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| Talan getting ready to go into have his pump replaced. |
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| The after math of the pump placement. |
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| On the way home from surgery |
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| Talan having his pump filled with numbing medication after his pump surgery to help with his pain. |
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| Family reunion |
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| Fishing in Island Park |
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| He was wore right out from just trying to go fishing for an hour. |
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| Island Park |
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| Island Park |
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| Just outside of our cabin in Island Park |
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| Our friends cabin in Island Park |
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| Dad giving Talan stress at the cabin |
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| Tal all tukered out. It literally takes all he has just go somewhere else besides home. |
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| Island Park |
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| Yellowstone |
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| Island Park |
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| 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. |
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| The day that Talans back was in excruciating pain not knowing what was happening. |
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| Talan getting ready to go into back surgery |
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| Taking the first walk after back surgery |
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| In the hospital from back surgery |
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| Talans scar from his back surgery |
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| Talan was more than ready to head home from having his back surgery |
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| He was not to cheesed about wearing the O2 canula with the carbon dioxide monitor on it while in the hospital from back surgery. |
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| To make all things better Talan got a new puppy and called him HERO |
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| They are buddies |
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| Talan doing his lung function test |
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| Tal doing his lung function test |
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| Talan became a first time Uncle in October |
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| Our Christmas Pj's "Christmas Vacation" |
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| Donald Trumps son |
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| Taya signing one of our books |
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| Shes asking Stan what to write in our book. |
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| Talan was guiding her where to sign on his Chris Kyle poster |
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| She was so gracious to put what Talan wanted and where on the poster |
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| She is signing one of the four books Talan brought for her to sign |
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| We were so honored to be her presence. Very humble woman! |
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| 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. |
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| We insisted she keep the book and she wouldnt have that. She is so genuine. |
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| 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. |
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| 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. |
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| Talan hugging his buddy Matt, he was a medic in the | Army. |
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| Talan and Matt. They both have something in common. Bad backs! |
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| 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
