MOM AND DAD:
So I have not really been up to much. As I said I have been working a lot and am now not working. I can't complain though I really get to spend a lot of time focusing on the kids and I have been doing that.
Nate has been working like crazy. With the snow that Addison wished for on her birthday it meant daddy had to work 12 hour shifts for over a week. He was extremely tired, the kids really wanted to see him, and we 3 were going crazy being stuck here at home for all that time. Now that is over and we are headed back to more of a normal.
ADDISON:
Addison turned 4!!! Yes I said 4. Where in the world did the last 4 years go? She is getting closer to school than being a baby which makes me super sad. I am terrified of her going to school. She however is very excited about it.
She has been doing gymnastics every week during the day. She LOVES it. Greyson doesn't do too bad sitting and watching her do her class. She has learned a lot and is making a lot of new friends. She wants to do dance as well. She is signed up for a dance class through the parks and rec department. It is only a 3 week class and she has already missed one because she was sick last week. Tonight is her first class. She is super excited to go and I am glad she is going to try this one out before the money is spent for her to do it for 8 months. I am REALLY looking forward to going to 2 concerts and watching her preform though.
As for her medical status she had to have her renal reflux test done again. We decided to do it here rather than in STL because her urologist unexpectedly passed away and we were able to get in during a time that Greyson may be in the hospital so we don't have to make another trip up there. We didn't want to have to do the test while he was hospitalized so we went ahead and did the test here. According to the doctor who did it this time he says she is a grade 1 which is way better than the grade 2-3 that she has been before. It may be getting better but we won't know until the STL doctors review everything and decide what they want to do. This is both good news and bad news. It is great that it may be getting better. However, it is bad because if we do nothing and just keep her on the medication then she will have to have that test again. It is extremely traumatizing on both her and us. It is very difficult to hold a child down when someone puts a catheter in. I had 2 catheters when I had the kids and they were VERY painful, and I had an epidural when I had mine. I feel very bad for her and I was hoping for either no change or total correction. I didn't exactly get my wish ;(.
So on to my dear Greyson. Let me start off by saying he is CRAZY! The boy goes and goes and goes...then stops for a few seconds to rest and then he is off again. I am sure he is acts like a normal boy but he is WAY different then Addison ever was. He barrels into things full blast with no thought of what might happen. Addison was always very calm and would think things through before doing them...not him!
Greyson has been pretty stable and not very sick this winter. A few colds, which is way harder on a heart kid then puking sick would be. His sats have been fairly stable unless he has been sick and then of course they have dropped quiet a bit. The problem with a cold is that it does not make him feel sick enough to just lay around. He is congested which drops his saturation level and then add to that the part where he doesn't want to lay still and his sats were in the 60's for over a week.
He has his pre-fontan heart cath on March 25th. In just 13 days! I am getting pretty terrified. I mean like I loose sleep over it and have a very hard time falling asleep. During the day I am usually too busy to stop and think about what all is exactly going on but at night, when I lay down to go to sleep I remember all the things that are coming up and the things I want to do before then. My mind wanders everywhere. I would love to just shut it off but I can't. I am usually awake 2-3 hours past when we go to bed, sometimes longer.
Anyway enough of my problems back to what is going on with Greyson. He has his pre-fontan heart cath scheduled for March 25th. He CAN NOT get sick between now and then. If he does the cath is off and the surgery will be later too. He is in total lock down. If he leaves the house it is to go to grandparents for dinner or to ride in the car while one of us goes in somewhere. Addison is going a few places with me during this 2+ week hermit period. She gets to go to dance class because it is in the evenings and one of us can stay home with Greyson while the other takes her to class. I do not do well being trapped in the house ALL the time. The darn weather hasn't been warm enough for us to go do anything outside either.
So in 13 days he has his heart cath. At the heart cath he will go in and they will look and see if everything is ready for the fontan surgery and if not they will take care of anything they can then. At his last cath he had that huge collateral vessel and we are thinking he will likely have another of those at least. As before if they do anything in there he will have to stay over night and we are planning on that. After his cath they will schedule his surgery. We will know the date and all the information before we leave the hospital. I am both excited and scared for the surgery. I am hopeful that they will do his surgery on or before April 8th. Call me crazy but it just occurred to me last night that Greyson was 4.5 months and 1 day when he had his Glenn surgery via emergency situation. He will be 2.5 years and 1 day on April 8th. Yes this date has me a little crazy. He does not like to do anything medical on a plan. He made them do the cath this summer since he was not supposed to have to have one until right before his surgery. Apparently the boy doesn't like schedules. Or maybe he just got my impatience. Either way its on his time frame ;)
I am packing stuff for us for a week in the hospital when we go up for the heart cath. If it stays in the suit case a week or so then great but it would not surprise me if he ends up having surgery the same week as his heart cath. I don't want to get up there and not be prepared.
I think it is obvious how much this is weighing on me here lately. This surgery is bitter sweet. I want it done so we can move on past all of this and have a semi-normal life but I am not so naive to forget the fact that there are kids who don't make it through this surgery. Regardless he will be in a lot of pain and that is one of the hardest parts of being a parent whether your child has a major illness or not. To your children you are the protector, the one who is supposed to be able to keep them safe, to kiss a boo boo and make the pain go away. I don't have enough kisses for this one. I have to take him in there and hand him over to a situation that could take his life and will most definitely put him in a great amount of pain. Watching your child in that amount of pain and knowing there is not a darn thing you can do about it is like being stabbed over and over again...it hurts! I am ready for all of this to be done. And I know it will be soon but for now it SUCKS!
So some times I have days where "it just sucks" to have a son that has to go through all of this....Today is one of those days and I don't think they are going away very soon.
I will try to update more often. I am shooting for weekly but obviously I will update after the cath. I guess if I am not posting its a good sign that (1) there is nothing going on medically and (2) we are having way too much fun to sit around and type on the computer.
No comments:
Post a Comment