He describes them as piercing, stabbing, being bitten, burning skin, and sometime aches in his bones and joints, and what appear to be migraines.  We continue to up his amitryptiline (currently 40mg) to see if there is a threshold at which it helps.  So far, it has reduced the number of nights he is up screaming foe hours, but he is still dealing with excruciating pain.  Continue to pray that this pain just goes away, or we find its source.
    Gideon's six month checkup in Cincinnatti is only a few weeks away.  Instead of me accompanying them, Isaac is able to go this time. He is pumped about being there to help his brother and finally see the hospital and doctors that have been treating him.  We will be checking in with pulmonology, GI, cardiology, immunology, lung transplant, and several others.  Hopefully we can get him off some of the GI medicines and antibiotics.  

    We continue to receive great gifts and support in the mail. It's still greatly needed, thank you.  

    In other family news, I will be traveling to Boston with Isaac and Phineas to celebrate my grandfather's 90th birthday.  It will be a grand adventure traveling there, and a relaxing time with my extended family.  Lynn will be staying in Boise taking care of Gideon, Atti, and Niam, by herself.
    In case you thought we were slacking this summer, we were finally forced to come to terms with the state of our house siding.  It needed attention.  Lacking the funds (and sanity) to pay someone to do it, I am spending my nights and weekends redoing our house with beveled cedar siding.  This means 12hr days in 100 degree weather to get at least 2 sides done before the end of summer.  On the plus side, we get to paint the house.  The boys have had fun picking color schemes.  

    Thank your for continuing to give financially as you can.  Your gifts have made us able to provide medically for Gideon.  Your past gifts have kept us in good shape to provide medically for Gideon, however this trip is going to be more expensive than past ones because the Ronald McDonald House is full at this time.  Lodging and food for a week is under $200 when we can stay there.  Instead, we will be looking at at least several times that in hotels plus food and other miscellaneous expenses.  

 We are grateful even if we can't always vocalize it!

Love,
Andy and Lynn Perkins
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06/27/2014
by Andy Perkins
It's been incredibly tough around here this week. Gideon has been in pretty much constant pain since the  hour IVIG on Tuesday. Migraines, nauseau, achiness, etc.. Lynn had to take him back to the ER on Wednesday for some pain relief and hydration. He did better tonight, but neither Lynn nor I have slept much. He did better tonight, but I wouldn't call it good.

Ohhh, and Lynn got stung 20 times or so today when taunting her bees, without proper gear.

Here is a post from Lynn's Facebook.

Gid was asleep by 8:30 tonight! I'm so grateful! He was hurting pretty badly but instead of giving him the heavy hitter narcotic that barely helps the pain while keeping him awake, I gave him the milder med that makes him sleep in hopes he'll sleep through the pain. I sure hope he stays asleep b/c I'm going to be knocked out on Benadryl due to the 15-20 stings I got as a result of my poor choices today with the hive. For my pride's sake we won't list all the many ways I was asking for it but we will graze the surface with two main points. 1)Always suit FULLY up when working the hive. 2)Never work the hive on two and a half hours of sleep. Thanks again for saving my bootay and being gracious in my stupidity, Sean & Kat. And thanks again for being there for me and doctoring me, TAnn. I'm awfully grateful.
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06/22/2014
by Andy Perkins
Well, summer is on in full swing and things are busy here at the Perkins household.  This is a summer of adjustment for us, but it is still a good summer because we CHOOSE it to be.  Here are few things going on:

  • Gideon will continue his once a month IV steroids for July and August.  We are also going to add IVIG (Privigen) as an experiment to see if it helps with some of the random pain and poor PFT test results.  It is an expensive therapy and can have severe side effects.  The first time we did in back in March he ended up in the ER again due to dehydration.  It is a 6 hour IV and we aren't quite sure what the side effects will be.  Gideon has decided if there is any chance it will help avoid a lung transplant then he wants to try it.   
  • Gideon, Ike, and Lynn will head to Cincinnatti Children's hospital the first week of August for Gideon's 6 month appointment. This will be a critical time as our pulmonologist reviews where Gideon's lung status is, and whether they have stabilized.  At this point, he is still mentioning keeping a lung transplant as a possiblity.  Ugghhh.....
  • Gideon is showing more capability over time to let us resume a somewhat 'normal' family life.  Lynn is able to take the boys swimming and on short day outings. He has a small bottle of oxygen and the wheelchair that enable him to keep up with his brothers.  He is far from being as free as he'd like to be, but he is miles from the barely function boy he was 6 months ago.
  • In the midst of all this, we became aware that our house really needed some attention on the exterior or we would could be facing severe damage later on.  The windows in Gideon's window were literally fallling apart.  Being the purists that we are, we couldn't put vinyl windows in our 100+ year old home, so we went with wood/aluminum clad Marvin insert windows to the tune of $1700.  Not cheap, but in the long run they are worth it.  In addition, I've torn the old cedar siding off the front off the house.  We will be putting up new 3/4x6" VG finger joined pre-primed cedar.  We will need lots of help with scraping and painting when the time comes. Again, we wouldn't feel right putting anything but cedar siding back on the house.  I don't mind the painting every 5 years or so. 
  • My grandfather turns 90 this July 19th!  Ike, Phineas, and I will fly to Boston to join the family in celebrating.  I am looking forward to this break and time with my family.


As always, we appreciate the financial funding and support you all continue to give. Again, we only use the money donated for Gideon's medical expenses.    Your funding helps us keep our family running and financial stress at a minimum.  If you can't give financially, we can always use meals, cleaning, and odds and ends help.

We are blessed to be at this point and continuing to see improvement in Gideon.  Please stay in touch and keep praying. 

Thanks,
Andy Perkins
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06/06/2014
by Andy Perkins
Gideon has completed his fourth month of IV steroid treatment.  Two more months to go according to plan A.  Doctors are trying to figure out plan B since his pulmonary function tests (PFT) results have not changed much.  Please continue to pray for guidance as he is much better than he was 4 months ago, but still is not where he needs to be.

We have begun planning for the 6month checkup trip back to Cincinnatti.  6 months!  It seems like it has been so much longer than that.  Please continue to pray and give as you can and feel led to.  We still don't see the end in sight.

Here are some Facebook posts from Lynn during the past week:

-After two days of treatment:

Gid's hurting. Ike says, Can I hug you, Gid?"
"No."
"Can I kiss your head?"
"Mmm, no."
"Can I just kiss, uh, your glasses?"
"No, Ike, it just hurts too much."
"...Well, can I kiss some of your clean clothes upstairs?"



-
Gid's decided to do the IVIG again, which gave him severe side effects three months ago. "We'll deal with it, Mama." Man, I love this boy's heart. Now we're waiting for insurance approval. Hoops to jump through and whatnot. It looks like it won't be tomorrow, hopefully we can get it in by the beginning of next week. It'll take at least 8 hours when we do it and, if like last time, will leave him throwing up, hurting intensely everywhere, and with a debilitating headache, among other things. The nurses at the chemo lab call the IVIG "nasty". He says if it might help him get better he'll do it and do it sooner rather than wait til next month's treatments.
He's hurting pretty badly this time, but was able to sleep by about ten. We're grateful for that. And I'm grateful for the other boys hearts and how they're rising to the occasion. Ike's of course doing whatever he can to help Gid and me. Opening doors, getting drinks, retrieving forgotten items - you name it, he'll do it. By now I expect this from his big heart. But tonight when I needed to hold Gid while he was hurting, and Ike was busy helping elsewhere, Phineas - without being asked - took Niam, laid down with him, and read to him til he was settled. These boys have amazing hearts and I'm so grateful to see the character and faith developing in them as they choose to persevere through the suffering. I hate this path, would never have chosen it, but I love the beauty I see in these ashes.


 
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05/20/2014
by Andy Perkins
Thanks to everyone who came out for the Aptina Golf Tournament/Benefit for Gideon.  You raised $2291 dollars, and we all had a great time!  This will help us cover the return trip to Cincinnatti in August for Gideon's 6 month checkup.  
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While Gideon is showing improvement in breathing and basic daily functioning, his PFT test numbers still place him in a lung transplant category.  We were hoping to see better numbers after 3 months of IV steroids.  We hold onto those critical numbers as markers of his ability, but I'm wondering if they really reflect his situation.  We can only wait and see....wait and see....hope and pray...
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05/09/2014
by Andy Perkins
Gideon completed this month's 3day IV stereoid treatment yesterday.  Last night he was in considerable pain until he finally fell asleep, in pain.  He says his body hurts all over, and you can tell because he is shuddering, mumbling, and miserable.  He can be like this for a couple of hours and then just fall asleep suddenly.  It's hard to tell how conscouis he is.  He usually doesn't remember these events  We hate these nights.  I wish this pain was just a side effect from the IV stereoids, but he had it even before the treatments.  The stereoids just make it worse.  Pray that this pain goes away over time without us having to resort to medication.  We are actively searching for a local doctor who can help us figure this out.

Next Friday is the Aptina Golf Benefit Tournament with proceeds going to Gideon.  I haven't golfed in a long, long time so it should be fun.  Isaac is going to come along to be my caddy and help with some of the contests.  Something tells me he'll fit right in at the golf course. :)
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05/02/2014
by Andy Perkins
Well, next week Gideon is due for his third of six monthly IV stereoid treatments. We have defintely seen improvement in his overall breathing this month.  At this point last month he was using oxygen again at night, whereas right now he is doing okay at night without it.  He still gets fatigued quickly and has to use supplemental oxygen when going outside the home.  Random pain and some really tough/tired days still occur.  

We continue to recieve great support from everyone.  Gideon continues to touch lives with his courage and determination.  Just this week we received a small gift from a family whom knew him through The Lotus Tree.  We are blessed by these gifts.



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04/21/2014
by Andy Perkins
<img title="Gideon and his 11th Birthday Party." src="https://scontent-a-sea.xx.fbcdn.net/hphotos-prn1/t1.0-9/10177992_10152314717772557_2945535392617658169_n.jpg" alt="" width="720" height="960">

Happy 11th Birthday Gideon!  Saturday we celebrated by having s tuffed animal party and renting a bounce house.  Gideon was in good spirits and with good energy level.  Today, he went out on a dinner date with Lynn, and then we played a round of Dominion.

We are so grateful that his prognosis is looking better and that we can see positive results in his breathing.  Pain management is still tricky, but hopefully that will get better over time.

Here is a Facebook post from Lynn:

Today Gid is eleven. We had plans but it looks like this may be how the day is spent. So goes our life right now and we look at this last weekend and how energetic he was Saturday for his party and we're grateful. He calls my name and we're grateful. I curl up next to him, feel his warmth, feel him breathe, kiss his soft cheek, and we're grateful.
There is so much to reflect on this last year. Several times we thought we were losing him. Several times the doctors made their statements. We've heard how dire his state is and how far he has to go to survive. We've heard there's hope. I've faced my worst fear and stand in overall peace. Excruciating, heart-wrenching, not-okay-with-how-it-is, I'd-change-it-if-I-could, peace. It sounds trite when we say it all boils down to love, but it does. I see the truth potently and it hurts, is in no way easy. May each of us continue to live, to really live, however long that may be.
Happy Birthday, sweet love. I'm grateful for you, your gentle warrior heart, and your perspective that helps me see.


<img src="https://fbcdn-sphotos-d-a.akamaihd.net/hphotos-ak-prn2/t1.0-9/p403x403/10152538_10202669460031502_1387781830471656837_n.jpg" alt="" width="403" height="537">




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04/08/2014
by Andy Perkins
Today was a big day towards Gideon's long term recovery.  It was the first of three days getting his monthly dose of IV steroids at St.Lukes in Boise.  He goes back tomorrow and Wednesday.  He has an IV in his arm, which fortunately he says doesn't bother him that much.  However, he has been in pain all day, naseaus, and generally miserable.   Pray that the side effects subside and that the treatments get easier.  The first week of each month for the next 5 months is going to be rough for Gideon.  Please pray for his perspective, strength, and continued healing. 

Here are some posts from Lynn's Facebook:

-Morning, First post:
Gid's scared. He knows how bad the side effects can be and is trying not to anticipate and dread them. Trying to keep a positive outlook.
Also please pray for the folks keeping the other kids this week. Gid getting treatments brings up their fears and throws them off again. These ladies are taking my boys in addition to their own kids while mine are emotional and in higher need.

-Morning, Second Post:
IV meds haven't started yet but Gid did exceptionally well getting the IV put in. It's in his favorite spot to have one. Hopefully it'll last all three days so no more poking.
We're waiting on the meds from the pharmacy. Watching The Pirate Fairy and about to do some music therapy.


-Afternoon, Third Post:
IVs are done. He's pretty nauseous and has a metallic taste in his mouth. His temp, heart rate, and blood pressure are up so they're keeping him for observation for a while. He's feeling nasty but keeping a good attitude so far. He came in this morning and passed out origami to the nurses and a couple patients. He's determined to keep a positive perspective and spread joy during this time.

<img title="Gideon after IV steroids" src="http://513ced67baaaa13df2f0-c87e80355ecc54d3dbfce9a4568d3633.r35.cf1.rackcdn.com/67efa091-cdf2-4d02-9c71-94acd6698dba.jpg" alt="Gideon after IV steroids" width="526" height="526">



-Afternoon, Fourth Post:
Somebubba got his bum kicked by treatments today. We're grateful for the gorgeous weather and being home, though!


<img title="Butt kicked" src="http://513ced67baaaa13df2f0-c87e80355ecc54d3dbfce9a4568d3633.r35.cf1.rackcdn.com/8d800253-4e59-41b6-90ca-ed3a7dddd819.jpg" alt="Butt kicked" width="526" height="526">


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03/31/2014
by Andy Perkins
My work, Aptina Imaging, is donating the proceeds of their 2014 Golf Tournament to Gideon's Cause. Don't worry if you don't play golf well-the scramble style evens out the teams. I'm going to hit the driving range once or twice and call it good.
See the attached file and details below to Register.

When: May 19th, Friday
Where: Ridgecrest Golf Course in Nampa
Time: 11am, shotgun start.
Teams: Teams of 4. Scramble style. Individuals can register and be placed on a team.
Cost: $65 per person. Includes 18 holes, cart, and possible prizes.

Register by April 10th.

Checks payable to Betty Johnson or Becky Philipps. Comment here or Email me: theeternalstudent@gmail.com if you want to register.


<img title="http://513ced67baaaa13df2f0-c87e80355ecc54d3dbfce9a4568d3633.r35.cf1.rackcdn.com/7fe89129-7ea8-47fb-a283-5c6fe9f9f64a.jpg" src="http://513ced67baaaa13df2f0-c87e80355ecc54d3dbfce9a4568d3633.r35.cf1.rackcdn.com/7fe89129-7ea8-47fb-a283-5c6fe9f9f64a.jpg" alt="Aptina Golf Tournament" width="923" height="681">
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03/29/2014
by Andy Perkins
Stinker.  Gideon's 02 levels dropped below 92% last night so we had to put him on 0.5 lpm supplemental oxygen.  This is discouraging, especially combined with his pain seeming to go up.  The lack of progress we saw in Cincinnatti is discouraging. We are continuing working with Gid on the physical, spiritual, and emotional levels.  

Spiritually,He knows the truth of who he is and what God has made him for.  

Emotionaly, anxiety and stress are definite factors, but it's hard to quantify just how much.  The lungs are where the emotions of grief and loss can be held and cause problems.  Grief and Happiness are meant to flow in and out of our lives in balance, much like breathing in and out.  You cannot have one without the other, and you can't hold on or ignore one. The grieving for Lula, cousin Elie, his cat Muffin, and sudden removal of friend Jerome is still a big factor and could be hampering his getting better, if not part of the initial cause.  

Physically, he is due for his monthly IV steroids next week.  Boise has a pediatric infusion center so we are working out the details with our Boise pulmonologist on how we will do it. This round of IV steroids should give us a better idea of how his immune system and lungs respond.  

Thanks again for your continued support.  We aren't able to respond to all the emails and letters.  Please know that we do appreciate them and keep us going.

-Andy
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03/29/2014
by Andy Perkins
Stinker.  Gideon's 02 levels dropped below 92% last night so we had to put him on 0.5 lpm supplemental oxygen.  This is discouraging, especially combined with his pain seeming to go up.  The lack of progress we saw in Cincinnatti is discouraging. We are continuing working with Gid on the physical, spiritual, and emotional levels.  

Spiritually,He knows the truth of who he is and what God has made him for.  

Emotionaly, anxiety and stress are definite factors, but it's hard to quantify just how much.  The lungs are where the emotions of grief and loss can be held and cause problems.  Grief and Happiness are meant to flow in and out of our lives in balance, much like breathing in and out.  You cannot have one without the other, and you can't hold on or ignore one. The grieving for Lula, cousin Elie, his cat Muffin, and sudden removal of friend Jerome is still a big factor and could be hampering his getting better, if not part of the initial cause.  

Physically, he is due for his monthly IV steroids next week.  Boise has a pediatric infusion center so we are working out the details with our Boise pulmonologist on how we will do it. This round of IV steroids should give us a better idea of how his immune system and lungs respond.  

Thanks again for your continued support.  We aren't able to respond to all the emails and letters.  Please know that we do appreciate them and keep us going.

-Andy
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03/25/2014
by Andy Perkins
We have been back home for a week now and Gideon is still off supplemental oxygen.  It has been nice to have him be able to move around freely without being tied to a line.  Especially now that the weather is getting nice and we can be outside.  He does get tired easily so he is still in a wheelchair most of the time we go out.

However, it is not all clear sailing.  He is still not eating well and has significant chest and joint pains.  On his own, he would probably eat/drink around 500-800 calories per day, which is not nearly enough for a 10yr old boy.  His general joint and bone pain continue, along with the healing that his body is doing from the lung biopsy.
  • Pray that his low appetite is simply from him swallowing so much mucus from his lungs.  He doesn't spit, so he is swallowing mucus from his lungs.  Once the inflammation goes down then there should be less mucus, and hopefully his appetite returns.
  • We are still not sure how to treat his pain.  We have been at 12.5mg of amitriptyline (Elavil) and will up that 20 or 25mg/day to see if it helps.  If anyboyd knows of a good psychiatrist in Boise who deals with pain medication let us know.  We are winging this with help from Cincinnati's Pain management.
  • St. Luke's has a pediatric infusion center so we can do Gideon's monthly IV steroids on an outpatient basis.  He will have an IV in him for 3 days.  Hopefully, the IV will last and he won't have to be repoked.
Thanks again for your support and continuing to follow Gideon's story.  We have made significant progress but we still have a long way to go. 

-Andy and Lynn Perkins
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03/18/2014
by Andy Perkins
Today we received good news that we have been waiting so long for.  It looks like we have a solid plan forward and Gideon is already showing progress.  He has been off oxygen for over a week now.  That in itself is huge, as it can simplify getting around significantly.  Below are some more tidbits of good news.

-We had a quick visit to the ER early Saturday morning due to a stomach bug.  Some Zofran to help the nauseau and a rehydrating with IV fluids had Gid back to normal.  He was a champ and didn't complain about thet IV, even when the nurse had some trouble with finding his vein.

-Gid completed the 6 minute walk test. Last time he tried it in December he collapsed after 50 seconds.

-We can do remaining monthly IVs in Boise. No traveling to Salt Lake or Cincy.

-Doc is okay skipping IVIG if Gid continues to improve. The IVIG gave Gideon severe migraines as a side effect for a couple days.  

-Doc was encouraged by latest PFT. His total lung volume increased by 50% and puts him at 64% of population. The critical number for Gideon is the volume he exhales in the first second. He had a 30% increase which puts him at 27% of the population. THIS NUMBER NEEDS BE STABLE AT 50% to remove consideration of a lung transplant. Every little gain here is critical for Gideon because it keeps CO2 and acid out of his blood.

-Doc says he is okay skipping 3 month checkup and just doing 6 month in Cincy. He feels strongly it was a virus that started this and that there usually isn't a recurrence. This means we are potentially looking at just one more trip to Cincinnati!

-The next few months will give us an idea of how much lung capacity we can get back.  If we raech 50% and stay there, then we are happy.  But, we are asking for more and I'm sure you are to.

<img title="St. Patrick's Day Gid" src="https://scontent-b-lga.xx.fbcdn.net/hphotos-prn2/t1.0-9/1896764_10152240855687557_1134824438_n.jpg" alt="" width="720" height="960">
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03/14/2014
by Andy Perkins

This update is long overdue and I can't due justice to all that has occured the past few days.  So, we'll due it bullet point style:

  • Gideon has been off oxygen for over a week now.  This started the night before the lung biopsy.  The doctors don't know exactly why because it started before the steroid treatments.  We suspect the low dose of amitryptilin we started on March 21 is doing something.
  • Pulmonologists and Immunology have done tons of tests looking for an immune or genetic problem, but the all come back negative. These tests include looking for a lymphomatic B-cell problem, alveoli surfactant problem, and other stuff. All the negative test results indicate his immune system is fine, but for some reason it didn't stop after fighting an initial virus or something else. Perhaps there is still something to fight that we haven't found or know about.
  • Only his lungs show damage from the T-type lymphocells.  His esophagus biopsy did not show the same type of immune response.  At this point we don't believe any other organs have been or are being damaged.
  • Did I mention he has been off oxygen for over a week and his 02 stays above 94% even under exercise.  He still gets fatigued easy, but we think we can work on that.
  • His first IVIG caused severe migraines the day after.  Plenty of fluids an alternating tylonal and ibuprofin led to a pain free day.  Doc says migranines could continue with first 3 IVIGs then they may go away.  THey are also more likely if your body actually has enough IG.  We are going to question the ned for further IVIGs.
  • The plan is to do 3day IV steroid treatments once a month for the next 6 months.  We may never know the original cause, but the pathology of the lung biopsy is indicating that shutting down the lymphocytes that are restricing his airways is the best course of action.  There will be a 3month and 6 month checkup in Cincinnati.  Hopefully we can do the other IVs in Boise, if not Salt Lake.
  • Gideon and I have been having a good time at the Ronald McDonald House.  His attitude and perspective have been amazing.  The first night after Lynn left the hospital was rough.  He unplugged himself from all his sensors, calmly grabbed his faithful Violet unicorn, and proceeded to walk out the door.  He was determined to walk home.  We talked about how he really only has two choices; 1) make this a miserable time, 2) make the best of the situation and actually look to have a good time.  We talked about how crappy this is, how nobody wants this, but that there is still amazing things that can happen.  It is all about our perspective.  Since then he has been a joy to be with, even under the pain of his migraines and general discomfort.

It's hard to express how much your support means.  Every little bit of love you throw this way is felt.  We are grateful we have such a support system. Not everybody does, but everyone should.

I'll leave you with two videos that reflect how much gain we've seen this week.  This is a tribute to the faith and support from all of you.  Really, click on the links:

http://youtu.be/GkPWHkcRtAY

http://youtu.be/eOq77qVjoE4

<img src="http://513ced67baaaa13df2f0-c87e80355ecc54d3dbfce9a4568d3633.r35.cf1.rackcdn.com/3e3c41c3-39ec-4d2c-bceb-e74d4909d8f1.jpg" alt="Lung Biopsy Introspection" width="600" height="800">




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03/08/2014
by Andy Perkins
Gideon is now sleeping soundly after having to work through mom leaving to go back to Boise to be with the other boys.  He did fine until Grampa and Nana left and the room shrank considerably as it was just he and Dad. I think the steroids are making it harder for him to regulate his emotions and initially he unplugged himself from his sensors, calmly took faithful Violet, and headed for the door.  His plan was to go home no matter what.  He has a strong spirit and same determination/endurance as his Dad when his mind is set. We talked intensely for some time about how hard this was going to be without Mom, but that he has a choice about making the best of it, or it being miserable.  We have everything we need to make this a good time.  Embrace the frustration, the sadness, the waves of emotion and use that energy to create something new.  He's held strong with Lynn's motherly emotional support, but now it is time for he and Dad to hold strong together.   
He hasn't been on oxygen in the two days I've been here.  This is awesome.  Normally he needs oxygen while sleeping just to stay above 90% O2.  He is at 97% O2 and even better is that his heart rate is at 67bpm.  Normally it is around 110-130bpm, which makes us worry about pulmonary hypertension in the long run.  Pray that this improvement continues.  It's too soon for the steroids to work and the azithromycin to have an anti-inflammatory effect, so it must be your prayers doing the work.  Keep it up!

The lung biopsy showed minimal permanent scarring (old callogen), some new callogen (possibly reversible), but lots of lymphocytic inflammation which is reversible.  The immune system thinks there is still something to fight, even though there isn't.  So it is just doing damage to the airways.  They are not sure why the body does this, but sometimes the immune system doesn;t shut down.  The basic plan over the next six months is to blast away the lymphocyte immune cells that are restictricting his airways with IV steroids, and use azithromycin to bring the inflammation down.  The IV steroids will be done 3 succesive days once a month, and the azithromycin on Monday, Wednesday, Friday.   The pulmonologist here in Cincinnati wants to see Gid at 3 months and 6 months.  Hopefully we can do the IV steroids in Boise, if not we may have to drive to Salt Lake once a month.  

A secondary cause of Gideon's problem is the presence of fat in the small alveoli balloon structures where oxygen/blood exhange occurs.  The inside surface has surfactants and other stuff that acts as trash collectors.  Normally people have about 1-10% fat content in the alveoli, but Gideon has 30%.  There are some genetic reasons for this which we are checking on, but most likely it is due to his reflux and food going down into his lungs.  We may move from an antacid type medicine, to something that targets the valve specifically and relaxes it so there is less reflux.  Surgical intervention was mentioned, but I think there alot more diet/medicine changes to try first.

Tomorrow is his last day of IV steroids for this month.  Gid and I will be here until at least the end of this week doing followup appointments.  Lynn's parents leave tomorrow, but my parents will be in town tomorrow, and my brother Dan and his family should come later this week.  We welcome any other visitors as well.  Thanks to those who have offered local support.  Don't be discouraged if we haven't responded to you yet.  Stay on call, we may need you later this week!

And as a point of reflection.  Just a few weeks ago I was feeling concerned about how to keep paying for the flights to Cincinnati and other unknown expenses.  You all have come on strong!  I still can't thank Lula enough for her gift of supporting Gideon.  I continue to try to wrap my head around how her life has rippled into so many others. The girl was deliberate and gifted in that regard.  She is strong in our thoughts.
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03/07/2014
by Andy Perkins
Gideon has moved from the PICU and is recovering from the lung biopsy well.  Apparently he is feeling well enough that he called Apple&Eve customer service to tell them how much he likes their white grape juice.  I'm sure a positive call like that surprised customer service )
  We got to Skype with him today and he emjpyed showing the brothers his holes where they went into his chest.  It was especially good for Isaac to see Gideon doing well.   He really really really doesn't want Gideon to have a lung transplant.  And the pulmonologist offered a big ray of hope today with some of the initial results coming back.  Here is Lynn's FB post to explain some:


From Lynn's Facebook Post yesterday:
Gid's surprising all the doctors, has been off oxygen almost all day and is slowly weaning down pain meds.
Before we came for the biopsy, doctors were giving us the lung transplant notebook, trying to schedule meetings with the transplant team and in general making sure we were prepared, knowing how very serious Gid's condition is. Making sure we knew that lots of scarring would leave us no hope beyond transplant.
Today the pulmonologist came in with early biopsy results that show some old scarring, some early scarring, and lots of inflammation. Doctors say scarring is irreversible, early scarring is sometimes reversible, and inflammation is often reversible. Our doctor sees it as a good possibility we can get Gideon to 40-60% lung capacity, which is livable without a transplant. In his words, if we got Gid to that point, he wouldn't be running any marathons, but he would be able to conduct daily living.
This is a wonderful ray of hope! We still have a long road ahead of us and are not assured success, but that road now contains a distinct hope that we'll be seeing our boy grow into a man.


<img src="http://513ced67baaaa13df2f0-c87e80355ecc54d3dbfce9a4568d3633.r35.cf1.rackcdn.com/c7aa7b2d-cacf-4ab9-a914-e13295ddc6aa.jpg" alt="" width="526" height="394">
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03/05/2014
by Andy Perkins
The lung biopsy went well yesterday, but Gideon was in considerable pain afterwards and has had trouble sleeping.  Here are a couple of Facebook updates from Lynn who is with him in Cincinnatti.

From Lynn's Facebook updates:
It's been quite an up and down day. Gid's had such an amazing attitude but also had some pretty nasty lows. When I went back to him after surgery I walked into his section and could just hear him crying out for me, scared and in pain. I couldn't find his room but could hear him calling. I thought my heart was being ripped out! He was in a lot of pain but we were able to get it a lot better though we're still working out kinks. 
He'd only had grape juice and grapes to eat when he threw up tonight. Folks, it looked like my son was throwing up LARGE amounts blood. I again thought my heart was not going to make it. 
He's been awake since 5:30 this morning and only slept during the surgery and is still awake at 11:30. He's lamented all the things he can't do for himself and how frustrating it is. And he's talked about dying and some of his fears and of course off and on throughout the day has cried for Lula. 
But he's also periodically asked me how I'm doing and gone on and on about how grateful he is for little things like cold washcloths and the "boots" that help his leg circulation. Then here a second ago he says, "It's really been a wonderful day. You know, considering the circumstances." *sigh* I love that boy.


And, an example of Gid's humor and attitude through this:
Med delivery guy walks in.
Gid: "Is your name Mike?"
Guy: "No, it's Ryan. What's your name?"
Gid: "Gideon."
Ryan: "I have a friend named Gideon."
Gid: "Oh! Is it me?"

<img title="Gideon after lung biopsy" src="http://513ced67baaaa13df2f0-c87e80355ecc54d3dbfce9a4568d3633.r35.cf1.rackcdn.com/471d0a69-a35c-4879-93a5-a348f8d9cdf2.jpg" alt="Gideon after lung biopsy" width="403" height="537">


----------------

I will continue to move the fundraising goal as needed.  We are humbled by everybody's support.  I pray everyone who has such needs is surrounded by people like you.  
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03/04/2014
by Andy Perkins
It's been an emotional past couple of days as we had Lula Coe's memorial service/celebration on Saturday, a cancelled flight to Cincinnati on Sunday, and then a full day on Monday to get to Cincinnati.  

First, Lula Coe's memorial service was everything you want a funeral for your child to be, if you must go through it.  She requested no black, simply bright mismatched colors, unicorn magic, and fairy dust.  So we showed up fully honoring her request.  If giving is a reflection of love, if there is any doubt as to how much this girl loved and how much she was loved, then consider the fact that Lula's request to have people give for Gideon has doubled what we had before.  We don't have words, only gratitude.    



As Mike Freeman officiated the ceremony he encouraged everyone to feel the great tides of grief, followed by peace and joy.  The greater the grief, the greater the joy will follow.  This was true for Lynn and I, but especially Gideon who is having to fathom greater depths of grief and joy than most 10yr olds should.  After the service and lighting 100 lanterns for Lula, Gideon described the service as exactly how a funeral should be.  I could see he was relieved it was over, but glad he went and rode the emotions through it.

<img title="Dressed for Lula's memorial service" src="http://513ced67baaaa13df2f0-c87e80355ecc54d3dbfce9a4568d3633.r35.cf1.rackcdn.com/e67665b8-8030-406c-a768-109502756667.jpg" alt="Dressed for Lula's memorial service" width="540" height="720">

He has been even stronger than before in the midst of what he faces Tuesday.  He wasn't discouraged by the canceled flight on Sunday due to weather.  He woke up several times Sunday night wondering if it was time to go.  He was in great spirits Monday when I left them at the Boise airport. He even requested Lynn wear the same outfit that she wore to Lula's memorial complete with Tutu and makeup. This picture taken later that night by Lynn of Gideon and his Papa and Grandpa pretty sums up how he is feeling now.  
<img title="Gideon with his two Grandfathers, Dana and Gerry, at the Ronald McDonald house." src="http://513ced67baaaa13df2f0-c87e80355ecc54d3dbfce9a4568d3633.r35.cf1.rackcdn.com/b3205fdb-47ca-4413-93e2-a2bc0c91e835.jpg" alt="" width="960" height="720">


The lung biopsy is early Tuesday morning. They have to be at the hospital at 6am. Pray that he is not congested and the anesthesiologist says he is okay for the surgery.  Actually, scratch that.  Pray that the right decisions are made and that we can go along with them and enjoy the journey that we are already on.

As a closing picture, here is Lynn and Gideon on the flight from Boise to Chicago.

<img title="Lynn and Gideon on flight from Boise to Chicago" src="http://513ced67baaaa13df2f0-c87e80355ecc54d3dbfce9a4568d3633.r35.cf1.rackcdn.com/0a8b64ff-e419-4211-8384-27fa1f4de744.jpg" alt="" width="403" height="537">


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02/28/2014
by Andy Perkins
For those who cannot celebrate Lula's life in person at the Vineyard on Saturday, March 1st, at 6pm there will be a live stream at http://www.ustream.tv/channel/vineyardboise.  6pm Mountain time is 8pm Eastern time for all those on the East Coast.  She and her mom had been planning this for awhile and it is bound to have Lula's presence all throughout it.

Thank you so much for everyone who has and is giving in honor of Lula.  It is incredible and humbling to see how many people loved her. Her love and spirit in the midst of fighting cancer moved many people, and she continues to do so.

The following link will take you to her obituary:
http://www.legacy.com/obituaries/idahostatesman/obituary.aspx?n=lula-coe&pid=169892287&fhid=6415
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02/25/2014
by Andy Perkins
On Sunday night Gideon's friend, Lula Coe, passed away and is now at peace from her long battle with cancer.  Gideon is sad and will miss his friend who understood so well the challenges of beings sick as a child.  We are honored to have known you here Lula.

Below if from Lynn's Facebook post:
It's been a sad, sad day for Gideon hurting at losing Lula, but filled with little stories of her mannerisms, her heart, and how she strengthened & inspired him. And here we are at the end of the day reminded once more of her huge heart and being strengthened and encouraged by her again as we beyond doubt will continue to be. Thank you, Lula Coe for being exactly who you were! And thank you, Kat and Sean for allowing us in.



http://www.jrn.com/kivitv/news/Cancer-battle-brings-Last-Unicorn-to-Boise-233118101.html<img title="Lula Coe" src="http://513ced67baaaa13df2f0-c87e80355ecc54d3dbfce9a4568d3633.r35.cf1.rackcdn.com/43fa2049-48e4-453b-8a96-a4f25924738a.jpg" alt="Lula Coe" width="703" height="468">
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02/21/2014
by Andy Perkins
Wow. That's an understatement. WOW!  $10,000 is a lot of money that you all have supported us with.

I have to be honest.  I was nervous a few weeks ago when fincancial support seem to stall some.  I thought we'd be lucky to reach $10k.  Still, the current goal of $13k looks huge to me and I wonder how it looks from the outside.  Part of me wonders why would people keep giving.  Especially those of who who have given once.  These are thoughts that bounce in my head; Why give again?, let somebody else carry the burden,  the amount I give isn't really going to help in comparison to what they need, do they really need that much?, I have my own needs to meet,  and so on.  

But another side of me knows why you keep giving.  It's the same reason why we continue to keep giving to others even in the midst of this.  Because you know that every little bit does help.  You fell better when you open your heart and just give, no matter whether you can see it's impact or not.  You know that the burden is lighter if everybody helps.  
 
-$25 is another paid for checked bag for our flights.  
-$5 is another meal at the hospital.
-$100 lets us choose better flights that cut the flight time from 11 hours to 6 hours.  This is a big deal for Gideon who has to travel with oxygen supplied by batteries.  Also, if he gets tired and pain hits in the airport it is no fun for anyone.  
-$700 pays for a round trip ticket. 
-$25 pays for a night at the Ronald McDonald House which includes meals as well.
-$90 pays for one night at a hotel if we need to stay
-$25 covers meals for one person for one or two days
-$50 helps pay for a stress-relieving visit to an aquarium or museum.

We know you work hard for your money and we are blessed that you give it.  We're not living large here folks.  Every bit is providing peace and helping to light the path for the next step.  If I don't have to worry about how we are going to pay for getting to Cincinnati, then it let's me focus on my family.  We have some emergency money build up, but it's nothing that will cover this transoprtation to Cincinatti and medical bills.  I'd be surprised if most family budgets could cover this completely, although I'd love to be proved wrong. 

I don't know how many more trips to Cincinnati we will need after the lung biopsy on March 4th.  We will try to do followup IV therapy in Boise, but I expect at least 3 more trips to Cincinnati this year for followups and such.  I will continue to move the fundraising goal up as needed.  Although it feels like a stab in the heart everytime I see that number get larger.  

We won't even begin to talk about the case of a lung transplant because where not going to need it, right?

Love you all, 
Andy
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02/19/2014
by Andy Perkins
This update is a mainly big Thank You! for those of you who took time wherever you were to pray for Gideon and his friend Lula last night. Thank You, thank you, and thank you. 


In case you hadn't seen it, we posted this video for you: http://www.youtube.com/watch?v=JVfC1GO9MQ4&feature=player_embedded

Also, an update from Lynn posted as a comment on the Facebook Event page "Praying for Gideon Perkins: https://www.facebook.com/events/285500378266685/ set up our friend Karen Monahan and Lynn's sister Willa.  Thank you so much Karen and Willa for organizing the prayer event.


At this point Gideon's lungs are functioning at about 20% of their capacity. He will not survive if he stays in this condition. The doctors say if he had cystic fibrosis then we would be going straight to a lung transplant waiting list right now since we would know the functioning had no chance of improving. But since we don't have a diagnosis, we're hoping there's a chance Gideon's state is reversible. If we can get him up to 40% lung capacity he can survive. The doctors' best theory at this point is that Gideon is experiencing an autoimmune disorder of some sort and his body is attacking itself.
Gid has a lung biopsy scheduled for March 4 at 7:30 a.m. Eastern. They'll go between his ribs and take a piece of his lung roughly the size of a half dollar, a little thicker. We're hoping to find inflammation because scarring is irreversible. He'll probably spend 2-5 days recovering in ICU with a drainage tube in his chest and a breathing tube down his throat. The lungs often leak air after this procedure and there's a chance of lung collapse.
Results of the lung biopsy will take about five days. We're hoping after that to begin figuring out an intense therapy, using a cocktail of drugs and strong IV steroids. The biopsy results will direct the decision about what meds will be used and the doctor says we'll likely be using experimental therapies. Our hope is to spend 1-3 weeks in Cincinnati figuring out therapy after the biopsy then transfer care back home in Boise. We'll then spend about six months treating in the hope it will improve Gid's condition. If we can't get him functioning at 40% capacity, the doctors will recommend lung transplant at that point. Lung transplant is actually riskier than heart transplants because of their constant exposure to germs and there is only a 50% five year survival rate, with it dropping each year after that. Right now Gideon says if we get to that point he does not want a transplant to buy him time, that he'd rather go home earlier. I assured him we'd discuss that if we got to that point.
Gid and I will be flying out to Cincinnati alone together for the biopsy Sunday, March 2. Andy will stay with our other four boys that week, flying out to Cincinnati Friday, March 7. I will fly home Saturday, March 8 to be with the other boys while Andy and Gideon stay in Cincinnati until a therapy is figured out and transferred to Boise. We feel this will give our other four boys the best continuity and hope for security. This will be really difficult for Gideon, as he hasn't liked to be away from me long lately and prefers me when he's in a lot of pain or anxiety. It is a good opportunity for he and I both to trust God with his care rather than me.
Please pray for the other four boys, too: Isaac (9), Phineas (8 in two weeks), Atticus (5), and Niam (2). Not only do they worry about losing Gideon but they've had to be away from Andy and I a lot lately in the middle of this all. This nasty time has served to strengthen Gideon's faith. We are praying the same for the other four boys, that God's peace and power will be tangible to them and that they'll grow closer to God through this. Isaac especially has begged to go to Cincinnati with Gideon and has a terrible time being apart from him, begging to sleep with him at night and jumping to serve him any time he even suspects Gid might have a need. Pray Ike's tender heart won't grow bitter, but softer.
I can't possibly tell you how much everyone's support means to us. We weren't designed to walk alone and there's no way we could do this without people fighting for us in prayer and supporting us in all the physical ways as well. I've obviously been hurting intensely, but felt God carrying me and I'm humbled. As I scrolled through, seeing all the folks committed to pray for us Monday I was in tears again and can't express how grateful I am. Thank you.
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02/11/2014
by Andy Perkins
The sense of urgency is from the pulmonoligist is getting stronger.  I feel like this is the point in the journey where the road starts to feel like it is never going to end.  You can't even see around the corner anymore.  You just have to trust that others have traveled this road before and made it.  

Last week we were in Cincinnati for a bronchoscopy, upper GI, and impedance probe.  So far the bronchoscopy cultures are not showing anything significant, his upper GI looks fine, and his reflux doesn't look remarkable.  We are still waiting on final results, but it looks like more negative test results.  Good in one sense, but bad in another because we still don't know what we are fighting.    

The pulmonologist wants us to return to Cincinnati ASAP for a more extensive lung biopsy.  They will take a about a 1x1x1/4inch section of his lung.  Recovery will be 3-5 days in ICU.  The susupicion is that his immune system is attacking his lungs for some reason.    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.   

The logistics of getting back to Cincinnati so quickly are overwhelming right now.  We have to figure out how to care for the other 4 boys without knowing exactly how long Gideon will need to be in Cincinnati.  Lynn doesn't want to be apart from any of them, but taking them all to Cincinnatti right now is not feasible without knowing how long we may be there. 

Please continue to pray for peace.  Your financial gifts help keep us keep afloat and encourage us.  Every bit helps, especially since we may be looking at many more trips to Cincinnati over the next several months.  
 
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02/03/2014
by Andy Perkins
Facebook update from Lynn below:

The procedures tomorrow will do some testing on Gid's upper GI tract, leaving a tube in his nose/upper GI for 24 hours to measure acid fluctuation. The bronchoscope will scrape samples from the lungs as well as take mucus samples to determine what direction of treatment to take. We'll do a surgery consult and hopefully pain management consult tomorrow afternoon. Treatment at this point seems like it will be for the main point of getting Gideon in prime condition to undergo a more invasive procedure that goes through the ribs to take samples of his lungs. that procedure will probably in another three to four weeks. After that treatment he'd spend 3-5 days in intensive care recovering. Those results would hopefully tell us how extensive the damage is, if there's any hope for reversal of that damage and then perhaps broach the subject of lung transplants.

Update #2 for Monday: Last night was rough with lots of pain, even through the codeine. He didn't get to sleep til after 1:30, sometime toward the end of The Last Unicorn. I went to sleep a bit after that but woke several times to check oxygen and whatnot. We were up at 7 for our pre-op appointments. Hid did another PFT (pulmonary function test) in which he performed at 40% and 20% of his expected
capacity in two different areas.
We met up with the beloved Becka Ridge Blackburn and her hairier half and went to a MAGNIFICENT lunch at Tom and Chee, a tomato soup and grilled cheese place. We're talking fried banana and Gouda cheese on a donut; salt & vinegar chips, ham, pepperoni, cheese on sourdough bread; and about 30-40 other grilled cheese sandwiches! Then along with Papa Dana, Oma Joan, Aunt , Uncle Budge Dan, and cousins Harper & Asher, we made the much anticipated trip to the aquarium. it was all he dreamed it would be. He was in heaven and barely used his wheelchair the entire time! I was in tears at closing time when I got to lie next to him alone in the shark tunnel to the sound of soothing music and he just reached over, took my hand, and sighed a happy sigh. His spirits are high and he's determined to be brave tomorrow.


<img title="Gideon with a white alligator" src="https://scontent-a.xx.fbcdn.net/hphotos-frc1/t1/q71/s720x720/400593_10202173457791756_672540001_n.jpg" alt="Gideon with a white alligator" width="540" height="720">

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02/01/2014
by Andy Perkins
The following update is a Facebook post from Lynn:

Today wasn't easy. We got an email from Gid's Cinci lung dr talking about the severity of Gid's condition and the possibility we may need to extend our upcoming stay in Cincinnati Children's by several weeks. We asked if the therapy could possibly be done in Boise. It looks like it MIGHT be possible but we won't know til after the procedures this Tuesday. In that case we would fly back to Boise, do treatments, and return to Cincinnati the end of Feb sometime. The dr also mentioned a lung transplant being a possibility if initial therapies don't yield good enough results.
Our van also died last night. And I slipped and bit it hard on the ice, hurting my back. And my sprained hand hurts. And I'm hormonal. And I'm dying at the thought of leaving my other four babies this Sunday not knowing when I'll see them again.
I told Kat about the extended stay and possibility of lung transplant. Her response was a theological masterpiece. "Shit. Well praise God, right?"
Yes. Yes, yes, yes, yes, yes, yes, yes. That. It IS that. It sucks and it hurts and this place is not our home. And her faith in the middle of her unbearable pain turns and lifts me up. It is simple but it is not trite. God is worthy and good. Not because life is what we want. Not because we always like Him. Not because we feel like it. NOT because we feel like it. But because. He. IS.
Shit. Well, praise God, right?

<img title="Gideon walking with wheelchair" src="https://scontent-b-sea.xx.fbcdn.net/hphotos-prn2/t1/1551756_10202154351354107_287363556_n.jpg" alt="Gideon Walking" width="960" height="960">

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01/24/2014
by Andy Perkins
We have been fighting a virus the past week or so in the family.  Gideon's pain was pretty bad last week due to the whatever it is going around the family.  Normally ibuprofin and acetamitophin have dealt with the pain, but they were barely doing the job. We have a  decided to put him on penicillin just to keep anything from infecting his lungs again.  We also have some stronger pain meds just in case his pain returns.  Thankfully it hasn't returned to that level again. 

We are less than 2 weeks away from returning to Cincinnati for a Bronchoscopy, upper GI, and an impedance probe.  Gideon will be admitted Teusday morning around 6am and hopefully be released Wednesday morning, depending on the results of the lung biopsy and GI impedance tests.  There is always a chance that they will keep him indefinitely depending upon what they find. 

Thankfully, we managed to get to get a 4 day short-term room at the Ronald McDonald House.  If we stay past Friday, then we will have to be put on the waiting list again for a room.

On our last visit to Cincinnati, Gideon was heart broken that we didn't get a chance to visit the Newport Aquarium.  This trip, we are planning on getting to the aquarium on Monday, before he is admitted on Tuesday.  Pray that there are no surprises and that he is able to enjoy the aquarium. 

We appreciate your prayers, financial support, and help as we continue to figure out how to best help Gideon.  This is a pretty big transition time for us as a family as we still struggle to find a daily 'norm'.  Not that we expect too much of a 'normal' schedule while homeschooling 5 young boys.  Lynn doesn't have the freedom to get out of the house as much as she did before, which makes it difficult to shedule appointments and do just plain fun stuff with the boys. I think we are doing okay considering the changes we have had to make in how flexible we are and what we can do.  Again, we appreciate all the love we have recieved. 
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01/07/2014
by Andy Perkins
Welcome to the New Year!  We had an enjoyable Christmas and New Year's at home after our week long stay at Cincinnati Children's Hospital.  Gideon was glad to be home and his brothers we grateful to see him again.  Gideon's days remain emotionally up and down as he adapting to a new rhythm.  Emotionally the days are up and down as Gideon can get fatigued quickly or experience random pains all of a sudden.  We are still trying to figure out how to care for Gideon, and give our 4 other boys what they need. Thankfully, Lynn's parents have been in town the past 3 weeks to help, but they are gone now and we will try to start a new routine.  

If you review the last update you will see that it was quite an emotional roller coaster as Gideon was admitted as in inpatient and went through a ton of tests.  I think he had over a dozen vials of blood drawn for various tests that week.  He also had a CT scan, a barium swallow test, several PFT tests, some neurological tests, an echocardiagram to make sure he didn't have pulnonary hypertensions, and a number of other tests.

Unfortunately, we still don't have any definitive answers as to what is causing the mucus in his lungs.  Here are a few highlights from the trip:  
  • Endicronology saw nothing wrong with is hormone levels or bone age study.  He is delayed, but they believe that is because of the inability to keep weight on.  If we can get him to put weight on, then his body will respond and grow.
  • The Cystic Fibrosis sweat test was negative again.  CF 97 gene mutation tests were negative as well.  These are good things as CF is something we definitely want to rule out.
  • The CT scan confirmed bronchiectasis.  This could be somewhat reversible as Gideon goes through puberty, but most likely he does have permanent damage. A more severe lung disease was discussed,  bronchiolitis obliterans (BO).  This is most likely irreversible, but we aren't sure if he has it.  More testing will be needed.  If the CF tests had been positive then they just assume BO as well, but at this point the CF test was negative so we don't know if he has BO for sure.  A lung biopsy in February may confirm if OB is present.  Please pray that it is not.
  • Immunology didn't see anything they could diagnose.  His immune system seems to be normal, with high IGEs for some reason.  All food and environmental allergy tests have been negative so far.  Immunology will continue to review Gideon's tests.
  • Genetics is looking into a cause for the high IGEs.  Job syndrome results should be back in 7-8 weeks.  I don't know what this diagnostic would entail for treatment.  We will cross that bridge when we come to it.
  • Cardiology performed an echocardiagram to make sure Gideon's heart was not under stress.  His heart rate is high because it is working harder to compensate for the weak lungs, but at this point there is no sign of pulmonary hypertension.  We willl have to continue to monitor Gideon's heart if his lungs do not improve.
  • We were given new respiratory therapy to move the mucus.  A PEP and a flutter device have been much more effective at moving mucus than the percussor was.  Gideon's oxygen levels have gone up to 93-94% during the day and at night he can maintain 90-92% for longer periods.  THe new therapy is something Gideon can do mostly by himself and take an active part in his health.
  • GI put Gideon on two new medications to reduce reflux and improve his appetite.  So far they seem to be helping as he complains less of nausea and his appetite has improved some. Functionally, his GI organs are all working and appear to be normal.

We return to Cincinnati on February 4th for a bronchoscopy, upper GI, and an impedance test.  The bronchoscopy is to check on the mucus levels, obtain a lung biopsy to check for cilary function and bronchiolitis obliterans.  The upper GI is to check for any unseen issues or obstructions. The impedance test is an electrical probe inserted through the nose and into his upper GI to measure reflux and other activity over a 24hour period.  

Please pray that we find an answer with this return trip to Cincinatti Children's Hospital February 4th.  If it is something typically irreversible, then pray that we can manage it while God works to heal it.  We will be staying about 5 days to make sure any followup appointments/tests can be done.  We will be staying 4 days at the Ronald McDonald House, and then one night in a hotel.  Anyone who has had a need for the Ronald McDonlad house knows how much of a lighthouse that place is.  
   
Finally, thank you so much for all the support shown as we reached our first financial goal!  I won't say who brought us over the $6500 mark because they gave anonymously, but thank you!  It has been a huge relief to know at least plane ticket fare, meals, and lodging were covered.

Having reached our first goal, and knowing that we will have many more bills and trips to Cincinnati, I am increasing the goal to $13,000.  I feel like I'm cheating on everyone who has given thus far by moving the goal on you.  I'm sorry.  I wish we didn't have to, but we still don't know what we are dealing with.  At this point, I will keep planning on moving the financial goal as needed.  Think of it as a continual way to help us fight with Gideon.  He will continue to be our Mighty Warrior.

Becka and Gideon with their animal masks. 
<img title="Becka and Gideon" src="http://513ced67baaaa13df2f0-c87e80355ecc54d3dbfce9a4568d3633.r35.cf1.rackcdn.com/f0472301-302c-4b32-a7ac-73cbf53bcec8.jpg" alt="Becka and Gideon" width="640" height="480">

Happy to be at the Ronald McDonald House!  Gideon loved how decorated it was for Christmas.  What a refreshing change for him from the hospital.
<img title="Happy to be at the Ronald McDonald House" src="http://513ced67baaaa13df2f0-c87e80355ecc54d3dbfce9a4568d3633.r35.cf1.rackcdn.com/620eb630-dd7d-405e-9fe3-7008e2721973.jpg" alt="Happy to be at the Ronald McDonald House" width="480" height="640">
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12/24/2013
by Andy Perkins
In a great turn of events, we have been discharged and headed home for Christmas as originally scheduled!  However, we still don't have a diagnosis and will be returning in January for a bronchoscopy and an impedance test (EDG I think).  They took a ton of blood yesterday for tests to start ruling out variants of CF and other genetic diseases.  Pray that CF tests are negative and that we find something that is treatable and reversible as he grows.

I can't believe we have nearly met our initial goal!  I want to see who pushes us over the line!  Every contributor is crucial and special, but there is something special about being the last runner in a relay who gets to cross the finish line.

 I wish this was the final race, but it may just be the qualifier.  The support raised here had provided us immense peace relief in this journey.  We will regroup in January.  In the meantime, have a blessed Christmas and know we are thinking of you.



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12/22/2013
by Andy Perkins
Another crazy day.  This morning the group of residents and doctors thought that Gideon could be discharged based upon the fact that they didn't see him in distress during the night and that they weren't going to do anything that hadn't already been suggested by the specialists.  Gideon had been anticipating going to the aquarium today, and now it looked like he still may get that wish.  Additonally, almost at that moment the Ronald McDonald house informed us that they had a room for us.  Talk bout God's timing, not only were we being discharged, but we could stay at the Ronald McDonald house and rest in the incredible peace it provides in a time like this.

However, the decisions to discharge us was reversed a little later when pulmonology had expressed that they wanted to keep Gideon while they had him as an inpatient.  Talk about frustrating and heartbreaking.  It was incredibly difficult for Lynn to take this news because she knew how much of a disappointment it would be to Gideon.  I was disappointed too, but took comfort in the fact that we were in the exact place we needed to be in order to get the proper tests done and figure what is going on.  

We were moved to the pulmonary floor so they could monitor him better.  A high resolution volume CT scan ws done to compare how his lungs looked both inflated and deflated.  A bunch of other tests are being done as well and at this point I'm having trouble keeping it straight.  We shold get the CT scan results tomorrow.  At this point I don't know if we will be here over Christmas.  God will provide for how tough that will too be separated from our other boys Ike, Phineas, Atticus, and Niam.  It's been so busy that we haven't had a chance to talk to them since we arrived Wednesday.

I don't know how long we will be here.  But now that we have a room in the Ronald McDonald House I am much less afraid of doing this.  I can see bringing the other boys here and making it work as a family.  If you've ever been in our situation, then you know how you can't do it alone and that every bit of support is appreciated.  I nearly broke down in a blubbery mess of emotions at my first meal at the Ronald McDonald house.  I'm sure I wouldn't hve been the first one to do that.

Please pray that tomorrow brings a discharge to outpatient status and that we all get a break to something more normal by being at the Ronald McDonald house.

<img title="CT scan at Cincinnati Childrens Hospital" src="http://513ced67baaaa13df2f0-c87e80355ecc54d3dbfce9a4568d3633.r35.cf1.rackcdn.com/0eea0230-24a2-4121-8f11-d4eedfb99d35.jpg" alt="CT scan at Cincinnati Childrens Hospital" width="1067" height="800">


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12/20/2013
by Andy Perkins
Well, not sure how to do this update.  We've been at the hospital for nearly 24 hours.  The first ten hours in clinics with GI, genetics, and cardiology. Part of that includes a pulmonary function test that includes a 6 minute walking test in which he collapsed after only a minute. Not fun to see, especially for mom. They stopped the testing because he couldn't finish it out. Then it was on to an echocardiagram to make sure he didn't have pulmonary hypertension. Heart proved out fine so we went back to the hotel....only to return three hours later to the ER.  He was complaining severely about being hot, head hurting, and not doing well. His breathing was okay, but I decided we should take him to the ER because I wanted them to observe this episode happening.   We came to Cincinnati Childrens to get this figured out.  So now we are inpatient instead of outpatient.  We may have to spend Christmas here, which he is not excited about :(  But we will have a good Christmas no matter where we are.  

There is a lot more to say, but I need sleep. Mom's emotions are all over the place as she wants Gideon well and to be here in Cincinnati, but we do have for other kids back in Boise that we haven't seen in several days now.  They are in great hands with grandparents.

Tomorrow the doctors will put their heads together and figure out a game plan.  
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12/18/2013
by Andy Perkins
The flight went great today and without too many complications from having Gideon in a wheelchair and having a portable oxygen concentrator.  I am incredibly thankful for the technology behind the portable oxygen concentrator.  I have a new appreciation for the disabled who live on the margins of society and how one key  piece of equipment can drastically change their quality of life.

We were incredibly blessed by Rivers Crossing Community Church in Mason Ohio.  After we checked into the hotel, Sarah Miller, from the church met us, gave us a bounty of gifts to occupy Gideon during our time, and then took us out to Cincinatti's famous Montgomerey Inn for some kickin ribs. Now, we don't know anybody at Rivers Crossing. We only knew of them from a friend who is friends with the pastor.  It's inspiring to see how God moves in people and in communities in particular.  You can't help but grow when you get tied into the right kind of people and awesome things happen.  It's refreshing. It changes you. You change not out of guilt, but because you know you can be used despite your brokenness.   Enough words from me, I think Lynn's Facebook post says it better:

In case you wondered what being smothered in gifts looks like... Here's Gid receiving (among MANY other things) a gift I can't call the gift of his dreams b/c he never dared dream he would own one - a Kindle Fire!
The Rivers Crossing church north of Cincinnati here had someone take us to dinner, made sure all our needs were taken care of, and smothered us in gifts.


<img title="Gideon and Lynn getting Rivers Crossing Community Church gifts" src="https://scontent-a-iad.xx.fbcdn.net/hphotos-prn2/p480x480/1517596_10201867607545691_1699330339_n.jpg" alt="Gideon and Lynn getting Rivers Crossing Community Church gifts." width="480" height="510">

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Tomorrow we start the doctor's appointments.  Pray that we ask the right questions, have the right tests done, and that there is an 'Aha' moment by the doctors that can give us an answer on how to treat Gideon.


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12/18/2013
by Andy Perkins
The hour is fast approaching for our flight to Cincinnatti.  We leave at 7am Wednesday.  The grandparents just arrived in town to help hold down the fort for the other four boys while we are gone. I think everything is arranged for the flight; portable concentrator-check, portable nebulizer-check, wheelchair-check, Lynn-check, and I have some semblance of a bag packed. And sleep has been optional the past couple days for me.
 
We did not make it into the Ronald McDonald House, but that is okay.  My parents and my younger brother and his family will be staying for a bit at the hotel with us.  If you are in the Cincinnati area we'd love to see you, even if only for a bit.    

Thursday and Friday are the big days for doctor's appointments.  I don't know if we will actually learn anything those days, but at least the ball is rolling. We will try to post updates at the end of each day.

Thanks again to all who have helped us.  Every bit counts.  Whether it's $10, $100, or $1000, it all translates into another meal, another doctor's appointment covered, another step closer to helping find an answer and an appropriate treatment for Gideon.  

I know for me, I will be thinking of all of you each moment of this trip who have supported us in any way.  You provided the plane tickets, the meals, the hotel, the peace of mind that our family is taken care of.  For me, it will be like you are along with us.  While we'd much rather be sitting side by side with you across a dinner table, this is about as close as you can get.  This is going to be a fantastic trip because there are so many of you along with us.  

God Bless,
Andy and Lynn
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12/15/2013
by Andy Perkins
Wow.  Thank you to everyone who has helped us get over halfway to our goal of $6500!  When we set that goal I was unsure what amount we should target, especially since we don't have a diagnosis and I don't know what our final bill will be.  We are about to start the year over and our deductible and max-out-of pocket start all over again.  Ugh, I know, groan with me.  But $6500 will at least cover travel expenses to Cincinnatti and some prior medical bills.  Plane tickets are around $2400 alone for 3 people due to the Holiday season.  We are incredibly grateful for your gifts.  It's an awesome feeling to know people do genuinely care and will show it when given the chance.

Lynn, Gideon , and I fly out Wednesday Dec. 18th for our appointments on Thursday and Friday with pulmonology, endicrinology, genetics, cardiology, gastrointestinology, and pediatric surgery. 

We hope to stay at the Ronald McDonald house, but we won't know if we have a room until 24hrs before hand.  We are really hoping to get into the Ronald McDonald house as we think it will encourage Gideon to see other kids in situations like his.  He can be a real joy-giver when he chooses to look at all that is good in his life still.

We managed to go sledding yesterday at a little hill near our house.  An oxygen tank isn't your typical sledding accessory, but it is for the Perkins family.  Dang it, we aren't going to let this lung disease stop Gideon from participating in family fun activities.  Gideon was able to make it up and down the hill a few times with help.  It is encouraging to see him make small gains with his energy and oxygen levels, but he really struggles at times emotionally dealing with his difficulties.  We just have to keep pulling him back and pray that if this is a permanent gig then we will continue to find ways to shine each day.

Here are some pics of Gideon and his brothers sledding.

<img title="Gideon Sledding" src="http://513ced67baaaa13df2f0-c87e80355ecc54d3dbfce9a4568d3633.r35.cf1.rackcdn.com/58baa36f-96f5-4662-9ff2-5d58e0e59236.jpg" alt="Gideon Sledding" width="680" height="510">

Niam ready to speed down in his box.  He has no fear.
<img title="Niam sledding" src="http://513ced67baaaa13df2f0-c87e80355ecc54d3dbfce9a4568d3633.r35.cf1.rackcdn.com/55f2a41b-bc4b-4545-afc2-189aedab03e8.jpg" alt="Niam sledding" width="640" height="480">

Phin and Ike ready to roll like brothers do.
<img title="Phin and Ike sledding" src="http://513ced67baaaa13df2f0-c87e80355ecc54d3dbfce9a4568d3633.r35.cf1.rackcdn.com/999e8a27-8293-48fa-8a45-7faeecf34562.jpg" alt="Phin and Ike sledding" width="640" height="480">
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12/12/2013
by Andy Perkins
The middle three boys went to homeschool co-op today, but Gideon didn't feel up to it.  So he, Niam, and I stayed home.  We've been focusing on taking moments that feel dark and overwhelming and turning them into opportunities to shine in the darkness.  So we put on Christmas music and spent a good part of the day making snowflakes.  Gid made his for Mamaw, our 78 year old neighbor who is like a grandmother to him.  She's been a having a rough time this season, having had knee surgery then breaking her arm in a fall.  He had several episodes of severe stomach pain and felt pretty weak but was so precious as he chose to persevere in finishing that snowflake.  He loves Mamaw and he's determined to shine.
-Lynn

<img title="Gideon and his snowflake for Mamaw" src="http://513ced67baaaa13df2f0-c87e80355ecc54d3dbfce9a4568d3633.r35.cf1.rackcdn.com/13e43a99-4b82-496d-b8a0-c320e0cc4760.jpg" alt="Gideon and his snowflake for Mamaw" width="600" height="800">

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12/10/2013
by Andy Perkins
Thank You all who have donated so far and continue to support us!  We are glad we don't have to do this alone.    

Last week Gideon had a sleep study done to see how is breathing is during the night and make sure his nervous system is doing what it should.  Now, imagine yourself getting a normal night sleep with the getup shown below. He had 36 electrodes attached to his head and a number of other sensors on his body.  He didn't complain much, except for the blood draw they had to do in the morning because is CO2 levels were high.  Having his blood drawn causes him great anxiety now and can send him into one of his anxiety/sleep/twitch attacks.  I don't know what else to call it.  Fortunately, this was just a finger poke and he was brave and did great.

We do not have the results yet, but should have them before heading to Cincinnatti next Wednesday.  I will share more details later about how the trip is shaping up.

<img title="Gideon ready for his sleep study" src="http://513ced67baaaa13df2f0-c87e80355ecc54d3dbfce9a4568d3633.r35.cf1.rackcdn.com/ad21cb06-c343-42df-a537-0977cdeda2df.jpg" alt="Gideon ready for his sleep study" width="800" height="600">
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12/06/2013
by Andy Perkins
If you are friends with either Lynn or I on Facebook then you get frequent updates on Gideon.  We will share some of the more important ones here from time to time.  Below is from Lynn:

It was a tough day. I tried taking Gid to co-op just for Art, the last class of the day. He ended up pretty much passing out, shaking. But I had loving arms to cry into for a minute before going on, and more loving arms taking care of the other boys, and more loving arms helping with oxygen, bags, and who knows what else. I'm so grateful for the school situation we were already in before all this began. He'd be getting zero school otherwise. The families at our Thursday co-op are beyond amazing: feeding us, caring for the other boys, taking the other boys to co-op on Thursdays, covering the class I'm supposed to be teaching, providing us with an abundant Thanksgiving dinner, cleaning our house.
I can't be it all and I don't need to be. People we've never even met are supporting us emotionally, monetarily, spiritually.
The fear will come. The low moments will come. But I will choose to look at all the grace, all the goodness, all the love and be grateful. Take that, lung disease!

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