Home Sweet Home

We are home, and it feels SO good!! It took us awhile to get cleared by all of the different doctors that have been on Casen's case (nephrologist, general pediatrician, surgical team, and the infectious disease team), but after the infectious disease team gave us our final instructions and medication rundown we packed up and ran out of there! We didn't get home until late last night, because we had to stop by the hospital's Home Health Infusion office before we left town to pick up all of the supplies that I'll need in order to care for Casen at home. I also had to do a trial run at the office so that they could make sure that I am competent to administer his antibiotics at home by myself.

After reviewing all of Casen's cultures from this past week, our medications were ultimately narrowed down to one antibiotic that needs to be given every 8 hours (each session lasting 45 minutes) and one antifungal that is given just once a day over the course of 1.5 hours.  Our fridge is packed with medications, my closet has been turned into a nursing station, and our bedroom has been rearranged to accommodate having Casen sleep next to us for at least the next 7 days.  I am a little overwhelmed at the idea of being Casen's nurse, but it is so much better than the alternative! We will have to follow this schedule for one week and then follow-up with the infectious disease doctor to determine if we can finish treatment.  At that point, his PICC line will be removed and he will be able to take a real bath!  Now I am just praying that nothing goes wrong with his PICC line this week and that it doesn't accidentally get yanked out, wet, etc.

When we got home last night everyone was still up to greet us, and our friends had brought over goodies, a sign, and balloons for Casen to see when we walked in the door.  He was so happy to see everyone and loved his balloons!  After only eating a couple bites of each meal since being cleared to eat at the hospital, he downed 2 bowls of noodles and 3 bowls of cereal before he went to bed last night. I am so glad that his appetite is back so that he can gain more strength.  His little body was so weak when we first got home that I had to follow him around everywhere he went to make sure that he stayed upright. 

Last night was a little rough for me as I was up from 12:30 to 2:30 giving him his treatments, but it is still so good to be home.  Hopefully I will be able to slowly adjust his dosing schedule so that I am only giving him one treatment at night. It's so nice to be together as a family again! On our drive home last night poor little Bentley called me in tears wanting to know when I would be home again.  He quickly cheered up when I told him I was only 20 minutes away.  He has dealt with everything so well during the 8 days that we were away, but he was ready to get things back to normal too!  Today has been a day of healing for Casen.  Both he and Bentley are happy to be playing together and making each other laugh again.  By the end of the day, Casen was walking and running around with a lot more surety of his movements and I'm not so paranoid about being there to follow his every step. We also gave him a much needed sponge bath and we are all feeling more refreshed! I just remembered that I need to go glove up and finish a treatment so it is time to say goodnight! GOODnight.