Home Sweet Home but Stressed

Hello all....I am happy to report Caleb is home and I want to thank you all for the prayers!

Updates: He came home with an IV that is a little more permanent than one that you would get if you were in the ER or admitted so that I can administer his IV antibiotics here at home for his sepsis. Poor little guy was very sick! This was his third life flight. I told him when we were boarding the helicopter that I would like our next helicopter ride to be a sight-seeing one and not for medical reasons. The flight crew was awesome and he did get more momentous from them, t-shirt and pin, proving that yes once again he rode on a helicopter. Thank you guys for taking such wonderful care of our son!
While we were there we took care of a couple other items, other than those that were involved with the sepsis (i.e. water retention, oxygen saturations, heart rate, etc) He started to drop his oxygen saturations (d-sat) and also started to brady (drop his heart rate). He was put on oxygen one night to help keep his saturations up and now is on a pulse oximiter (instrument that measures heart rate and oxygen saturations) here at home to see how is trending. He is now on another nasal spray to see if that will open up his nasal passages and help him breathe at night. Lastnight, he did saturate at 100% from time to time and I was so excited He continues to have a low heart rate. He has done this before and the cardiothoracic surgeons did tell us, after his open heart surgery, that as long as he is perfusing well (extremities stay warm) there is not a concern. I am hoping with a couple more days of recovery, here at home, that his heart rate will normalize. However, we will probably need to schedule a clinic appointment with cardiology in the spring (as long as nothing emergent arises) to have a follow up as he did have open heart and he should be checked in clinic periodically. Also, he was fitted for a new hearing aid mold as he lately has been taking out the hearing aid very frequently and never did this before. We are hoping that once his immune system kicks in we can have his hearing checked in clinic as all his hearing tests have been performed under General Anesthesia and we are wondering if the test in clinic may yield different results. His Mic-key button was changed out as he is a growing little boy and needed a bigger size to accommodate his growth, no failure to thrive anymore! We have also transitioned him to a more age-appropriate formula to feed him through his feeding tube. Right now we cannot get a hold of how his gut is handling it, as in the past he has issues absorbing formula due to his immunosuppression, because he is having diarrhea due to the strong IV antibiotics he is on. So once the antibiotics are done, we will get a better idea of what is causing the diarrhea. So we are definitely not out the woods and our stressed as we listen tot he monitor alarm, but it is nice to be home and we pray that Caleb's condition continues to improve.
As stated in the last post, our poor dog Saba, new something wasn't right with Caleb when he got sick at home. She followed me from room to room as we were getting stuff ready to take him to the ER. My mom and dad watched Saba while we were at the hospital with Caleb. My mom called one day while we were there to inform us that Saba was getting sick and not holding anything down. We had her checked at the Vet, wonderful Karl, to see if she was okay as she is getting older. After some normal bloodwork results, we are beginning to wonder if Saba is suffering from stress and anxiety like we do. She is resting now at my feet, and I am hoping she feels better very soon.
As if our life isn't stressful enough one additional stressor seems to be hanging on. I debated about posting it, but need to vent...As you all know we fired one of our nurses back in September due to ongoing questionable and unethical actions. We then asked our nursing company to let her know when they were terminating her employment from the company to stop contacting us. Unfortunately, several months later she continues to feel justified to act this way and to harass our family from afar. When she worked here, she gave Caleb a highchair, AS A GIFT. She recently had her friend write a letter to the nursing agency saying she wants the highchair back along with some personal items that were here. Her personal belongings, a cell phone charger and a book, were returned but the highchair was a gift and we didn't feel it was right that she was trying to take a gift back so we did not give that to her. Her friend then wrote another letter to the nursing company saying she wants the highchair back and that it wasn't a gift. Are you kidding me?!? Honestly, I feel sorry for her...I really do. It is sad that she feels justified in her actions to feel the need to bother our family, like we do not have enough to deal with. I don't know what we are going to do...I don't think it is right what she is doing...but in the same regard...maybe if I give her the gift back she will leave us alone! If we could get a guarantee that if we gave her the gift back she would leave us alone, that would be a positive.
Okay enough of the venting...I feel better!
Again, I want to thank you all for the phone calls, emails, etc. I will update soon to let you all know how things are going. Thank you again for checking in on us!

God Bless you all!!

God Bless Caleb!!