Wednesday, December 26, 2012

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!


Sunday, December 23, 2012

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!!

Tuesday, December 18, 2012

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!

Sunday, December 16, 2012

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.

Wednesday, December 12, 2012

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!

Monday, December 10, 2012

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!

Wednesday, December 5, 2012

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!


Friday, November 30, 2012

End of Week Recap

Today is day 22 here at Children's Hospital PICU. Logan has come a long way. We started this journey in Brainerd, made a stop in St. Cloud for a few days, and then proceeded down to Minneapolis for the duration of the trip. Our final stop should arrive in a little over a week...HOME!

Logan has gone through a two hour febrile seizure, intubation twice, acute respiratory distress syndrome, and a tracheostomy all in this time. His body has been beat up a few times to say the least. He has made miraculous progress in this time. I am so proud of my little boy. His strength and determination are of super hero status!

This past week has been hectic. Logan has gone from full vent support to minimal vent support this week. He is more awake and Mr. Wiggles is back. The doctor asked Logan's Grandma Cindy if his movements were normal. They were, and had they not been they may have been worried that he was having withdrawal from his medication wean.

I have had an overwhelming week myself. We had tracheostomy class. Both the grandma's, Joel, and myself attended. It was almost eight hours worth of information. We learned a lot of great things but also learned of some limitations that the tracheostomy brings. We didn't even think about how it may change some of the activities Logan participates in such as swimming. We also can't let him play in a sandbox to name a couple of things. We have to adjust once again but it is always hard. Instead we will find things that work for Logan that are just as fun!

For those of you that read my blog post this past week where I basically let it all out, it is getting better. We should have resolution to the hours of nursing we will get this coming week and I was heard by those that needed to know how I felt. We have some great advocates outside of the hospital and within. It is amazing how many people are involved in the care of Logan. I could write a blog post just about the different agencies both private and government, doctors, nurses, therapists, medical equipment/ supplies, respiratory therapy, school programs, and on. I forget how many people  we are connected with. I am so thankful that this team of people around us do their jobs with such passion and skill.

There are a lot of balls in the air and a lot of people juggling them. I have been reminded this week that I am the coordinator of this circus! It is not an easy job. Thankfully we all have the same goal in mind, to get Logan home! As usual, I will keep posting the updates of our progress. It is heading in the fit direction! I am also attaching a couple of photos from this week.


Logan sitting up in a chair for the first time in a couple of weeks


Somehow we managed to get the tree up!


Tuesday, November 27, 2012

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!

Monday, November 26, 2012

Ventilator, what ventilator?

Logan is slowly graduating from the ventilator. He had his trach changed this morning. The site is beautiful! Dr. T did a great job. Logan slept through the 30 second procedure!

After his morning fluff and buff, they put him on CPAP for the day. Once again this is where Logan drives the breathing but the vent gives him a little pressure behind it. He did great and the nurse and I asked the intensivist if we could put him on a trach collar. This is where the ventilator is disconnected and he has a little dome over the site delivering oxygen. After 2 hours they will put him back on CPAP and possibly on the traditional vent to give him a rest for the night. He is doing so good holding his own.

On another note, I went to the Ronald McDonald house and met some very nice people tonight. I want to give a shout out to Miss Lily in the NICU and her mom Annie and grandma Barbara. Lily is a preemie and they describe her as a strong feisty girl. It was so nice to visit with them and have them share their journey. We are not alone in parenting these exceptional children and it really does take a village! Or in our case, Team Logan!



Sunday, November 25, 2012

Smooth Weekend

Logan has had an awesome weekend! He is off all IV medications. He is getting trials of CPAP. Basically he is in training for a marathon. Over the last two days, they have been giving him warm ups where he drives the breathing. So far so good!

Tomorrow ENT will come and do the first trach change. This means they will change out the plastic piece that is seen sticking out of his neck. At that time they will take a sneak peek at the surgical site to make sure it is healing well. It is a very quick and easy process and shouldn't bother Logan too much. At least nothing a little Tylenol, Ativan, and methadone can't fix!

As for the rest of the week, more warm ups off the ventilator until he is ready for the marathon. I don't think it will take long to get to that point. We take a class to learn how to take care of the trach. And from there I have no idea. I think at that point we will be looking close to be heading home.

Logan still has his days and nights mixed up! He has been giving the night shift nurses some grief. It is hard because I know what he needs when he is upset, space to kick it out! Unfortunately a crib and a kid hooked to a ventilator don't mesh well with that idea. Darn it! I am anxiously waiting to hold him again. Hopefully tomorrow.

For those who plan to visit us at the hospital, we are still in the PICU but were changed to another room. We have out-stayed our neighbors, and when I say this I mean more than a handful of kids have come and gone from the rooms around us. They sure know how to move the kids through. It is amazing how resilient children are. They come in intubated, extubated two days later and the next day transferred to a med/surg unit. So we had to move as they could not leave us to our lonesome at the end of the hall. Now I am close to the ice machine. That was the highlight of my night!

Tonight I hope for some good rest. The nurses aren't the only ones he keeps up at night. He likes to pop off his vent tubing from time to time and loves to pull all sorts of other shenanigans to make his vent alarm. Lets just say, I'm not amused! So off to bed and ready for the week ahead!

Friday, November 23, 2012

Mommy Meltdown's

This momma had two meltdowns today. Ugh! I started bawling when I arrived at the hospital today. My sister Chelsea stayed the night with him last night and I came to the hospital about two hours after she left. I walked in and Logan was laying in the bed appearing upset. His eyes were open, his face was crinkled in a way only Logan could, and he was moving as much as a child in wrist restraints could. By the way, the restraints are to keep him from disconnecting the ventilator, not as a means to torture!

I was not upset at the nurses. They were doing everything they could. I was upset with myself for leaving him last night and for not being there sooner. My sister Chelsea was a wonderful replacement. It was not her that was the issue. I always feel guilty for leaving Logan.

Once Logan calmed, I found that they had weaned his versed drip off and he only remains on morphine. That is awesome but at the same time scary. As I have eluded to many times, Logan is a wiggle worm! He is like Houdini! He can get into all sorts of trouble!

So now my child is awake. I have been waiting over two weeks for this but now he is showing emotions. It is so hard to not feel like you can console your child. I can't hold him yet. His trach is too fresh and tender. All I can do is stroke his head, hold his hands, and talk in my non soothing mommy voice! This is so hard. I just want to take him home.

I knew this time would come and I knew this was going to be the toughest next step. Getting better isn't always easy. It takes a lot of work to manage all the tubes and wires as well as maintain a clear airway. Logan, you are giving mommy a run for her money.

We are also having to share our nurse with another patient. That is always hard. I have a hard time knowing when to ask for help. I may be a nurse, but tracheostomies are not my strong suit by a long shot! I am still learning the nuances to his trach. So at shift change a couple staff members came in to move Logan to a crib. He started in a crib, then to a bed with a scale, and back to a crib with a scale today. The nurse told me that was the plan today. Ok, no problem. At least I thought.

They came in, scooped him up and rocked his world. Not in a good way. I am not sure if the nurse helping knew how fresh his trach site is. The way she held him put him in a lot of pain. Lets just say, I was a little pissed off. He was shaking afterwards and was full of secretions. I had to ask for pain meds. I was almost shaking myself. I think I have done a good job at stepping back and giving up control. In that moment, I just about lost it and immediately took control. After they all left I spent a few minutes having a good cry. I was upset at how the transfer went and I felt horrible for my son. Things are better now and the scooper upper has moved on.

Right now we are in a peculiar spot with Logan's recovery. He is getting better but the pain and discomfort make it seem like he is worse. It is so deceiving. Like I said, getting better isn't always easy. We will continue on the path of healing knowing that in the near future, this momma will be able to hold her son and soon after, take him home! Until then, we manage, and sometimes cry!


Thursday, November 22, 2012

Thanksgiving



HAPPY THANKSGIVING!

Oh how thankful we are! 

We have had a whirlwind couple of weeks. We could not have made it without our family, friends, hospital staff, and especially each other. Logan has been on an unbelievable journey. I am so thankful for his unwavering strength and determination. 

We have been showered with love by those we know and kind strangers who we may never know. 

On this Thanksgiving, I am so thankful to have Logan. He is an angel on earth. He is a teacher of many things, especially unconditional love. 

Mattie Stepanek - “Sad things happen. They do. But we don't need to live sad forever.”

And sad we will not be as we celebrate this day of thanks!



Wednesday, November 21, 2012

Tracheostomy Day 2

Logan had a great day today. He seems to have his days and nights mixed up. The nurses had a hard time getting him to sleep last night. I guess he just wants to have a pajama party all night long. For the early part of today he was pretty tuckered out and then started fighting through the sedation. What's new! The doctors and nurses have started weaning his sedation in order to get him to wake up so they can start having him practice breathing on his own.

It is going to take some time to get his lungs up to full strength but I have a feeling he may surprise us! He has a lot of secretions in his trachea which the nurses are working very hard to suction out. We do not want him to develop pneumonia. Once he is awake and able to squirm around and cough (which often is few and far between) he will better be able to manage the secretions. The new tracheostomy will allow us quick, easy, and more comfortable access to his airway to suction when he is aspirating saliva.

Joel is with him right now. I am having some mommy-daughter time tonight and it has been great! We went shopping at Target, and many of you know that is my favorite place to be! It felt great and I felt like things were getting back to normal (a little bit)! Lauren had her ritual icee and I had my eggnog latte. Somehow we got out of there without Lauren asking for a cookie. She must have been too excited about all the Christmas decorations.

Tomorrow Lauren will visit Logan at the hospital. They gave us the green light today. Because she is four years old, she is just under the age limit to be allowed to visit. I am so excited for her to see him. I have been trying to prep her for what she will see. She knows that the "straw" is out of his mouth and I told her he has a new tube in his neck sort of like the tube in his tummy. She asked if white stuff is going into it. "Like milk mom!". I told her it was a little different from that and that it will help him breathe. I am just so proud that she is asking questions. We were looking at some family photos tonight and she started to cry when she saw Logan. She said she missed him. It just breaks my heart but tomorrow couldn't be better timing.

I am hoping to get some great photos tomorrow of the kids. We will be spending the morning and evening with Logan but have decided to go to my aunt's house to spend Thanksgiving dinner. I think it will be really important for Lauren to see both her parents at the gathering as she will remember this holiday more than Logan will. We will give him some quiet rest time and let the nurses spoil him!

For those of you on Facebook. Our friend Carmen has started a facebook page for Logan. It is Team Logan. Check it out if you have time. She is raising money for Logan's medical needs and will be having a benefit for him after the new year. Oh, how thankful we are!

Tuesday, November 20, 2012

A New Tube


He did it! 

Logan now has his tracheostomy. It is a bittersweet day. The endotracheal tube is gone so we can now see his beautiful face. Now we venture down the road of learning his newest tube. I say this because this is not our first rodeo with a new tube. Don't forget he has a feeding tube. 

He is resting comfortably now. They are starting to wean him off of his sedation medications. It will be a slow process and the nurses will be watching for signs of withdrawal. There will be no monkey business with his trach site for a week. Then the ENT physician will take out the sutures/stitches, make sure the stoma (the opening in his neck) is healing well, and then we go from there. 

We will have to take a class to learn how to care for the site and tube. We will also have to demonstrate how to change and care for it. I will be busy working with our home care agency to hire and train nurses. He also needs some slow physical rehab as he has been immobile for over two weeks. 

I have to admit, I am overwhelmed right now. I have a lot of phone calls to make but some days I just don't want to do it! There are a lot of arrangements that need to be made to get us ready for home. We will be here a while but I am sure the time will go fast. I think my biggest worries are finding nursing staff and working out a good schedule. Joel keeps reminding me that it is going to be okay and that it will all work out. I know it will be okay, but right now it doesn't feel like it! So this mommy may have a few more meltdowns as the weeks go by! 

Thank you again to Team Logan! We felt your prayers carry us through today!

Orders for tonight...TLC. 

P.S. A former co-worker of mine, Carmen is putting on a benefit for Logan. There will be an event after the new year. She is also setting up an account to take donations in the meantime. I will update that information as soon as I have it. We have been fortunate to make ends meet for a long time but as his needs continue to increase so does the financial burden. We would like to make sure he has a safe environment to live in, a bedroom equipped for his needs, and the supplies and equipment to help him excel in his development. We are so thankful to have Carmen advocating for Logan as his parents can tend to be proud and stubborn! 


Monday, November 19, 2012

It's Go Time

Logan is scheduled for his tracheotomy tomorrow at 11:00am. 

To be honest, I am not sure what to expect! The nurses have been prepping us all day for what is to come and tomorrow we will hear many things from his doctors. He is strong enough for the procedure and the time is right! 

I am sure it will be a restless night for me as these nights always are. Tomorrow will most likely be a blur. I ask once again for prayers to be sent Logan's way. He is still fragile right now but we all know he is also a fighter. I have no doubts that he will roll with the punches and give the staff a little run for their money while he is at it. I will update the blog as soon as I can tomorrow. 

Sunday, November 18, 2012

Fighting the Sedation




After a nice warm bed bath Logan is resting peacefully, at least for a little while! My son seems to be trying to break through all of his sedation. Last night he had the nurse busy! He had his arms going all different ways. It was so funny, he would be sleeping soundly and the next thing you know he would be moving all over the place. I take this as a good sign, he is getting stronger!

Logan has had a great couple of days. Equipment is once again being slowly taken out of his room. His arterial line was taken out this morning. They have stopped a few medications and added some new ones. He is taking breaths on his own. 

The tentative plan is to keep him sedated and finish getting him on track. He may have the tracheostomy on Tuesday. We will know the exact date and time on Monday. 

Joel spent a few nights at home with his parents and Lauren. Lauren seems to be doing well. I think the shuffle from place to place is becoming somewhat normal to her. She doesn't seem sad and she seems to understand that Logan is in the hospital and is sick. She had a day at preschool last week and two days at daycare. All in all, I think she will survive this with minimal scarring! 

I have had a hard time going home. I decided to stay at the hospital and had great visitors and took time away for meals and even went and bought some new jeans and boots. I feel so bad that I didn't go home last night to spend with family and friends, but it is so hard to be at home without Logan. So tonight Joel and I are both staying at the hospital. It will be nice to have some time with him as we have almost been like ships passing in the night.

If you do not hear from me tomorrow that should mean Logan is having a great day. I will keep everyone posted on his surgery date. Happy Sunday!

Friday, November 16, 2012

He's Doing Great!

Logan has had a great couple of days. The nitric oxide was weaned down this morning. His ventilator was switched from pressure support to volume support. This basically means he needs less assistance to breathe and is taking breaths on his own. He has turned the corner!

To be honest, I don't know what the next step will be! I know he has a little more to go when it comes to weaning on the vent. I am assuming that the goal for the weekend will be to get him in the best shape possible for his tracheostomy. We do not have date/time scheduled as it is all dependent on Logan. His ENT doctor will be here next week.

So tonight I pray for continued improvement for Logan. He still remains on the ventilator and will remain until his trach is placed and then will have a ventilator attached to the trach until he is ready to be weaned off of that. Having the surgery will have its risks as any surgery would. If possible, it would have been more ideal to have him a little stronger and healthier beforehand. That being said, he is making amazing progress and we are going to continue to work with cards we are dealt!


Thursday, November 15, 2012

On the mend

I took a day or two blog break. I hope it didn't upset too many people! It was for a good reason. I didn't have much to say and was too pooped out to write.

Logan is doing great. And I say this as I knock on wood! Logan has had two great days and the doctors are working to wean him down from the nitric oxide he was being given through the ventilator. He seems less sensitive with his breathing and is even having some good rest periods while on the ventilator. Mr. Wiggles always tries to make an appearance despite being on many medications that are all meant to make him rest. Finally he is having times during the day and night where his heart rate is normal and he is snoozing well.

So, all in all he is doing well and there isn't much else to say. The next few days will be more of the same. Continue to wean him of the nitric oxide and then work on weaning him off the high pressure support he is getting from the ventilator. When he is ready and his lungs are more compliant, he will have the tracheotomy. There is no date set as we are continuing to follow Logan's lead. I imagine some time early to mid next week. Things could change and I hate to set myself up for that expectation.

I am exhausted myself. I have spent the week at the hospital and was ready for a break at home. This evening I am home with Lauren and Joel's parents and our dog Molly. I am a little irritable tonight. I look around the house and see all the things that need to be done. I walk by Logan's room and can't bear to walk in. I am still very scared and become overwhelmed when I go in there. I am in need of a good nights rest to recharge my batteries.

Tomorrow is another day and should be a good one. We have had some great visitors and wonderful meals. Thanks Kate for the Greek dinner! Joel loved it! Rachel B, thanks for the chili. I think it is on the menu for lunch tomorrow! We have been so well taken care of by all of the staff and by our friends and family. I just can't say thank you enough. We will continue to need to lean on you all in the coming weeks as this journey is going to have many ups and downs. The tracheotomy procedure is not the end and coming home is going to be difficult.

There is always a period of adjustment coming home. It is like bringing a newborn baby home. There is excitement and apprehension. There are so many unknowns and we will have so many questions about our child's new trach. I know I am jumping ahead but for those who know me, that is what I do. I worry and I plan. Kinda sounds like what most mom's do!

So, tonight I will rest my head while cuddling with my daughter knowing Logan is in great hands and is enjoying his guy time with dad. Thank you Team Logan for continuing to cheer him on!

Tuesday, November 13, 2012

More of the same

Today was more of the same. Watching, waiting, troubleshooting. It sounds so boring! To me that means we had a good day. Last night was full of events...arterial line and nitric oxide so a benign day is deserved!

Today there were a couple of blips on the radar but nothing to really worry about. The doctors and nurses worked to wean down his ventilator settings. He had a couple of medication changes and a sedation vacation (meds are shut off until Logan starts to wake up). This is done to do neurological checks, to see that he moves his arms and legs and that his pupils are reacting.

Logan had a few visitors today that also kept Mommy busy. Daddy stopped by after work but still was not feeling well and went home for more rest. Tonight I write this blogpost from a room at The Ronald McDonald House within the hospital. It is just like a hotel room! I didn't realize how loud all the machines in Logan's room were. Staying in here is a little respite from the chaos of the PICU while remaining in walking distance to Logan's room. It is so hard to leave him, but is healthy for me. I am thankful to all the people that recommended I do this.

All in all, my kiddo is still sick but we are coping. We are making the best of this situation and couldn't do it without the support of Team Logan! As for tomorrow, we don't know what it will bring but I am sure my first question will be, "how was his chest X-ray?". So tomorrow I will let you know. In the meantime I may turn my attention to the TV. Suddenly I am hearing Justin Bieber and his girlfriend broke up. Oh boy, I am really out of the loop!!!

Arterial Line


Last night I mentioned that the Intensivist placed an arterial line last night. This is a special IV in the arm that goes into an artery instead of the vein. He was having trouble on the ventilator. His breathing was labored, his oxygen levels were low, and he was requiring more breaths and pressure to give the breaths. The doctors goal is to prevent harm to his lungs and he was getting in a spot where damage could have started to happen.

So they put in the arterial line, measured his arterial blood gases to see what his oxygenation was like. They then started nitric oxide which is a gas that helps improve the delivery of oxygen to the lungs. After that his numbers improved and he rested more comfortably.

His X-ray this morning is still unchanged. The intensivist came in this morning and calmed me down! He said Logan is very sick but he is also fighting a nasty virus. He said we aren't doing anything out of the norm in a situation like this. He said there will be setbacks but that they will treat them as they come. He said this is definitely going to take some time. I feel better knowing that they treated his symptoms quickly and that he rests more comfortably. 

Today will be much of the same. Thank you to all the wonderful visitors yesterday. Patti and Joy, your visit meant so much! Mom, Dad, you guys are the best support a daughter could ask for! Sarah and Corey, thanks for dinner. Because Joel went home early I did a little stress eating at about midnight and had the second plate! Joe, you are always a calming friend to be in the prescence of. My thank you's could go for days! As always I will keep the posts coming. 

Monday, November 12, 2012

A new week

One week has passed and now on to the next. Logan slept well last night, meaning his sedation was at a good level. He continued to have a fever but was controlled with tylenol. His chest xray this morning was really no better at all. The pulmonologist today (a new one as they change over Monday's) said he thinks that his xray is showing signs of having ARDS (acute respiratory distress syndrome) and that he does see bilateral pneumonia but it is not the typical pneumonia that consolidates into areas of the lungs. He sees inflammation and edema (excess fluid). They will continue to give him a medication called lasix which is a diuretic (makes him pee) in order to keep him on the dry side to keep any excess fluid out of his lungs.

He still requires pressure support ventilation. He does not do well when his chest is constricted by his vest. Today they put the vest on him and his oxygen saturation dropped. By wrapping his chest it restricted the air flow. The respiratory therapist increased his oxygen concentration and his numbers quickly improved. To me, that was an example of how fragile he is right now. Even the slightest change can make a difference. The doctors continue to say, "more of the same". Support, support, support. And above all, TIME! This is the hardest part, the waiting.

As I waited this late afternoon and evening Logan had some struggle with the ventilator. The pressure  and oxygen concentrations continued to be increased and his sedation and muscle relaxer doses increased. His breathing became more labored and his oxygen saturations required an increase in the oxygen concentration to stay above 90%. The intensivist is at his bedside placing an arterial line. This is like an IV that goes into his wrist that will measure many things including his arterial blood gases. Honestly, I am not sure where this is taking us but I know we are in good hands. Dr. M has some tricks up his sleeves with interventions but he needs the line in order to gather more data about Logan's ventilatory status. Again, support, support, support! I will do my best to update the blog in the morning as I am sure a few things may change. Like I said, he is in good hands!

On to another topic of our day...I know I have eluded in past blog posts the possibility of Logan having a tracheostomy (opening thru the neck to the trachea that would act as his airway). During this hospitalization there has been a lot of talk between the physicians, my husband, and I regarding this. I have not talked at length about this because it has always been a distant possibility in the past. Now, it is not so distant and is in fact on the table right now. We are weighing this heavily and talking to as many people as we can to get perspective on this.

A tracheostomy would most likely be the best way to protect his airway from aspiration which has continued to result in aspiration pneumonia's which land him in the hospital. He would be at risk for other things such as chronic bronchitis and other airway related infections. It would provide us a way to better clear and protect his airway especially during illness. Right now, we find that the second he gets a fever he become lethargic. He then stops coughing and stops protecting his airway. From there it goes and you know the rest...steroids, antibiotics, and maybe the hospital. We cannot keep on this rollercoaster and my fear is that one day again, similar to the circumstances that landed us here now, we will not be able to provide adequate emergency care.

Like I said, this weighs heavily on Joel and I and we do not take this decision lightly. After much discussion we have made a decision. We may have not told all close family and friends and some of you may read this asking why we didn't call. We can only do so much right now.

Joel and I have decided that a tracheostomy is in the best interest of Logan. We have weighed the pros and cons for many days and I could go on and on telling them to you but I will spare you. This is the hardest decision we have ever had to make for Logan but we feel it is the right one. Right now we ask for your support as this is a life altering decision. In the long run, the hope is that Logan will only require the trach, no ventilator and that is the goal for his discharge. Over time we will become more comfortable with the trach and we are being told that it will become part of our daily routine as all other changes have. It sounds big, bad, and scary. But as our ENT doctor said, at first it is like changing a dirty diaper for the first time and then you just get used to it. So we will, but we may need a little help getting through it!

This will change the course of our stay. As we sit now, the best estimate for him to recover from the virus is a week or so. Once he is tuned up and ready, he will go under anesthesia and have the trach placed and then be on a ventilator for about a week and in that time be weaned off to get ready to go home. As always, these are rough estimates but it helps us try to plan ahead.

So now that my brain is fried, I am going to end this blog post and pass on my thank you's tomorrow.


Sunday, November 11, 2012

Day Seven

Today was day seven. Seven days in a hospital bed. Seven days of fighting infection. Seven days of prayer. Seven days of "why".

We have survived seven days of chaos and ups and downs. Somehow we are still standing. This infection has brought a mom and dad from the brink and back a couple of times. We have had moments of fear that we are going to lose our child and even a moment where we almost did. Worries that when our child wakes up, will he be the same? We have both been run down and sick. Cried buckets of tears with each other and in silence. We have made decisions that would dictate our child's survival and outcome. All of this in seven days.

What the next seven days will hold is now up to Logan and God. We have given control to Logan, God, and the miracle caregivers at his bedside. Right now his body may be weak but his will is strong. Despite heavy doses of sedation, he continues to remind us that he is here and fighting hard. Progress has been slow but setbacks have been small. The next seven days are a mystery but we will be here cheering him on.

So now after that touchy-feely writing I move to the explanation of today. Logan spiked a fever last night. It has waxed and waned all day. This has not alarmed the staff as we do have a source but it made the intensivist obtain a fungal culture from down his endotracheal tube just to be sure. Results on that will not be back for a few days. In the meantime he remains on antibiotics to cover him in case of onset of a bacterial infection.

His ventilator has been changed over from volume support to pressure support. This decreases the risk of damage to the lungs from the ventilator but is also a sign that Logan is needing a little extra help. His lungs are not as compliant as the doctors would like and his X-rays just aren't clearing as expected. His lungs sound good but this is deceiving. My child's lungs at baseline sound coarse and yucky. The junk in his airways is thick and just doesn't want to move out. Seriously, Logan's lungs really don't need to become a homeless shelter for germs.

He is still receiving a lot of medications to support him. The staff is watching him like a hawk. We are not out of the woods and most likely the breathing tube will remain in place for a couple of days at least. Thank you for the outpouring of support we have received. I wish I could take every person up on their offers for help. Please continue to offer because we never know what we will need from day to day. I hope that does not sound selfish but I think this is one of those times to ask. I am learning to accept help and realizing how great it feels to accept. I don't think I will ever be able to repay the kindness but know that my angel son has a way of doing it for me. Goodnight everyone.

Fever

I am not at the hospital right now. Mommy is sick and home resting. I plan to return this afternoon after a good nap! Joel called with an update this morning. Logan had a fever of 102 last night. They are treating it with Tylenol and keeping it under control. His xray is unchanged and the pulmonologist is going to add another medication to help break up the crud in his lungs. I am not sure the name of it. The doctors think the fever is related to the virus as he has been on many antibiotics throughout.

Joel is also sick so my sister is on her way to the hospital to trade places. Unfortunately this virus is hitting Joel and I. I am sure the tiny bit of stress we have been under is not helping our situation!!! Otherwise, Joel says Logan has been out cold with the sedation. Today we ask for some extra prayers and strength headed his way. His progress has been pretty stagnant the past few days and the fever does not help the situation. Time and Logan will continue to dictate the situation. Thanks as always!

Saturday, November 10, 2012

Evening update

Logan had a restful day today. He remained well sedated and just slept! This afternoon the doctor made some adjustments to his ventilator but said it was par for the course. Nothing to worry about. I went home this afternoon. I was strongly urged by Logan's doctor to go home and rest. Unfortunately I have caught the crud bug. I arrived home and realized I felt a lot worse than I thought. An evening and night of rest will do me some good. I am no good for Logan if I am sick.

I have had a meltdown or two tonight. It is so hard to be at home where life seems to go on knowing that my baby boy is in the hospital fighting for his life. Okay, that may be a little of a dramatic statement but I guess being on a ventilator is a life saving measure. I hate to leave him even for a few minutes. I worry constantly. I know he is in good hands and Joel is doing a great job.

Tomorrow is a new day! Goodnight!

What day is it?

I am loosing track of what day it is! Oh well! On the bright side, Mr. Logan had a great night. He slept well. The nurse worked really hard overnight to help loosen up the crud in his lungs. He again didn't tolerate his vest treatment and had a drop in his oxygen saturation. Otherwise all was well.

Intensivist said his chest X-ray was about the same. He plans to continue to let Logan rest and see what his lungs look like tomorrow. They will continue his vest and nebulizer treatments and continue to manage the ventilator settings to optimize his oxygenation. If there is worsening of his respiratory status along the way they may decide to perform a bronchoscopy (washing out of the lungs) but only if worse. Thus far he has remained quite stable. Only time and Logan will tell.

He is receiving phenobarbital as an adjunct sedation medication. He has been waking up regularly and fighting the vent. The nurses were constantly having to give him a muscle relaxer. The doctor added the new medication this morning and so far it is working. He has also decreased the antibiotics as we know this is a virus. The reasons to stay on antibiotics are to prevent a secondary infection but too much antibiotic use can kill off some of the normal flora (bacteria that lives in your body at baseline).

All in all, today will be a day to sit and watch Logan breathe and sleep! He will have some visitors today. Thank you to those that came to visit yesterday. We had some nice surprise visitors! Continued thanks for all the support and prayers!



Friday, November 9, 2012

Parainfluenza

We have a source of infection...Parainfluenza!

Parainfluenza is a respiratory illness that causes upper and lower respiratory infections such as bronchitis, croup, and sometimes pneumonia. It is most often found in infants and children. It generally causes cold symptoms and in adults is generally mild. Of course Logan is more susceptible to respiratory illnesses!

His chest X-ray was stable today. Today will continue to be a day of rest for Logan. Sedation with versed and morphine still are not enough for Logan. He has been getting bumps of a muscle relaxer often. In an attempt to decrease the use of the muscle relaxer, the doctor added a sedation medication called Precedex. It was working well until he had an arrhythmia (irregular heart beat). The nurse was right on top of it and the doctor suspected it was the Precedex so they stopped it. His heart rate is back to normal now. We are trying to keep his room very quiet and calm hoping that he can rest. He is just so stubborn and has to remind us that he is there. Even with heavy pharmaceuticals, Mr. Wiggles keeps on movin!

His labs have improved including his hemoglobin. The rest of the day will be monitoring and supporting. He looks very peaceful and does not appear in pain. Physical and occupational therapy come daily to stretch him. I wish I had people to come do that for me! He is so spoiled!

Joel and I are having a much better day. Most of the shock is wearing off and our heads are clearer. Aunt Jackie and her boyfriend Mike came to visit and went to pick up Lauren. She is going to go stay with my in laws next week. She seems to be coping well and our daycare provider Debbie said she was telling the kids at daycare all about Logan.

Thanks for the continued prayers and support. I have received a lot of kind messages and cards. I just want everyone know that even if I do not respond, I am reading each one. Words cannot describe how much these gestures mean to me and also to my family. Thanks!

I am going to add a couple of photos from Halloween that I had yet to post. It makes me smile and keeps us strong knowing how amazing Logan is.










Sick Kiddo



There have been a lot of changes since I last posted. Logan is now resting his head at Children's Hospital in Minneapolis. He was airlifted last night. The last time I wrote, Logan was still off the ventilator (it had been removed on Tuesday). He was having significant episodes of agitation throughout Tuesday night into Wednesday. By Wednesday afternoon, Logan was agitated so much he received Ativan to help calm him. We decided to step away for lunch. I noticed he was still breathing fast when we left but he had still been maintaining good vitals. We took Lauren to lunch in the cafeteria.

We returned and Lauren and I went straight to the playroom for some much needed mommy daughter time! At about 2:00, Joel came in and said that Logan was breathing funny and that they were asking a lot of questions. I went straight to his room. Apparently his signs of respiratory distress had worsened while we were gone. When I arrived his oxygen saturation was in the low 80's and I could tell he was pooping out.

They had tried breathing treatments and increased his oxygen with no change. The next step would have been CPAP. This is a mask that delivers oxygen as well as pressurized ventilation to help open the lungs when a person cannot do it themselves. He would not have tolerated that so the next step was intubation. Dr. M was concerned that he may be difficult to intubate due to his anatomy and very recent history of difficult intubation just a couple of days ago. She asked anesthesia to come intubate him. The crew quickly got equipment and the team together and I stepped away.

Leaving him in these situations is always hard and the waiting is always agony. There is always a door you find to focus on knowing that is where someone will come through to give an update. So we sat and waited and watched the door. A few people came and went and one of the people that walked by was the anesthesiologist. The crew that initially responded to intubate him was a couple of nurse anesthetists. I guess they had the anesthesiologist come up because Logan was not going to make it easy! I was told the anesthesiologist was the one that intubated him. Thankfully they had a scope with a camera and they were able to take their time and get a good look before placing the tube.

So back to the door, we continued to watch the door. Meanwhile, Lauren was playing and Joel and I were both trying to do our best to stay calm. Thankfully Logan's home care nurse, Bonnie was able to come right away. I called her because she was the closest person to the hospital and I needed help with Lauren. More people came and went through the door and then after what seemed forever, they came and got us!

We returned to our baby boy. One of my last blog posts talked about the equipment slowly being peeled away after the extubation. Suddenly it was all creeping back in. Logan continued to be very sensitive to stimuli and the doctor and respiratory therapist were constantly making changes to the ventilator in order to make him comfortable and improve his breathing. He had another chest X-ray which was significantly worse than the previous. This was definitely concerning.

As a little recap, Logan is normally a very noisy breather with a lot of secretions. After he had been extubated on Tuesday, his secretions were at the normal level and were easy to control. Every once in a while, the doctor would have the nurses drop down his oxygen levels on the nasal cannula as an attempt to wean him down to his normal half liter of oxygen. It would work for a little while and then he would drop and require an increase. We thought his agitation was related to his sensitivity from coming off the meds and the seizure.

Somewhere along the way, more crud snuck into his lungs. I think that each time he became agitated he would expend so much energy that the next time would be harder to handle. I wonder if he just had an accumulation of secretions in his lungs causing a possible pneumonia and then the last episode of agitation put him in a tailspin. He may also have had an episode of aspiration at some point, we just don't know.

So, at this point in the story, Logan is intubated and mildly unstable. Meds and vent settings are being tweaked. Joel and I are making calls and trying to handle a very irritable and tired four year old that does not have a clue of what is going on around her. Once Logan was more stable Joel took Lauren home. Both of them exhausted. It was not easy to let her go and she didn't want to leave. Those tiger tears coming down her face just broke my heart. It is so hard to do this as a mother. I feel so torn between my children.

My mother in law Cindy and sister in law Jeni came to visit. They sat with Logan while my Aunt Michele took me to dinner. Meanwhile the doctor continued to hover and the tweaking of his vent and oxygen levels continued. I returned and Cindy and Jeni went home. I stepped away to make some phone calls and Dr. M. came to speak with me.

She said she was worried about Logan. She was concerned that he may continue to worsen and that the best thing for Logan may be to go down to Children's Hospital. I also shared that nagging concern as I could tell earlier that she was worried. She called the intensivist at Children's and ran it by them. They accepted to have him transferred. The helicopter arrived pretty quickly. Our nurse Jeannie reassured us that they would not rush the process. The handoff was great and we had a great helicopter ride. I was able to go with, and Logan slept the whole way (he was well medicated!).
 
On arrival to Children's in Minneapolis he was cold as the helicopter rides are not well heated! They worked to warm him up and repeated a chest x-ray. The intensivist said, his lungs sound good. Then when she saw his chest x-ray she was surprised. Over eight hours of time, both lungs were in distress showing bilateral pneumonias and what she thought might be acute respiratory distress syndrome. The staff settled him in and worked to find a good sedation balance. The vent settings worked well. Overnight he had troubles with the breathing treatments. They attempted to perform some sort of internal shaking with his endotracheal tube to attempt to loosen his secretions from the inside (don't ask me what this is called!). He dropped his oxygen saturation significantly so they gave him a vest treatment. This is something that wraps around his chest and shakes him for about 15 minutes. We do this at home a couple times a day. He still did not tolerate this well.
 
I was able to pass out for the night as my Aunt Michele sat vigil at his bedside. What a blessing to have such great family! I awoke to Dr. S's voice. He is our ENT. He arrived with some resident doctors. He did not have a lot of time to talk and said he would be back after a couple of surgeries.
 
We were then visited by the intensivist who devised a plan for the day. He was not going to repeat a chest x-ray as he had one in the middle of the night. The plan was: rest, sedation, breathing and vest treatments as tolerated, lab tests, new central line, and possible blood transfusion. Logan's day went accordingly without any hiccups. His hemoglobin came back at 7.8 which was down from 8.1. Because it dropped under 8, the intensivist asked to have him receive a blood transfusion. We consented and by the time I left to go home for the evening, the blood was running. Otherwise, the staff was able to wean his oxygen concentration down throughout the day. He is still on more than he should be but it is as expected. Joel stayed for the night. I am so proud of him for taking that step.
 
Yesterday was a hard day for Joel and I. Not just because we had a sick little boy, but also because of some of the talks we had with doctors regarding his future. There are some heavy concerns among us and his doctors regarding his ability to get off the ventilator and then what life will be like going home. Of course we are only speculating at this time and are often looking at worse case scenario. His ENT did make a good point that just two weeks ago he saw a kid at his baseline that was managing okay. But on the other end, we have a kid that has been in and out of the hospital way too much and when he gets sick it is harder and faster every time.
 
For now, we give control to god, the medical staff, and especially Logan. We will continue to surround him with love and support and do everything in our power to get him better. He is a fighter and is as stubborn as they come! Please keep him in your thoughts and prayers. We are okay with healthy visitors to the hospital at this time. The hospital has some policies about children visitors but I am unsure of the details but I can find out. Right now we have a lot of family helping us out but as time goes on (estimated a couple of weeks), we may need some help. I will keep everyone posted as we have needs. We have a lot of people who have reached out to offer help and we really appreciate it! You can contact me at rbyrne4@hotmail.com any time. I may take a little while to reply but I check it often. I will do my best to update the blog as I know how important this is to our friends and family. It is also therapeutic to me too!