Now what do we do???

So I guess I now need to update Talan's blog. This is his mom (Jen)  and I think we have all about had it around here. I'm going to get quite blunt here hope none are offended. As of last week September 28, 2016 Talan was discharged off of hospice because they felt he was not dying fast enough. So they left us with no recourse of action for a plan for him to get his meds he has been on for the past 8 years!  We were hoping to get him on another hospice care plan or palliative care and they both turned him down because they felt he wasn't dying fast enough or he was chronic pain and needed to be seen at a pain clinic! SAY WHAT??? And that's great no pain clinics will take him because of the meds he is on, and we were told to put him on hospice care at this point from pain clinics! He has been denied from every sources we have tried!
So let's get this straight! HE is TERMINAL and who knows he could have more wrong with him than just IGg4? He has not been genetic tested yet because every time we try to do that they tell us they need a diagnosis that we are aiming for? Well when your RARE how are you supposed to know what your aiming for, for a diagnosis? For reals?  I'm so tired of being pushed around from dr to dr to place to place and getting the same answer, sorry don't know anything about this can't help you until Talan has finally give up on going to Drs because he gets pushed off. I can't say I blame him! We have less than a week to figure something out with meds or we could lose him to lack of medicine and neglect from our own healthcare system!
What do we do? Where do we turn? We are literally doing all that we humanly possibly can do to help him. I'm afraid he will become a statistic if we don't get help soon! Neglect statistic. We can't just go live in a hospital every certain amount of days or hours to get meds. Why? Why no help? I don't understand! I hate RARE because you don't get help and they try to tell you how you feel or should feel instead of having sympathy that the patient is really suffering! Talan doesn't want to live this way? What 25 year old wouldn't want a life? So your telling me that someone's lungs that are turning hard from lower to midway up and has only 60% or less function and is at moderate restriction and when he exhales his every breath, air is getting trapped. He is on 3 1/2 liters of O2. His digestive tract is turning hard from his  esophagus all the way through, and his abdomen, legs, arms, around his jaw area is not enough to help him? He is in chronic pain because he broke his back at age 16 and has an intrathecal pump giving him meds to control that pain. He chokes on food as it is going down, he has eosinophils eating away at his esophagus all the way through because he over produces eosinophils at the bone marrow level.
While on hospice in two months he lost 20 lbs, then in one week he gained 10 lbs.! Ok hello people that is not normal! It is water gain and he continues to have more water building up in his system! We know his cortisol goes all over the place and causes that but we don't know why? He also has been throwing up, very nauseous, and yesterday he had something rupture that we thought was a hernia, but popped with the most discolored blood and puss. And of course we can't get into the dr until Monday. That is just a GP because guess what? He has NO DR overseeing him nor helping him! He just sits here at home and plays Xbox to let the time pass by. He told me today he feels like he's getting sick and literally can't even play Xbox because he is so wore out! He tries to sleep but can't sleep because his body is to tired to sleep. It's such a vicious cycle.
I myself have had some serious health issues the past few months and I was diagnosed rare also with causalgia (complex pain syndrome to do with peripheral nerve damage.) I have been doing my best to take care of Talan on top of my own health issues. My husband is busy working 4 jobs to keep me home with Talan and he is wearing out. We have had family falling apart issues over so much stress due to caregiver wear out and the stress of a sick child. I only have two kids one is sick and one is normal. You can only imagine how they both feel! So many mixed feelings of why me on both of their thoughts of sickness and being healthy and the guilt that comes with it. It's no ones fault in particular it just happens when there is so much stress. I love my family more than any words can say!
I'm tired, Talan is beyond tired, my husband even more tired. I feel horrible as a mother feeling hopeless and helpless not holding my family together better and not being able to help Talan anymore than I am. My children don't even hardly talk to each other and it makes me so sad. One day we will understand why we have had these trials, but until then I wished I had a magic wand to make it all better.
I'm praying that God hears our prayers with plea for help from someone that truly cares! I'm trying to hold it together but I'm getting low myself! Having faith is all we all have to help us through day by day, hour by hour, minute by minute. I wish some laws would change to help these poor sick rare people out that have no other choice but to fight for every breath they take!
This is a plea for prayers to be answered and for peace and comfort come to all of us!
We thank all of you for your love, concern, food brought in, help with Talan when we need you and especially to my RARE friends and family that are always there for me no matter what! Love you all!
Please pray for Talan that he may continue to fight and we can find help for him SOON!
Much love, Jen

Challenges Arise as Talan's Disease Progresses - But He is FIGHTER!

As parents to a child with a rare disease, it is the hardest thing to continually see Talan with so much pain. In return, there is a lot of worry, stress, strain and 24/7 care given to Talan from us parents. Through various events of doctors not wanting to see Talan anymore because of his rare disease, the only option that we as parents could do for Talan at this time is to have hospice come into our home. We know some people have already heard of this happening for Talan, but we just wanted to clear some things up. This decision has by far been the hardest choice to emotionally realize that Talan needed this type of help. No one ever thinks of putting their 25 year old son on hospice at such a young age. 

Love that SMILE of his!

Talan is at a point that the pain is so excruciating that he is awake for about 2 hours out of the day. When he is sleeping he is still is so much pain that he is uncomfortable. He is at 3 liters of oxygen almost all of the time. The disease is starting to take over and harden his lungs and is throughout his digestive track. IGg4 Systemic Sclerosing Disease is ugly and mean. Doctors told us that it was time for him to go on hospice. With the help of hospice, we are able to keep Talan home while trying to keep him comfortable where the doctors can’t help.

We know and feel that this is the best option for him right now in his life. Once again, it was the hardest realization that he needed this type of care. Talan has had hospice service for about a week now and it has been so nice to be able to have some additional help and care for him. We have an awesome nurse (Lori) who is very kind, loving and understanding and will do anything for him to help him. We have also had an awesome Social Worker and a Chaplin come and talk to Talan. The Chaplin has been an LDS Bishop and Seminary Teacher and was able to help with a lot of Talan’s “why me” questions and replace them with “what” questions. What am I supposed to learn from this? What are others supposed to learn? We truly cherish our time we have with Talan and pray for many years to come to make memories with him!

There is never any time frame with this disease and as to how long we will need hospice in our home. I have put together some bracelets, lanyards and dog tags for Talan to show support and help for him. 

Times are still hard and Talan still needs your love and prayers. Talan’s moto is to NEVER GIVE UP and we will continue to fight to the finish! Talan Summers, you are our hero and we will all continue to fight this battle with you!

Its been a long and trying year....

Talan getting ready to go into have his pump replaced.

The after math of the pump placement.

On the way home from surgery

Talan having his pump filled with numbing medication after his pump surgery to help with his pain.

Family reunion

Fishing in Island Park

He was wore right out from just trying to go fishing for an hour.

Island Park

Island Park

Just outside of our cabin in Island Park

Our friends cabin in Island Park

Dad giving Talan stress at the cabin

Tal all tukered out. It literally takes all he has just go somewhere else besides home.

Island Park

Yellowstone

Island Park

This is a video clip of how much pain Tal was in when his back ruptured a disc and we didnt know that is what happened.

The day that Talans back was in excruciating pain not knowing what was happening.

Talan getting ready to go into back surgery

Taking the first walk after back surgery

In the hospital from back surgery

Talans scar from his back surgery

Talan was more than ready to head home from having his back surgery

He was not to cheesed about wearing the O2 canula with the carbon dioxide monitor on it while in the hospital from back surgery.

To make all things better Talan got a new puppy and called him HERO

   

They are buddies

Talan doing his lung function test

Tal doing his lung function test

Talan became a first time Uncle in October

Our Christmas Pj's "Christmas Vacation"

Donald Trumps son

Taya signing one of our books

Shes asking Stan what to write in our book.

Talan was guiding her where to sign on his Chris Kyle poster

She was so gracious to put what Talan wanted and where on the poster

She is signing one of the four books Talan brought for her to sign

We were so honored to be her presence. Very humble woman!

She is taking a picture of the pages she wanted because she didnt get one of her own books and wanted to have these pages.

We insisted she keep the book and she wouldnt have that. She is so genuine.

I love this picture! Its all about Talan. She is so awesome and so sweet. I had bent down and whispered in her ear while signing his books what was going on with him. She was so humble and willing to do anything for him.

This is Mark, he was one of the shooters that survived over 400 gunmen in the Bengazzi attack. He is in the movie 13 hours to Bengazzi. What a story, and honored to be in his presence.

Talan hugging his buddy Matt, he was a medic in the 

Army.

Talan and Matt. They both have something in common. Bad backs!

This was the aftermath from the couple of hours we spent with all of these amazing people. It was all worth it. He was tuckered right out. He can now check this off of his bucket list!! What a great night.

I guess before I get started on the latest news, I need to tell about these last few pictures and what the story is behind it. We were invited to a private reception that Taya Kyle (aka) (Chris Kyles wife) would be at a couple of weeks ago. Feb, 2016. 
 Talan took 4 books of his that he has of Chris Kyle's, his "Idol!" If Talan had his way he would be a sniper. Just saying, hes a great shot! Anyhow, one of the books he had was one that Taya wrote. When he went to have her sign the book she gasped, and says "dont think Im weird, but could I take a few pictures of these two pages in this book?" I dont even have one of my own and I want a picture of these two pages. She said there is no more available and her publisher didnt even have anymore. For heavens sakes we told her to just keep it, that she needed a copy of her own. She replied, no I couldnt do that! Its really ok, I just wanted a picture of these two pages. Talans heart was wrenched she didnt have a copy of her own book and wouldnt keep his.

 She was so good with us and Talan. I had bent down beside her as she was signing the books and told her Talans situation. You could tell she was heartbroken and whispered back at me, Im so sorry. She proceeded to tell him that Chris would have loved to meet Talan and would think he was such a great guy. I know there was more she said but I cant remember. ha ha. We felt bad interupting her during the time she was trying to eat, but she graciously signed his books for him. 

After she signed everything and we had walked away, it was about 30 minutes later and it was literally eating at Talan she did not have that book. He told his dad the story and asked him if he would take it back over to her and give it to her because she wouldnt take it from him. He couldnt stand the thought of her not having such a special piece of her heart with her. 

Stan took the book over to her and insisted she kept it. She was very grateful and wanted a card from Stan if he had one so she could send Talan something back to repay him for it. So she has her book and its signed to the Summers' lol. We were so glad she decided to keep it. Its not about what she will send us back and we don't expect it. Its about paying it forward and doing the right thing. This is how Talan is, and always will be. It was such a great night to see his smiling face and that he could make a connection with Chris Kyle somehow. Taya is very humble and the nicest lady you could ever imagine. The smile on Talans face was priceless and literally paying for it afterwards was well worth it!!!

Now on to the updates:

Yes, it has been almost a year since I have posted here. Because I started a Facebook page for Talan.  I just started to do updates there and would not find the time to go into more depth here. But today I will begin with all that has happened this past year of 2015. I get a little bit more up close and personal here. I will start with the most recent news we have received.

The most recent news we have learned is this. Over the Christmas Holidays we took Talan to get his lung function test done. He was supposed to have this done last March, but because he has had multiple surgeries this past year, it caused him not to be able to do it until then.  In the pictures above you see him blowing into the machine, and if the first few blows showed an issue then he would have to take an inhaler medicine to see if that helped and blow again. Sadly he failed the first few blows and so he was asked to try the inhaler and try blowing again15 min later to see if it helped. He blew again and it proved that it DID NOT HELP!! Talan was kinda bummed and figured it was going to come out that way.

 After receiving the results our hearts were broke. We did not tell him the results until we could get him to a Pulmonologist and he could explain it all. His results were that his lungs have already reached moderate restriction. Talan had an x-ray done on his chest in November because he was sick with bronchitis. It revealed that he had widespread thickening\scaring throughout his lower and mid lungs. This all made sense after the results from the lung function test.

 His disease has now reached his lungs and his lungs are only functioning at about 65%. A CT scan was also done last July and revealed that when he exhales he is not exhaling all of his air and its getting trapped. Because of the air trapping he could build up carbon dioxide. Which is a little worrisome. He has been using his O2 off and on, and while using it its anywhere from 2-3 liters. Talan's appt. with the Pulmonologist was just two days ago. He gave him an inhaler to try that was longer lasting to try and keep him opened up a little bit more. Its supposed to help the air trapping not be so bad. 

The Dr is setting up an in-house sleep study to see what else is happening and we will go from there. The Dr also told us to do what we do for his disease. Well, unfortunately that is nothing. The last time Talan did the Rituxin chemo treatment that they do for the disease didn't do anything for him. It suppressed his immune system so bad that he got the influenza so bad we about lost him. Since then he does not want to do the Rituxin again. So I guess we are at a crossroads of just letting nature take its course. The Dr said he has never heard of the disease that Talan has and has no idea what to do for it. (Go figure)  Our only hope now is that the cannabis oil or the marijuana bills pass through our state so we can try these in hopes that it can help his pain and have the healing properties help him.

What we do know, is that all of this happening is irreversible and will continue to turn his lungs hard along with his esophagus, stomach, duodenum, stomach, and small intestine and who knows what else? He went to the eye Dr this past summer and his eyes had changed drastically. Eyes are one that is a main place to get the disease also. Unless we went to a Dr that specifically deals with this in the eyes we cant tell if its in there or not? But the eye Dr. we seen said it could be?  At this point we have no idea how aggressive the disease is. Talan took the news pretty good, but the Dr was also very vague with him, which was good. Even though the spirometry test revealed the inhaler didnt do any good for him to open him up. Talan says his new inhaler is helping? Whether it really is or it isnt, it is good that he can remain and stay positive. 

Talan has been asked to walk the treadmill twice a day for 5 min at a time. This will increase oxygen to the body parts and joints. He has been doing pretty good with that, but is sure quick to get to his O2 afterwards. Trying to get him to wear it during exercise, yeah good luck with that one. Trying to ask a 24 year old to do something that is slowly losing his independence is a real trial. He tries really hard to get up and do things all the while his body says no, but his mind says yes. He has been trying to lose weight and he is very frustrated with that. It was explained by a respiratory therapist that because his lungs are not functioning normal the oxygen is not being distributed correctly and causes him not to metabolize right. Because of his esophagus turning hard he chokes on some foods. He eats pretty much simple foods that are soft.

So now, we will back up to last March. He has an internal pump that runs right to his spinal cord and has numbing medicine in it to help numb his lower back and down his legs. Its to help numb some of the pain he is having from his back surgeries he has had previously. After about 5-7 years the batteries will stop and therefor the pump stops. Well you guessed it, his stopped. The first time the Dr placed it, it was a nightmare because his tissue was so hard it was hard to place it. The pain from that surgery was excruciating and he swore he would never do that again. Talan tried to go just a little over a month without it working. It got ugly, he got so sick and in so much pain to the point he could literally not get out of bed. He found out just how bad the disease must be in his stomach. Apparently the numbing medicine was numbing him there and masking the pain he was in from the disease attacking his stomach. We almost lost him over this. He finally made the decision to get a new one placed. The surgery went well and wasnt as bad as the first one. He was very glad he did the surgery. But the recovery time was about two months for him. A normal person probably a couple of weeks. 

He felt good enough that he says lets get out of here, I have cabin fever. Literally, we ended up in Island Park. One of our great friends let us use their cabin. We took our whole family up there and had a great time. Mostly just relaxed but Talan was hell bent we were going fishing. The weather where we wanted to go was bad and the water was to dangerous to be around. So he settled to come back and fish in the little river. Needless to say that was fun for about a half hour. His pole wasn't working so I walked up to the little store and bought a pole for him. Just as I was headed back I got a call saying don't buy it if you haven't yet! Talan just stepped on glass in the water and didn't know it went through his shoe into his foot. The water was so cold it had numbed his foot so he couldn't feel it. Luckily it wasn't to bad but bad enough we were done fishing with a new pole now not used. The rest of the vacation was spent just relaxing and a few hours spent in Yellowstone. Its always nice to get away for awhile and make memories as a family.

In September Talan all of the sudden just started with excruciating pain in his lower back and right leg. As the day went on the worse it got. He doesnt recall what he had done to make it hurt so bad. Talan is a pretty tough kid and doesnt usually cry when in pain. This time was different. I recorded him on my cell phone in the video above, it broke my heart. As the day went on he could not get up from the chair by himself nor could he bare weight on his leg or that side of the buttock. I had to make a trip into my sister in laws house at ten at night to get a walker for him to get around. Stan and I had to lift him up out of the chair and help him walk, amongst other things. He was in so much pain we tried to get him to go to the ER but he refused. He fought it for about a week before he caved to go to the Dr and get an MRI because of pain and he had started to lose control of his bladder. The MRI revealed that he had ruptured a disc at the level he had surgery before. It was pressing on his spinal cord and causing him to lose his bladder control and could have lost bowel and leg. So the Drs call this an emergent surgery. Long story short he finally had surgery. It was planned to do a fusion but it was decided to do just a discectomy.  It worked! YAY!!!

Following surgery he ended up with a bad infection at the incision site. It wasnt decided for sure what he had, it was either MRSA or Staph. We didnt know how deep the infection was, the Dr just knew it wasnt good. So the plan was to put him on IV antibiotics for a week and if it wasnt better they would have to go in and revise the site. Luckily it was looking better. He ended up on a PICC line for 3 months with three different antibiotics. In the process of it all he also got bronchitis. This is when he had the chest x-ray that found the sclerosing in his lungs. We finally are to a point now that he is doing better and his pain is gone down his leg and back and bladder control is now in check!  WHEW!!! He still has not been released by the Dr yet, that appt is this coming week. But all I can say is the hospital stay was a nightmare, he couldnt keep his O2 up while in the recovery room so he had to go in recovery still intibated until he could keep his O2 up enough. It was a very rough surgery for him and the recovery was hell. We are glad he is finally on the road to recovery.

In the process of all the nightmare of infection he had after surgery, his sister had her first baby making Talan a first time Uncle. Because of his infection he could not get around the baby for a month. That was very hard for him, knowing he may never get this chance on his own and wanted to be there to experience this with is sister. It has been very hard on him to watch his sister have a family started and he sits here everyday to fight for his life. It was not easy for him to sit in the car while we went in her home to see the baby without him, or he could go in her house and see the baby from a distance without touching anything in her home that would contaminate anything he touched. He still feels that he doesnt dare get around him because he will give him something. So he tries to stay away as much as possible. He would feel terrible if he gave the baby something. Although we know he would not and has been cleared by the Drs. He really doesnt know what it feels like yet to be an Uncle. Its heart wrenching.

Talan is a fighter and will never give up. He fights a war everyday of his life and we find it a miracle everyday he is still here with us. He still does not feel well but tries his best to do things he wants to do. Most of his time is spent reclined in a chair so he doesnt have the pressure on his lungs so he can breathe better. He plays x-box and lives vicariously through it. He wishes he could be out shooting his guns, hunting, being in law enforcement, hanging out with friends, or having a wife and a family not just sitting here with his parents. He has had some great friends come and see him lately and we appreciate the time they take out of their own lives to come and hang with him for awhile. It is so good to see a happy smiling face while they are here. It reminds us of the good old times. There are so many of you out there that play an important role in his life and have touched him deeply. Thank you for reaching out to him, and it always seems to be at the times he needs it most. 

Having a chronically ill child takes its toll on family. You always feel bad as a parent watching one suffer so much that know one can even comprehend until you are there. You feel for the child suffering and you feel for siblings that are affected by it. I know that God has a plan and we were chosen to be parents of such special spirits. You can only do the best you can do to your ability. Our Heavenly Father knows what is in store for the trials and burdens you bare. He is always there by your side as you go through them. I would not have chose this trial, but I would not give it away either. It has taught me so much, and even though it is hard as a mother to watch your children suffer in one way or another I know it will be worth it one day. May all others out there suffering find peace and comfort to get through your days. As I wont lie, I try to find mine everyday!!
Love you all, and thank you for your prayers, checking in on us and taking care of us in one way or another. God bless you all!
Talans mom, Jen