It has been a strange day. I try to live day to day in this life with the boys, knowing anything is possible, and to prepare my mind as such. If you know anything can happen it is harder to be caught off guard or let down. Today I woke up thinking I KNEW we were going home. It was a rookie mistake, and unfortunately I wasted a day in a time when all days are precious.
What I haven’t told you is that L passed his first room air trial Friday night. In fact, we were almost discharged Saturday, but as he sat there on room air Saturday morning, the Dr asked my comfort level and how things were looking. I said I wasn’t opposed to observing him another day to be sure it would “stick”, because L has a way of hiding his distress. I kid you not, DURING that conversation, his stats dropped again and he couldn’t rebound without help. As luck would have it, the Dr observed, my concerns were confirmed, and we agreed to give him another day and reconvene on Sunday.
As Sunday came and and went, we saw more of the same. Stints on room air, bursts where he needed oxygen. He was more alert, looking around, but still needed help. Maybe he just needs oxygen until he fully recovers? Maybe he needs it all the time now? We can go home on oxygen with his current level of health. Let’s observe another day and involve pulmonology and home medical equipment on Monday.
Monday I woke up confident. Everyone else seemed to too. Case management was on top of things, oxygen was delivered to the house, and a rep drove all the way to the hospital to deliver our travel tank. We started talking about an exit x-ray, and follow up appointments. I spent half the afternoon standing around with my virtual coat on and keys in my hands. I even loaded our things in the car. (PRO TIP – NEVER DO THAT UNTIL YOU HAVE DISCHARGE PAPERS!) The x-ray returned, and that combined with my discussion with pulmonology spurred further disussion. It looked the same. If it was aspiration pneumonia, why wasn’t it worsening without antibiotics, and why weren’t we seeing signs in his bloodwork? (Those aren’t a must, but they are part of his history). If it was viral pneumonia, why was it still there, just as strong as the last few days, while he seemed to be back to baseline. And a question we’ve been asking of anyone who will listen…what about his cold temp, and dipping heart rate? Are they related to the perhaps not so acute respiratory distress? What are we missing? A theory (re)emerged. One that our home nurse has pondered as well. Maybe all of these things are connected. Maybe there is no virus, no aspiration, and instead, maybe L has been having cardiac distress, leading to pulmonary edema. If his heart isn’t pumping efficiently, it can lead to fluid buildup. And that can present as a respiratory issue. The only way to confirm is to do an echo, and get cardiology involved. So we’ll learn more on Tuesday.
Adding a potentially chronic problem weighed hard on me at first. Not that an acute illness or event is any “safer”. Either can become life or death when it comes to L. Honestly, I just didn’t wake up today “ready” for anything except good news. I had decided what I wanted, what I needed, and wasn’t prepared for anything else. That presents as optimism, but it plays out as entitlement. And I know better.
There are meds to fix this, and the fact that we had the forethought and awareness to test , rather than send us home prematurely may be a life saving catch for L. We could also be wrong, and the x-ray may just be trailing behind his recovery. But we will know more soon. And now that the dust has settled, I’m feeling grateful for the opportunity to check.
This is me getting my stuff back out of the car. This is perhaps the hospital version of the “walk of shame”.
This is L, telling me to get over the pity party and distracted day, and get back to cuddling.
So I did. I set back up in the room. I decided to get some exercise since I had spent the day hovering instead of moving. So I went and jogged the hospital stairs (inside) for a few minutes. I grabbed a quick dinner. Maybe it was the lingering glaze on my still puffy eyes, from the pity party. Maybe it was the flat out sweaty appearance and wild hair I had from my attempt at a cardio routine. But “Jimmy” from the cafe said “your frozen yogurt is on me tonight”.
Long story short, I’m not packing my bags early tomorrow. I’m not waking up thinking I know where the day is headed. And I will try hard not to waste a precious moment that could be spent cuddling. I will, however, try to notice someone with puffy eyes. And if the opportunity presents, I’ll buy their yogurt.
Debbie Buckley said:
Wow…what a great piece of advice. You rock!
Wow… I am always encouraged by your posts. I was especially caught when you used the term “entitlement.” I am having a bit of a personal struggle, and you spoke what I needed. So, please consider your wisdom to be a wonderful cup of “virtual yogurt.” Prayers and thoughts for Landon, his brothers, his parents, grandparents, and all who love you!
Jodi Cramer said:
I could not agree with you more. ❤️
I always love reading your posts. You don’t know it, but you have taught me so much on how to keep (or get back to😉) a positive attitude. You are such an inspiration to me and so many others. I hope the news you receive tomorrow is good, but no matter what it is I know you will persiver. Stay strong and cuddle on! 😀
Nancy/John Arnold said:
What can we say…..Landon has one terrific mother, who takes the best care of her little munchkins…..take care and keep up your spirits…. ❤ ❤
Prayers for Landon and mommy, and for the doctors to come up with some answers.
Jennifer Scott said:
As always, love and prayers!
You are a wonderful mother & an inspiration.
– Get well soon Landon!!
Hugs to you all! I pray whatever Landon’s body has been hiding iis revealed and he receives treatment that allows for more cuddling than worry.
Madonna Ormsby said:
Praying you are home soon. Loved the picture on your blog of Landon and the ray of sunshine. Surely a sign of God’s constant presence.
Mandy Hill said:
Our prayers are with you all! Free yogurt is a great reminder for all of us! 🙂
Luvs to you and the boys💕💕💕💕💕💕💕💕💕💕💕💕💕
You are such an inspiration!! I have 2kids with a lot of health issues and special needs and can relate to you so well!! I’m sorry, but I had to chuckle when I read that you loaded up your vehicle. I thought to myself “WHAT IS SHE THINKING?! SHE KNOWS BETTER THAN TO DO THAT. WE ALL DO!” Lol. Then I very quickly remembered all the times I have done the same thing hoping that it would yield different results.
On another note, when I started following y’all, I found you because of my google search in Lissencephaly. I helped care for a child with Liss several years ago and loved her like family until they moved. I also did a huge project on it so I have always tried to stay up to date on any new info out there on it. I’m so glad I stumbled upon your blog!!!
Y’all are always in my prayers and I’m here if you ever need to talk!!
Feel free to email me and I can send you my number if you want to talk more. Keep up the amazing work!!
Mama Laughs said:
Thank you Dani, great to hear from you! I also post more brief updates on Facebook if you want to reach out there.
Will do! Thanks!!