Pre Christmas

 

 

We are just over a week out of the hospital and Logan is doing great. He hasn't required oxygen with his humidity for the last two days. He is interacting more and more. Right now he and Lauren are watching the movie Rio and he seems pretty in to it.

 

We had our first of three Christmas celebrations last night and this morning. My family came for the weekend. Joel cooked an amazing meal and we opened presents this morning. Logan got a Thomas the train engine that is switch adapted. This means he can use buttons to activate toys. The train choo choo’s all across the floor. I will try and get a photo or video up with him playing another day.

 

Lauren has been sick with an ear infection for the last couple of days. She is such a trooper when she is sick. She never complains unless she feels horrible. This time she has been complaining on and off and I think she ended up with a ruptured ear drum. Oops. She has spent most of the day on the couch. Poor thing.

 

We plan to spend a quiet Christmas at home. This will be a first for us. Normally we go to our parents homes for the holiday. We just aren't quite ready to travel with Logan yet. Next weekend we will spend with Joel's family. So as you can see, we survived week one of being home.

 

It hasn't been easy and we are having a lot of growing pains related to the nursing care Logan receives. We have had changes in the times nurses can come and already have three ill calls for this week. I understand that people get sick. I think we have all been there. Where my frustration lies is that the company has not found any other back up staff to fill the shifts. They do call the other nurses we work with but none can fill the shifts. I guess being Christmas makes it a little difficult.

 

So once again, I get that part. What makes my blood pressure rise is that we are just eight days out of the hospital and already have issues. Will it always be this way? When I go back to work in a week, will we have these issues? I can't be calling in sick all of the time and leaving my job in a lurch. I can't be putting my job at risk because we can't find caregivers for our son. I will do what I have to for Logan but the thought of my career being a backseat in my life upsets me. At work I am Rachel, not Logan and Lauren's mom. Family is always first but does it mean my career has to totally suffer. I don't think so.

 

This sucks and I feel completely helpless right now. Logan's care has become so complex with the tracheostomy. He is up many times a night, requires constant monitoring and suctioning. We have seen positive changes in him. He is able to breathe easier and doesn't always need oxygen. These are big steps. But times like this make me regret the decision to trach him. We had such a good rhythm at home before and needed much less assistance with care giving. Now we have to place our trust in a home care company.

 

I hope this gets better. I hope it is growing pains and that all will work out. I am going to have to start advocating a little stronger for Logan and our family. We need help. We can't do this alone anymore and trust me, I would rather just do it all myself but it is impossible. I have yet to find a survival guide to special needs parenting. Even a cliff notes version would help! I guess I will have to write my own some day.

 

I hate to think there are other families going through similar struggles. Unfortunately there are a lot of people going though this. The world of special needs parenting is such a lonely place. We tend to isolate ourselves because it is easy to do. To take our children out of the home means a contingency plan. Emergency equipment and supplies must be prepared. Every possible scenario must be thought of. It is like packing five diaper bags every time you leave the house.

 

I wish this was easier. I wish the stress was less. I have not been a pleasant person to be around lately. Someone please tell me this will get better. Tell me we will survive this. Yours truly, high blood pressure mom!!