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! 

We will miss Kim

Kim, our summertime nanny/PCA came to say goodbye today. She is going off to grad school at the University of Wisconsin to become a speech language pathologist. We are so happy for her, but will miss her very much. She will always have a special place in our family. Kim was so patient and was always willing to learn new tasks. She was persistent and successful with Logan's therapies. We saw many gains in his skills after she worked with him. Thank you Kim for making such a positive impact on our lives in such a short period of time. We will miss you!

So now I dry up the tears! On the Logan front, he is doing well. He had a great weekend with Lauren and Dad. I had to work. Today his oxygen levels were all over the place. I have a feeling this is going to be his baseline for now. He isn't sick, just has a lot of secretions. We are starting to settle into his new routine now that he is on oxygen. I am hoping to get him out of the house this week. I am sure he needs a change of scenery.

Lauren had her per-kindergarten screening last week. She did great. I was so proud of her. I thought she was going to be shy but she walked right in and did everything they asked. She will have to have her hearing and vision screen again at her 4 year check up. She didn't pass. Not sure if it was nerves or true issues. We will give her another try and go from there. I don't think she has any major issues but maybe it is something that will need to be monitored. We will see! As Joel and I always say, "it is what it is!". Lauren will start preschool in September and we will celebrate her 4th birthday as well. Logan's 2nd birthday is coming up in October. They are growing up so fast! That is all for now!

More decisions to make

Since being discharged from the hospital, Logan has had many changes to his daily routine. He is on oxygen 24/7, requires oral, nasal, and deep suctioning as needed. He also receives vest treatments to assist with mobilizing his secretions and encouraging a cough. His oxygen saturations wax and wane. He has good days and bad and definitely becomes agitated when he can't clear his secretions. It seems as though his anxiety has increased. I pray this is temporary and just related to being in the hospital.

We have been exploring the option of having night nursing to help us during the overnights. Logan has had some struggles at night. We have a budget through the county that helps cover our nursing care. Unfortunately the budget will not fully cover increased nursing hours. We have the option of going on to a different waiver program but would lose some perks that we rely on such as a paid parent option. For those of you that don't know the process in our state/county...Logan has to be on medical assistance as our private insurance doesn't cover close to what we need to stay financially afloat. In order to have medical assistance, we have to pay a monthly parental fee that is based on our income. The more we make, the more we pay. Ideally we would like for me not to have to increase my hours at work in order to make ends meet to pay this parental fee and instead have me home more in order to provide care for our son as well as maintain the rest of our lives. The waiver helps make ends meet.

Many people have asked, doesn't your insurance cover private duty nursing? Nope. They cover home health visits meaning a once a week visit. Not good enough. It is so frustrating to pay a monthly premium from what we thought was a pretty darn good insurance company only to find out the coverages are so limited. Don't get me wrong, we are so fortunate to have insurance and appreciate everything that it gives us but come on, he is just a kid. Why do families have to fight so hard to get care for their children? Logan didn't ask to be born this way. We didn't do anything to purposefully cause this.

So, we are forced to seek help through the county. Thankfully we live where we do. We have great case managers who have helped us navigate the system every step of the way. Without Christine, Debra, and Bev we would be in financial ruins by now. I guess I am venting and doing some much needed complaining! I wish this was easier. I wish someone (the government or some really rich person) would say, "we are so sorry you are having to go through this, please let us take care of your child's medical expenses". If I was rich this would not be a problem,but Joel and I are two middle class working citizens doing the best to provide a good life for our family.

We still have options wether it be to not pursue night nursing at this time or move to a different waiver program and make some sacrifices with our time at home. Joel and I will weigh the options and make the best decision with what resources we are given.

I want you all to know that I don't put theses complaints out for all to read in order to drum up sympathy. I want everyone to understand what families like ours and so many others go through. In our communities live many children, adolescents, and adults with disabilities. We are not the only ones out there with these struggles. We are among a very special community of people.

Our time with Logan may be limited. I hate to think this way but with this most recent setback I have come to realize how fragile he really is. Every minute counts. I don't want to spend it angry and upset so thank you for listening as I work to navigate this journey!

Pneumonia

Logan was in the hospital with aspiration pneumonia from August 3rd to August 8th. He had a cold last Friday. We decided to still head to Brainerd that afternoon for a much needed weekend away. On the drive up Logan spiked a temp and was spitting up a lot of phlegm. It was like someone turned on a faucet. We got to Brainerd and Grandma Cindy gave him a nebulizer while I gave him Tylenol. After the neb he aspirated and could not clear his secretions. Essentially they became lodged in his airway. I  performed some deep suctioning and cleared him up a little. We had him on pulse and oxygen saturation monitoring the entire time with no drop in is oxygen. His heart rate and respiratory rate spiked after the aspiration and continued to worsen. Cindy and I rushed him to the emergency room in Brainerd.

As soon as the doors opened to the ER the nurse at the front desk appeared concerned. She showed us straight back to a room and along the short walk, we acquired a large number of healthcare professionals! They quickly stabilized him with suctioning and nebulizers. As I stepped away from him to allow the nurses to work, it hit me how sick he really was. I scanned the room and realized we were in a resuscitation room (room for super sick people!). All the critical care equipment had magically appeared at his bedside. Thankfully the team swiftly and calmly tuned him up. His color and work of breathing improved. The doctor left to talk with the pediatrician. They decided to transfer Logan by ambulance to Children's Hospital in Minneapolis as this is where Logan receives his care.

So Logan and I made the two hour trek with the ambulance crew through quite the storm. The paramedic seemed nervous with Logan and watched him like a hawk. I forget how unnerving his noisy breathing can be for those not familiar with him. Plus I was still in denial about how sick he was! Silly me, where had my nurses assessment skills gone...out the window!

We safely arrived at Children's after some skillful hydro planing. My parents and friend Sara met us there. We waited in the ER for a few hours waiting for them to decide what level of care he needed. He was then transferred to the ICU for close monitoring as he was on high flow oxygen and required constant suctioning. We spent two nights in the ICU and then were down graded to step down ICU for the next three night. He is now home on antibiotics, oxygen 24/7, and has a cough assist vest that shakes the snot out of him literally! We learned today that he isn't back to baseline and being on oxygen is a good thing. He had an episode of fever, low sats, and increase in his sputum. He has been irritable all day as well.

He will remain on oxygen for a month until we see his pulmonologist. We are also exploring adding more nursing hours at nighttime. Joel and I need some rest and more help! This hospitalization has made me realize how fragile Logan is. If this cold bug put him in the ICU, what will happen this fall when the flu virus and all sorts of other respiratory illnesses are in full swing.

Right now there are so many changes. It is hard to see past the current crisis. I have a hard time leaving him for a second for fear something will go wrong. On top of everything we are getting an ambu bag, an emergency mask to assist with breathing. I knew this was coming and have said many times that it would be good to have. But now that it is here it is real and it is so scary to think that we may have to use it some day. I worry every day what our future holds. I worry that he will end up with a breathing tube and what quality of life is that. I want him to feel well and to be happy. It is not fair that this amazingly handsome boy has to be put through so much. He is supposed to be walking, running, and getting into all of my cupboards not laying on the floor surrounded by cords with oxygen in his nose. He is not supposed to struggle to breathe. We will continue to provide the best for him and adapt our surroundings to keep him comfortable and happy. We will not let this overcome us and will instead allow it to enhance us. Logan is a teacher and I learn something new from him every day.

Thank you for all the prayers and well wishes for Logan and our family. It takes many more people than Joel and I to raise this child and we appreciate all the help!