Friday, May 27, 2016

Uncharted Waters

Over the last 2 plus years, we have been very lucky...Ian has remained healthy. We last week that changed. We traveled into uncharted waters, caring for him at home, no hospital visit. It got rough for a little last post from Thursday, May 19th stated that Pain Stinks...well looking back that was the beginning of Ian being sick. Thursday night around 10:30, his nurse informed Brian and I that he was not maintaining his oxygen levels and she was going to put him on oxygen. At 11:30, she came to get us to let us know he had a temp of 102.5. Ugh, this was not good, Ian does not usually run temps so this one really through us for a loop. We gave him some medicine, tucked him back into bed and told him to close his eyes that sleep would help him to feel better. 

Well Friday (May 20), I decided to stay home as I was not comfortable leaving him, scared to leave him.  A great decision on my part....he woke up saying he did not feel well...his temp was down to 99.5 (this was actually the highest it got to be all day). As the day progressed, so did Ian's respiratory distress. While he was getting his regular morning breathing treatments, he was not able to maintain his oxygen an increase in oxygen was needed. In addition, there was an increase in his secretions, they were thicker and starting to get discolored. We needed to play with the oxygen and continued to suction for a few hours until we could get him stable. His home respiratory therapists and hospice nurse were due to come for their visits on that helped with deciding on a plan. Since not going to the hospital is in the plan, we needed to figure out how we were going to treat him without knowing what was really going on. From listening to him, we knew he had decreased breath sounds in his left lung. So the plan was to increase his respiratory treatments from 3 times a day to every 2 hours round the clock.   This includes a nebulizer treatment, cough assist, and suctioning. We had some bactrim (antibiotic) in the home, so we started him on that. In addition, we could increase his ativan and oxycodone if needed. We know that would make him sleepy but we also know that sleeping when you are sick in a good thing. 

Saturday (May 21) was an okay day, he had one episode in the morning which took me about 45 minutes to stabilize him. We continued to do his treatments every 2 hours and he slept on and off while watching TV. Around 6pm, he told me he needed all his respiratory treatments, which includes, nebulizer treatment, chest vest, cough assist, and suctioning. While doing this his first huge plug made an appearance. I did another treatment at 8pm and out came another plug...this was all good, better out then in we say. He was not running a temperature anymore and his breathing seemed to be a little bit better. As this point, I was hoping we were crossing over to the getting better side of things...only time would tell.

Saturday night was a good one for him, he slept through the night and all of his treatments. It was a quiet night for him.

Sunday (May 22) was not so great. We got lots of plugs out and he was on oxygen most of the day. In addition, he slept most of the day. He was on 1.5 liters of oxygen through out the night and his secretions continued to be thick. 

Monday (May 23) was a better day. his secretions were starting to thin out. We were still doing his treatments every 2 hours. Around 4pm, we were able to get him off of oxygen and back on room air. In addition, we started to do his treatments every 4 hours. We were making a turn in the right direction. He took a good morning and afternoon nap but was awake for his regular visitors. 

Tuesday (May 24)....he took a good morning and afternoon nap, and awake for his regular visitors. He continues to be off of oxygen, holding his oxygen levels around 98 as well as his heart rate has come back down to a comfortable level. After a conversation with his hospice nurse, we are back to doing his respiratory treatments 3 times a day. We will continue the bactrim for a full 7 days, so he will finish on Friday. 

Wednesday (May 25), is just another day. He was engaged with his teacher, ate pretty good and continued to get back to himself. 

As for Brian, Becca and I, we survived the uncharted was just the 1st time but we know it won't be the last. For those that knew, Ian was sick, thank you for all of your help as well as your text messages and phone calls checking in. We could not have done it without you. 
Thursday, May 26th...looking good after a rough week!

1 comment:

Marci Scher said...

Heather Lev Glad he is on the mend and may be keep it that way!!! XOXO

Leslie Middleman Toll There is a nasty virus going around with a ridiculous amount of congestion that everyone seems to be getting. Regardless if that is what he had or not, I am glad you were able to manage getting through it. Happy he is feeling better and hoping your stress level has decreased a bit.

Kelli Maples Bethel Sending you hugs. I am so glad to hear he is better

Jennifer Larsen Orlando So glad that he is doing better. I hope that this is a much better week for all of you.

Annelise Sullivan I'm so sorry you were dealing with this. Jonathan, too had a fever and cough needing nebulizer, but Ian has so many other issues that complicate a virus or infection like that. So glad he's on the mend

Laurie Rubin Glad Ian is doing better.

Jill Pelovitz I'm so glad all of you are on the other side of this. You know your child and you know when something is wrong or when he needs something. After managing this situation you will be even more quipped next time you have to battle illness with him. It is easy to take childhood illness lightly and not understand the impact it has on Ian. This post clearly illustrates the devastation a simple virus or infection can have on a medically fragile child. Thank you for sharing and updating us.

Kendra Bober You are an amazing family! Hope you have some smooth sailing now!

Deana Munchow You all are so strong. I'm glad he is doing better!

Carye George Everett Glad you had such support and got through this together. Love the picture of Ian smiling!

Alicia Katznelson Broth Your strength amazes me. We are all learning so much from you. Hope this is a Shabbat shalom!

Anne Polakoff King Wishing all of you peace.

Barbara Paige So glad he is better. Sending much love❤and sunshine!🌞

Harry Blacker Sending good wishes n prayers

Daean Menke ((((Hugs))))
Marci Weinberg Scher
Marci Weinberg Scher How's Claire doing?
Daean Menke She is doing fairly well these days.
Marci Weinberg Scher Love to hear that. Xoxo

Arlene Brown Stein I am praying for your very strong family, You are all amazing

Connie McElroy Lippenholz So glad to hear he's feeling better. Hugs to all! <3

Traci Kodeck Glad he is feeling better. What an amazing village of caretakers!

Jessica Woolf Dorsey Eva is sending you all kisses!

Julie Onnembo Glad he is better. Sending hugs and positive vibes!