William update!
We are still here in the PICU at PCH. William is feeling a little better, and is just the sweetest little guy ever. Last night, Richie came home, and my mom stayed overnight with her WIlliam so Isabell and I could have some daddy time. Grandma just can't stand him being here all alone. It's so awesome, her and William have such an amazing bond. I ma glad she was here with him, because his scalp IV went bad overnight, and IV team had to come and try to poke him for a new IV and he cried. So I am so glad grandma was there for him.
We do not have any true evidence to prove what is the cause of William's respiratory distress that he is experiencing, requiring this ICU stay.... but we are convinced that it is a virus. All of William's RSV screens have been negative- which means we cannot identify a virus. But the RSV screen doesn't screen for every single virus and/or germ. William is just so fragile from a respiratory standoint, is asthmatic and if he is exposed to the smallest germs, it has proven to be lethal to him. He does not have much reserve, and when he gets a cold, his lungs are just not strong enough to recover on their own. He is on a lung steroid, and is still on a high flow of oxygen. Each time we try and ween his O2 down, he does not tolerate it. His labs have been decent for the past few days, but a few things are slightly off here and there... like today his potassium was elevated so he got a dose of lasiks to help get rid of some extra fliud and see if the potassium will go back to normal. Luckily his CO2 levels have been getting better and better. I have to tip my hat to the ICU team we have had this past week, they have listened to me, assessed William to the fullest extent, and together we have created the current treatment plan and goals for William, and together we have stabilized my little buddy and are seeing improvements. The main goal we accomplished thus far- Staying off the vent! It was a scary and questionable day on Monday because we weren't sure if William would improve with other interventions for his respiratory distress. The ventilator would have helped him breath perfectly (because it would be doing the work for him!) but one huge concern is that if William goes on the vent, as fragile as his lungs are he may become dependent on the vent and we might have a hard time getting him off the vent. His lungs might love the "help" so much, that we would run into extubation issues. If this scenario ever does occur due to William falling into respiratory distress requiring help from the vent, and we cant get him off the vent we would look into the options of inserting a trach into his airway. SO this winter flu/rsv season is really going to be one hell of a season for us, and we hope that we can nurse William through the rest of the season without any scary hospitalizations. Get our little man a little bigger, a little stronger, build up some reserve!
Side note.... I have met a really nice mom, named Sandra and they are here with thier little 5 year old, Princess Mia who is battling brain cancer. They also have 2 younger children and they need lots of well wishes sent their way. Also want to ask all my friends and family to send out well wishes for another family we know, the Morton's. Their little Jack is battling stage 4 Neuroblastoma, and as Jack's mom says- Jack is karate chopping though this awful disease like a champ! Way to go Jack, but they still need lots of well wishes sent their way. I seen them this morning, and they are here waiting for Jack to go through some more testing. When Iseen the cute little guy, he looked at me and said "HI!" all cute and it was so cute.
Richie has to drive back to California tonight, and has to work tomorrow (Saturday) through Wednesday and will be home Wednesday night for the Thanksgiving holiday.
Isabell will be turning 5 on Tuesday, and I am so bummed that William has been in the hospital becasue I have not had a chance to plan a birthday party for her. I am hoping I can concoct a plan for her- she deserves a fun birthday celebration. She is the best daughter, and always so happy and full of life. Smiling from ear to ear and always lighting up my world. I can't believe she's 5 already! She loves cake so much, and I'm excited to have a birthday cake for her. We are getting her a big wooden playset/swingset for our backyard for her birthday but it wont be put together until next Friday when Richie can put it together.
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