What a day. We left at 6am for our appointment and thought we were doing so good. When Jerry started crying in the car I looked for the bottles to feed him and we had left them at home! John thought I grabbed the bag and I thought he did. I won't give you the rest of the details on how that conversation played out! Anyways, we were more than 45 minutes into our drive and had to turn around. Otherwise we had no formula and no medications. We were very late for our appointment and Jerry cried a lot of the way back to the house to get the bag we forgot. Stressful.
The appointment went pretty well. Jerry let our sweet nurse, Linda, pick him up from the stroller to "go play." He screamed for getting his blood pressure and laying down to measure length but was really pretty good for the echo and his EKG. Even when he was upset about something he got over it quick and was fairly friendly. It is good to see him leaving some of his anxiety.
OK. The important news. His heart looks a little better and is heading in the right direction. Dr. Gossett showed us film of Jerry's heart before surgery and from today. It was hardly moving before and was really huge. Now his heart is getting smaller and is actually squeezing. It is far from normal but still good news. We are decreasing two of his medications because the doctor thinks he may not need the full dose anymore and maybe he will not be as thirsty for water with these meds cut down.
The bad news Jerry lost weight according to the records. He weighs 15 1/2 pounds. They are giving us 2 more weeks to see if he starts gaining and then we will go from there. We will go to the pediatrician in 2 weeks and back to CCMH on September 4th.
Our appointment was long and exhausting. We headed for lunch and then took the boys to the Lincoln Park Zoo. It was a perfect day. We felt like a normal family and Jerry was so happy and "normal" all day! Besides the fact that he wanted to get a bath in every water habitat he saw! He even ate really well (4-5 big noodles, piece of bread, mostly that he was just happy to join us!) at a dinner. Now I am exhausted and not feeling great...just lack of sleep probably. Hopefully things will keep improving and we can relax more. Adding photos tomorrow.
The appointment went pretty well. Jerry let our sweet nurse, Linda, pick him up from the stroller to "go play." He screamed for getting his blood pressure and laying down to measure length but was really pretty good for the echo and his EKG. Even when he was upset about something he got over it quick and was fairly friendly. It is good to see him leaving some of his anxiety.
OK. The important news. His heart looks a little better and is heading in the right direction. Dr. Gossett showed us film of Jerry's heart before surgery and from today. It was hardly moving before and was really huge. Now his heart is getting smaller and is actually squeezing. It is far from normal but still good news. We are decreasing two of his medications because the doctor thinks he may not need the full dose anymore and maybe he will not be as thirsty for water with these meds cut down.
The bad news Jerry lost weight according to the records. He weighs 15 1/2 pounds. They are giving us 2 more weeks to see if he starts gaining and then we will go from there. We will go to the pediatrician in 2 weeks and back to CCMH on September 4th.
Our appointment was long and exhausting. We headed for lunch and then took the boys to the Lincoln Park Zoo. It was a perfect day. We felt like a normal family and Jerry was so happy and "normal" all day! Besides the fact that he wanted to get a bath in every water habitat he saw! He even ate really well (4-5 big noodles, piece of bread, mostly that he was just happy to join us!) at a dinner. Now I am exhausted and not feeling great...just lack of sleep probably. Hopefully things will keep improving and we can relax more. Adding photos tomorrow.
Hang in there, Sue. Still sending prayers your way.
ReplyDeleteYeah, you forgot the bag.
ReplyDeleteI may have given Jen's borrowed stroller away to a stranger, but I DID NOT forget the bag!
ReplyDelete