A Midnight Visit
Posted by Dr. Cason on Tuesday, September 23rd, 2008
Unable to sleep I crept into Smiling Boy’s room last night and stood there in the dark contemplating folding all 5 feet 8 inches of me into his toddler bed.
Which BTW says very explicitly “Do not Exceed 50 lbs”. I was a little worried since I haven’t been 50 pounds in over 30 years but I shrugged and figured the worst that could happen was the bed would collapse. Since it’s only a few inches off the floor, I took that chance and climbed right in.
I laid on my back, feet tucked up and knees draped to the side, and put him on top of me. He snuggled down and laid his freshly bathed body- in his little boy monkey pajamas- on my weary and recovering body. I draped his Pooh blankie over me along with my favorite little girl blanket that’s all pink and roses.
I laid there and listened to him breathe. And then started bawling. Soundless sobs, the tears ran unchecked down my cheeks.
Why the sudden outbreak? Just after the doctor visit (you know the one where I ordered labs like I was at a restaurant), he woke up with a fever and increased respiratory rate. The diagnosis- pnuemonia. Again.
I’m afraid that the possibly secondary immunodeficiency due to all those icky steroids is really a primary immunodeficiency.
His little hand is tucked into my bigger hand as we walk into uncharted territory.
Filed in My Life | 14 responses so far
Awesome Momon 23 Sep 2008 at 2:08 pm 1It is hard to be a mom, you want to take all the bad stuff away from your kids and keep them perfectly safe and healthy. I hope your little guy feels better soon!
Awesome Moms last blog post..Magic Marker Monday
Lisaon 23 Sep 2008 at 2:29 pm 2Hopefully the closer you get to a cause the sooner you can work on the solution.
All week I kept repeating the idea from The Power of Now (Eckart Toile), to keep me from obsessing about a future diagnosis. I tried to stay in this very moment istead of worrying about the next (while at the same time explaining to God that I can’t handle something like Cancer). It’s hard but it helped a little. I told myself, RIGHT NOW, at THIS moment what is my problem? At this very second? And if I ignore the potential problems and only focused on the tasks at hand or helping Katie be comfortable, it made it a little easier.
Have I lost you? I feel like I am rambling, okay I only slept 4 hours today. But I’m saying prayers for you guys.
Lisas last blog post..The Horror!
Trishon 23 Sep 2008 at 4:22 pm 3Ah She….
The instincts of a mother – proven right – something indeed was wrong. Can you take it as a sign to trust your instincts? I know… there are so many other implications that this illness brings with it…
One breath at a time. One step at a time. Breathe and step closer to the answers. With knowledge is power. Walk toward the answers. Cry if you need to because it is necessary, but make sure to get up and walk…. holding his hand as you go.
You will get there. I have faith.
Trishs last blog post..Passport to Identity Commotion
Kathleenon 23 Sep 2008 at 5:23 pm 4Okay She, PLEASE contact my Infectious Disease doctor friend I mentioned by e-mail. I bet he can offer some very good advice and direction. Remember, he wrote the book on Pneumocystis carinii pneumonia for our patients with his research, a pneumonia that attacks immunosuppressed patients in particular.
I am wondering if putting Jakey on Septra as a prophylaxis could help ward off the pneumonia until you get to the bottom of his immunodeficiency. Please do this today. This doctor I believe can help you. I will also e-mail him today, and let him know you may be contacting him. I’ll try to call him also.
I’m sure your doctors will be very familiar with his background work. Most are.
Barbara Swaffordon 23 Sep 2008 at 5:39 pm 5Hi Dr. Cason,
My heart hurts for you and little Jakey. I’ll keep you and him in my prayers.
Barbara Swaffords last blog post..NBOTW – Her Spirit Will Move You
kcinnovaon 23 Sep 2008 at 9:34 pm 6This reminds me of being in the hospital with my 13yo after a series of TIA’s. He was too big to crawl into bed with, but I did spend the night in a chair nearby, praying and crying.
Keep advocating. You *will* find answers!
kcinnovas last blog post..As the leaves turn
Lanceon 23 Sep 2008 at 11:00 pm 7Hang in there Sheila. You’re loving your son, and caring for him the best possible way you know how. And that’s all you can do. That, and know that there are people out there praying for your son – that this will go away.
Lances last blog post..Don’t Ever Give Up
chrison 24 Sep 2008 at 12:53 am 8We give our undying love, we do what we can, and we hope for the best. I’m sending you a million thoughts and wishes…
Kathleenon 24 Sep 2008 at 5:41 am 9Oh Moonbeam Mom, I am RIGHT THERE WITH YOU. I remember how close I came to losing my precious Thomas Earl at birth. I would not be happy until a nurse (a friend of the family) brought him up to see me that night and I knew he was alright. They could not let me hold him because I had been so heavily sedated for the emergency C-section. But this precious lady brought him up “against orders” and risked her job because she felt so bad for me and what I had gone through that day. I will forever remember those feelings.
Then I had that same feeling standing in the NICU and looking at our precious twin, Luke, also all hooked up. I had tears flowing, and kept making the nurse promise me he was going to be alright. It does not get any easier with grandchildren either! In fact, I think it may be harder because you are hurting for your child and yourself.
Kathleens last blog post..Somewhere Over the Rainbow . . . . there’s a land that I dreamed of once in a lullaby!
Kylaon 24 Sep 2008 at 8:01 am 10I’m so sorry. As much as knowledge is power, and as much as I try my best to learn everything I can about any possibilities in regards to KayTar, all that knowledge can also be a heavy weight to bear. Your worries carry more weight when there is knowledge behind them.
I’m hoping for the best for you and your smiling boy. Hang in there, Sheila.
Kylas last blog post..Evacuation Update: Day Whatever
Karl Staib - Work Happy Nowon 24 Sep 2008 at 1:21 pm 11I pray that he doesn’t have secondary immunodeficiency. Hopefully with rest and good love he will be just fine. It’s always tough to see a kid go through something like that.
Karl Staib – Work Happy Nows last blog post..Pig-Headed Determination and Discipline
Melissa Lagerquiston 24 Sep 2008 at 1:34 pm 12I’m so sorry to hear you’re going through this and hope you get the answers you need to begin helping Jake feel better very soon!
tiffon 24 Sep 2008 at 2:26 pm 13I’m right there with you, my friend. It’s so scary this journey.
We are in the hospital now with pneumonia and bilateral pleural effusion. They are talking chest drains for goodness sake.
I hope Jakey feels better soon and that your heart gets some mending too. Alot of stress can push it to full and then to bursting.
Hugs from us.
White Hot Magikon 26 Sep 2008 at 2:51 pm 14Oh I hate that he is sick again. And I love the magik of sleeping kids. Now I want to go cuddle with mine.