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! 

Tuesday, November 6, 2012

End of PICU Day 3



The day is winding down and I have a tuckered out little boy in the crib next to me. He has been on an incredible ride these past few days. To see him breathe easy on his own is such a blessing. He is peaceful and hopefully having dreams of Mickey Mouse and trucks! His hospital room has transformed. The equipment has slowly been peeled away from the room. I have moved in and joined him. We had a separate room because he was so sensitive to noise when he was intubated. Our nurse ratio has also changed and Logan has to share his nurse with another patient!

We are down to maintenance IV fluids and some IV medications. His feeds continue to advance to get him back up to normal speed. The doctor had his oxygen dropped down earlier but he had to be bumped back up. He did receive Ativan (medication used to calm him) a couple hours ago. He had an episode of pretty bad agitation. He doesn't seem to like to wake up and especially does not want to open his eyes. It reminds me of when we sedate kids in the ER for procedures. They never like to wake up and are very sensitive to light and sound. That's my Logan right now!

Hopefully tomorrow will be a brighter day and we will see him perk up. I would just love to see him keep his eyes open and play with his toys. It is torture seeing him upset and uncomfortable. When he had his big episode of agitation, I started to shut down. Nothing I did seemed to help. Finally I must have said the right thing because the nurse went and got an order for Ativan and next thing I knew, the doctor was in the room and they were giving him the medication. I was so pleased to know that they were not afraid to medicate him to help him through this. He needs to rest and relax his airway to allow it to heal from having the tube. Him thrashing in the bed defeats the purpose.

I am so thankful for the support and care they have provided us. I have felt in the loop the entire time and we have been guided through the process step by step by the doctor and nurses. We have been so fortunate to have so much of their undivided attention. They have made us feel that Logan is very important to him and you can tell the staff loves what they do. I just can't say enough of the PICU staff here at St. Cloud Hospital.

So, I am hoping for a restful night for Logan but have a feeling he will be rearing to go when the Ativan wears off. We are looking at possibly being discharged on Thursday. He is progressing at a great pace and no setbacks yet. I will cross my fingers but know that Logan is a fighter and doesn't generally end up sticking around too long once he is back to baseline!

Oh by the way, Joel and I voted today! It was hard to peel away from Logan but it felt good to exercise my right to vote. Now I can't peel myself away from the TV! I will post an update in the morning after we get his chest X-ray and lab results back.

PICU Day 3

He is extubated! The breathing tube is out! Logan's chest X-ray improved this morning and even before they stopped his sedation he was movin and shakin! He was ready. After being extubated he was really fussy but maintained his airway well. He has stridor. This is a high pitched whistling noise. He most likely has a sore and inflamed airway so they gave him a steroid called decadron. The nurse and doctor said today would be a rough day as the medications wear off and he struggles with some pain. He has maintained good vitals and is on high flow oxygen by nasal cannula.

Today's plan is to keep him comfortable, advance his feedings, and continue antibiotics. At some point his central line will be removed when he is ready to transition off of his IV medications. He will also move to a step down ICU room as well.

His hemoglobin stayed the same as yesterday. It is 8. A normal hemoglobin for Logan is 12. His platelets have improved so the plan will be to recheck it in the morning. The intensivist thinks the drop in his hemoglobin could be from the high dose of vancomycin antibiotics or the infection. It is not at a point of needing intervention. He is not bleeding, so no need to replace it. His body just needs  rest in order to make more red blood cells.

Right now he is resting well and Grandma and Grandpa are on their way to sit with him so Joel and I can go vote. Most likely we will have Lauren come visit tomorrow. I miss her very much and I am sure she would like to see Logan. Our dog Molly seems to be doing well with our neighbors Joe and Kayla. Thanks guys! Sometimes it is easy to forget our first baby, Miss Molly. She is such a good girl! As always, I will keep posting with updates. Thank you for all the prayers and support. Our little boy is coming back to us!


Monday, November 5, 2012

PICU Day 2 Update

Here is an update on our stay in the pediatric intensive care unit:

Logan has remained intubated, but don't worry he made some good efforts to pull out the tube today! He remains under sedation but wakes up periodically to remind us how strong he really is. His endotracheal tube (breathing tube) has been acting up today. When he was first intubated there was a lot of swelling in his airway. Now the swelling has gone down. That leaves space between the trachea and endotracheal tube for air to escape. It has made him a bit uncomfortable at times as he does attempt to breathe on his own. It also makes a small whooshing noise when he exhales. His oxygen levels have remained good with slight dips at times but nothing significant. The ventilator beeps a lot and they have attempted many adjustments with no success.

So, the new plan for tomorrow is for Logan to get a chest X-ray early in the morning. If that has improved since today, the doctor will shut off his sedation and let him wake up. Once he is awake the doctor will extubate him. This means that the doctor will pull the tube out. Freedom! Unfortunately this comes with risks. He is being extubated a little earlier than planned due to the constant leaking from his endotracheal tube. There is a chance that he may not be ready to be extubated and if that is the case, they will place another endototracheal tube. I have a feeling he is going to do great and will be happy to be free but we are ready for either option.

This evening the doctor had a few lab tests repeated to make sure Logan's system was in the best possible shape before extubation. His potassium was a little low so they have increased the dose he is getting. This isn't a huge deal. The doctor said he wants to have it bumped up because a low potassium often causes lethargy and we certainly don't want him pooped out before the big event. His platelets and hemoglobin have also dropped since admission and can be due to many things but are not at a level of great concern and this will be monitored closely.

His feedings were started again today at a slow rate and he is tolerating well. He is making lots of pee which makes us happy! His vitals are great and his temp has stayed down all evening but he is still getting Tylenol and Motrin. The EEG monitoring is complete and no seizures were detected so we are pretty confident that he had a febrile seizure. He will still go home on an anti seizure medication called Keppra. We will then follow up with his neurologist to see if we should continue it.

His sister Lauren is up north with family and is doing great. She has been playing with her cousin and probably getting pretty worn out in the process. I am so thankful to have such a wonderful family that can pitch in and take her during these times. It is so nice to have her in good hands. She doesn't quite understand what is going on but maybe that is a good thing. I miss her so much and can't wait to see her.

I pray for a restful night for Logan and a successful extubation tomorrow. They are getting ready to let me hold and cuddle him. I am a little giddy right now. Keep you posted on the big event tomorrow.

Update: they let me hold Logan before I published this posting. I didn't realize how much I needed to hold him. For the first couple of minutes I was a ball of nerves. I was so worried about all of the tubes. After I relaxed the emotions hit me. I couldn't stop thinking that the last time I held him, he almost slipped away from me. The last time I held him, he stopped breathing in my arms. That helpless feeling was overwhelming. After a few minutes of good healthy crying I was able to smile and be ever so thankful for the precious gift in my arms. We witnessed a miracle yesterday. When he started to breathe again after the paramedic stimulated his gag, I felt like the moment he took his first breath as a newborn. I now know he had many angels sitting on my shoulders yesterday morning. Logan had Grandma Cindy, Cousin Taylor, and Aunt Leah and Aunt Jeni as his on scene angels! And I know Gigi, Grandpa Gregerson, Grandpa Mervyn, Cousin Sarah, Cody, and probably a few other angels were all there helping me and the paramedics guide Logan through. He is a fighter and is as stubborn as they come. I have no idea where he gets it! So I lay here now with no words left to say other than thank you.

PICU Day 2

Today is Day 2 in the pediatric intensive care unit. Since my last post Logan is/remains...

Intubated on the ventilator
On antibiotics
On anti-seizure medication
Having continuous EEG monitoring, this monitors his brain activity to tell us if he is having seizures
Getting pain and sedation medications
Getting lots of breathing treatments
Getting Tylenol and Motrin for his fever

What we see: a restful angel who likes to wake up every once in a while and remind us why he is called Mr. Wiggles! He had a great night. Woke up for the nurse a couple of times. He has opened his eyes and moved his arms and legs. I am so thankful for that. His blood pressure maintained through the night with the support of the pressors. They have been able to stop them now and he is maintaining a good blood pressure on his own.  He still has a fever but is mostly controlled with medications.

I spoke with the pediatric intensivist (ICU Doctor) today. His chest X-ray has worsened. His blood and sputum cultures are negative. Basically, this is not a bacterial infection and is not influenza. He most likely has a virus. The X-ray is most likely worse because he aspirated during the seizure and he is also intubated, sedated, and not moving around. We are going to try his chest treatments where we shake him with a vest to help loosen the secretions. The doctor is going to start him on a steroid. Hopes are that this will help boost his immune system and give him extra help to fight the virus. He is considered to have sepsis.

Sepsis is a condition in which the body is fighting a severe infection that has spread via the bloodstream. If a patient becomes "septic," they will likely have low blood pressure leading to poor circulation and lack of perfusion of vital tissues and organs. This condition is termed "shock" and is sometimes referred to as septic shock, when an infection is the cause of shock. This condition can develop either as a result of the body's own defense system or from toxic substances made by the infecting agent (such as a bacteria,virus, or fungus). I got this off of emedicine.com. 

So, all in all he is not out of the woods yet. Like the doctor said yesterday, it will get worse before it gets better. So today might be a trying day but I know how well he responds to steroids and after two doses we will probably see a whole new kiddo. The plan is to keep him intubated today and tomorrow and then reasses after that. He keeps waking up so they re-started his versed drip. This is the one that keeps him asleep. He has remained on a fentanyl drip throughout. He is having some issues with edema (swelling), but he is peeing most of it off!

Joel and I are maintaining. The grandparents have been here to help. Emotions come in waves. It is hard to think that he was just in the hospital less than a month ago. I spoke with the ENT office and Dr. S. said we can still pursue his salivary gland surgery if he is extubated this week otherwise we will have to postpone it. 

Thank you for all of the support and prayers. Logan is so blessed to have so many people rooting for him. I will keep you posted. 


Sunday, November 4, 2012

Seizure

Logan had a seizure this morning while we were visiting with our family this weekend. He spiked a fever at 1am. At 5am he still had a fever. I gave him some ibuprofen and within a few minutes my mother in law and I noticed his arm shaking and he was gazing off to the side. He would not respond to me and the shaking worsened. We called 911. While waiting for the ambulance he stopped breathing. Thank god I had the oxygen and ambu bag to help him breathe. The paramedics arrived just after he stopped breathing. They attempted to intubate him but he started gagging and started to breathe on his own. He called for a second ambulance and a helicopter.

We went to an airport a couple minutes away and met the helicopter. The flight nurse attempted to intubate him again but he was clenched down from the seizure. They decided to transport him as they were able to maintain his airway and he was intubated on arrival to the ER. He is now in the PICU at St. Cloud Hospital. The seizure stopped after a boat load of meds. The doctor is working to rule out infection. He had a CT scan of his brain that was normal. Urine is clear. They have performed a lumbar puncture to rule out meningitis. His chest xray looks good. He has a central line and is on dopamine (a medication to keep his blood pressure up). They have him on sedatives and pain medication to keep him comfortable and they are going to start monitoring for seizures.

The doctor does think he has an ear infection! Of all things, an ear infection! The doctor thinks he had a febrile seizure. I am worried that it lasted so long despite getting Ativan and Versed...he was seizing for about two hours. The doctor agreed and said neurology will be consulting. He gave me the option to have him transferred to Children's. Right now I want him stable and then we can decide but he is getting great care here.

Logan is in need of some major prayers right now. He is such a fighter! He almost slipped through my fingers today. I don't think I have ever been so scared in my entire life. I have a raging headache and queezy stomach, but I have my baby boy. That's all that matters. As always, I will update the blog as I have more news.