Seven years ago, I sat in front of the television diligently moving from station to station worried I might miss something about Hurricane Katrina. At that time, I had a new condo in New Orleans. I had signed the papers on it just four weeks before. The stress of worrying about my condo took a toll on me and my relationships with others. Crazy does not even begin to describe my reaction at the time.
Seven years later, I find myself watching cartoons with the kids or cruising Pinterest in my free time. My new appreciation for the important things in life keeps me calm and at a relatively low stress level considering the circumstances. Yes, we may return to our home with damage, but all I can say is it’s just stuff. The most important things to me are safe and out of harm… My family.
I try to treat this time like a little family vacation. Lennon, Isla, and Benjamin are really enjoying every minute with their cousins, and I am enjoying every minute being with the kids. Benjamin hangs out all day in the living room, and I love watching all the kids taking turns laying next to him and interacting with him. Benjamin is all smiles.
So far we have not had any bad weather here, but if we do, we are prepared. No point in worrying when you have done all you can do to get ready for every situation. So until the weather passes, and we can return home, I will enjoy every minute of our “little family vacation” at Camp Hattiesburg, not worrying about “the stuff” we left behind. I pray everyone is safe and out of harms way.
Friday afternoon, we started to get our plan together for a possible evacuation. Hurricane evacuation with a family is difficult for anyone, but having one child dependent on electricity and a husband who has to stay for work makes it a little more interesting. Friday and Saturday, our plan was to stay put making the move to a nearby hospital if absolutely necessary. Plans changed when we woke up Sunday morning with Hurricane Isaac making his way to our front door. After talking, thinking, praying, and brainstorming, we decided to leave. Hours later, we were loaded in the car with Honey at the helm, making our way to Hattiesburg, Mississippi. This seemed like the best choice considering accommodations, emergency services, and close proximity to Ochsner Hospital in case of an emergency. Lucky for us, (not others) it appears the storm continues to move further west by the hour. I guess we will see. All I can do now is make sure back up batteries are ready, conserve Benjamin’s oxygen supply, and enjoy the beautiful weather while we have it. We do miss KC, but he is back at home cleaning up the yard, taking care of the dog, and most importantly, moving breast milk to a generator supported freezer. 🙂 I pray that we will all return home soon.
Benjamin is home and continuing to get stronger everyday. He has perfected sticking out his tongue, and is able to activate some of his toys. He appears to be very happy to be back home with his crazy sisters. Two of his therapists have seen him this week, and they both agree Benjamin has not loss any of his motor ability. Yay! Thanks so much for all your prayers while Benjamin was in the hospital. Also over the past few days, I have been able to look at pictures, and I have read messages from the Milestones to Miracles Celebration. We feel so blessed to be surrounded by such wonderful friends and family. The generosity of this community is amazing.
Having Benjamin has changed me, and given me a new appreciation for life. One of my closest friends asked me the other day if I was taking time for myself… A time to cry. Maybe I haven’t because I really don’t have time, but I also don’t feel sad or feel sorry for ourselves. I never ask God “why me?,” unless I am asking “why me, why us?” “why are we so lucky and blessed to have such an amazing and inspirational child.” I think this may be hard for people to understand until you spend time with Benjamin. Now, I can’t say that I don’t ever get overwhelmed or frustrated with things sometimes, but name one mom who doesn’t. Frustration happens when I am trying to get Benjamin in and out of a car while untwisting circuits, monitoring his o2 and sats, and trying not to tip over a stroller. This frustration is only brief, and I am quickly reminded I would rather do all this than not be able to have Benjamin to take with me. We all face challenges raising children. Our challenges are just a little more unique, but manageable.
Today brings new obstacles… Preparing for hurricane evacuations. I don’t believe this hurricane should be a problem for us, but when your child is dependent on electricity, you make sure you are prepared for anything, and we are prepared!
A funny story from the Sirmon’s: Lennon arrived at school today greeted by her Aunt Erin. Erin was asking Lennon how everyone was doing. In the middle of the discussion, Lennon stopped, looked at Erin, and said, “you need a baby with a tube!” After laughing, I realized that Lennon doesn’t look at Benjamin either as someone to feel sorry for. She only looks at him like he is very special and everyone needs a baby just like him. 🙂
Around eleven this morning, our physician came in with a big smile on his face. He asked me if I would like to see the x-ray, and of course I did. I anxiously awaited the results, when up popped up an x-ray of a child with two functional lungs. “Is that Benjamin?” and yes it was. Benjamin’s left lung was completely opened at the top, with only a small amount of atelectasis at the base. This would account for Benjamin’s increased movement and constant smiling. So now we are on our way home, ready to get back to our normal and crazy schedule. Thanks for all the prayers.
Benjamin’s left lung is starting to show improvements, but not enough for us to be sent home. The next step in helping the lung inflate is trying a cuffed trach to lessen the leak even more, therefore, keeping more pressure in his lungs. Yay! We are finally getting somewhere. The only problem is we have to wait til Monday for the trach, so our earliest discharge will probably be Tuesday.
Tonight is Benjamin’s benefit and I am so sad that we are not able to attend. For those of you who gave, but did not attend, this is what I sent for KC to read…
When KC mentioned to me that he wanted to move back to St. Charles Parish, I had two questions…what is there? And where is it? Well I quickly learned where it was, but it wasn’t until recently that I truly learned “what is here.” I have found a community so caring of its family and friends, and a community that supports its members when needed and cheers them on in their triumphs. This community has made this road our family travels so much easier.
I am so sorry that I can’t thank each of you personally for everything you have done. I will leave that up to KC. I am also sorry that most of you have not had the chance to meet the angel you come here tonight to support. Though Benjamin has some special needs, he is a happy and good natured little boy who has changed so many lives around him. I know I am a better and happier person because of him.
I will keep this short because I am sure whoever is reading this is fighting back tears. 🙂
Thank you once again for everything you have done and everything you have given.
Because of your generosity, we are able to provide Benjamin with the care and attention he desperately needs. Each of you hold a special place in our hearts.
Benjamin’s x-ray this morning once again showed no change. He is by far the happiest kid I have seen with one lung. Benjamin is not very active, but if you work really hard, you can get a smile out of him. Rarely, do I see a tear or any signs of discomfort. Now, we wait for the ENT. She will put in a larger trach to allow even less air leakage, pushing more air into his lungs. We will continue to make the hospital our home until we see some type of positive change in his lung. Thanks for all your kind words and prayers. They have made this rocky road much smoother.
Benjamin’s six month birthday may not have gone as planned, but no matter where we are, we have plenty of reasons to celebrate.
The x-ray this morning unfortunately showed no change in Benjamin’s lung. So what do we do now? Well, they are trying a few techniques including decreasing the time Benjamin is allowed to exhale, and increasing the size of his trach to decrease the amount of air leakage. Hopefully, this will put more air into Benjamin’s lung and keep it there longer. He also had an ultrasound of his lungs today. I sat patiently as the techs mumbled, then stated they need to call the doctor. (Thanks for making me a little panicky.). Everything they found, we were already aware of except for a small amount of fluid in the base. They really need to practice their poker faces.
Benjamin looked really good this morning, smiling and playing with his hands, but after a short amount of time sitting up in a bouncer, he was worn out. The PT in me wants him to be moving. I mentioned to the nurse that I thought Benjamin was working a little harder. A resident stopped by (who had never met Benjamin), and told me that he pretty much looked about the same as what he had read and to let him know if he looked worse. I realize this poor kid is learning, but he needs to know to always listen to the woman who is with “your patient” 24 hours a day and seven days a week. Someone will surely tell him, but at the time, I knew Benjamin was ok, and I didn’t have the energy to teach him.
The last change today involved Benjamin’s blood pressure. Dr. Cunningham (with his adorable bowtie) stopped by and agreed it was time to start some blood pressure meds. I so worry about Benjamin’s little heart working so hard and hopefully this will give it the break it needs.
My little Buddy is comfortably positioned in his bed and just dozed off to sleep. He has been quite loud while he sleeps since his runny nose, but between that and the sounds of the machines, I find it very peaceful. It has given me some time to sit and reflect on the past six months, and how much Benjamin has changed our lives. He makes me want to be a better person, to live my life for others, to appreciate everything I have and everyone I know, to take things one second at a time, and to live life like today could be my last. I thank God everyday for the best six months of my life.
Benjamin and I are patiently waiting in recovery to return to his room. He tolerated the procedure nicely and they were able to clean out the path to his left lung. In this process we have discovered three things… 1. The mucus plug wasn’t very large meaning it doesn’t take much for this to happen and 2. Benjamin has bronchomalacia which means the walls of the tubes leading to his lungs are weak. Our pulmonologist was impressed that we had not been back to the hospital for this already. Well, I guess we will be sending him on some very nice family vacations in the future. He says that this should improve with age and growth… he also forgot to mention prayer… And 3. I also asked if he saw any physical reason that would keep Benjamin from talking and he said NO, and that his vocal cords looked surprisingly good. Yay! I dream of the day we can talk about trucks, superheroes, and girls. 🙂
On another good note, Benjamin continues to look relaxed and comfortable except when his nose starts to get stuffy. This is easily recognizable by steadily rubbing his nose. He finally started smiling again right before he went back for the scope. Oh, how I missed that smile.
Tomorrow, we have an x-ray in the morning, and if the lung has cleared, then we may possibly be able to go home. The pulmonologist thinks we may be able to better manage the bronchomalacia with higher vent settings. Sounds like a good plan to me.