Pulmonology Follow-up

Logan saw the pulmonologist last week. This was a follow up visit after his hospitalization for pneumonia in August. I was nervous about this appointment. These are always tough visits that bring a ton of emotions.

We started the appointment with Dr. K asking where we are with a diagnosis. I gave him a recap which provided no new information. I quickly sensed frustration from him. At every appointment, Dr. K always stresses the need for a diagnosis. I didn't fully understand this pressing need on his part until this visit. He explained (remember this is in my own words and is a little fuzzy), that a diagnosis would give us a prognosis for his future. If we knew what we were dealing with, we would better decide how to intervene to lessen or stop his chronic aspiration.

Some of the things I am going to say are tough to hear but I need to say them...if we find that Logan's life expectancy is short, Dr. K explained that we would want to decide how we would proceed. Meaning, would we do everything we could to prolong his life or change our focus to comfort care. The big intervention that would essentially stop his aspiration would be a tracheal diversion. This would be a reconstruction of his airway and would mean he would have a tracheostomy (an opening into his airway through his neck). Dr. K said the procedure itself is not what we would need to worry about. We would need to know that a procedure like this would have a huge effect on our lives. If we knew that his life expectancy would be longer we would know that intervening would improve his quality of life. If our time with Logan is short, Joel and I need to decide what we want to be his quality of life. I can't speak for my husband, but if our time with Logan is short, I want him to be happy and comfortable. I don't want machines to overtake our lives and take away from our possibly precious time. Obviously these are raw emotions and I am still processing it all, but it remains a possibility. These are all decisions that we are going to have to make at some point. I want to be educated about our options and also be able to take the time to dig deep into my beliefs to explore how I feel.

I hate to say it, but this last year of Logan's life has changed significantly. A year ago, he could breathe with more ease. He was always noisy but not to the point of being unable to protect his airway. Developmentally he has made gains and has had losses. Overall, his physical health has significantly declined. After every illness Logan does not fully bounce back. His health needs are constantly increasing.

I explained to Dr. K how upsetting it is to see him struggle to breathe every day. I told him that we need more options to care for him and I shared my ideas. I also talked to him about my worries for Logan's health going into cold and flu season. So we have a new plan of care. He has added atropine drops to decrease the saliva in his mouth. Logan is now on a low dose antibiotic. This definitely comes with risks...diarrhea, resistance, etc. He will remain on oxygen. He received the pneumococcal vaccine. The office is also going to see if insurance will cover the RSV vaccine and he will get a flu shot soon.

Dr. K also discussed the possibility of using a replogle tube at night. This is a small tube that is inserted into the nose and placed on intermittent suction. It is normally used in newborns with esophageal atresia (the esophagus does not fully develop). Dr. K thinks it may be helpful for Logan if used at night. His thought is that it would decrease the amount of saliva entering his lungs while he sleeps. I have attempted to research the replogle tube but can only find its use in the newborns with an esophageal defect. It seems to be a short term solution in those cases until surgery is performed. Also, Joel and I have discussed this at length and have decided to put this intervention on the back burner. We are concerned that this will cause discomfort, may possibily introduce infection, and
disrupt his sleep. 

I feel as though we have a good plan in place but live every day in fear that he will get sick and end up in the hospital. We talked about keeping him away from public places as much as possible. Dr. K says he has chronic bronchitis and that even a simple virus can exacerbate his lung problems and cause pneumonia. All the antibiotics and vaccines in the world will not ward off a virus. 

It really sucks living with the constant worry for his health. I hate to see him this way. I cried the entire way to work the other day. It came out of no where. I have to say that my steering wheel has caught a lot of tears over this last year and a half! This roller coaster ride has been quite a journey. I have learned so much from my miracle son. He has taught me to be a much kinder, patient, and understanding person.  I hope he knows how special he really is. 

I am so thankful to have Dr. K and his endless wisdom. The support he provides is amazing. He is always willing to answer my questions and he listens to what I say. He is also very attentive to Logan and never gives up on us! Thank you Dr. K. You make it easy to place our trust in you!

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.