Attitude is EVERYTHING!

Payten and her BEAUTIFUL friend Alyssa!

Through this year and half, I have found that attitude and perception are everything! If you have a bad attitude or a negative perception, then it will end up being just that, negative and bad! Today could have been one of those NO GOOD, VERY BAD DAYS! But instead I turned my attitude and perception around and it ended up being a BEAUTIFUL day, that kinda started on a bad note! I have learned through this experience with Payten, that I can not control everything life hands me. I have to laugh at things and myself! I have learned not to let the little things get to me and not hold onto things, but rather let them go! Life is to short to constantly be frustrated and angry!

Today I woke up late! I received a phone call an hour before we needed to be to the hospital, saying that we needed to be to the hospital in an hour! None of the kids were ready, none of Payten's things were together and I was fumbling trying to get everything in order! We got to the hospital 15 minutes late, I forgot my wallet, my cell phone, Payten's insurance cards, and some of Payten's medication! At first I was super frustrated, because usually I am on top of things, usually I am not this unorganized, but for whatever reason I was having an off day! I realized all I could really do is laugh at myself and thank heaven that my head was still strapped on!

Then after getting settled in our room and talking with the Doctor, I find out that Payten will not be staying the four days that we had anticipated, but rather she would stay for the test and then go home and come back in three weeks! Again I thought I could get angry and frustrated, but instead I let it go. I didn't let it bother me, I figured at least we were getting one of the tests done and for whatever reason she needed to wait and that it would end up being a blessing in disguise, we just needed to look for the blessing!

Shortly after this, I was blessed to have a beautiful experience and received a beautiful compliment! I was able to meet a sweet family, who is facing some hardships that I am no stranger too. Their child is developmentally delayed, with low muscle tone, not only that, she is having feeding and respiratory issues, to the point of needing a Tracheotomy and G-Tube placement. I was honored to be asked to talk with them and teach them what I know and help them coupe with their feelings. I shared with them my heartache that I felt when I was faced with these same decisions and what a difference it made in my child's life. I taught them things that I had learned over time and explained things that they were having a hard time understanding, I even cried with them. It was such a wonderful experience! I realized I love helping people and talking with them and teaching them, it brought me so much joy! Then the compliment came. After I was done speaking with the family, my Doctor came in and thanked me and told me that he knew I was the person to ask because I have dealt with the trials I have been handed with poise, and that I have gained a lot of knowledge through my experience and have tons of hands on experience. He went on to say that he feels I am doing a wonderful job with Payten.

All I can say is, This made my day! Who doesn't like a compliment, especially from their Doctor! I always think, My Doctors hate me! They think I am so annoying! Oh no here comes Payten Merrill and her Parents, lets hide!!!! Why I think these things, I don't know, I just do! But when I hear things like this, it makes me realize that my Doctors do like me and they do respect me and they think I am a good mom, who is doing a good job and that helps me to keep chugging along! So even though my day started out on a bad note, it ended on a very happy and good note! And it is all thanks to the change in my perception and attitude! This experience I had at the hospital made me realize that I really do want to pursue a degree in Nursing or something like it. I want to help people, it brings me joy!

While in the hospital, we found out that Payten does not suffer from Rhetts Syndrome! What a blessing and relief that is! It is a weight lifted off my shoulders! Now we just need to hope that the medication for the GTP Cyclohydrolase Deficiency will help and make a difference in Payten's life! As of right now, Payten is doing good, she is healthy and she has started rolling more and more! She is also responding to people with smiles! These things may be small and simple, but they are so huge for Payten and we are so proud of her. We know it is because of all the prayers and love that you all have been sending our way. It truly has made all of this possible. To all of you, we say, thank you, we love you all and appreciate you so much! Remember Attitude is everything! You can change your day, by changing your perception and attitude! I think if we could all master this talent, the world would be a better place!

Past few days...One word...CRAZINESS!

Oh boy what a few days it has been! Payten is sick, but what is new! We really do not know what is wrong with her, we just know that she is sick! And not at a good time either! She is suppose to go in for testing next week and Dr. Cook is not going to let her go in if she is still sick! Ugh! We can not keep putting this off, she needs the medication or she is just going to keep digressing! I just wish they would do it, sick or not, she needs it done and there is not a huge window of opportunity for when Payten is well. Dr. Panesar says she is fine to do it, so that is going to be my argument when I see Dr. Cook on Friday! I am crossing my fingers that I win and she goes in next week, because I want this over and done with!

On top of all this, Makenna, Payten's sister, had surgery Monday! She had her Tonsil's and Adenoids removed. What a not so happy camper she is! Wow, it is hard dealing with two kiddos who are sick! While we were in the hospital, Payten had an episode where she could not breathe or get a deep enough breath. Joseph almost called 911, but she finally stabilized. Thank Heaven for that! I took her in to see Dr. Panesar the following day and he seems to think her airway is worsening. Oh heaven, I hope that is not the case, because why would it be worsening? The tracheomalcia is getting better or was, so it has to be stemming from the brain. What my thought is, is that the brain issues are getting worse, which is causing the breathing issues to worsen. The answer, venting her more! We might have to vent her all the time, I sure hope not, but it is a manageable thing that many people have to do, and so if we have to, we have to.

With all of this weighing on my mind, I have not been handling ordinary life very well. To be quite frank, I have been a wreck! I am trying to keep it together, but it is so hard when you have so much going on and so much you are worrying about. Maybe on Friday we will receive more answers from Dr. Cook. As for now we are just tugging along, trying to keep Payten well and Makenna Hydrated! At least we are home, all together, safe and sound! Gotta count all the blessings I can! Zachary is healthy and strong and chugging along! Yay for that! Even though it may not seem like it, I do LOVE my life! I have a good life, full of blessings!

Oh, by the way, I am thinking about going back to school! How crazy is that? It has been weighing on my mind a lot. I am debating between getting my nursing degree or getting a degree in Respiratory Therapy or maybe a degree in both! I even thought about a Physician's Assistant! Hey if I am going to do it, I might as well do it right and dream big! I will let you all know what I decide! As for now I am going to enjoy the peace and quiet of the moment and relax from the stresses of the day! You all have a good night!

Update on Payten's life!

My apologies to everyone for not updating my blog for a few days! I have had a busy week with no time to blog! I also needed time to clear my head and collect my emotions, etc., etc!

The last time I blogged, I explained my frustrations about people not respecting other people's time and feelings. Payten's surgery did not go as planned. It actually seemed to be a nightmare at the time. As you know from my previous post the surgery had been canceled on Wednesday and rescheduled for Friday. It was extremely frustrating. But after being able to step away and really clear my mind and think about the whole situation, it turned out to be a blessing in disguise.

I was able to pray about things and receive clarification. I was able to gain greater understanding about everything that happened. I now understand the Surgeon's point of view and the meaning of his words. When he wanted to know if Payten was going to be admitted, he was not referring to his procedure, but rather was inquiring about Neurology's plan and if they wanted to admit her. He soon found out they had no plans on doing testing at the time, but upon asking he had no clue, it was a huge misunderstanding.

And then when he commented about the Trach and how he thought it would need to be sutured in, was not a moment of stupidity, but rather a moment of being couscous. I now fully understand where he was coming from when he said this, he was just trying to prevent infection. He did not want the trach tie to rub or irritate the incision site. He was trying to protect Payten. Typically when he does a port placement, he goes in through the neck and down to the chest. Therefore he was worried that the trach tie would be in the way. At the time he did explain that he would try to make the incision somewhere else, but that in most cases the only place he has been able to access the site is along the neck and so therefore would most likely need to suture in the trach. I did not hear his alternative or absorb the information he was telling us at first, because I was freaking out about the trach being "sewn" in!!!!! But luckily the Lord stepped in and gave me more time to clarify things!

When I was really able to stop and think about it, it really did make sense to me and I knew that whatever happened would be manageable. No did not calm my nerves and no it would not be ideal or fun, but it would okay. Luckily in the end it all worked out! The surgery went BEAUTIFULLY! Payten was a rock star!!!! Dr. Pham was able to do the surgery without having to suture in the trach! Thank Heaven, that was a sure blessing! I truly appreciate Dr. Pham, I feel that he listened to our concerns and respected us enough to do everything he could, to not have to sew in the trach. I wish that Post Op would have been as good of an experience as surgery was, but unfortunately it was not.

I did not feel that we were treated very well. They rushed us out before we were ready. Payten was still under Anastasia when we went home! We went home after listening to them ask us over and over again, are you ready to go home, we are not trying to rush you, we just think it would be best if you went home because it will be awhile before she wakes up, after all it is nap time! I felt like they were tried of dealing with us! I felt very unwanted! That is not a feeling you should feel after your child has just gone through surgery! I was very upset! I felt very mistreated. They did not listen to any of our concerns. And to add to it all, Payten had a plug in her trach and needed to have it changed and they ignored our concerns. We expressed our concerns about the trach, 5 times and the nurses kept on ignoring us. They kept saying it was nothing and we were over reacting! We ended up changing it at home and sure enough there was a plug! Nurse's need to learn to listen to the Parent! Mom's know best!!!! But all in all everything ended up okay, Payten came out of surgery fine and that is all that matters. She does not even act like she had surgery. She is so amazing! She is so strong! She is my Shining Star! I love her so much! She teaches me something new everyday and that is a gift! I love what this experience taught me! I am grateful for the lesson I learned!

Monday was our Golf-A-Thon for Payten and what a success it was! We raised $4500 for Payten's Charity! Words can not express the gratitude we have for everyone who helped make this event possible. The proceeds will help so much! It will truly make a difference! Thank you to everyone who played a part, thank you for making this event such a success, we love you so much for your generosity in helping Payten and others like her! It was so much fun, I really believe the golfers had a blast! What a wonderful way to spend our day! We are going to do it again in October and I am happy to announce that all the Golfer's said they would be there! That was wonderful to hear! Let's hope we will have more participants this next time and that we raise even more money, because every bit counts and every bit will go to help a child!

Now I do have to give my apologies to Fox 10 News. Yes, I am still upset that Fox 10 did not have the courtesy to call and cancel their interview last week. The news did show up to our event, they were unannounced, but they came! It was kinda bitter sweet! I was not prepared at all, but it was a good experience! I think it aired on Channel 5 and 15, I do not know about 10, but I do know that the camera guy worked for all three stations and they came because of Fox 10, so thank you Fox 10 for showing up and doing a story on Payten, we do appreciate it! (See I can admit when I am wrong!!!!) It still does not dismiss the lack of respect they had for us last week, but I will take back my words about Fox 10 not caring! I am sorry I said that! I was quick to judge and I apologize!

We are still accepting Pledges for the Golf-A-Thon until Thursday, so you still have an opportunity to donate if you would like. Also there is a donate button on Payten's Website, helpingpayten.com, and all the proceeds to go Payten's Charity, Payten's Prayer, it is a tax deductible organization, so it truly is a win win situation! Payten will thank you someday for you kindness, generosity and love.

That is the update for now on our life with Payten! Again I am sorry I left everyone hanging for a few days! Now the plan for Payten, is to wait until the 26th of July at which point, Payten will be admitted for her Neurological testing. She will be in for a week and we need prayers that this medication will help Payten. We need prayers that it will help better her and the quality of her life. I hope that she will reach at least some of her milestones. It breaks my heart to see other children crawling, sitting, babbling, walking, talking, etc. I want those things for Payten and this medication might be the answer we are so desperately looking for, let's hope it is! Thank you all again, we love you so much.

Surgery Rescheduled!

Sorry everybody, for not getting on sooner to give you an update on Payten and how her surgery went. I needed time to cool down! The events of this week have brought me to my boiling point! Therefore I was having an extremely emotional day, full of tension and frustration. First off I have been extremely bothered by the fact that Fox 10 News blew us off on Monday. For those of you who did not know, over the weekend Fox 10 contacted us and said that they wanted to interview us about Payten and her Charity and the fundraiser we are having on July 12! They did not show up! I feel that it was extremely uncaring to set up an appointment and then not show up. The explanation I was given was...Oh sorry about Monday, we don't know when or even if we can do a story. We will hold onto your name and number and if we decide we can or have time we will call you. Give me a break that is not an apology. They claim they are so caring and compassionate towards families and the community and that they want to help others etc. But all they really care about are Ratings and what is going to get them the most viewers. And this is a prime example of that. If they truly cared they would have shown up. So that was the First thing this week that bothered me. Secondly, today Payten had surgery scheduled at 11 am and as you all know, I was extremely nervous, as any parent would be. We arrived at the hospital at 8:30 am and we waited 3 hours in Pre-Op for the doctor to come. Finally after 3 hrs. of waiting, we met the surgeon. That is when the nerves really kicked in! After introducing himself, he says, Now will Payten be being admitted after surgery? (Huh?) I don't know Doc? You tell me? Then he proceeds to say, Oh, wow, I did not know she had a Trach! (Seriously? Did you look at her chart?) That changes things! Ummm, I was planning on going through her neck right where the Trach Collar is and using that vein to place the port, so I am going to have to remove the collar and suture in the trach. (What?) Oh don't worry she can go home like that. Actually (hahaha) it will work better than the trach collar! (Seriously, I don't think so!) Then he goes on to explain everything about the procedure, answers our questions and leaves. While in the meantime, I am sitting there freaking out, asking myself if this surgeon knows what he is doing and if we need to call Dr. Mancuso and have him come down here for the surgery. I was ready to cry because I was so nervous. Then the doctor comes back in after a short while and informs us that he does not have the right Port, so therefore is going to have to reschedule the surgery for Friday. Are you kidding me? You did not know this prior to us coming down here and wasting 4 hrs of our day. Joseph took work off for this, are you going to reimburse us for our time! NO! I feel so used and abused! I feel like no one respects me or my time! I do not think either of these parties understands how hard it is for me to prepare for these types of events and what time and effort I put into something like this. Then to have them blown off like they were, so frustrating, so uncalled for and wrong! I wish people could live my life for a day and see how things like this effect me and my family. But on the other hand I am relieved a little bit about the surgery being postponed because we were able to call Dr. Mancuso's office and inform him of the surgery and what the surgeon said about the trach. Hopefully he will be able to be there to help with the surgery that day and if not, at least he will be able to discuss it with the doctor and come later to take the stitches out for us. We would rather Payten not go home with her trach stitched into place! I also understand mistakes happen and things sometimes can not be controlled, so therefore I am not as upset at the hospital, as I am Fox 10 News! Fox 10 was rude and inconsiderate! Ugh! Life is so hard and frustrating at times. I feel like I am having a lesson in patience, understanding and forgiveness! Lets hope I pass!!!! I think I am doing a pretty good job, I am not too bitter, I am a little frustrated, but not angry! And besides, now that I have had the chance to get it off my chest, I will be over it soon. I did not lose it on anyone in the hospital, so that is a point for me!!!!!! Now, for an update, Payten did not have surgery today (LOL! as I just discussed above!), she will have surgery on Friday. Please Pray that the Doctor will be inspired and know what to do for our Payten that will best help her! Thanks for all your prayers thus far, they are truly needed and much appreciated!

It's Official! Payten is getting a Permanent Port!!!

It is official! Payten will be having a Permanent Port Placed Tomorrow! She will go in for Surgery at 11 am, check in at 9 am! The Surgery will last for at least an hour and a half, if not longer! They have the OR Scheduled for 2 hours, let's hope it doesn't take that long or that it doesn't go over the 2 hour mark! After Surgery she will be admitted to the PICU and be there for at least a day. With all her complications and medical history, they want to monitor her and make sure she handles the stress of surgery well before they send her home. I still do not know much about the Port and the side effects/risks or what it in tales exactly, but tomorrow after I speak with the Surgeon I will know more and I will definitely let you all know what I find out! I am still nervous about the surgery, but that is normal! Any surgery is nerve racking, especially when it is your child!!!! The nerves will be there until the surgery is over and I see that she comes out okay! Anyways, sorry I have not been on here for a little while, things have been busy! We were suppose to have had an interview with Fox 10 News yesterday in regards to Payten's Golf-A-Thon and Charity! (which is in less than a week! You can still participate!!! No pressure!! LOL!) And can you believe it, they stood us up! No!, they did not call to let us know they were not coming. How frustrating is that? Very!!!!! We got everything ready, we put our day on hold and Joseph got off work early, it would have been nice to know that they were not coming. Oh well, their loss right?!!!! Payten has been good, she seems to be stable right now, so lets hope the surgery doesn't set her back too much. But let's face it, it probably will! It seems like we are constantly in the same vicious cycle of Payten taking one step forward and then two steps back! I can't wait until we can stop the cycle, but I don't see it happening anytime soon! Let's hope I am just being negative and that the cycle will come to an end soon. Pray for Payten that she comes out of Surgery fine and that her recovery is easy and quick! Love you all! I will post her status tomorrow after surgery, so stay tuned! As for now, have a good night!!!!