The kiddos and I have had a great week at home. William discharged from his 15 day hospitalization on Monday 11/29/10. Although his RSV swabs and labs were negative for RSV, we were convinced that our little buddy had a cold. When we dc'd, we were sent home on a higher flow of oxygen then he had previously been on- now on 0.4 LPM. Since Tuesday, I have had to increase William's flow to 0.5-0.8LPM. He hasn't been congested, or wheezy and I have been giving his albuterol as needed. I spoke with his pulmonologist yesterday and she suggested to give William 2 puffs of his inhaler every 4 hours for 24 hours- bringing us to Saturday, today. And if that worked, to continue for another 24 hours- bringing us to Sunday and then stop the inhaler regimen and see where his O2 requirements are at. So I started the albuterol regimen at 3PM yesterday, and it helped keep his oxygen saturation's above 95% at 0.4 LPM. Woo Hoo.
Later yesterday evening, my mother in law, Phyllis brought some delicious take out from one of my favorite local mom and pop bar and restaurant, Macs Broiler and Tap. They make homemade soups everyday and Phyllis picked up a few bowls of Chicken Noodle soup and sourdough bread. Isabell, Nana and I enjoyed our soup and Isabell went home with Nana for a sleepover at her house.
William and I were enjoying the peace and quiet so much, that after I gave him his 9pm round of meds, we went to sleep! Then i woke up at 2am, to William grunting in his bed. So I got up and checked on him to discover that he was burning up. I took his temperature and he was 103 degrees. His other vitals were normal, so I undressed him, put a cool cloth on his forehead and gave his some tylenol. His temp decreased and we went back to sleep by 4:30am. We then woke up around 8am. He was still a little warm, but his temp was reading 99.6. I thought he was calming down, so I put him in his swing this morning and was going to plan on having a nice day at home. After an hour or so, I looked at William and his face was bright red and he felt so warm again. His temp was 103.7. So now he has two things not looking so good- needing more O2 and a high temp. I was so bummed, but I knew he needed to be seen by a doctor. He is so medically fragile, that I cannot take a risk or chance of trying to let William recover at home. He has such little reserve, and with his upper respiratory issues it is always best to have blood labs done, and chest x-rays to try and avoid and/or treat any pre-pneumonia's or pneumonia's. Or any respiratory illness, for that matter.
We arrived here to the PCH ED around 12 noon. We have had blood drawn (IV in the center of his forehead), and x-ray already. X-Ray showed left lung looks like a little pre-pneumonia- and the signs area ll there. Moving less air in his lungs, increased heart rate, compromised breathing- and just got done trying to fight off an upper respiratory illness from last week! The Ed doc just started some IV antibiotics in his IV. Poor little man has has one hell of a year. His blood labs are not back quite yet, but should be any minute now. We are getting admitted, but I am not sure where we are going yet. I hope William is stable enough to stay out of the PICU this visit!
I feel like we will struggle through this winter, upcoming spring and fall- possibly even next winter with William. I feel like he will fight through any severe respiratory illness, but he is so very fragile and has such low reserve. He needs a good 6-12 months to build a stronger reserve, and make his hospital visits further apart! The bad thing, is when he is here in the hospital fighting off illness, he is not building any reserve. He builds strong reserve when at home for extended periods of time, and William hasn't had an extended time at home since before May- spending most of the summer in-patient at PCH for surgeries, battling illness and more surgeries. He will get big and strong if he could just make it through the next 6-12 months of battling respiratory illnesses.
Ok, more updates later- I am going to hunt down the doc and discuss William's lab results and plan of care at this point.
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