This quote made me giggle, therefore, I felt the need to share it. Honestly, it does sort of fit the past couple days I have had, because when I think of zippity, I think of fun, lightheartedness, laughter, randomness, etc. and though my days have had all these things in them, well sort of, it is still not the same, for these things have been presented while under a little more stress than normal, therefore it just doesn't fit that zippitiness that a day should have! So yes, my days have been lacking the zippity of my do dah day! In all seriousness though, things have been a little stressful, but okay.
Yesterday was my go, go, go day. From the time I woke up to the time I went to bed, it was go, go, go! Zachary had his annual IEP meeting yesterday and it went pretty well. Do I wish that his principal was a little kinder and more understanding towards his needs? Yes, but all in all we were able to come to agreements and we were able to figure out goals and plans that will help Zachary to succeed and that is all that matters. However, with that said, the process of an IEP meeting, can be extremely exhausting. Anyone who has endured a meeting such as this, knows exactly what I mean, for it is hard and very tiring when you are advocating for your child. But you have to do, what you have to do, because if you don't, no one else will, because you are the only person who has your child's best interest at heart, therefore you have to fight that exhausting fight, sometimes.
The IEP meeting was not the only thing that kept me going yesterday! I kind of wish it had been the only thing, but alas that is not my luck, nor my life! Yesterday was filled with a therapy, a doctors appt., and cub scouts. Which all of those things can be tiring just by themselves, but when there smashed together, it becomes exhausting and then add a 2 yr. old into the mix and you have yourself an insane day! No wonder I dropped when it was all said and done! Seriously, if it were not for my down time, that I spent vegging out, watching HGTV, I do not know what would have happened, I probably would have ended up in a straight jacket and Emmett would have been the driving force behind it! LOL!
Seriously, I do not know what got into Emmett yesterday, he was a pure terror. He had his hands into everything and I mean that quite literally. When I was prepping dinner, he got into the eggs and cracked four eggs on my floor! Then while I had my back turned, cleaning it up, he took a big bite out of the raw chicken I was prepping. Thankfully he did not swallow it, but I still am keeping an eye on him, because it was raw chicken and I don't need him hospitalized, due to samonilla poisoning. Lets just hope he does not get sick! Then, after I took care of that fiasco, he decided to try and pour himself a cup of apple juice, which you can imagine what an epic failure that was. Yes, there was apple juice from one end of my kitchen to the other! And while I was cleaning that up, this budding artist of mine, decided he would practice his artwork on my tile floor in the hallway. To say I was running around like a Madd Woman with her head cut off, would be and understatement, but hey, I guess you could say that Emmett added a little zip to my do dah/busy type of day, right?! Haha! Honestly, it was quite funny and even though during that moment I wanted to pull my hair out in frustration, I am happy I was able to remain calm, yet firm, but loving, all while trying to teach him that these things were not acceptable things to do. At least now I am laughing about it and can say he is a total cutie pie, whom I love, for if I couldn't, that would make life miserable and no one loves misery, so lets all remember to laugh a little more, especially us Mom's who can relate to situations like these!
One of the things I mentioned that was part of our go, go day yesterday, was a doctors appointment. Payten had an appointment with her Pulmonologist and I was sincerely hoping to receive some answers as to why she is doing some of the things she is doing, such as requiring oxygen whenever she is sleeping, and unfortunately, I had no such luck! Basically, I was told that by reinserting the trach, it should have fixed everything and because it has not, it is most likely not respiratory, but rather neurological. Which is not the answer we want to hear, but it is the honest answer and we have to take it with stride. He did however, put her on a couple of antibiotics, just to be safe, for she was showing symptoms of respiratory infection, so he wanted to be safe and take care of that, in case that was playing a roll in all these complications, but even those she had those symptoms, he still felt strongly that it was not a respiratory matter and his main advice to me was, to go and see the neurologist, for he feels strongly that Dr. Cook, will be the man with the answers. I came with hope and I left feeling sad and defeated, for the doctors words, solidified to me that the feelings I have been having in regards to Payten are right and she is indeed on a down hill slope, Neurologically speaking.
And today solidified it even more. Let me explain, today was not as go, go, go, as yesterday, however, it was a lot more stressful, due to some complications Payten experienced. At first Payten seemed to be having a really good day, she seemed to do a lot better during her O.T. session, which pleased us greatly. However, after O.T. she took a turn for the worst. Payten was so exhausted from O.T., that she fell asleep shortly after her session and while she was asleep, her breathing patterns became completely and totally off, meaning, she would take a couple breathes and then she would stop breathing, then take a couple breathes and stop breathing. This went on for quite awhile. Payten's speech therapist was present for most of the complications. During all of this, we had her hooked up to the pulse oximeter, monitoring her heart rate and oxygen levels, which were totally all over the place, meaning, her heart rate would be really low one moment and go really high the next and her pulse was in conjunction with the machine. But what was odd, was her oxygen did not seem to correlate with her not breathing, but we know she was not breathing, which makes absolutely no sense, because her oxygen should have been dipping with the non breathing patterns and they weren't.
And while all of this was going on, the therapist and I were trying to wake up Payten, but she would not arouse at all. She would respond with some movement, but she would not arouse. It was making us quite nervous, to say the least. Then all of a sudden, out of no where, while the therapist was cradling Payten in her arms, Payten's eyes shot open, she sat up and she started shaking and her tongue started convulsing/shaking uncontrollably, with her heart rate going from 80 to 150 in a matter of seconds and during all of this, she was moving about, like she was awake, but she wasn't, for her eyes were completely glossed over and then after a minute or so, she went limp and finally came to, but then she started choking and I mean choking. You know that sound you make, when you are choking, but still are getting a little air? Well, that is the sound Payten was making. Which lead me to believe that maybe she had a plug in her trach, but when I checked, she didn't have one. Then, all of sudden, she stopped making that sound and her O2 started to drop and her heart rate went really low and she went very pale, meaning she was not getting air. So I jumped up to grabbed oxygen and her amboo bag and while I was going to get those things, she stopped and started breathing again. Seriously, right at that moment, I wanted to just drop to my knees and sob, but I am shocked at how composed I remained, even though on the inside I was a mess.
Once Payten finally came to and stopped choking and started to breathe, she was totally fine. She acted as though nothing had happened. And the therapist and I were both left, wondering what just happened?! I mean, she should not have not had an episode of choking at all, due to that fact that she has an open airway, therefore she should have been able to get air, therefore the only thing I can think of, is that her brain stem was misfiring, which caused Payten to not get the signal to breathe and so on. And the whole shaking episode leaves me wondering if it was in all actuality a grand mal seizure, which would be new for Payten. Which in all actuality, Payten having these episodes, scares me to death, for what if this choking episode were to happen at night and Joseph and I did not wake up in time, what then? Would it end in a fatal mishap? These are the situations that leave us, the parents, wondering, if we did the right thing by not calling 911 or taking her into the hospital. During these times, we are left with the question, should we have called 911 or taken her to the hospital? We are left questioning this, because we know the list of things that the doctors tell us to call 911 for or bring her to the hospital for if any of the things actually happen, and many times, Payten does all the things on the list, which makes it hard, because if we just went by that list, then we would be calling 911/rushing her into the hospital, all the time! Therefore we have to use our knowledge and understanding and put all of the equipment we have to use, such as a pulse oximeter, oxygen, and amboo bag, etc and realize that we are comfortable with these things and we have the training in CPR , therefore, we have to go off of our gut instinct and do all we can do, which causes us to wait longer than most would, in regards to calling 911 or taking her into the ER, but still, sometimes it leaves us questioning if we indeed did do the right thing, even though it all turns out okay in the end, it still leaves us questioning our judgment. Hopefully all of that makes sense.
Even though the events of today, turned out okay, I was still, like I said above, left wondering if I did all I should have done. I was also left with the events replaying over and over in my head, which left me going over what I could have done differently, etc. and that is exhausting. Now, you will be pleased to know that I did leave a message with the neurologist, however, he has not called me back yet, which is not a big deal because Payten seems to be fine right now, but if she were not fine, you better believe, I would be calling and bugging him until I got a phone call back, but I know that it can wait, however, I also know that it needs to be addressed, therefore if I have not heard from him by late tomorrow morning, I will be calling back and leaving another message. Unfortunately, because I have not heard from him yet, I am now, on pins and needles, for the only explanation I can come up with regarding all of these events, like I said before, is that it is her brain stem not functioning properly and if it is indeed her brain stem misfiring, then that is scary, for that controls everything your body does, therefore if it is misfiring, whose to say it won't misfire a signal to the heart, which would result in her heart not beating or if it misfires a signal to breathe, it would result in her not breathing, etc. which leaves me feeling like the nightmare I have had since she was born could possibly happen and that nightmare is, that I wake up, to find my baby girl, dead. I know that is morbid and sad, but it is true and it scares me, quite literally.
Therefore right at this moment I am left feeling extremely lost and alone, not knowing what to do. I feel as though no one has any answers and it is frustrating. I hope and I pray that the Neurologist will have some answers and if not, then I will be calling the Pulmonologist to see if he has any suggestions, for I do not want nor need another episode like the one Payten had today happening again. Her speech therapist left in tears, begging me to call the doctor, for she was concerned that Payten would keep having problems, which thankfully Payten did not, but still, it was scary and left us all feeling worried. So now you know why I said, that my days have been lacking in the zippity of my do dah days! Even though there was a lot of excitement these past few days, I do not believe it was the zippity defining excitement that I am referring to! So hopefully tomorrow that zip will come! But please in all seriousness, if you pray, pray for Payten, for she needs prayers right now. I am unsure as to what the future holds for my sweet girl, but I do know that her health is not good and that no one seems to be able to tell us why that is, which leaves Joseph and I feeling very scared, lost and alone, so please understand if we seem little off, we most likely are, which would be due to the fact that our minds are being overloaded with concern for our daughter, so if you could, please pray for us as well. I love and appreciate you all and I hope you all have a blessed night and that you all have a little bit of zippitty in your do dah day, tomorrow.
No comments:
Post a Comment