Well so much for updating this when Ally came home, because as of now we are still in the hospital and I am really not sure when she might get discharged. Before I go on I must say thank you to all of you for listening to my complaining the other day.
All that being said (and everything I said the other day too) I have come to my senses and realize that there was no need to really complain because transplant (thank you Dr. Kyle) was really just looking out for Ally's best interest. Afterall, that is what I like best about the transplant team, the fact that they always tend to lean towards the safe side. Plus after we got the official NO for going home on Friday, Ally's wonderful nurse Patti, thought of a very constructive way for us all to workout our aggression. She supplied numerous cans of silly string for us and after Dr. Kyle delivered the official "NO" we showered him from head to toe and glasses to coffee with silly string! He was a very good sport about the whole thing and even came back to let me empty my can:) I will now be keeping a silly string supply handy to workout all of my frustration I think it worked better than complaining.
Speaking of frustration,(where is that silly string anyhow) things did not seem to improve as the weekend progressed. The first bad news we got was that as of Friday all of Ally's cultures from both lines were now positive. Due to the positive cultures and what was growing (coag-negative staph for all those interested) from her line, transplant ordered an echocardiogram. The echo was done late Friday afternoon and before 5 o'clock someone had already come to talk to us about the results (FYI: fast results in a hospital almost always equal bad news). Ally's echo showed a definitive area of bacterial vegitation in the right atrium of her heart. This area of vegitation is more commonly known as bacterial endocarditis. Some of you may remember that Ally was treated for endocarditis back in the fall but it was later the cardiology team determined that this was not a true area of bacterial vegitation. However, this legion is much larger and it is in an area that looked perfectly normal on her last echo done back in December. Therefore the docs can definitively say that this is endocarditis.
On to the plan. As of now Ally was placed on IV vancomycin and she will remain on that for at least six weeks. This is the drug off choice to treat endocarditis but it is also a very renal toxic drug so her drug levels will need to be followed closely. Plus as of now (this being the fourth day) Ally is still having positive blood cultures. Chances are another antibiotic will be added if the cultures do not clear in the next day or so. Thankfully Ally is still acting well and clinically that is always the most important thing. As long as that remains the case her central line can stay in place and even if the line had to be pulled another line would need to be placed so that Ally could receive the IV antibiotics. An echo will be repeated sometime this week or early next week to see if the antibiotic is shrinking the size of the legion. Then she will have another echo done later in her course of antibiotics. The infectious disease doctors describe this bacteria as something that is very sticky and often difficult to kill but does not tend to make the patient as sick as other bacteria or line sepsis often do.
So for now we will just continue to sit and wait. Ally has been escaping her room as much as possible and both the girls are busy playing with Ally's neighbor (a wonderful little girl that the girls go to know back in the fall). Ashley had a breakdown Thursday night when she realized Ally would not be sleeping at home but since then she has handled things well. I will continue to dream of life outside of the hospital and try to keep focusing on being positive!
Oh I almost forgot to share this great story! My weekend ended on a great note with Ashley vomiting all over Ally's hospital room:(