Here are some pictures from today,
This one is of Payten right before surgery. Isn't she beautiful?! She looks like an absolute angel in this picture and the irony here is that her breathing right before surgery, while napping, was beyond perfect. And though it left Joseph and I questioning a little, whether we were making the right choice, we know that we made the right choice and that Payten did indeed need her trach reinserted.
This picture of our beautiful Payten is post surgery. Though she has tubes and wires and incisions everywhere, she is still absolute prefect and beautiful. I love this little girl and am so happy that she came out of surgery okay and stable. I am beyond thankful for modern technology and modern medicine, for these two things have played a HUGE role in keeping our daughter alive and living a quality life. Such a blessing all of it has been for her and us.
Though the circumstance of all of this was not ideal and the outcome was not exactly what we wanted it to be, I am feeling beyond blessed and at peace with the decisions that were made. I know that what the Doctors decided to do, was exactly what my daughter needed and as long as her best interest was put first, nothing else matters. However with that said, it does not make it easier on all of our emotions. I have found that during these times of despair, when we are seeing our daughters disease take it toll on her and progressively worsen, Joseph and I both lose a piece of ourselves that we have to work hard at rebuilding. It takes time to do, but the new found strength that we gain through all of these moments are worth the sorrow, despair and brokenness, for we end up better and we went in. So even though my heart was at peace because I ultimately knew that this was what was needed and best for my daughter, it still took a heavy toll on my heart and soul, breaking me to pieces. Pieces that I will have to put back together over time and hopefully during that time, those broken pieces will become stronger and less likely to break with the next hit that is headed our way in the future, if that makes any sense. These are the moments that help mold Joseph and I into better people, so as tired as they may be on us and as emotionally draining they make us and how ever much we detest these hospital stays, Joseph and I are grateful for the lessons learned and the strength gained in each visit/moment Payten puts us through.Like I said, her surgery was today and it went beautifully. The Doctors said that the most difficult part to the whole procedure was trying to find an IV access on Payten, for her veins are so poor, they had to stick her 20 times, in order to find an IV sight. Thankfully she was under anesthesia while they poked her, but still it makes me sad that she had to be poked her 20 times and that she will be all bruised up because of it. This is why a functioning Port is so import for Payten, because the port insures automatic IV access, which is what this little girlie needs. So I am thankful we have that option and that they were able to find another location that worked for a new port placement. The first choice in veins for the new port, did not pan out when the surgeon tried it, therefore he had to go with option 2! He said that the ideal vein, was too weak and scarred to be able to use, therefore he he went with option number two, which had more risks involved if used, was still the better choice than anything else. The second vein worked beautifully and after surgery, they took an x-ray of her lungs to make sure there was no hole, and thankful they did not see a hole, which is one of the major risks factors when using that vein, so I am grateful for that. Once the port was place, they moved onto her tracheotomy, which went even better. The Doctor was hoping that he would not have to make a new incision in her neck, rather he wanted to try and use her preexisting stoma, which is what he was able to do. By dilating her stoma, Dr. Mancuso, was able to fit the trach right back into the opening of her neck without new incisions or complications, which means that she will have a very speedy and smooth healing time. But not only did he not have to make a new incision for her stoma, he also did not have to suture in the trach, due to where the port ended up having to be placed, so we have blessings all around. No the port placement was not the ideal location, but in all actuality it worked better for the tracheotomy! Can we say blessings?! Yeah! Quicker healing time and less days in the hospital, I'll take it!
I am beyond grateful for the power of prayer, for I believe that everything went as well as it did, because of prayer and the fact that so many people were praying in our daughters behalf. I believe prayer is one of the most powerful tools we have at our finger tips and that if we use it, miracles happen and that is what happened today. Surgeries are scary and there can be so many complications involved, but today, Payten's surgery went better than anyone expected and I know it was because of the prayers that were being said for our sweet Payten, so thank you to all of you, who prayed in her behalf today, your prayers were heard and they were answered and Payten was greatly blessed because of your faithfulness and love. Right now, Payten is still sedated. The Doctors are keeping her sedated, so that they can give her time to heal before she starts pulling everything out, such as the trach! They are also giving her morphine to control the pain and keep her comfortable, so you can imagine just how out of it she really is. Daddy will not leave her side! Since she got back from surgery, he has stood by her bed just watching over her and making sure everything is okay. He is such a good Dad, he loves his little girl so much and I am lucky to have him as my children's father. He would not even come home to sleep tonight, for he did not want to risk Payten waking up and have no one there who she recognized. I wanted to stay, but he insisted that he be the one to stay. I think he secretly is worried that something might happen to her, but he is putting on a strong front and I love him for that. Seriously, these are the moments that make me love him more than I already do, for I see what a beautiful soul he has. I am truly blessed to have him in my life.
All in all today was a good day with many blessings. Yes, the trach is a blessing, for it enables our daughter to breathe. Our biggest sorrow in all of this is not the trach, but rather, what the trach symbolizes, which is regression and worsening of her brain atrophy, that is what is most upsetting to us. However, the trach does bring some sorrow too, for it means long and sleepless nights, more hospitalizations/illness, and a lot more intensive care involved with it, but you can't beat the pro which is her airway and Payten being able to breathe, for that out weighs any of the cons. Now that this is all over and Payten is finished with surgery and has her trach back, this Momma will now drop from exhaustion and sleep with a peaceful heart, knowing that my daughter is breathing easily again. I am so thankful for this sweet girl and the warrior she is. She teaches me everyday what it means to be strong and I do not know what I would do without her! I just want to say thank you again for all of your love, thoughts, support and prayers on Paytens behalf, it truly means the world to us to know that people care so much. We love you all and we hope you all have a good night. God bless!
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