We're on alert. Children's will call and say a bed is available in the PICU and we'll have to go as soon as they can pack Tater on the bus (ambulance, bus sounds cuter). Could be today or it could be next week, at any time of the day. And that's both good and bad. Good because it gets Tater one step closer to the Vent Clinic and finally going home and bad because we'll have to move to B'ham and wait there. The PICU at Children's isn't like the one here and we won't be able to stay with Tater 24/7. I am so upset about this. He will be laying in a bed in a very strange room (it's actually an open unit) with strange nurses and therapists who do not know him and will be too busy to play and kiss on him like they all do here. Not that they haven't been super busy here but they have their priorities straight (by that I mean they always find time to play with Tater). And at Children's we will have to deal with Medical Interns and Residents who are either my age or younger and c'mon, that's just not old enough. The Interns here look like they're 15 and I know it has to be worse in Birmingham.
Okay, although I'm a little wary of Children's, I know Tater will be taken care of. But there we won't have J.W., Tater's Mama Bear nurse-she will challenge anyone she thinks is messing with "her baby"; or S.I., Tater's sweet, quiet nurse who will cry with us when he's in pain; or SuperNana the Respiratory Therapist who I'm having to watch or she just might take Tater home with her; or R.M., Tater's girlfriend who will play peek-a-boo and kiss on him for so long she gets behind on her other patients; or M. who sings and dances for Tater and who you can tell he thinks is absolutely gorgeous by the way he stares at her; or A. who offered to go through her son's clothes to see if Tater could wear any of them because he's gotten so big and needs a bigger size now; or J. -RT extraordanaire who calls Tater "my man" and "brother" and who is extra nice and helpful even though he's usually running around crazybusy (J intubated Tater the night he was rushed to the PICU and gave me the best compliment on how calm I was then even though I felt like I was coming unglued) . :( And these are just the people who have taken care of Tater the most. Even the staff who've only had him here and there are so attentive and caring and take the time to eat his toes and play with his mohawk.
I know, I know. We'll get to B'ham and I'll love it there too but I'm pulling a Toser right now, sticking my lip out and pouting because I DON'T LIKE IT!!
Speaking of Toser, he's with Aunt Leeda and Nick at our house (after the weekend there with both my sisters, Wissa and Manny, Wissa's fam and Manny's friend Jane). 'Pencer was left at home in SC this time because the force that is Toser-'Pencer wore Leeda down a few weeks ago and she's a tough cookie to wear down. When she goes home we have many other aunts lined up for stints at the homestead. Toser seems to be happier there with his stuff rather than having to put his buppa and rabbit in a bag and schlepping them all over the place.
So, that's what we know for now. I'll keep you updated about B'ham/Children's.
Tuesday, February 26, 2008
Monday, February 25, 2008
Catch 22
We're waiting and waiting and waiting. We were told it may take a while to get into the Ventilator (Vent) Program at Children's. The doctors here have been playing phone tag with the doctors there and they just actually talked to each other this morning. And the update is not much of an update. Of course there is no spot open at the program and the only way we can get first priority for a spot is for Tater to be transferred to the PICU at Children's as a critical patient. Tater isn't critical at all. He's actually doing better now than he ever has.
And that, my children, is called a catch 22. Excuse me while I throw myself on the ground and thrash around: $%#^@@%$@*%$!!!!!
Okay now. Luckily the doctors here and there really like Tater and they're trying to figure out something, anything, that will work out in favor of everyone (and keep our insurance company happy).
I don't think I've mentioned that Tater has MRSA. They tested for it when they discovered Tater had an infection and we found out he has it on Friday. It's a type of staph that is resistant to some types of antibiotics but in the hospital it's EVERYWHERE and it really wasn't a question of if Tater was going to get it but when. And honestly, it's just not something anyone is worried about. He's on a local, inhaled antibiotic that usually gets rid of MRSA and they'll check again today to see if that's working. We think Tater's trying to get the most bang with our insurance's buck out of this hospital journey. Yes, journey. A hospital stay is something like a 2 weeks. A hospital journey is anything over that and we've been here 4 weeks tomorrow. Tater will have passed his 10 month and 11 month marks in the hospital. Yay Tater.
And have I told you how big this kid has gotten? He's huge! And his hair has gotten so red. I'll post a picture later.
And that, my children, is called a catch 22. Excuse me while I throw myself on the ground and thrash around: $%#^@@%$@*%$!!!!!
Okay now. Luckily the doctors here and there really like Tater and they're trying to figure out something, anything, that will work out in favor of everyone (and keep our insurance company happy).
I don't think I've mentioned that Tater has MRSA. They tested for it when they discovered Tater had an infection and we found out he has it on Friday. It's a type of staph that is resistant to some types of antibiotics but in the hospital it's EVERYWHERE and it really wasn't a question of if Tater was going to get it but when. And honestly, it's just not something anyone is worried about. He's on a local, inhaled antibiotic that usually gets rid of MRSA and they'll check again today to see if that's working. We think Tater's trying to get the most bang with our insurance's buck out of this hospital journey. Yes, journey. A hospital stay is something like a 2 weeks. A hospital journey is anything over that and we've been here 4 weeks tomorrow. Tater will have passed his 10 month and 11 month marks in the hospital. Yay Tater.
And have I told you how big this kid has gotten? He's huge! And his hair has gotten so red. I'll post a picture later.
Saturday, February 23, 2008
Today Matters
If you get a chance and are interested in the emotions involved in having a “special needs” (or as I say, constant needs) child, a good book to read is A Different Kind of Perfect: Writings by Parents on Raising a Child With Special Needs. This is a wonderful book that explains what I go through at any minute of any day. I love this book because it lets me know that all the crazy emotions I feel are normal and even though I know none of these people, at least I’m not alone.
Taking care of Tater is very isolating. Of course I have Mr. Awesome and my family and friends and they’re all wonderful and supportive but no one can fully understand exactly what I go through on a daily basis. I have to balance taking care of Tater with making sure the rest of us has a normal life and that’s hard. A normal life for us is school, play dates and church which are full of germs that Tater can’t have. A normal life for us is travelling to anywhere and everywhere but we still haven’t figured out how to make that work logistically with Tater and the equipment he requires. People have all kinds of kind-hearted and well-meaning suggestions on how to do this or do that and what type of help we need but those suggestions make me second guess what we’re doing even more than I already do (and honestly, make me feel as if they don’t think I’m doing “good enough”). I have to look at the big picture and how each little thing we do will affect something down the road. Please don't get me wrong. I appreciate all the help we get more than anything in the world. It's my crazy mind that makes me feel overwhelmed sometimes.
So Tater’s life takes over the rest of our lives; Mr. Awesome and I try very hard to make sure our family never resents that because Tater is, after all, worth it. And I think we are succeeding somewhat because Toser seems well adjusted to us and the fact his little heart is so huge must mean we’re doing something right, but it is difficult not to second guess ourselves at every turn.
One of the main reasons we decided on the trach for Tater is so we can lead a relatively normal life and coming to terms with that was very hard. How can you say, “Yes. Please put a hole in my child’s throat and insert an artificial breathing port so I will be able to take him to the grocery store and to pick his brother up from school.”? The other options available to help Tater breathe would mean we would be at home ALL the time and those just weren’t much of an option in my mind because regardless of Tater’s conditions, we have to live life and life is lived outside his bedroom.
No one knows how to act around us and we (especially I) are not good at giving signals at how they should. I often feel that people want to see me react according to how they’re feeling. If they’re emotional and worried, I sense they want to see me crying and fretful too. I don’t know why. I mean I do, but that’s a lot of pressure on me. I don’t have the luxury of crying every time I talk about Tater because I would be crying every second of every day. I can not have a breakdown and “just let it all out” because “it” is never ending. I can't constantly reassure people that everything is going to be okay because I don't know that it is.
Tater, just like every other kid in the world, did not come with a guidebook. We don’t know what tomorrow holds for him. We don’t talk about that tomorrow because today holds enough for him and us. I want to give both my boys the most they can get out of each day because any of us might not be here tomorrow. Just because Tater has a bunch of problems doesn’t mean we’re immune to all the other crappy things that could happen to us or anyone else. Today is what matters. I don’t think I would know that to the extent that I do if it weren’t for Tater and this great adventure he has created for us.
I’m turning comments off on this post because I don’t want anyone to feel like they need to think any of this applies directly to them or to apologize. Everything I wrote about is a generalization of all things and not inspired by any one thing, event or person. There is no right way to deal with any of this. How you’re dealing with it is what’s right for you. Embrace that.
Taking care of Tater is very isolating. Of course I have Mr. Awesome and my family and friends and they’re all wonderful and supportive but no one can fully understand exactly what I go through on a daily basis. I have to balance taking care of Tater with making sure the rest of us has a normal life and that’s hard. A normal life for us is school, play dates and church which are full of germs that Tater can’t have. A normal life for us is travelling to anywhere and everywhere but we still haven’t figured out how to make that work logistically with Tater and the equipment he requires. People have all kinds of kind-hearted and well-meaning suggestions on how to do this or do that and what type of help we need but those suggestions make me second guess what we’re doing even more than I already do (and honestly, make me feel as if they don’t think I’m doing “good enough”). I have to look at the big picture and how each little thing we do will affect something down the road. Please don't get me wrong. I appreciate all the help we get more than anything in the world. It's my crazy mind that makes me feel overwhelmed sometimes.
So Tater’s life takes over the rest of our lives; Mr. Awesome and I try very hard to make sure our family never resents that because Tater is, after all, worth it. And I think we are succeeding somewhat because Toser seems well adjusted to us and the fact his little heart is so huge must mean we’re doing something right, but it is difficult not to second guess ourselves at every turn.
One of the main reasons we decided on the trach for Tater is so we can lead a relatively normal life and coming to terms with that was very hard. How can you say, “Yes. Please put a hole in my child’s throat and insert an artificial breathing port so I will be able to take him to the grocery store and to pick his brother up from school.”? The other options available to help Tater breathe would mean we would be at home ALL the time and those just weren’t much of an option in my mind because regardless of Tater’s conditions, we have to live life and life is lived outside his bedroom.
No one knows how to act around us and we (especially I) are not good at giving signals at how they should. I often feel that people want to see me react according to how they’re feeling. If they’re emotional and worried, I sense they want to see me crying and fretful too. I don’t know why. I mean I do, but that’s a lot of pressure on me. I don’t have the luxury of crying every time I talk about Tater because I would be crying every second of every day. I can not have a breakdown and “just let it all out” because “it” is never ending. I can't constantly reassure people that everything is going to be okay because I don't know that it is.
Tater, just like every other kid in the world, did not come with a guidebook. We don’t know what tomorrow holds for him. We don’t talk about that tomorrow because today holds enough for him and us. I want to give both my boys the most they can get out of each day because any of us might not be here tomorrow. Just because Tater has a bunch of problems doesn’t mean we’re immune to all the other crappy things that could happen to us or anyone else. Today is what matters. I don’t think I would know that to the extent that I do if it weren’t for Tater and this great adventure he has created for us.
I’m turning comments off on this post because I don’t want anyone to feel like they need to think any of this applies directly to them or to apologize. Everything I wrote about is a generalization of all things and not inspired by any one thing, event or person. There is no right way to deal with any of this. How you’re dealing with it is what’s right for you. Embrace that.
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