This picture pretty much sums up how I feel during the times Payten is in the hospital. I am surprised I have not been admitted to a loony bin! But in all seriousness, I am beyond exhausted and emotional, two things that do not mix well together. And the eery silence and emptiness of our home, that comes with Payten's absence, does not help either. This morning it hit me strong, that one day this empty, silent, lonely feeling that Payten's absence leaves inside of me and our home, will be a permanent thing one day in the near future and it will be a feeling that over time I will have to grow accustom to and what the journey will involve. Then I walked into the kitchen and saw her medicine syringes on the counter and I burst into tears, realizing that however mundane and tedious this task of administering medications morning and night may be, as well doing the everyday care of Payten, has become a HUGE part of my life that will be hard to let go and leave behind. After I had a good cry, I was brought back to reality and realized that Payten is still with us and I need to focus on the now, instead of the future and as hard as that may be at time, that is definitely what I am going to do as of now!
This hospitalization has been odd from the start, for usually Payten goes in with some sort of illness, but this time around, it was not due to illness, but rather breathing complications. Therefore, we have no clue of what the game plan is our daughter until we talk with her doctors/specialists, which as of yet has still not happened . I believe her specialist (ENT, Neurology and Pulmonology) have already sat down together and talked, but I would have liked to have been involved in that conversation and helped determine what we all thought was best for my daughter. I believe right now the plan is, to play around with her seizure medications and see if any improvements happen during these adjustments. If nothing changes, then that will be when we look at our other options, which are, surgery's to open up her airway. Which could mean, removal of tonsils and adenoids, cutting away tissue in the neck that blocks the airway, etc. How long will all of this will take? I have no clue. I guess we will have to wait and see what happens and how long it takes the Doctor's to figure things out and get Payten's body to cooperate. As for now her breathing has improved some, however she is still having strider breathing, appnic episodes, oxygen requirements, suctioning needs, etc. therefore, until these issues are figured out and handled we will be stuck here in the hospital.
Payten's surgery this is scheduled for next week, will it or will it not happen, that is the question? As for now, my guess would be that it is on hold until these breathing issues are cleared, but I have not officially spoken with her Doctor, therefore it could still be a go on Monday. Hopefully I will see the Doctor between now and then, to figure out what his plans are in regards to this surgery.
Not only is Payten having breathing complications, she also is having complications with her Power Port. Today, we found out that Payten's port is indeed not functioning properly. So the plan for that is for her to have a dye study done tomorrow to see if we can do something to fix the problems with the port or to determine if it needs to be removed. If it does need to be removed, then the next decision Joseph and I will have, is to decide whether or not we place another port in her body. The hard part about it is that there are only so many sights a port can be placed in the body and with each placement, there runs the risk of it malfunction more than the last port did. So we have a lot to consider and contemplate. They said they would put her on the OR schedule for next Tuesday. The Surgeon is hoping that Payten will still be intubated from Mondays surgery (if that even happens!), so that she only has to be intubated once, because with Payten's airway, we do not want multiple intubations. The surgeon said he would talk to the ENT about it and get back to us. So, again you can see we are still in the dark as to what is happening for sure with our sweet Payter Tater!
No wonder I had a mini melt down when I got home! Today was hard, this week was hard and the not knowing makes it even harder! Today, Payten was extremely irritable and sad, crying or screaming most of the day. I want to chalk it up to boredom, but honestly I have no clue as to why she is in so much discomfort. I feel so helpless in regards to her and her needs. I want desperately to help her or take this away from her and I can't. That is probably the most frustrating/emotional part about this situation. It truly leaves me left feeling, exhausted, tired and sick. I can't sleep, for my mind is constantly racing with thoughts and decisions that need to be made. I cry or laugh over the simplest of things, because I am beyond exhausted and I have three other kids to take care of. I seriously feel like a juggler, juggling all these different tasks.
Tonight when I got home, I wanted to take a hot shower and relax, but no, I had dinner to get for the kids and homework to help with, as well as a costume to make for Doctor Who day in Zach's class tomorrow! Thankfully Zachary has a great imagination and is old enough to do it himself! Here is what he came up with,
Pretty awesome Dalek if I do say so myself!
After homework was finished and kids finally got to bed, I just sat down and had a nice big cry! I am one person, therefore, I pray that my Heavenly Father gives me the strength to withstand the storms of tomorrow and that he will give me a peaceful mind tonight, so that I can get the much needed rest my body is so desperately craving. Thank you to all who have been praying for our sweet daughter and our family, I know your prayers are working and we can feel them and we are grateful for them. I hope you have a restful sleep and a good day tomorrow. Much love and goodnight!
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