A post hospital update! (My apologies for it being so late!)

First of all I would like to apologize for my prolonged time in between posts. The only explanation I can give, is that the hospital does a serious number on your body and I felt like the walking dead these past few days. Seriously, these past few days have been spent playing catch up on sleep and life! I also have felt like I was coming down with something, it felt as though I had been hit by a truck and honestly I had, the truck being called stress. Stress is a killer on the mind and body, it leaves you completely vulnerable to illness, hence feeling as though a truck hit me! Thankfully, I am finally starting to feel normal again, so hopefully, I will get back in the swing of life and blogging daily again.

My previous post was of me, expressing my frustration that Payten had to spend another night in the hospital. Unfortunately my frustration did not end there. Now before I go any further, I want to say how much I love Cardon's Children's Hospital, I am one of their biggest fans, for it has been our home away from home for these past five years. However, this hospitalization was off. I felt we did not get as good of care as we have gotten in the past and our discharge home, was horrendous! I do not believe it could have gone much worse than it did. I spent most of Thursday, literally, trying to figure out what every one's game plan was in regards to Payten going home and the most frustrating part about it, was no one could give me a solid answer to what that game plan was exactly. I felt like pulling my hair out in frustration. The hospital sent orders that were not needed and forgot orders that were needed and so forth. Finally around 5pm, they got their act together and Payten and I were able to go home. And let me just say, I understand everyone has their bad days, so I am going to give the hospital the benefit of the doubt and say that this was one of Cardon's bad days and hopefully our next stay is a lot better. However, I do have a confession, as I was leaving the hospital, I was not at all sorrowful that Emmett left his mark on the hospital walls of Payten's room, in all actuality, it made me feel little better, it made me feel as though we were able to give them a little pay back for their incompetence. (I know that is horrible of me to think, but it is true, I really did think that, but at least now, after the fact, I do feel bad that I thought it, so that makes it all good, right?!) Here is a picture of Emmett's art,

I think we may have an artist in the making! Payten was so happy to go home, as was I. I can not express how uncomfortable and awful hospital living is, so you can imagine the happy dance I did when I got home! Since we have been home, life has been good except for the playing catch up with the body and life's duties. Payten has seemed to be in good spirits, full of energy, enjoying her freedom of what home offers her. Here is a picture of Payten, Friday morning playing,

Doesn't she look happy?! Not only has she been in good spirits, full of life and energy, her breathing has been phenomenal as well, along with her sleeping too. Her breathing has been so effortless at times, I have had to make sure she was breathing, which is crazy, because before you could hear her breathing! So even though the trach comes with a lot of unwanted baggage, I know by seeing how happy, comfortable and effortless, Payten and her breathing has been , it makes me realize we made the right choice in having her trach reinserted. Even though it has only been six plus months since Payten was decanulated, Joseph and I had still forgotten what all a trach entails. We have had a few sleepless nights, due to suctioning and other necessary needs that come with having a trach, which seems to be the only major down side to having the trach again. But we know it will get better, it just will take sometime getting use to again, so we need to remember to remain positive and try to keep moving forward with a hope in our hearts and a smile on our face.

Besides Payten being happy to be home, our other kiddos were just as happy to have Payten back in our home as well. Here is a picture,

I took this picture after I walked back into our family room from mopping and after I snapped it, Zachary looked at me and said, "Finally our home is complete again! Mom, Payten is the heart of our home!" What a tender moment that was, it seriously melted my heart and it made me realize just how special Payten is to our whole family.

Unfortunately, Payten's good spirits and energetic self, did not last long, yesterday, she slept most of the day, which left Joseph and I wondering if she was coming down with something and our wonderment was confirmed today. This picture says it all,

Payten has been very sick today. She woke up extremely pale and lethargic and we had a hard time waking her up. Then later on she started running a fever and had a huge bout of explosive diarrhea (sorry if that is tmi, but hey that is what happened). It seriously was a moment that if I could go back in time and erase I would, literally it was that bad. As of right now, she is back to needing oxygen and she appears to be struggling with seizures. Honestly though, it is too soon to tell if we will need to take her back to the hospital or not. The first thing we will do, is try and keep her as hydrated as we can, keep her airway clear and support her with as much oxygen as needed, keep her as comfortable as possible with Tylenol/Ibuprofen, do breathing treatments/CPT and take her to the Doctor if needed to get antibiotics. Now, if these things fail us, then it will be time for us to take her to the hospital, but until we do all these things, we will  keep her home, doing all we can to keep her out of the hospital. It is hard watching her suffer right now, knowing we just got out of the hospital, but I know if she ends up back there, we did all we could to prevent it. I just hope and pray that this illness subsides and Payten gets better quickly, without the help of the hospital.

I want to tell each of you who helped our family by bringing in dinners, watching Emmett and the other kids, visiting us, sending words of encouragement or prayers, that we appreciate your kindness and we thank you for all you did to help lift our burden. Words can not express our gratitude for each of you. And I want to give a special thank you to my Friday night kidnappers, who took me out for dessert. You do not understand how much I needed that time away. You were a Godsend and I love you ladies so much. Our families life has been blessed with beautiful people who are so kind and giving and they bless us through their service and love. We could not do all we do, without your help sometimes and for that we say thank you. Please keep praying for Payten, that she may get better, for we do not want to spend our holidays in the hospital. It would not be the first time we have had to do that, but we certainly do not want to make a habit of it either. Remember my dear friends, life is beautiful, so show love to those around you and enjoy the blessings you all have. May you feel your families love enfold you and remember all of which you have been abundantly blessed with.