So we made it to the hospital yesterday evening for our scheduled visit to get the Trilogy. Skylar had some junk in her lung (upper right lobe) when she got here, but we've been able to clear it since then. We have been using the Vest which has been awesome! I am so glad Skylar's chest barely reaches the minimum requirement!!! Our pulmonologist stayed late to make sure we got settled in well and set us up for the night - Kyle and I can't even express our appreciation and respect for Dr. Brooks.
I LOVE Children's Scottish Rite Hospital of Atlanta. Seriously, I can't imagine being anywhere else when we need medical help. I feel so bad for families who don't have a great children's hospital close to them. I've heard awful stories of nurses being jerks, doctors giving bogus information, parents not being allowed to stay with their children overnight... and worse. Our stay has been wonderful so far and we're extremely grateful for a staff who respects our requests and is extremely friendly and helpful. Skylar misses Nurse Natalie though :)
We were slightly concerned that Skylar might be coming down with something, but it looks like teething is just causing a major secretion increase (which means more work clearing it) but it is manageable. The other thing we were hoping to get taken care of was Skylar's g-tube replacement in her belly. When we got her g-tube placed a little over a year ago, her surgeon told us they last about a year - sometimes more, but usually a year. The awful thing is that with most SMA kids, they just yank them straight out of their belly with little or no pain medication since anesthesia isn't an option due to their respiratory fragility. I am so thankful that other SMA parents warned me about this or I would have freaked if they tried to do that to Skylar!
After talking to GI, her g-tube looks good still (even after a year and three months) so we're going to ride it out and see how long we can make it last. The doctors have said they've seen some last up to three years so we'll be praying we are one of those cases. They told us what we need to look for as far as deterioration and also explained what to do in case it falls out at home so there's not an extreme emergency. I am pretty confident we can handle it, however, I have also learned to expect the unexpected and pray.
We're switching up her nutrition a little bit before we go home to make sure she tolerates the new formula. It's similar to what we were using, but the toddler version of it and a different brand name. I think we can get this covered under medicaid since a prescription is required, because every time you get more specialized with formula, the price goes up! I'll try to update again soon when we get to go home.
EXTREME UPDATE*** Extreme Makeover Home Edition is coming to Georgia in 12 days!!! Again, we have no clue what family is chosen and where they will be building, but we're hoping they show up at our door on July 10th! Regardless, they will be helping a family in need so if you want to get involved and possibly be on tv, check out the GA Build website. They're having a pep rally THIS THURSDAY at 7PM in Madison, GA with Vince Dooley, the Falcons cheerleaders, the builders for the GA build and the camera crew from Extreme Makeover. More details are on the GA Build Website.
I love life. Even when it's not always great, it's better than not having it.
I started this blog as "expecting the unexpected" and didn't even know what was ahead! I was surprised with a pregnancy, delivered a beautiful little girl in Nov. 2009, and was later surprised with a diagnosis of SMA (spinal muscular atrophy) type 1. The Night Shift post in March 2010 is where the SMA journey begins... Our sweet girl went to Heaven on August 16, 2011 and is where Skylar's journey ends; however, ours carries on.