by The last 24 hours have been a roller coaster of emotions.
We’ve known for a while that AJ needed a series of 3 surgeries to repair his heart defects and that his downs syndrome made things more difficult. UIHC felt the surgery was too high risk, and they went on a hunt for another more skilled facility for a second opinion and to complete the procedure.
Yesterday we heard back from CHOP (Children’s Hospital of Philadelphia) who agreed to do the surgery and were able to give us better odds of outcome than we’d heard before. We met with the team here at UIHC and started the process of planning transport.
In the midst of all of that, AJ’s belly started to swell up and they started to worry about an infection. They ended up bringing in an ultrasound tech and the surgical team to look him over, and for a moment we were worried it was an infection and that transport and surgery wouldn’t be an option.
From there, they determined that the fluid in his belly doesn’t appear to be an infection, but rather his IV’s seemed to be going into his belly instead of where they were supposed to be, so late last night they redid his lines (had to call in a transport NICU nurse to assist), but after a few pokes they were able to get enough lines in to get him through until the morning – right now he has one line in his head and one in each of his feet.
At that point (early this morning) CHOP agreed to still take him and working on transport resumed.
This afternoon, it was determined that there’s bacteria in AJ’s arterial line. They’ve tested and it doesn’t seem to be anywhere else, but CHOP has asked us to wait 48 hours from the time we started antibiotics (late last night) so that they can re-evaluate and make sure that nothing new has presented itself.
So – right now they’re putting in a new arterial line and a picc line for better access for medications and blood draws etc. And we’re back in the waiting game until Thursday morning.
Due to everything going on, we’re trying to limit AJ’s exposure to other people and germs and are cutting down on his number of visitors… Unfortunately that also means his snuggles from the visitors he does have will probably be limited as well. We need to keep him as healthy as we can from this point forward in order to ensure the highest likelihood of him staying healthy, ready for surgery and in the best shape possible.
Our fundraising page has continued to grow and considering all of the transport and time away from home in Philadelphia that we’re looking at as we move forward, we couldn’t be more thankful to have such amazing friends, family, friends of friends…. and even strangers in our lives supporting us. Please keep the prayers coming that we will be able to transport to Philadelphia before the end of the week! And for those who have already been praying and donating, thank you, thank you, thank you!!
