Isaac has been throwing a few curve balls since he's been home. I was getting concerned because he was acting very lethargic and sleeping a ton. Sleeping is usually not a complaint with him. Usually we are trying to get him to sleep because he's such a night owl and fights naps. He was also not focusing very well on me or others around him.
I sensed that something was off so I requested that he would have labs done with his port. Sure enough his C02 levels were elevated and his potassium levels were low. That would explain the lethargy. Pulmonology suggested that we put him on bi-pap and increase his potassium dosage for a day. Yesterday his levels were good, which explains why his little personality coming back. It's so good to see him smiling and wanting to play with his toys again!
On top of the other stresses this week, the nursing schedule has been an issue. Last month a consistent nurse we had for 4 years was terminated from the agency. So just when we thought we had a long term solution, the new nurse didn't work out. So now we are hoping for someone to fill that shift soon!
Isaac is home and well, sorta happy. He still has that "I don't really care" look on his face. Even when I sang him his favorite song I could only get a 1/2 smile out of him.
The good news is that he's out of that place and back where he belongs! We still have some work to do here with medications to get him back to his baseline. Thank goodness I have the nurses to help me out with some of it.
Autumn had a harder time than usual with this admit. She is very attached to her brother now and was sad that he had to be in the hospital. She came up with me a few times to love on him. I'm so glad that she can do that at home now.
Now let's hope for a smooth respiratory season from here on out!
Just a quick update...I'm using the hospital computer. Isaac is still spiking a temperature and being a mystery. He's A LOT happier after they gave him some sedation to sleep. It was really hard watching him want to sleep, but feeling so restless. They are scratching their heads here as he's been on several antibiotics. The good news is that he doesn't appear to be severely compromised respiratory wise. Today they did a blood draw and a UTI culture. So far the viral cultures are negative. Thank you for your continued prayers that he can come home soon!
Isaac was admitted to the PICU on Monday afternoon. It was a hard decision knowing whether or not to take him in to the ER, but he had been on antibiotics for almost a week with not much of an improvement. I also learned from the Pulmonologists office that he had a secondary infection brewing. That would explain why he wasn't getting better. Monday morning he had a high temp, his heart rate was really high and his respiration's were up. The nurse working on Monday morning has been with us since spring and said that she had never seen him sick like this. I guess that's a good thing because he's been so stable. Poor bud is not a very happy camper today. The antibiotics are already giving him a butt rash, the steroids are making him restless and the RT's are coming in every 2 hours to give him a treatment. Hopefully it won't be long and he will be in good shape to go home! I can't wait until I can see him smiling again!
Poor little dude isn't feeling so good today. We are on day 6 of antibiotics and he appeared to be improving until today when he started spiking a fever with a high heart rate. I just got off the phone with the on-call nurse practitioner and she ordered a steroid burst, but suggested that we take him into the ER if symptoms worsen. They think that he probably has some kind of secondary infection. When Autumn heard that her little brother had a fever, she wanted to make him feel better by putting a wet washcloth on his forehead. Although I thought it was a very sweet gesture, I'm not so sure Isaac liked it very much at first:)
So that's where we're at. I will keep updating here and on facebook.
I recently added a tab to the blog about our first year with Isaac. Feel free to read about it at http://isaacegrove.blogspot.com/p/where-it-all-began.html or click on the tab above. As difficult as it was to write about and relive those very first months, I feel very blessed that we have such a profound story to tell. Isaac has come so far!
Isaac had a fun Labor Day going to pig out at the park, an event downtown. I was somewhat stressed out because of the crowds.....I'm not used to being around big crowds with the boy and it made me nervous because I was afraid that he would be on sensory overload or someone would sneeze on him. Seriously, I need to chill! He had fun checking out the ducks and he waved hello to them. A family there with an almost 2 year old asked me how old he was because they thought that he was the same age as their son....ha ha. Isaac is so super small that he looks like 1 1/2 to 2 year old too. Next week I want to take him to the fair for the first time. I can tell that he's starting to notice the animals more when I take him to the pet store. He was really concentrating on the dogs and fish the last time we went there and enjoyed petting a yellow lab. Isaac should be starting home based school next week. I was getting used to not having a revolving door and that will all change very soon! We are very blessed to get the services that we have between the school district and private therapy coming to the home so that he can stay well during the winter months.
