Home Again

We are home again. Actually we were discharged last Thursday, but Ryan is on continuous oxygen, so we don't stray far from the living room. During the hospital stay, the doctor's confirmed that the right side of his diaphram is indeed not working due to nerve damage that occured during the surgery and the best plan is just to wait and see what happens. According to the surgeon's report, the nerve was identified during surgery, which means that there is a chance it will regain function, it will just take awhile (I never got a more specific timeframe). Meanwhile, Ryan is home on oxygen and has a feeding tube. He is still taking most of his feedings by bottle, but we just use the feeding tube when he gets to tired to finish. Since he is working so hard to breath and heal, he needs extra calories and can't afford to miss any. That's about all, thanks to everyone who has asked how we are doing.

Boomerang Baby

We are back in the hospital. We had a great week, but by Thursday, Ryan was having a hard time breathing and was sleeping most of the time. So Friday, I called cardiology, I called Jason, I called my friend Janet and eventually my pediatrician who had a 3:45 appointment. He agreed his breathing was labored and thought he needed to go back to CHM. I started packing up my things and he said, no, I think he should be transported. So I got to ride in the ambulance to the emergency room, the one part of the hospital we hadn't seen. Once they started oxygen in the ambulance, he felt much better. The cardiologist on call came and did and echo to make sure everything was ok with his heart, which is was. It is still just the diaphragm issue giving us problems. So here we are again, the boys and I are playing in the playroom. I am not sure what the plan is at this point, they can either try to fix the diaphragm or wait it out, cardiology was going to talk to CV surgery tomorrow. Hope everyone had a good weekend, will try to post soon.

Gaining Weight

Ryan had his first visit with his regular pediatrician on Tuesday and he weight 8 lbs 11 oz, up from 7 lbs 13 ounces when we left the hospital, so he is definitely gaining weight which is very good. The best part of this is that it means I can nurse more and pump less which makes me very happy. I asked about getting Ryan vaccinated for RSV and the pediatrician said he would try, but heart kids usually don't qualify unless they are having trouble with weight gain. I was like, "are you kidding me, he had open heart surgery 3 months before cold and flu season starts and he isn't sick enough?". We may have a better shot if the issue with his diaphragm can be documented so I will talk to the cardiologist next week and am keeping my fingers crossed. My biggest fear at this point is keeping him healthy with two older brothers in the house, one starting kindergarten and one starting preschool.

We are all adjusting to life at home. We all went for a walk Monday night, Kyle on his bike, Grant on his tricycle and Ryan in the stroller. It was a very "oh my god, we have 3 kids" moment" but we managed to make it around the block.

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.

Update

Hi, everyone! This is Ashlie. Brandi has been unable to make it to a computer so she asked me to post an update for her. She apoligizes for not posting a blog in a while but she has been busy. Ryan has moved into a new unit of the hospital. Now, either Brandi and Jason must be there 24 hours a day because they are responible for most of his care (and they are doing AWESOME!) Ryan has made a lot of progress in the past few days, and everything is looking up. They have not given a check out date but we are all hoping he will get to come home soon. Kyle and Grant are doing well also. They have made several trips down to see baby Ryan, or Sweatheart as Grant is now calling him. Kyle is warming up to the idea of having another brother while Grant seems to be growing up into his big brother role fast and loves to help Mommy with Ryan.

Life on the Floor

Sorry I haven't posted in awhile. No that we are on the floor, I stay can stay with Ryan all of the time. In the NICU and PICU, we had to leave for shift change which is when I posted. Things are going well, but much slower. Ryan is eating well, although his appetite isn't quite what it has been. I am trying to start nursing and it has gone well a couple of times and not so well a couple of times, having to fix his bottle, and feed him and pump is just not sustainable in the long term. He is also still requiring just a little O2. They think there may be a problem with part of his diaphram that was caused by a nerve getting "touched" during surgery. I am not sure where we plan to go from here. Better go, I am on the computer in the play room. My mom brought the boys up for a visit and I want to hang out with them for awhile.