I received a call last night right at shift change for the nurses. Little Simon wasn’t doing so great. He started to desaturate about 4 pm. By 6:30 he was having major Brady episodes and was basically under guard. Someone had to remain with him until they were able to sort out the issues he was having. A chest x-ray and tons of blood work later, Simon received another blood transfusion with his CRIT down from 38 to 30. Simon’s CRP and CBC’s were off as well and they started antibiotics again. They also made a few adjustments to his vent positioning in his lungs and shortened the tube outside his mouth to prevent kinking.
It amazes me at how we, as parents, are left standing on the edge of a cliff when the phone rings with news such as what we received last night. The cycling of Simon’s ups and downs definitely weighs on our shoulders. What we would give to take on some of Simon’s burdens. Instead we worry and pace eventually giving in and call multiple times to check on Simon before lab work results are in and changes are made that assist our little Champ with fighting for one more day, week, month…
Knowing our little man is back to his usual self, we will rest easier.
Stumble It!
Not only must this all be very upsetting, but being so far away must be an added burden.
This must be very distressing for Simon to say the least.
It amazes me how such a tiny life can manage. With modern medicine we can DO so much more than even only 50 years ago, or even only 10.
Know that we hold you, simon, and your family in our hearts while we pray. God bless all nurses, who in their wisdom need to make very quick and sensitive decisions, with as much care and speed that is possible.
Onward and upward,
Peace Profound
Stephanie
Mysti–Saw your call on AW and just wanted you to know I’ll have a post up with a link later on today. I’m working on it now. Thinking of you guys all the time. Even when you don’t see comments, be assured that I’m checking in and keeping up-to-date on the prayers!
Thank you!
Stephanie – We are doing our best to cope with the situation as it stands and working on getting everything sorted. Tomorrow I’ll be driving down and back and then should be headed back on a semi-permanent stint Monday or Tuesday. What a week it will be for me!
Amy – I can’t wait to see the post! I appreciate it so much!!
Okay, Mysti, post’s up. If I did my job right, I made ‘em laugh and then I made ‘em cry. Crossing my finger’s it’ll help. http://www.mindovermullis.blogspot.com, serving tiny angels near you!
Aw Mysti. It has got to suck to have all of this going on. I am sorry that Simon is still having to fight so hard. I know that this must take such a toll on you, Rob, and Jaden. I pray that all of you have the strength to continue fighting and hangin in there. You are in our thoughts and prayers. Call if you need anything.