Isaac is home sick today. No real big concern at the moment, just a stomachache. Isaac has been complaining for at least a week or more that his stomach hurts every morning, I am not sure what is going on. Last night he felt like he had a fever. As a heartmom I always worry if this is signs of heartfailure this time or is it something minor. Most likely it is something minor, his color is good and he acts fairly normal. A few days ago he cried saying he was feeling sick and I told him he had to go to school, Isaac constantly feels like this and it's hard to know when he is sick enough to keep home. The part that had me nervous was that I noticed his legs looked pale blue when he was crying, although his color changed back to pink after a few minutes. I sent him to school and kept my cell phone close by all day hoping that he would be okay and he was fine. It has been almost a year since Isaac had his Echocardiogram and visit with his Cardiologist. Isaac's last report said that his Tricuspid valve still leaks moderately, but stable. We have been talking for the past few years about closing his fenestration from his fontan by doing a heart catherization, I will have to wait to see what the Cardiologist says this time. Isaac is scheduled to have his annual visit on May 10th. I get a little nervous as it approaches thinking of what the next step may be. I just hope and pray that Isaac is given the clean bill of health signal and told to come back in a year. I naturally worry because I am always hearing reports of other heartkids not doing as well as him, and I wonder when he will be needing the next step. I know that with his heart condition I am not being unrealistic, I just have to hope and pray that we are able to make the most of the time Isaac has here on earth, and not forget that my girls or anybody have any guarantees to live longer, and we all need to make the most of the time we have. We all live with uncertainty, some of us are just more aware of it.
Isaac has had croup since last Wednesday. I let him stay home Wednesday & Thursday, and he had no school on Friday. Croup has improved for Isaac over the past year, this time he has not needed steroids, which is a blessing. I sent him to school this morning, but I feel like the mean Mom cause he was coughing pretty bad this morning and I told him he has stayed home long enough. His school teacher gave me the look last week when I had SEP's not believing that he was really sick. I wish she only understood what Isaac and our family has been through. She doesn't really seem to believe or understand how fragile Isaac really is, because he looks so normal on the outside.
I was thinking today about Isaac's arthritis and how I rarely or never talk about it on his blog. Isaac had a lot of arthritis last night, some in his back and a lot in his leg. He had a bad sleep because of the arthritis. I wonder how many kids with heart issues go through the same thing. Sometimes he has chest pain, right in the middle of his chest; my first thought is heart failure, but I really think it is arthritis again, because of his rib cage being broken open with a saw during heart surgery and then being closed again with wires. I am not looking for pity,I just wonder if other kids like Isaac go through this in the winter and other times when the barometer changes so much.
I have been a bit of an emotional wreck today. I took Isaac to his followup visit today. While we were there I worked on filming my short documentary. I was doing pretty good until his wounds started to get uncovered. First the doctor took off the bandage from his chest and it was swollen like a huge bubble on his chest, the doctor said it was full of fluid. Next the doctor removed the bandage from his ear; the ear was swollen as I expected and looked very painful. Soon it was time to numb the incision on his chest and drain the fluid. Isaac was crying from the pain of having the bandages removed and started to cry about the procedure being done on his chest. I tried keeping Isaac calm, but it was difficult because at the same time I am smelling alcohol from the numbing shot and watching it as it slowly enters his chest as I hear him cry. At that moment I started to feel nausea and weakness, I was overcome with all of the stress of thinking my poor boy was suffering with pain and fear and I could barely keep it together. I let the doctor and his assistant know I was going to pass out, then we hurried me to the floor and I immediately passed out. I woke up a little confused and remembered where I was. the doctor checked my blood pressure and it was very low, then my pulse and it was a little high. I was given a coke and some rest and I recovered. While I was recovering me the doctor told me Isaac had a Hematoma, a complication from surgery. I was shown the hematoma, it kind of scared me to think of what could have happened with that blood clot. Isaac remained calm the whole time I was on the floor and didn't cry, he was aware of what was happening, but was brave and helped me stay calm. On the way home I talked to him, he let me know that he was mostly scared and that is why he cried during the numbing shot. I knew he was crying from pain when the bandages were removed, but I didn't know when the cry changed from pain to fear. I am relieved that the shot didn't hurt, but feel kind of bad that I got so stressed over it now that I know how he felt. I don't like my kids to see me in situations like that, but he handled it well. To top it off, I seem to have PMS making it worse.
Isaac's surgery went well. The surgery lasted almost 4 hours. The surgeon made a few incisions on his left ear to smooth out any of the creases and curves, and he opened up a pocket that was made on his chest to save some cartilege for later. Isac took several hours recovering in Post-op and went home about 10PM vomitting half of the way home and then some more at home. The first 24 hours after surgery are always the worst. His main source of pain was the incision on his chest. Now his ear is starting to hurt more, although he refuses Tylenol to help it accept at bedtime. Isaac will have his followup visit on Thursday. It is had to believe almost a week has gone by, it went really fast. Isaac was still able to enjoy Christmas, and was happy with each and every present.
It's been a while since I have updated. I just wanted to let any of Isaac's friends be aware that he will be going through the final stage of his ear reconstruction on December 22nd. Isaac has been excited about his new ear. He is a bit nervous about the surgery although he is quite calm at the same time. Isaac loves Dr. Fairbanks and has complete trust in him. Isaac still tells me that he can remember spending time with Jesus, which comforts me to know that Jesus loves him, and has a special relationship with him. Isaac has stayed fairly healthy lately, despite his fragile heart. I will post more after his surgery. Until then pray that Isaac has a positive experience with this upcoming surgery. Thanks for caring enough to check on Isaac.
