Ughhh

Once again I have been on  another emotional roller coaster. Thankfully it is not directly due to Logan's health. He is actually doing very well. My stress is related to the care  he receives. With this blog I try to be respectful about others feelings and reputations. I have no intention of gossiping, transmitting complaints related to individual people, or pointing fingers at those who make mistakes. Right now we are going through a tough time with the company that is in charge of Logan's nursing care. The direct care he is given is phenomenal but there seems to be some turmoil within the company. As Logan's caregiver and advocate I am going to do what is required to obtain the best care for him. Right now that job has become very stressful and has possibly caused me a case of prolonged high blood pressure! It is all going to be sorted out because that is my job as his mom, but this sucks. I pray that we will get to a better place with our situation and my stress levels will decrease. Thank you for listening. I know a lot of what I just said does not completely make sense!

Moving on from that... I have to say Logan and Lauren are real troopers. Our air conditioner went out a couple of days ago. It has been hot and miserable. Tonight we are having a sleepover in the basement. I have to say, it is so comforting having them close. I love to be able to wake up and peek open my eyes to watch them sleep. They are so peaceful with not a care or worry in the world. Those are the moments when all the stress, worry, and distractions melt away. Those are the moments to live for and tonight I get my precious time with them! I am so lucky to have them!

Tomorrow Logan goes to the pulmonologist for a check up. It will be the first visit since his hospitalization. I have a list of questions to ask. Logan has been on oxygen since the hospitalization. There are times when the oxygen is essential to keep his oxygen saturation up. Other times he holds well on his own. I guess we will see. I also toss and turn as to what we should do regarding his chronic aspiration problems. As you all know, cold and flu season is fast approaching. Do we wait until he is sick again to decide to intervene or do we start looking at interventions that may decrease his aspiration. As of now, he is only aspirating saliva and possibly aspirating stomach contents which are very minimal as his food bypasses his stomach, but it is enough to cause oxygenation problems and anxiety for Logan. I will continue to update the blog as we decide what route to pursue.  I truly would like to know on a 0-10 scale, how bad are things for him. Sometimes I wonder "am I blowing this out of proportion".  I am always so worried that I am taking from others by asking for more services and more help. I have such a hard time knowing where Logan is at medically. I have gotten so used to adapting to the changes that my perception has become hazy.

Thank you for listening and for the continued support. Also, please put my Grandpa Mervyn in your prayers tonight. He has been fiercely wrestling cancer and is in the hospital. Unfortunately he is in Canada so a visit is not in the cards for me but his health and comfort will weigh heavily on my heart.  Thank you to my wonderful family in Ontario for giving him more love and support anyone could ask for!

Uncle Mike, my mom Patricia, Grandpa Mervyn, and Aunt Theresa (2009)

Sunday

We had yet another great day as a family. Logan ventured out with Joel, Lauren, our friend Joe and I to lunch at Perkins. He received a lot of smiles from many people at the restaurant. How could he not, he is so darn cute! I am still trying to get used to people staring at us/him. I am sure they all wonder why this little boy has a feeding tube and oxygen. I wish I had a shirt that said "I have no clue what is wrong with my kid, but isn't he handsome!". He had a little blowout so a trip to the bathroom was in order. It is always a challenge to change him on a diaper changing station. First of all he hates it, he wiggles and whimpers the whole time. Second of all, I can't stop thinking about all the germs on the thing! We survived the bathroom trip and enjoyed the rest of the meal.

Then it was off to Menards to look at flooring. We are going to put in laminate wood flooring. Our carpet has seen better days and with the wear and tear laminate seems to make more sense. We had Logan in the stroller, I can't wait for his wheelchair. The stroller is great but just doesn't give him the right support. I was a little (okay quite a bit) ticked off at the entry gate at the store. I have never liked it. It is one of those metal turn things that only lets one person in at a time. How about people with strollers or wheelchairs? Those people have to figure out how to unlatch the gate to get through. It was not so inviting. I told Joel, I need to write them a letter! He gave me a hard time like a good husband does and brought me back to reality! (I still want to write them a letter) This trip was also successful, at least for Logan and Lauren. On the flooring front, not so successful. My dad taught us a trick to scratch the samples to make sure they stand up to wear and tear. After our scratch-a-thon we only found two samples. The one we wanted, scratched like no bodies business. Bummer! I will have to check Home Depot.

Next trip was to Coborns for groceries. Yet another great trip. Logan in the stroller and Lauren in the car mobile cart. Logan slept the entire time! I was a little nervous that his oxygen might not last the entire time but it did. No other major incidents. Wheew!

We then arrived home and our poor chocolate lab Molly was in for a treat. A bath in the pool! Okay, this isn't her definition of a good time. She had quite the pout face on the entire time. She has been itching like crazy and we figure it is a case of allergies. She does this every year. Afterwards I medicated her with benadryl and all was well.

Molly's bath!

 

 

Here are some more photos taken in the last couple of days

 

Our photographer Lauren, took this photo. She is getting pretty good with a camera! Watch out cousin Jessica!

 

Logan has been enjoying cuddling with blankets lately. I am sure his cousin Ty would like the photos of Logan cuddling his puppy. They both have the same puppy and Ty always shares his puppy with Logan when we visit!



Attached is a video of Logon getting his cough assist vest treatment. Helps get the junk out of his lungs because he has a weak and infrequent cough. He actually tolerates it pretty well. It was made for cystic fibrosis patients but has been proven to work for all kinds of people such as Logan.

Day at the park

The Park

We finally ventured out of the house with Logan today. He hasn't been any further than the backyard. I have been nervous about taking him out. I don't want him to catch another cold and I dread the thought of taking him out with his oxygen! But it was about time! Marta (one of his nurses), Lauren and I made the adventure to the park. We went to this great park in Maple Grove. It is big and has a ton of fun toys. 

Logan did great. No major hiccups other than him reminding me that he does not like his car seat. Of course the day I chose to take the kids to the park is the day four bus loads of kids are already there! It was crowded that's for sure. Logan spent most of the time with Marta as I fought through the jungle of kids with Lauren. Toward the end of our trip I took Logan and followed Lauren around for a bit. We had a lot of stares. I have to admit I was nervous about that. Lots of parents stared pretty intensely at times (I'm sure that is just my skewed impression!). There was a little boy who asked what was wrong with Logan. I'm sure he was perplexed seeing a boy with oxygen tubing on and a feeding tube hanging out of his clothes. I told him that sometimes it is hard for him to breath. He said "that is so sad". I have to remind myself that most kids have never seen these things on a real person let alone at the park. So there goes Mr. Logan, yet again teaching us all that it is okay to be different and that a child with special needs can be out and about just like the rest.

I was a little bummed out that there were really no toys that Logan could play on. He is so limited because he is so floppy and small. I have to look into seeing if there are any parks in the twin cities for special needs children. All in all we had a successful outing.
 
                                                

The blog

For a while now I have been working on jazzing up the blog. I am sure some of our dedicated followers have noticed my goofy changes. I am hoping this template will stick for a while. I have a few adjustments to make, but otherwise feel pretty good about it. This is definitely a labor of love for me. This blog is my journal, my communicator, and my hobby. Thanks for all the support during my blog journey! 

Wrap up

As a whole Logan is doing well. He is having more good days than challenging days. I am feeling more at ease. The new routine has sunk in. Now I am back to my torturous search for answers. I have been spending my spare time, usually after the family has gone to bed researching possible diagnoses and possible treatments or interventions to alleviate some of his medical problems. I worry every day that his chronic aspiration of saliva is slowly scarring his lungs. I hate seeing him uncomfortable and anxious from all of the saliva he is drowning in. I know my quest for answers may be a futile effort but at least it helps me feel productive. We have a busy couple of months ahead. Lauren turns four in September and Logan turns two in October. Oh and yeah, Joel and I have birthdays coming up too! We have a lot of appointments scheduled for Logan in September and Lauren starts preschool too! I will keep you all posted as usual with our updates. Thank you for all the prayers that were sent our way during Logan's recovery. We sure felt the love! 

P.S. Thank you to Uncle Pat for the lava lamp. It is Logan's new night light!