Christmas

Merry Christmas

It has been a busy holiday season and we are so thankful to have the whole clan back together. We want to continue to thank Team Logan for all of the support over the past couple of months. Christmas has extra meaning this year because of one special little man. We love you Logan. And Lauren, we love you and are so proud of your strength and resilience during such a confusing time.

HAPPY HOLIDAYS,
THE ZACHER'S




Here is a little photo play by play of Xmas Eve and Xmas...

Logan decided to take a snooze in his chair on Christmas Eve. I love his handsome vest!

 

I bought Christmas lights and put them in between his trays

He fell asleep in Joel's arms. What an angel. I wonder what he is dreaming about? Santa, Elves, presents?

 

Lauren woke up the house bright and early to open presents. See how dark it is, the sun isn't up yet!

 

 

Go Gophers!

 

She was opening a present for Logan

 

He thinks it is too early and he is tired so he rolled over!

 

She was a little frustrated and still had to show him his new super hero socks
 

Logan passed out after the gift extravaganza!

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!!

Exhausted

Today is a bad day. I am sleep deprived, my brain is not firing on all cylinders, and I am emotionally fried. I knew this would happen but it still sucks. Today I let feelings that I work very hard to keep under wraps into my mind. Thoughts of how unfair this is. Regrets over decisions made. And blame being placed where it shouldn't. Today I am mad. Mad that I have a child with special needs. Mad that we have to depend on others to care for him. Mad that those we depend on are not always reliable. I am so mad! I wish I could take my son out in the snow. I wish I could hold him without having to suction his airway. I wish he could talk to me and tell me how he feels. I wish this wasn't so hard. Like I said, today is a bad day and what I say here is true but is said at a very weak moment. I love my son more than anything. He is disabled and medically fragile. That brings an odd and complicated living situation where we have to rely on others to help us care for him. These are not family members or the babysitter down the block. These are nurses that do this as a job. We are in a transition period that is very difficult. We have strangers in our home on a daily basis. In time they will not be strangers. Soon they will be an extension of our family unit. I feel very vulnerable and out of control when it comes to this. I have to give control to a home health agency who hires and schedules the staff. I have to worry that a nurse will call in sick or not show up. I am this child's mother, and it is my job to care for him but his 24/7 needs of meds and monitoring around the clock is too much for a set of parents to accomplish while taking care of another child and working outside of the home. What this rant comes down to is...I am a control freak that is out of control. I may not be answering phone calls and emails right now as I am doing my best to keep it together. I have to focus on family right now and how to make this transition work. I am procrastinating many things in order to survive the day to day tasks. I am sure I will sing a different tune in a week or two. Enough about me and on to the Logan update... He is doing well. I love to see him in his own clothes! He is sleeping a lot and does not tolerate a ton of activity. We are trying to tweak his humidification system. Logan has what is called a trach collar. It is basically a mask that goes over his trach and hooks to tubing. He has an IV pole that houses machines that humidify air and oxygen and then deliver it to Logan's trach. Because we are bypassing his upper airway he loses the natural humidification that the nose provides. If the air is not humid enough, Logan's secretions thicken. In turn he then has difficulty coughing them up and we have difficulty suctioning it. He has had a lot of drops in his oxygen saturation today. He is on oxygen and we are playing with some of his medications to encourage his secretions to thin out. This is a fine balance. When the secretions are too thin, he needs more suctioning which can often stimulate increased secretions. It also makes it hard for him to sleep because he is constantly woken up from the secretions in his trach. Right now he is watching basketball with his dad! It is so good to see him home and content. As I finish this post I already feel more relaxed. These occasional releases of the relief valve are often therapeutic!

Home

We came home from the hospital yesterday. Whoo hoo! It couldn't have gone better, except for my car seat oops! I forgot his car seat at home. Thankfully our nurse reminded us that we had Lauren's car seat in Joel's car. That was about the only major hiccup in the day. Logan did great getting home. We put him on his floor blanket upon arrival home and not too long after that he flipped onto his tummy and snuggled in for a rest. Guess he is stronger than we thought! We spent the rest of the day and evening busy with tasks. Our home care nurse kept Logan spiffed up while Joel and I were busy putting away weeks worth of stuff! Logan was so blessed to have so many gifts including stuffed animals, balloons, a fire truck, cards, pictures, and the list goes on. We have a whole new slew of equipment and supplies as well. His bedroom looks like a mini hospital room but it is still his room. His safe haven. There is something magical about a child's room. Something innocent. I have always been able to walk into my kids rooms and feel a sense of peace. During the first few weeks in the hospital, Logan's room was a place I dreaded. I was scared. Scared that I may not bring my baby boy back to his room.(I pause for a couple of tears) Reflecting back on the past 42 days I am reminded of the incredible journey we went on. An emotional roller coaster describes it lightly. There were some dark days that have been thankfully overshadowed by some very amazing and bright days. Our son endured a two hour long febrile seizure, respiratory failure, septic shock, acute respiratory distress syndrome, and the parainfluenza virus. After all that, we left the hospital with a son who now has a tracheostomy. Medically, he is complex and it scares the heck out of me. But he also returns home as my Logan. My wiggle worm, my cuddle bug, my bubba. He is still Logan. Handsome, brown eyed, and innocent. Today Lauren returns home. She told me over the phone last night that she was going to give Logan a big hug. I can't wait! She is so amazing. So strong and courageous. She does not see Logan's disability she sees her brother. I am so proud of how she has handled all of this. So, now on to new challenges. I know the days ahead will not be a piece of cake. We have a staff of nurses to train, a new routine to work out, a medically fragile kiddo to keep healthy, and Christmas to prepare for. I look forward to the new year and a fresh start. Once again, I cannot say thank you enough to all of our supporters. Team Logan is amazing. We are so blessed to have all of you in our lives. I write this post also with a heavy heart knowing the events that transpired this past week in Connecticut. Such a senseless tragedy. I am also thinking of my co-worker who lost her husband this week. All too soon. I don't know how to make sense of any of the loss. What I can do, hug my family a little tighter and thank The Lord for what I have been given.