A Bump or Two

Since we have been home we have been staffed for 24 hour nursing care assuming that state would agree that Oli now needs 24 hours. The whole story and explaining all of the rules could take up a whole book but I will give you the "in a nut shell explanation" of what I got. Friday we received a letter saying we were denied 24 hour RN care. I first called someone who works at the county office and they had me call another person who had me call another. It always seems like a mystery as to who really makes these decisions. I finally just gave one of the staff a piece of my mind because I was so frustrated and she told me the issue could wait until Monday, she patched me through to her supervisor. Here is what I understood from one of the many explanations. Because Oliver is not on a ventilator or on Bipap he cannot get 24 hour care. There are kids with IVs that do get 24 hours in other counties but Oli does not, even though he is on two 24 hour pain pumps through the IV. Another person told me because we would not call 911 if he stopped breathing we do not get 24 hours. Immediately we had to eliminate our night shift nurse to balance the hours. It is all very frustrating when you hear of other kids in different counties that have fewer pieces of equipment that do have 24 hours. I am not saying that they are less deserving, it would just be great if we didn't have to fight so much. Every time I watch the news and a politician on either side wants to make cuts to human service programs I just get a lump in my throat wondering what might happen to all of the people that need these services. John and I are both still shocked, but we just deal with what we have.
Oliver had a fantastic start of the week. Feeds were up to 26mls/hr, he was smiling more, looking at his vision cards, and even up in his chair for a bit. I was bragging to the hospice nurse and I should have known better! After she left Oli took a long nap. He woke up in a coughing spell and I knew that something was brewing. He has some respiratory stuff that he is fighting. Breathing is very hard again, Morphine increased again, and his O2 saturation were around 70 percent(healthy people are around 100 percent). It is easy to see when Oliver is having lung collapse. When he breathes out it takes him 10-12 seconds to push the air out. Try breathing out for 10 seconds every time for one minute. It is really hard, I try to breathe with Oli and cannot do it. Morphine helps Oliver not realize how uncomfortable this should be. Feeds are back down again and we are just hoping he can fight this off. Hour by hour is what we do.
Everybody continues to be so supportive and I know the blog is checked frequently. We are so lucky to have all of you in our lives. Oliver has and continues to bring amazing people into our lives. All of your love cancels out all of the frustration that comes from the battle of the hours.
We as a family are doing okay. I guess we would explain it that we normalize every phase. Oliver does okay for a week and we get used to that new baseline. Then he declines or gets sick and we re-grieve and then re-normalize. I'm not sure that makes sense but it is our cycle. When he does better than hospice expects, then we celebrate! Here is hoping for a week that starts off like last if we can just get over this bump!