Home Sweet Home

We are home! Ryan was discharged on Thursday, July 3rd after 22 days in the hospital. I think that last week we spent on the floor was both the best and worst. Best because we got to stay with him all of the time but worst because things just moved much slower. When we initially transferred, people seemed to indicate we would be able to go home in a couple of days, maybe even Monday. All he really needed to prove was that he could eat and breathe without the extra oxygen. Eating was not a problem, although his appetite wasn’t nearly what it was pre-surgery. I could generally get him to take around an ounce at each feeding which wasn’t great, but would work. The oxygen proved a little tougher to shake. He was down to a very low amount (similar to the prositns pre-surgery) but just couldn’t seem to get by without it. I think I may have posted this previously, but they were thinking that one side of his diaphragm wasn’t working, probably due to a nerve being “touched” during surgery. Since this was expected to awhile to heal, the plan was to “dry out” his lungs as best they could with diuretics in order to get him off of the oxygen, so for a couple of days, he received more meds as we waited for his chest xray to show signs of improvement, which it never really did. On Wednesday, they decided to just send us home with oxygen since it would likely be awhile before he didn’t need it, which I was fine with just to get my family back in one place. That afternoon, the RT decided to try just one more time and low and behold he hung in there. They took another chest xray and this time it actually did show improvement. They had actually already delivered portable oxygen to our room for the trip home, but we were glad we didn’t need it.

Another thing that made the week more difficult was that one of his newborn screening tests came back with an abnormal result. Further testing has since revealed he is fine and in hindsight there were several reasons to believe the screening test had produced a false positive, but for several days I was paralyzed with fear and sadness. If anything it made me realize that everything is relative and things could always be worse. Actually, just being at Children’s Mercy day in and day out makes you realize how lucky you are no matter what your situation and lucky we are to be home. Kyle is for the most part indifferent, much as he was when Grant came home. He keeps his mind busy thinking about sports and playing with his friends. Grant on the other hand, can’t get enough of “my brother, Baby Ryan”. It is so cute. He is always telling him “hi”, giving him hugs, holding his binky and saying “look at those little feets”. It is just so nice to all be back in one place. Ryan is doing well, if you saw him, you would just think he was a normal newborn with some bruises on his hands and feet. He was discharges at 7 pounds 13 ounces, so he is still needs to be feed every three hours. He is amazing at switching between nursing and the bottle and we are doing more nursing each day. For now, he still needs some extra calories while he heals, so he gets at least 4 bottles a day of pumped breast milk mixed with formula. I have a follow up appointment with our primary care doctor next Tuesday and if he is gaining weight ok, we should be able to switch to mostly nursing with one bottle for his potassium and chloride supplements. We also follow up with his cardiologist in two weeks. I am not sure what will go on during that appointment, but we will see. Hope everyone had a good holiday weekend and thanks again to everyone who has sent well wishes and offered to help with the boys.