Update on Skylar

This photo was taken today. My son has gone up there to visit him. He cant stay up there full time like Momma can because he has to work so he only gets to spend a few hours with him each week. He sent me this photo and so I threw together this layout with it and wanted to update here for my followers.

To recap please read Skylars Story which you can find on the tab going across the top of this blog. The short version is Skylar was born with a Congential Heart Defect called Tetraology of Fallot with Absent Pulmonary Valve. He has already had one open heart surgery as the valves were crushing his lungs and causing them to collapse. He is currently in the Cardiac Intensive Care Unit at Children's Hospital. He requires the assistance of a Ventilator to breathe as his lungs are in bad shape. Lately we have been battling with them being able to wean him off the strong pain medication that they have him on. He was kept sedated after the surgery because they did not want him stimulated too much as it just makes it so hard on him. He has a trach tube inserted in his windpipe to breathe. He has been having withdrawals from the medication every time they attempt to wean him and so their answer to this has been just to turn the meds back up again and try later rather than risk getting him too worked up at this point. Momma has not been too satisfied at this point as she feels they prematurely jump to turning up meds rather than allowing him to calm himself down on his own, which she says she has seen him do multiple times herself. They want to wean him off the medication and see how he does on his own but like I stated it has just been one heck of a process and they seem to be going in circles with it at this point.
He has had a few spells this past week where his heart rate has fallen but they seem to think it was due to a reaction to some of the medications he has been on. He spiked a fever once but they finally got it to leave. They are talking about doing a scratch skin test to check for allergies as he seems to react to a lot of the antibiotics that they have tried thus far. Momma gets to hold him for a couple hours each day provided he is doing well that day. For the most part he pretty much stays sedated when he gets worked up. We are in it for the long haul and when he first had the open heart procedure in October the doctors stated then that he would likely be in the hospital for 6-9 months depending on how he does. So we are not near there as of yet. We had hoped he would be home by Easter, but he is going to have to make some major improvements between now and then if not, we are looking at Summer for certain. I will update again when I have something more to share. In the meantime we appreciate any and all prayers and positive thoughts you can send our direction.