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.

Home for the holidays

We have a new planned discharge date for Logan...Saturday December 15th. We wait for all the pieces to fall into place. Logan is doing great medically but I am noticing how de-conditioned he is as we try to get him up and about in his room. Last night I had him in his wheelchair. He was on the "nose". Those that follow my blog will probably see me write about the "nose" in the future. The "nose" is a small cover over Logan's trach tube that protects it and also humidifies air as he breathes. It acts as his nose!! Brilliant name, isn't it!

Back to the wheelchair, he was in it with nose on and was very agitated. We have seen Logan be more agitated than normal over the past two weeks. It could be a whole host of things. I have to remind myself that he is two years old and there is such a thing as the terrible two's. He may have his own norm when it comes to development but he is still a toddler and with that comes power struggles and behaviors!

Along with the agitation has come tongue and lip biting to the point of bleeding. He has cut open his lip and the under side of his tongue from the repeated biting. It is a battle and unfortunately we have no means to fix it other than medicate him to encourage relaxation, give orajel and tylenol in case he is teething, and just sit and watch in agony as our child tortures himself. He doesn't seem to realize how much it hurts to bite himself. Who knows if this is related to his underlying unknown diagnosis or if it is my own interpretation of pain or in this case absence of pain.

I am also worried that he is agitated from the constant suctioning as he is so juicy from both mouth and trach. I pray the biting will cease when we are home and he is more comfortable. He continues to wean from the drugs. Right now he is on a methadone wean. They are holding on the ativan wean for now. One thing at a time for this kiddo.

Now back to the discharge front...I have had the opportunity to interview many great and well qualified home health nurses and our home health company is working very hard to get us staff. We should have a solid schedule soon. We have been fortunate enough to have about 10 people interested in working for Logan and most have experience with pediatrics as well as kids with trachs. I am so relieved to know that we will go home with a staff of nurses that are qualified and comfortable with his needs. The last thing we need is to have to teach nurses how to take care of a trach when we barely know what to do ourselves! Now we will have knowledgeable resources to learn from. Logan will have about 5-6 nurses on his staff and possibly a few more to fill in here and there.

My family and Joel's family have been working so hard the last month to get our home ready for Logan. We have new laminate floors, fresh paint, a clean and painted bedroom for Logan and tons of other odds and ends complete. My dad is a contractor and can pretty much fix and build anything. He and my mom have traveled many miles over the past few weekends spending hours fixing and cleaning our home.

Joel's parents Skip and Cindy have also spent many miles on the road. They also have worked hard to get our home ready. Lauren has spent most of her weekdays with Skip and Cindy either at their home or at ours. They are teaching her so many good habits and she has been so respectful to them.

I am so proud of our four year old daughter, Lauren. She is really coming into her own. Her personality has really blossomed and she is growing so fast. I love to listen to her talk. She is a hoot. I think she has her dads sense of humor! I had to tell her we were not coming home as planned and she did so well with the news. I told her she was going to grandma and grandpas one more time and then Logan would be home. She had such a good attitude and just said "and then we will be back to normal?".

Normal, what is normal. Life feels nothing like normal these days. Living at a hospital where time seems to stand still while life around you still goes on is not normal. We will be home soon and normal will return. It will take time to create a new normal but it will be great when we do. And we will be home just in time for the holiday's!!! Yippee!

Delayed discharge

Hello Team Logan...

I have been off the radar for the past week and for a good reason. Spending time with Logan as he gets stronger and working to coordinate his discharge home from the hospital. We had a planned date of discharge for tomorrow Tuesday December 11th but have to postpone. Not because of Logan but because we are still working on hiring in-home nursing care. As those of you who live in the midwest know, we were hit by a nice snow storm on Saturday and it put a damper on the interviews with nurses that we had scheduled. I have had many great interviews today and will have more in the next couple of days. By the end of the week we should be in a better spot to be discharged home.

The hospital as well as Joel and I agree that going home without any nursing help would just be shooting us in the foot. We need something lined up, even if it isn't until the end of the week so that we don't burn out within days of returning home. So the plan is to take it day by day this week and as soon as we are in a good spot we will jet out of the hospital!! I will attempt to get more info out as the week progresses. I am running a little on empty at the moment and need to recharge my batteries! Any help from those in the area would really be appreciated! I could always use a visitor, eggnog latte, or just friendly phone call!

Excited and stressed

We are almost finished with Logan's most recent road to recovery! Wow, an end in sight. Seems like a dream! We plan to be home in a little less than a week. Logan is doing great and could probably go home today but we have to be patient and finish putting a few more pieces of the puzzle together to make our home ready.

Today was a big day for me when it comes to getting Logan home. We had his care conference today and had all the big players involved...county case manager, care manager from home care company, care manager from Children's, lead RN from pulmonologist group, PICU physician, respiratory therapist and respiratory therapist from home supply company as well as Joel and myself. This conference was to get the details of discharge lined up. We have ironed out the big stuff and I am happy with the outcome.

We will be going home with an appropriate amount of nursing care for Logan. That was my biggest concern. I wanted to make sure we had enough trained hands to take care of Logan so that we could continue to be a family despite the hospital within our home! I titled the blog, excited and stressed because I am both. I am so happy to get us home but nervous. The meeting today calmed some of my nerves now knowing that we have many resources to draw from. We will not arrive home and be isolated. We have help in the home and just a phone call away. We have advocates. We have always had these people, but now we are all on the same page and Team Logan will continue to move forward.

On the Logan medical update front, he is still weaning off of the narcotics and benzodiazepines. These are the medications used to wean him down from the high doses of medications that were used to keep him asleep while he was intubated. We found out this morning that the taper down of the drugs was too fast for Logan. He was agitated, had a fast heart rate, and some diarrhea. Poor little guy was pissed off! So a couple of medication doses later and we have a snowed and snoozing kid. He is happy as a clam.

His tracheostomy is doing pretty well. He does have an area of breakdown at the site that we are watching closely. The skin nurse will come through with some ideas to help troubleshoot the problems that may arise. He is getting stronger every day and when I picked him up last night he snuggled into my arms. I am so glad to see my little man is back! I was so scared that the two hour seizure would have scrambled his brain to a point that he may not wake up as the same Logan I knew. I think I have been put at ease! What a miracle!

Our genetic physician stopped in today to check on Logan. I asked her more about the seizure and her thoughts about Logan's future and if seizures were in it. She said it is possible. He may be having subclinical seizures (those we don't see) or he may have just had a febrile seizure that was complex. She said the keppra (seizure med) will need to be continued for many months until neurology is ready to wean him off but he will need to remain seizure free in order to stop the medication. She said she would become concerned if he was having seizures while on the keppra.

This has not changed her search for a diagnosis. She still feels strongly that our answer lies in the DNA sequencing that is in progress. She asked that I keep in touch with her if symptoms arise or change and that as soon as they know anything they will also be in touch. I really appreciate the conversations I can have with her. I feel as though she listens to me and takes my opinion into account. Sometimes doctors can make you feel dumb. This is the same in any other situation where you know less about something such as when the mechanic tells you the thingymajigger in your radiator is broken!!! With her and almost all of Logan's doctors, I do not feel that way. I feel like part of the medical team and that is because I am his mom. These doctors have been around the block a few times and understand how important the family is. OMG, they listen!!!

So I finish this post with a smile on my face. There are still hurdles ahead but we have a plan in place and my to do list can be accomplished!