OYE!

So we are still at the hospital... :( Sam is no longer in pain and he is healing quite well. The problem is that he is still unable to tolerate his feeds. Everytime we try and feed him into his stomach all contents come pouring out around the stoma. He really is unable to get any nutrition at all at this point. We started him on a new medication to get things moving a bit faster. Please keep fingers crossed that this works. By the way I have been unable to log into my e-mail for some stupid reason so if anyone has e-mailed me in the past week I haven't gotten the messages yet. I hope to talk to everyone soon... from home!

Update

Sam is still in a lot of pain. In terms of his general health he is doing well, but he is going to need a little longer to heal. He is not tolerating being fed through his new stomach tube yet, which will prolong his hospital stay. To be honest Scott and I are fine with staying a little longer than expected as Sam is not ready nor are we ready to take him home yet. Sam is getting really great care, his nurses have been wonderful, and we have a private room with an extra bed, not that anyone can really sleep... but its still helpful. I will try and contiue to post updates when I can. Thanks for checking in. :)

Pain, Pain, Go Away...

Sam's surgery went well. He is breathing on his own and is in a regular pediatric room. It is private for now as Sam still has a bacteria in his GI tract. This is complicating his healing course a little bit, but he should be fine. All of Sam's doctors are trying to give him the best course of treatment as possible. Sam's surgeon did a really great job as Sam was able to get his new tube placed in the same stoma as he had before. The worst part of this whole ordeal is that Sam is in a ton of pain. The docs are of course trying to keep him comfortable, but how comfortable can you get in a hospital with tubes and drains sticking out of your stomach. We should be home by Friday. Please continue to pray that everything goes smoothly and that Sam's pain subsides fast. Thanks so much.

Surgery

Today is Sam's surgery. I am extremely stressed as there have been a few more hiccups in our plans and only time will tell if we are actually going to do the surgery today or not. If everyone can please hold their calls to us until later tonight or tomorrow morning it would be greatly appreciated. Scott and I are under an enormous amount of pressure some appropriate some totally unnecessary. We appreciate every one's prayers, concerns and well wishes. There are computers with Internet access that I can use in the hospital so I will post another message either tonight or tomorrow morning to inform everyone of Sam's progress. Thank you all again for all of your prayers and good wishes.

Scott's Pen

Friday night and I am sitting at my computer tears running down my face searching for something on the Internet that can make things better (not porn), I need a more permanent wholesome fix for my son, wife and myself. Sometimes our situation hits me hard and fast and I just cry alone. Today my wife emailed me a listing of a beautiful home in Livingston, out of our price range given our circumstances. Desperation and fear consumes me. How am I going to keep going? What kind of life am I going to be able to provide my family? Can I give them everything they need and what exactly is that, health maybe, wealth maybe too?

32 years old in a few weeks and I feel old and tired. I used to wish for death but I don't any longer. I just wish for peace of mind, body and soul. Will it come???? Things have to get easier but tomorrow new challenges await. School, more therapy? FUCK. THIS SUCKS!!! No one should EVER have to think when looking at their son sleeping about surgery, breathing, walking, and talking. Please call me daddy. I should be looking at him thinking about all the good times we are going to have but the sad reality of it is that I don't know and not knowing is the scariest thing in the world. I know we all don’t know what tomorrow will bring but I do know that in a few hours from now, I will wake up hold my son and begin medication and therapy once again for another day.

My poor baby. What can he be thinking? I wish I could climb into his crib with him, hold him and tell him that everything will get better. WILL IT? This empty feeling is awful. His life is awful but am I right to say this. Sam does not know the difference. What kills me at times is when Carrie and I are eating lunch and he is lying on the floor looking at his. "What are mommy and daddy doing and why are they not with me". My heart breaks every day. I love you Sam and I love you Carrie. I promise to continue to fight for both of you every day and I will not rest until peace of mind, body and soul have been attained. Soon my love, soon.

Please Help My Friend!

Hello everyone! I am once again coming to you asking for your help. I am not however coming on Samuel's behalf this time or at least this week. Let me share a little with you first.

I have met through an internet group for Moms with special needs children, a great friend. Her name is Susan and she has an adorable little girl named Reiley, this family lives in AZ. Reiley is like Sam in the fact that she has a lot of the same health problems, feeding, swallowing, developmental delays etc... and she is undiagnosed at this time. Reiley's biggest challenge is eating. She also has a feeding tube that gives her 90-100% of her nutrition. Reiley's doctors want to send her to VA and/or Ohio soon. There is a great feeding clinic and some doctors that may be able to FINALLY get her a diagnosis. For these kids having a diagnosis is crucial, you can not properly treat or even get the correct therapy if you do not know what you are fighting. Susan and I have made a great connection and have become great friends.

So why am I telling you about lil Miss Reiley?? Because as so many of you are aware of through our journey this can get costly and scary. Insurance does pay for the medical aspect but it does not help with gas, lodging, and food. Remember I said they live in AZ and are traveling to VA and OH. There is a medical fund set up for Reiley if you are able to help. There is also a couple of nice people that are donating a portion of sales from there business. These businesses are Tupperware and Brown Bag(adult items). I have links to these 2 pages if you are interested in buying something. I am adding a link at the end of this to Reiley's page so you can read more about this sweet little girl.
Please know that I am not one to ask my family and friends to make monetary donations for just anyone or anything, but I have made a strong connection with this family. If you are unable to donate then I am asking you to PLEASE pray for this family. Pray for wisdom to the doctors and for God to guide the specialists. Pray for strength as this is the hardest thing to go through as a parent. Thank you everyone for taking the time to read about Reiley.

http://reileylakemedicalfund.weebly.com/

www.brownbagparty.com/u/Terri/website/register.jsp

http://my2.tupperware.com/jshotwell

Love to all,
Carrie

In the Waiting Room...

We took Sam for his pre-op appointment this morning. Usually when I have to take Sam anywhere I become overwhelmed with anxiety. Lately, I have been trying to practice something new. I say a mantra over and over in my head that goes something like this: "Sam is brave, Sam is strong, I am brave, I am strong, everything will be OK, its going to be a great day."

Now I knew today's appointment wasn't going to be fun as they needed to take blood from my little man, and he did cry and scream for quite some time. To be honest though, it really wasn't that bad. We went through the motions one breath at a time and before I knew it Sam fell asleep and we came home. All the while I continued to focus on the positives and tried to reflect positive energy on whoever I needed to make contact with. It worked pretty nicely as they took us in immediately, gave us an extra hand and did not keep us longer than necessary. It takes a lot of work and energy for me to be so positive especially in these types of stressful situations so to be honest I wasn't 100% light and fluffy.

After we came out of the pre-op room we had to wait to talk to anesthesia all the while Sam was screaming and choking with his feeding tube dangling and suction machine going... Anyway, almost everyone in the waiting room was so BLATANTLY staring at us. I don't normally care when people stare at us, I'm use to it, I know they are looking at how unbelievably beautiful I am ;) . But at that moment I had my bitch hat on and I sure enough let it loose. I turned and stared back, but this one particular family continued to stare, so I said really loud "Are you enjoying the show?" I mean, come on... How rude and inappropriate can some people be? I just couldn't help myself. What can I say, I am a work in progress. So what would any of you have done if you were in my situation?