On another note, Payten has Joseph and I both besides ourselves with worry. She has not herself at all lately and we can't explain exactly what it is, all we can say is, that there is something really off about her and it is completely and utterly scaring us. She is still struggling with her breathing, especially at night and she is back to sleeping a lot during the day, which should not be the case after having the trach put back in. Rather it should be the exact opposite, Payten should be sleeping comfortably and her energy level should be threw the roof and it's not. Unfortunately, this is not the only thing that has us concerned. Another concern of ours, started yesterday and that concern is, that her entire body turns tomato red, at different times throughout the day. It especially happens while sleeping, but it is not limited to sleeping and we have no idea why her body is doing this. When these episodes occur, her heart rate spikes and her O2 drops, which leaves us wondering if it is seizure related, but then it could also be her bodies way of saying she is struggling breathing. Or it could just be a neurological side effect that can no one can explain, which is what makes it so frustrating on our end, for it could be many different things, none of which are straight forward, and we do not know who we can turn to for answers other than her Neurologist. But whatever the reason is behind these episodes, that reason will not change or dismiss the fact that it is scary as hell and has left Joseph and I extremely worried. We just are wanting answers; therefore we are hoping that the Neurologist can give us one or at least a little insight as what he is thinking in regards to it.
Not only has her body been periodically turning tomato red, it has also been doing funny things temperature wise, meaning, she will feel extremely hot to the touch, as though she is burning up with fever, but then when you take her temperature, it is below normal. Now, how odd is that? And again, we are left baffled, with no real understanding as to why. All I can tell you is, I do not have a good feeling. I have a sickening, deep down feeling that Payten is on the road of no return and that soon we are going to lose this battle we have been fighting for her these past five years. I know that I have said this before, but this time the feeling is different, I can't explain it and it has myself and Joseph extremely on edge and stressed, as well as worried. Also, I am not the only one that feels this way. One of Payten's therapist today, shared with me that she has similar feelings about Payten. She said that she has been having these feelings ever since we told her Payten went into the hospital and that seeing her today solidified those feelings, for Payten is not Payten and she has regressed back to where she was two years ago and the therapist is worried that she is not going to come back from it, rather she is just going to keep regressing/declining. Now I understand that some of you may think that these feelings that the therapist shared with her, were uncalled for, but to be quite honest, I am grateful she was so open and honest with me about what she was feeling and thinking, for it helped me to realize that I am not alone in my worries and my feelings, rather I am justified in them. Therefore I need to be and should be worried for my daughter.
As much as I knew this day would come, as much as I understood that my daughter had a brain disorder that would one day take her life, it does not make it any easier to go through or face. But for now, even though we have these strong feelings that are daughter is losing her fight, we are not going to give up, rather we are going to focus on what needs to be done to help our daughter and one of the things Joseph and I are questioning is, whether or not Payten needs the ventilator back. Joseph and I are both leaning towards feeling that she needs it back, even though we hate it and don't want it back, we both feel that part of her breathing complications might be due to her not getting the proper ventilation at night, while sleeping. So in order to figure all of this out, we are going to need to call her Pulmonolgist and set up an appointment to come in and discuss with him what we are feeling and see if he agrees. I guess for now we will just have to remain patient, attentive to our daughter needs and wait and see what happens, all while trying to keep our daughter as safe and stable as we possibly can.
Unfortunately, Payten is not the only one struggling right now. Emmett is struggling too,
I believe he might have the stomach flu or another stomach bug. The poor thing can not keep anything down. Yep, illness has struck the Merrill home, so stay away or you might just happen to get sick. I am not looking forward to having this trickle down through the entire family, but unfortunately that is what will happen and unfortunately this Mommas job is going to be the Nurse and puke cleaner upper! YUCK! (worst part of mommy-hood, cleaning puke!) Tomorrow is going to be a long day, filled with gross messes, snuggles and movies! I guess it will give me an excuse to be lazy and have a dirty house, right?! Anyways, wish me luck, for I am gonna need it. Seriously though this above picture breaks my heart, for you can see the sickness and pain in his eyes. I hate it when my kids are sick, as do most Moms. Oh well, tis the season.
On a better note, I have been able to find time to research information on the Special Education laws and I have been able to find a lot of information out that is going to help me next week when we go back in to address Makenna and whether or not she will be held back, which is going to be not! I also have found that I am blessed to have all of Payten's therapist, to whom I can talk with and who know a lot about the education laws and who have been able to help me to know what I need to know and say and have given me the research tools I need, so that Joseph and I go into this meeting completely prepared and ready. Just by them giving me these tools, I feel as though a huge weight has been lifted off my shoulders and that I now have the tools I need in order to be able to be the best advocate I can be for my daughter. Because I honestly do not believe the answer to helping her is holding her back. Rather I believe that there is something more wrong than what the school is telling us and that what would be better suited for Makenna, is to keep her moving forward, while giving her the different educational helps/supports she needs in order to help her fully succeed. I still have a lot more research to do, but hopeful that I will be able to do it, so that I am as prepared as I possibly can be, in order to put up the best fight possible.
With all of these different worries, struggles and stresses that have been thrown at Joseph and I, we still seem to be able to stand and get through our days with smiles on our faces, even though we are beyond tired. I just pray all of these storms pass soon and that we can have some peace during the holidays. For I believe we are deserving of that, don't you think?! Well, now that I shared my day with you and expressed all my thoughts and feelings, I am going to go to bed, for this Momma is beyond exhausted and needs sleep. So good night my friends and sweet dreams!
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