I called the peds cardiologist (PC) and he was concerned about Jessica and asked if I had called the pulmonary doctor yet. I said no and after a bit of a conversation he asked me if I would like him to call the pulmonary doc and I said sure! It took awhile for him to get ahold of the pulmonary doctor but after he did he called me back. First thing he asked was if Jessica was still involved with hospice. I said no, they discharged her over a year ago. Both he and the pulmonary doctor had thought that was the case but just wanted to check and make sure. He explained that with Jessica, we don't know what to expect. So many times when he has thought that Jessica was in trouble she has turned around and pulled through. On the other hand, Jess may not have a lung bleed for months and then all of a sudden she could have a major one and that would be "it". The question would be then, if something were to happen, would we want to be in the hospital or at home? Both the PC and pulmonary doc have parents who are in their 80's and have living wills. He goes on to say that many times people who are in hospice want to be at home but when the time comes for one reason or another decide to go to the hospital. They know that there's not anything that can be done at the hospital that can't be done at home, but they feel more comfortable being in the hospital. Now with Jessica, this could be a small lung bleed and she will be fine tomorrow or it could turn into something major. It's up to Karl and I as to what we want to do. Karl definately wants us to be at home but I'm not quite so sure. I reminded him that in Jessica's case we are not dealing with an 80 year old mentality, we are dealing with more like an 8 year old. He agreed. I said that I really think we should do what would be most comfortable for Jessica. By this time Jessica had stopped the hymoptysis (coughing up blood) and seemed to be in better spirits. The PC told me that he was going out of town tomorrow but it would only be for the day. Our pulmonary doctor is on call this weekend and knows that I may call if things get worse. The pulmonary doctor was the one who helped us get hooked up with hospice and has known Jessica for many years.
I feel comfortable keeping Jessica home and if things get worse I know I can call the pulmonary doctor. None of us feel it's a good idea to take Jessica to urgent care since she would only be exposed to other illnesses and they wouldn't be able to do anything for her. Jessica had multiple x-rays when she was having frequent lung bleeds in the past and it never showed any blood. They would need to do a ct-scan in order to see it.
So far Jessica is feeling fine with staying home. When she first started coughing up blood she wanted to go to the hospital but after it stopped she has been feeling more comfortable. She also feels better knowing that her two best doctors know what is going on with her and say that she is ok to stay home. My neice is having a princess birthday party tomorrow and I reminded her that if she is in the hospital she won't be able to go to the party. She had forgotten about the party and now has a reason to want to stay home. She said that she wants to take a bowl to the party just in case she coughs up blood at the party. I jokingly said of course, since Aunt Alice doesn't have any bowls in her whole house. lol. I remember when she was coughing up blood practically daily and it was just a way of life. I guess we may be facing that again.
Any good thoughts and prayers would be greatly appreciated.