It's 1:40 Easter morning and once again I am at the hospital with Ami. Josh said something earlier today that really made me think; Ami has been sick for half of his life. He doesn't know what it's like to breathe like we do. He doesn't know what it's like to not have to take some sort of medicine everyday. He doesn't know what it's like to not go to the doctor at least once a month.
Someone told me that being married is the hardest thing I will ever do. I don't know about that. It's pretty hard watching people stick your son with needles. It's pretty hard watching your son be put into a restraining device so he can have his 5th chest x-ray. It's pretty hard watching your son literally pass out and go full body limp in your arms so he can have a CT scan. Most of all it's pretty hard being told that well your son doesn't have this terminal disease but he might have this one, lets run some test. I'm to the point that I don't want to know what they are testing him for, so that way I can't google it. The worst part is that he takes it so well. All the nurses keep saying "Oh, he's doing so good!", or "most babies really fight us on this." He should fight; he shouldn't be used to all of this. He is such a good baby. He is happy, he likes to play by himself, he's funny, and sweet. He super smart, almost too smart.
The worst part there is nothing I can do about any of this. I can't make it better. I can't protect him from it.
Since Friday he has had two chest x-rays, at least 6 vials of blood drawn, a finger prick, sedation, and a CT scan. Most of the tests had to be sent out so we won't get results on them for a while. On Tuesday he will be having a scope put into his lungs. Later in the week we maybe heading to St. Louis for a lung biopsy.
I am ready for some answers. I am ready to go home. I am ready to have a healthy baby.
Please pray for him. He needs it so badly, because nothing else is working.
Hurray I'm One
Sunday, April 24, 2011
Saturday, April 16, 2011
Long Time No Blog
Good grief it's been 2 months since my last posting. It has been a very busy 2 months. We went back to the doctor for the okay to come to daycare and she was very worried about his slow weight gain and he had gotten pneumonia again. The day we went back to the doctor, he had pneumonia again, his blood oxygen level was at 85, and he hadn't gained hardly any weight. He got a breathing treatment there, a chest x-ray, 4 nose swabs to test for different things, and 3 vials of blood taken to test for different things. He got tested for Cystic Fibrosis, genetically. For that test we also had to go to the hospital the following Monday to have a sweet chloride test done. We also took him to a pediatric cardiologist to look at his heart. We spent 4 hours at the doctors office that day. Also on that day we went to the health department and he got his 6 month shots and a flu shot. Thank god all of his tests came back normal. Then came the vomiting. He vomited every morning with his morning bottle for a week straight. So we went back to the doctor yet again. This time she had an upper GI test done. In case you were wondering yes not letting a 7 month old eat for several hours is horrible. The doctor also suggested not to give him anymore than 2 oz. of bottle in the morning to see if that would help with the vomiting. It has helped a lot. She wanted us to come back in a couple of weeks later for a weight check and "other things." We went back and yet again did not gain any weight. So came another set of tests. This time he got tested for allergies and to see if he has an immune deficiency. That was horrible. They stuck him 5 times and could not get the blood to come out. It would start to flow and then stop, every time. We were there for an hour. So they had us come back on the following Monday to try again. This time it went much better. One stick and it was done. Once again all the tests came back normal. So this is where we stand now. We have a daily sheet that we fill out on him everyday. How many diapers he has and what are they. How many bottles he has and how much he drinks. How much food he eats. He has at least 2 breathing treatments everyday, some days he could have up to 5 if he is coughing or grunting when he breaths. And the new formula... Nutramigen. The most expensive formula you can get. Oh and we have to make it stronger then normal so it has more calories in it then a normally made bottle would. He has also be referred to a pulmonologist.
On the brighter side he can sit up on his own. He is so ready to move around, once he figures out how. He has 2 teeth on the bottom, and I think more are trying to come in. He started to show a tendency to be left hand dominate. So we started holding his left hand down so he would use his right one more, and now he uses them pretty much equally. He is on all baby foods and loves all of it. He doesn't really care for bananas but he'll eat them. He loves to drink water out of a glass. His little teeth make a little clinking sound when he drinks. It's super cute. He is starting to eat puffs, crackers, and mum mums, which are rice rusks that are easy for him to hold and chew on. I got my first open mouth kiss the other day. Last weekend he spent the night and all day Sunday with my parents will we went to Hot Springs. On Monday when I picked him up from Nana's he was still so happy to see me, that he grabbed my face and open mouth kissed my chin. It was the best kiss I ever had. He is growing up so much. He loves books and knows how to turn the pages. He loves Elmo and his Rainbow Rob book. He likes to go outside and see everything, and he still wants to touch everything. By far I would say his all time favorite thing to do is play in water. He knows what a sink is no matter where you are. He pushes you out of the way so he can see the sink. He's gonna be a little fish. He is super long and very skinny. He can wear 6-9 month onesies because they fit him long ways but the shorts we bought him at Walmart are 0-3 month and they fit great. He is still in a size 1 diaper, but in a size 3 shoe. No pants fit him because if they are long enough you could fit another one of him in them to fill them out around the waist. He is super sweet and loves to give hugs. He hasn't so much started with the separation anxiety stage but strangers will sometimes scare him.
We are going today to have his pictures made. I hope he will be in a good mood and not freak out. We are also going to try to go and have his picture taken with the Easter Bunny on Monday. I have a feeling that is not going to work out so well since when he sees my dad with his hat and glasses on he freaks out.
Like I said it's been a very busy 2 months. Hopefully health will find us this spring and summer. Oh I am also beginning to plot his first birthday! It's gonna be so much fun!
On the brighter side he can sit up on his own. He is so ready to move around, once he figures out how. He has 2 teeth on the bottom, and I think more are trying to come in. He started to show a tendency to be left hand dominate. So we started holding his left hand down so he would use his right one more, and now he uses them pretty much equally. He is on all baby foods and loves all of it. He doesn't really care for bananas but he'll eat them. He loves to drink water out of a glass. His little teeth make a little clinking sound when he drinks. It's super cute. He is starting to eat puffs, crackers, and mum mums, which are rice rusks that are easy for him to hold and chew on. I got my first open mouth kiss the other day. Last weekend he spent the night and all day Sunday with my parents will we went to Hot Springs. On Monday when I picked him up from Nana's he was still so happy to see me, that he grabbed my face and open mouth kissed my chin. It was the best kiss I ever had. He is growing up so much. He loves books and knows how to turn the pages. He loves Elmo and his Rainbow Rob book. He likes to go outside and see everything, and he still wants to touch everything. By far I would say his all time favorite thing to do is play in water. He knows what a sink is no matter where you are. He pushes you out of the way so he can see the sink. He's gonna be a little fish. He is super long and very skinny. He can wear 6-9 month onesies because they fit him long ways but the shorts we bought him at Walmart are 0-3 month and they fit great. He is still in a size 1 diaper, but in a size 3 shoe. No pants fit him because if they are long enough you could fit another one of him in them to fill them out around the waist. He is super sweet and loves to give hugs. He hasn't so much started with the separation anxiety stage but strangers will sometimes scare him.
We are going today to have his pictures made. I hope he will be in a good mood and not freak out. We are also going to try to go and have his picture taken with the Easter Bunny on Monday. I have a feeling that is not going to work out so well since when he sees my dad with his hat and glasses on he freaks out.
Like I said it's been a very busy 2 months. Hopefully health will find us this spring and summer. Oh I am also beginning to plot his first birthday! It's gonna be so much fun!
Subscribe to:
Posts (Atom)