So sorry for the delay in updating you all on Ally. She has been home from the hospital again for a week now. We had also headed home to our house for this past weekend so things have been very busy. She is doing well and looking great. Her line did stay in because her cultures had remained negative. She will be continuing on IV antibiotics until the second week in June and then we will follow up with another echocardiogram and an appointment with cardiology. So we will wait and see how things look then.
Ashley had her last day of school on Tuesday and she had her Kindergarten Graduation today. We took a lot of pictures and video so we will try to add it to the site soon (along with some from the trike-a-thon). After graduation there was a picnic for the whole school and Ashley got to enjoy time with her friends and teachers. It was such a terrific day filled with many reminders and memories of how much Ashley has changed and grown in the past year. Living in Pittsburgh has been a great experience for Ashley. It has given her the opportunity to try many different things and has given her the chance to make many wonderful friends along the way. She has had to deal with and overcome so many things in her five short years of life. I am incredibly proud of her and I am amazed by what a strong little girl she is.
Hope you all enjoy your holiday weekend. Certainly make the most of it, I know we will!
Ally is still in the hospital hanging out in her old stomping grounds on the transplant floor. She is looking and acting remarkably well and today she finally has a negative culture!!! Infectious disease thinks it might still be a good idea to pull the line and place a picc line. This is because Ally has grown two different types of bacteria, one of which is the same kind that was previously assocaited with the area of endocarditis. The problem is she will need a line for another 6 weeks of IV antibiotics and Ally has never had a picc for that amount of time and I am not sure how well it will work.
Right now the plan is to keep the line in if we can keep it cleared but if we begin to have any trouble with it (flushing or blood return) then we should return to the hospital and have it removed and then have a picc placed. Then hopefully at the end of 6 weeks the line can be pulled and she will no longer need any type of central line access!
Of course that was the plan this morning and since we all know how well Ally sticks to the plan we will wait and see if the plan is still the same tomorrow!
I have always hated updating this site with bad news but it seems even more difficult to update with bad news now after having such a long stretch of good updates. So the bad news, Ally is back in the hospital.
Its kind of all a long story but I brought her to the ER yesterday because she began acting sick (septic shock sick). After a long time in the ER we were admitted to the IICU. The docs felt she needed to be monitored more closely than what she would be on the floor so we settled for the IICU.
Today Ally is looking a world better than yesterday. She does have positive cultures from both broviac lumens. Currently her peripheral is still negative. There is a lot of discussion if this is a true line infection or if this is a piece of bacteria that has broken off from the endocarditis lesion (which after 6 weeks of IV antibiotics looks about the same).
Infectious disease, cardiology, and transplant are all putting their heads together to come up with the best plan. We all know what Ally really needs is to get rid of her central line but it is hard to do that when she keeps needing IV antibiotics! Cardiology did tell me that at this point there would still be no reason to think that she would need surgery to remove this lestion so that was a bit of good news for the day. Plus like I said Ally is looking good and at the end of the day that is all I really care about.
I know Shane added some pictures from the walk and also some video from Ashley's schools trike-a-thon for Ally's Angels (there is also a link to a news story). The trike-a-thon was wonderful, the kids had a blast. I am incredibly touched by the hard work that the teachers, parents, and children put into this event. It was truly a touching day and a memory I will always cherish. They also made a beautiful book of pictures from the event for Ashley and Ally so that they can always remember the day.
I may update again before but in case I don't, Happy Mother's Day.
I know I have not really written an update about Ally in awhile so I will try my best to bring you all up to speed but still try to keep this fairly short.
The girls have been doing great and have just really been busy enjoying their time at home with each other. We have had more walks and trips to the park then I can count in the past few weeks. The weather this past week had a lot to be desired but we still managed one trip to the park and two playdates. Part of me thinks Ashley will be a little bit bored when she no longer has the city life that she has now but I'm sure she will be kept busy all summer catching up with all of her cousins at her Gram's and Grandmom's.
Now that Ally really has no medical complications standing in her way we are working on getting her caught up developmentally with things. Feeding will be one of our biggest challenges. Eventually Ally will take all of her calories by mouth but we are years aways from that. Not that I am complaining, she will get there at some point and in the big picture of things I am fine with that. However it is a daily struggle to just get her to touch or smell food so just imagaine what it will be like to get her to willingly put food into her mouth!
Physically Ally has been getting more of her strength back. She is not quite back to where she was last year before transplant but she is definitely getting close. She has also been fitted for some orthotic type braces for her feet that should help her some with her walking. She of course hates them but hopefully she will be used to them soon. Which brings me to another one of my latest challenges, shoe shopping! Definitely something I would have never thought I would have a problem with. However finding shoes that these braces fit into has been nearly impossible. Not to mention Ally picked the colors for the braces and she did not pick anything subtle or girly, she picked bright red straps and red white and blue straps! Not the most fashionable choice but she picked so I will just deal with it:)
On Monday Ashley's school is holding a trike-a-thon for the kindergarten class in which the money they raised went to our Ally's Angels team for the gift of life donor walk. Together the children at the school have raised over $2,500!!! All of the kids are very excited to participate in this event and Ally will be there to help cheer them on. Ashley's teachers and some of the other childrens' mothers have coordinated this whole thing and they have certainly put a lot of time and effort into it so it should be a lot of fun.
Otherwise transplant clinic has gone well and Ally's labs have continued to look good. The docs have been able to decrease some of her meds and IV fluids so that is another step in the right direction. She is still on IV antibiotics for another week or so for the endocarditis. She had an echocardiogram done the other week and we are still waiting on those results to find out if there is anything else we need to do or if things are all cleared up.
If you have been following up on Zac thank you for all the prayers and support. I know his family appreciates it. He is doing well and has had one trip back to the OR since transplant. He will probably be headed there again early next week so please continue to keep him in your prayers.
Hope you all enjoy the Spring weather!