Hard Topic

A lot of our snow was gone in our yard, now it is back. We are all ready for winter to be done! I have not posted for a while, I have actually been avoiding doing so because sometimes it is nice to have things private for a while before we share them. Oliver did fantastic after his trach was placed. He was happy, smiling non-stop and life was great. We had a few bumps but managed with meds. Three weeks ago Oli had more difficulty breathing but his X-ray was clear so we decided not to have him admitted. The following day he became much worse and we called the ambulance for a ride to the hospital. The girls were in bed so John couldn't take us and Oliver cannot be transported unless we have two adults in the car. So basically I just called the ambulance for a ride. It ended up being pneumonia, he was in the PICU for one day and then we talked with our Palliative care doctor and Pulmonologist who are always sensitive to what is best for Oliver. We came up with a plan for how to treat Oli at home the best we could knowing that he could get worse. We were at that point of using Morphine for comfort needs not knowing where Oli would go. He did get better but very quickly became very sick again. We followed the plan to stay home but Morphine was not keeping him comfortable and his temp was 105.5 and increasing so we again are at Gillette. Oliver has also become very swollen around his eyes, face, hands, feet, and lungs. Here is where it is hard for me to write. After all of the testing it was clear that Oli had a little virus but his body no longer can tolerate even small colds. It is hard for him to be in the hospital and becoming very hard on Adina to have her family split up. With our doctors, whom we trust immensely, we have decided that we are going to have Oliver placed on the care of a Hospice team. They will work alongside our already existing home care nurses. We want to be very clear about what this means for Oliver. With adults it is understood that when they are placed in hospice they have a very short time left. With kids it is often very different, especial kids like Oliver. We do not know what condition Oliver has. We don't know why he continues to lose muscle tone, it is not because we don't work with him enough because he gets therapy and uses his equipment daily. It is just the way Oliver is. We don't know why he is getting sick more often, but it does seem that he is declining and is needing more medication to stay comfortable and well. Our goal for Oliver is that he stays at home where he is comfortable. He has advanced directives and is now DNR. He has been through so much and is so strong, but if his little heart stops, bringing him back would be very VERY painful and he would then be placed on a ventilator. We did not place the trach so we could have a ventilator but so he was comfortable and his airway was more stable. Tomorrow Oliver will have surgery to have a Port-A-Cath placed, which will give us access to use IV medications at home. This will help us keep him home and not in the hospital. Hospice will be a resource for us 24 hours a day. If Oli gets a temp for 105.8 again they can come and help us decide what to do. They have social workers, counselors, chaplains,... They will check on Oli once to twice a week, more or less based on need. Our focus is no longer test, test, treat, but comfort for Oliver. Obviously we will treat with antibiotics when we can, but with a virus we can only wait it out and see where Oli goes. Please understand that we are not giving up on Oliver. He could get better and have a great summer and be fine for a long time to come. We just need to be ready and prepare the best we can. We would appreciate if you have any questions to call or email us. Sometimes information changes when passed down the line. Oliver is a very strong little boy and surprises us everyday. It is hard for us to share this. There are times that we want to hold what we know and just keep it ours for a while or forever. Perhaps that is more of an attempt to try and not let the future come. Adina is struggling right now. She is just old enough to understand that things are changing. We have not explained to her that Oli may not be here forever, but on her own she has been asking a lot about death. She is seeing a counselor at Gillette, which is her special time. She cried much of the night last night because she wanted her Oli home. The best thing we can do for her right now is to not leave her because she gets very afraid when John and I are away at the same time. I will try to post again soon because I know you all care about Oliver. Don't feel like you can't call. We just don't pick up if we are busy=)