Mad Mommy

Tonight I lay in a pull out couch/bed in my sons hospital room and I can't sleep. Right now I am mad. Honestly I'm flaming mad. I just don't get the whole process behind home care nursing. So we have had nursing since July. It was a pretty smooth transition in our lives. Over time, Logan's medical needs have increased.

We had the tracheostomy placed knowing that we needed more help managing his airway. Seemed like a slam dunk. Of course this change comes with some new cares added to his routine. We knew that. We also knew prior to this hospitalization that we needed more help at home. Before the hospitalization, we were using 40 hours per week of nursing hours during the day and realized we needed some help at night so we could sleep and some help on the weekend so we could have time nurturing our family and our marriage.

So this exploration for more help was in the process with our county case manager and our home care company. This was a very tough step for me to take. Asking for help is not easy for me. I am the one who should be able to help everyone else and take care of my family! A little unrealistic I now know!

So back to why I am mad. I am being told by the pulmonogists office that they will approve 16 hours of nursing per day for one month and then go down to 12 hours per day after that. So here is some perspective on this...

A trach is supposed to help us better manage his airway. It does not fix his airway problems. It does not help him cough. It does not prevent illness. It will allow better access to suction and in the event of an emergency, will allow an airway that can be controlled. It will help us have a better time fighting off aspiration pneumonia's. it will allow us to keep him home even during illnesses that would often require hospitalization. It does not decrease the amount of time spent monitoring or suctioning him but hopefully will not cause him to require more cares while healthy. Just a few pros and cons to throw out there so you can follow along with my madness.

Back to the hours, 12 per day... That will not cover both the time I need to have a nurse during the day and at night. A day nurse is important to cover me when I am working as well as accompany me to Logan's appointments. A day nurse keeps all of his supplies, medications, and equipment in line so that I can just be mom. A day nurse performs therapy at home so that we can continue to help Logan thrive in his development.

A night nurse would be there to monitor while we sleep, because I don't sleep and I know my husband doesn't either. We always have our ears to the baby monitor and I am checking in on him a couple times a night to make sure he is not drowning in saliva, does not have cords wrapped everywhere, does not have a feeding tube that has leaked all over his bed, or is not spiking a fever or is in respiratory distress. These are just the important times when a nurse is needed. We also need some weekend respite.

I also have a husband that will do whatever he has to to care for his son, but is it fair to always be asking him to take on more and more without a break. He works full time and then has to be a single parent on the evenings I work including entire weekends alone when I am working my every third shift. He is not a nurse, he is a dad but is a great nurse-dad because he has to be. I want him to be able to just be dad sometimes.

The other, and just as important factor in all this is our four year old daughter. She needs parents that are also engaged with her. Not parents that are burned out. She needs to see that she is just as important as Logan. She is going to need us during the evenings to help with homework and to go to school recitals and after school events. Yes, I want Logan to come with during these times but the winter months are a very scary time because of germs. We are also not supposed to drive with Logan in the car if we are alone in case his trach comes out or he has problems with his secretions.

Okay, so I have gone on long enough and now I realize I am writing what I should be saying aloud but I am so scared to say it. I am being told by people that I look to as the source of knowledge with kiddos like Logan and I am hearing something that doesn't sound realistic. I have a hard time questioning because I don't know what is normal in a situation like this. Am I asking for too much? Am I trying to pawn my kid off on nurses?

I truly feel like my thoughts are valid and should be considered. I am a nurse and I think I am a pretty good one. But I am a wife and mother first. I don't want to always be seen as that super capable mom because oh by the way, she is a nurse. Seriously, is this what all families have to go through? Because all I can say is, this sucks big time. I feel like we are being told to buck up and parent our kid. To that I say, come on over and join me at home. And while you are at it, crawl into my brain and listen to my constant worry.

So now that I have written what I want to say, I have to take action. How I will do this, I don't know. I am always so worried about biting the hand that feeds you. I don't want to piss off the people that are trying to help us. But on the other hand, it is my job to advocate for my son. In the end, I will advocate and we will get what we need.

I write this blog post after some heavy thought. I never want this blog to be a source for my complaints and I do not intend to speak badly of others. We are all in this together. I decided I would write this post to shed light on what we are going through. I have shared so much of the detailed medical and developmental journey of Logan. Sometimes I shy away from the other aspects of caring for a medically fragile kiddo. This side of it is often the most frustrating and stressful. It keeps me awake at night, gives me a stomach ache, probably causes some high blood pressure, and brings me to tears. And for those of you that know me, I don't like to cry (unless it is my Aunt Michele calling!).

I know this will work out, I just have to speak up. I am just so tired of always having to do it. It seems like this should be easier. Thank you for reading a conversation happening in my head. I hope it made sense! I also hope there are takeaway messages in this post. I think I will be the one that takes the most from this as this has been therapeutic for me!