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.
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.
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