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.
Thursday, February 21, 2008
Stinky Neck
Tater's infection seems to have come from the central line. We're still waiting on "official" word on this but that seems to be it. The central line is gone so hopefully the infection is too. Tater also has (had?) a type of bacteria around his trach that is common in patients on ventilators and in ICUs. It gives off a very distinct odor that is sweet smelling and stinky- like a bad case of neck cheese. He smells a lot better now that the trach and the trach ties have been changed (they wait a week to do that so the trach area heals sufficiently). In all likelihood Tater will get this again with having the trach so I’m glad this happened in the hospital-I now know what that smell is. Bleh.
Coco stayed with Tater yesterday while I took Toser home for some Mommy-Toser time. And Wissa stayed with Tater last night so Mr. Awesome and I were actually both at home with Toser at the same time. We took a walk, took him to dinner, wrestled on the bed and just had so much fun with him. Technically, Wissa isn’t allowed to stay here (Coco can because she’s a grandmother and Wissa would make that claim if she didn’t look younger than me). But P.A.M. was here last night and was able to teach Wissa how to suction the trach and show her a few things, so it was an official learning visit. Anyone who keeps Tater will have to know all this stuff and it’s nice to have them learn from the pros instead of us. :) And it was so very nice to be able to spend time with Toser and not have to run back to the hospital. Thank you Coco, Wissa and P.A.M.- we appreciate this more than you know.
And the latest Tater news: he's going to need some type of ventilator support when he goes home. The setting he needs is pretty low as far as ventilator settings go but that little bit is what's helping him the most right now. And in order for him to go home on a ventilator, Mr. Awesome and I have to be trained in home ventilation use. We'll have to go to Children's Hospital in Birmingham and go through their home ventilation program which lasts anywhere from 2- to 8-weeks. Our understanding is that we'll stay in a dorm-type setting and pretty much be on our own after instruction, with help immediately there if we need it (that could be totally wrong but is what we've gathered). Hopefully we'll be able to wean him off the ventilator settings in the future but even then any other type of machine help will have to come through tweaked ventilator settings- the only way to do CPAP and BiPAP for a trach are through a ventilator.
So, off to B'ham we go. When? We don't know. Of course there's a waiting list for the program and no one can say how long we'll have to wait to get in. Tater will have to stay in the PICU here until a spot opens up at Children’s and then will be transferred by ambulance there. We asked about getting in to another program at either Vandy or Emory but we'll have first priority with Children's being in-state and we already have a relationship with the director of the home ventilation program there since he's Tater's sleep study doctor. We'll keep you updated and let you know when we're going.
Mr. Awesome’s Aunt Gigi stopped by on her way through town today and took me and Toser to lunch after seeing Tater. Toser LOVES his Gigi and couldn’t wait to show her the Hospital tram and how he can open all the doors on the way there. I love how he shows off by pushing this button and waving his hand over that sensor. He even knows which tram is the express one and which one stops at the buildings between the childrens’ and main hospitals, even though they switch tracks constantly. All I can say is that he has engineer blood in his veins-literally and figuratively.
Coco stayed with Tater yesterday while I took Toser home for some Mommy-Toser time. And Wissa stayed with Tater last night so Mr. Awesome and I were actually both at home with Toser at the same time. We took a walk, took him to dinner, wrestled on the bed and just had so much fun with him. Technically, Wissa isn’t allowed to stay here (Coco can because she’s a grandmother and Wissa would make that claim if she didn’t look younger than me). But P.A.M. was here last night and was able to teach Wissa how to suction the trach and show her a few things, so it was an official learning visit. Anyone who keeps Tater will have to know all this stuff and it’s nice to have them learn from the pros instead of us. :) And it was so very nice to be able to spend time with Toser and not have to run back to the hospital. Thank you Coco, Wissa and P.A.M.- we appreciate this more than you know.
And the latest Tater news: he's going to need some type of ventilator support when he goes home. The setting he needs is pretty low as far as ventilator settings go but that little bit is what's helping him the most right now. And in order for him to go home on a ventilator, Mr. Awesome and I have to be trained in home ventilation use. We'll have to go to Children's Hospital in Birmingham and go through their home ventilation program which lasts anywhere from 2- to 8-weeks. Our understanding is that we'll stay in a dorm-type setting and pretty much be on our own after instruction, with help immediately there if we need it (that could be totally wrong but is what we've gathered). Hopefully we'll be able to wean him off the ventilator settings in the future but even then any other type of machine help will have to come through tweaked ventilator settings- the only way to do CPAP and BiPAP for a trach are through a ventilator.
So, off to B'ham we go. When? We don't know. Of course there's a waiting list for the program and no one can say how long we'll have to wait to get in. Tater will have to stay in the PICU here until a spot opens up at Children’s and then will be transferred by ambulance there. We asked about getting in to another program at either Vandy or Emory but we'll have first priority with Children's being in-state and we already have a relationship with the director of the home ventilation program there since he's Tater's sleep study doctor. We'll keep you updated and let you know when we're going.
Mr. Awesome’s Aunt Gigi stopped by on her way through town today and took me and Toser to lunch after seeing Tater. Toser LOVES his Gigi and couldn’t wait to show her the Hospital tram and how he can open all the doors on the way there. I love how he shows off by pushing this button and waving his hand over that sensor. He even knows which tram is the express one and which one stops at the buildings between the childrens’ and main hospitals, even though they switch tracks constantly. All I can say is that he has engineer blood in his veins-literally and figuratively.
Tuesday, February 19, 2008
"Hicky" Germs
That's what Toser calls them. And it seems Tater has picked up a hospital "hicky" germ. :( He's fighting off an infection. The doctor's aren't sure what it is yet but it's a doozy. Tater has been lethargic and sleepy and not himself at all. He’s having to work really hard at breathing. It's been sad to watch him just lay in bed and not try to pull all of the tubes and wires attached to him. He has periods of feeling better and is doing well right now but after the Tylenol with Codeine wears off he'll be pitiful again.
So this has put him at square one for getting used to breathing with the trach. He did really well with a breathing trial off the ventilator yesterday but they don't want to do any more trials until they can figure out what's up with whatever he's fighting off. And the infection could be any number of things. He's had a central line they've been using for blood draws and as a medicine and IV fluid port, but this one was supposed to be temporary and he's had it for 3 weeks. It's one possibility as a source of infection so they'll pull it today. They had to start a peripheral IV as back-up to this and had a difficult time starting one-they ended up having to put it in his head. It looks really sad there but at least he's able to move his arms and legs. The last 2 IVs he had in his feet he kicked out within hours. (and another example of how awesome Tater's nurses are: they worked so hard at getting the IV started, were really patient and caring and we all had a good cry with Tater when they were done-they really love this kid and it kills them to have to do anything like that to him. Thank you S and K!).
We’ll be in a holding pattern until they can figure out the infection.
Toser got to see Tater again last night. Not the emotional event it was last time and Toser seemed a little more weirded out about it all. He’s at Coco and Papa’s for a couple of nights then Wissa will take him to our house so he can chill at home. I’m still amazed at how well he’s taken all of this. He’s such a great boy and has been very gracious about everything. He’s taking it all in stride and now has a huge Little Einstein's Rocket because I'm a sucker with guilt issues. I know we’ll have a lot to deal with when we finally get home but he’s dealing now and that’s good. We are so proud of you and love you very much, Toser!
So this has put him at square one for getting used to breathing with the trach. He did really well with a breathing trial off the ventilator yesterday but they don't want to do any more trials until they can figure out what's up with whatever he's fighting off. And the infection could be any number of things. He's had a central line they've been using for blood draws and as a medicine and IV fluid port, but this one was supposed to be temporary and he's had it for 3 weeks. It's one possibility as a source of infection so they'll pull it today. They had to start a peripheral IV as back-up to this and had a difficult time starting one-they ended up having to put it in his head. It looks really sad there but at least he's able to move his arms and legs. The last 2 IVs he had in his feet he kicked out within hours. (and another example of how awesome Tater's nurses are: they worked so hard at getting the IV started, were really patient and caring and we all had a good cry with Tater when they were done-they really love this kid and it kills them to have to do anything like that to him. Thank you S and K!).
We’ll be in a holding pattern until they can figure out the infection.
Toser got to see Tater again last night. Not the emotional event it was last time and Toser seemed a little more weirded out about it all. He’s at Coco and Papa’s for a couple of nights then Wissa will take him to our house so he can chill at home. I’m still amazed at how well he’s taken all of this. He’s such a great boy and has been very gracious about everything. He’s taking it all in stride and now has a huge Little Einstein's Rocket because I'm a sucker with guilt issues. I know we’ll have a lot to deal with when we finally get home but he’s dealing now and that’s good. We are so proud of you and love you very much, Toser!
Saturday, February 16, 2008
Brother Reunion-and-Ode to the PICU
Toser and Tater got to see each other for the first time in 2.5 weeks last night! Toser has been asking about Tater-breaking our hearts-and yesterday we were given the all clear to bring Toser in. We tried to prep Toser with an explanation of the trach but he was all, “So?” I think the kid doesn’t know what normal is so nothing phases him. Anyway, we brought Toser in and Tater was so overwhelmed with emotion he started crying. I can’t even describe how was sweet it all was. He really has missed his big brother and I don’t think it hit him until that moment. I know it seems a little farfetched for a 10 month old to be aware of that but Tater is one sharp cookie and I have a few witnesses to the scene (only the 2 nurses and the respiratory therapist who were in here kissing on Tater, and Coco and Mr. Awesome).
Tater’s still doing well. He’s been going back and forth between BiPap and straight Oxygen. It will probably be a few days before we know exactly what he’ll need at home but if he’s on BiPap some of the time, that’s doable to us. It’s just so good to see his face without anything on it. And I can still get jaw sugar-all is well. (The trach is really good for Tater-right now he has a blanket pulled over his face, sleeping. When I just saw that my heart dropped in my chest and then I remembered, “Oh yeah, he isn’t breathing through his nose that is totally covered by a blanket.:)
So, I’ve talked about the PICU staff before, but let me tell you how really awesome they are. They are all the most amazing people. They know we struggled with the trach decision and have all been very encouraging with the hand-holding and mopping of tears thing. The Respiratory Therapists all have told us Tater’s quality of life will improve and that we’ve done the right thing. The nurses are so supportive and funny and just plain nice people. We’ve been here long enough that we feel like we KNOW these people and we love all of them. Of course, everyone assigned to Tater is our favorite and that’s only easy to say because we’ve had pretty much the same rotation of nurses and therapists. They’re all so warm and caring and great and I can not say enough about them. If I happen to (ahem) gobacktoschooltobecomeanurse, it’s because of these people (I see some of you laughing-hush).
Tater’s most consistent night nurse (okay, our true favorite-Hi P.A.M.!) brought me chocolate covered strawberries for Valentine’s. How could I not love this woman? Sure, she accuses me of “sucking up” by bringing in coffee and goodies for everyone occasionally, but what else is there to do? :) She’s ended up being a great friend and coach and neither Mr. Awesome nor I would not have made it through the last few weeks without her. Mr. Awesome has been spending most nights with Tater and I know P.A.M.!’s calm and patient teaching have been good for him. She even taught us how to suction Tater’s trach last night and never once was impatient-although it must have been excruciating for her to watch us, we were so s-l-o-w…
Everyone in the PICU works so hard and gets little to none glory. And they have been slammed. I would say that the unit has been full 90% of the time we’ve been here. A lot of the patients get rushed to the PICU, ala Tater, so they’re constantly stressed and running around. They don’t complain, always have smiles on their faces and have been great teachers to us. No one acts like we ever get on their nerves although I’m sure we have. I truly love these people. I guess part of it is that they really love Tater. It’s not unusual for me to come in and see 2 nurses and a therapist standing over Tater’s crib all trying to get him to smile. They know how manipulative he can be-yet still fall for his lip pucker and fake cry. Oh, how he eats it up! We will definitely have to reprogram him when we get home. Still, I wouldn’t want it any other way. To the PICU staff:
We Y you!
Tater’s still doing well. He’s been going back and forth between BiPap and straight Oxygen. It will probably be a few days before we know exactly what he’ll need at home but if he’s on BiPap some of the time, that’s doable to us. It’s just so good to see his face without anything on it. And I can still get jaw sugar-all is well. (The trach is really good for Tater-right now he has a blanket pulled over his face, sleeping. When I just saw that my heart dropped in my chest and then I remembered, “Oh yeah, he isn’t breathing through his nose that is totally covered by a blanket.:)
So, I’ve talked about the PICU staff before, but let me tell you how really awesome they are. They are all the most amazing people. They know we struggled with the trach decision and have all been very encouraging with the hand-holding and mopping of tears thing. The Respiratory Therapists all have told us Tater’s quality of life will improve and that we’ve done the right thing. The nurses are so supportive and funny and just plain nice people. We’ve been here long enough that we feel like we KNOW these people and we love all of them. Of course, everyone assigned to Tater is our favorite and that’s only easy to say because we’ve had pretty much the same rotation of nurses and therapists. They’re all so warm and caring and great and I can not say enough about them. If I happen to (ahem) gobacktoschooltobecomeanurse, it’s because of these people (I see some of you laughing-hush).
Tater’s most consistent night nurse (okay, our true favorite-Hi P.A.M.!) brought me chocolate covered strawberries for Valentine’s. How could I not love this woman? Sure, she accuses me of “sucking up” by bringing in coffee and goodies for everyone occasionally, but what else is there to do? :) She’s ended up being a great friend and coach and neither Mr. Awesome nor I would not have made it through the last few weeks without her. Mr. Awesome has been spending most nights with Tater and I know P.A.M.!’s calm and patient teaching have been good for him. She even taught us how to suction Tater’s trach last night and never once was impatient-although it must have been excruciating for her to watch us, we were so s-l-o-w…
Everyone in the PICU works so hard and gets little to none glory. And they have been slammed. I would say that the unit has been full 90% of the time we’ve been here. A lot of the patients get rushed to the PICU, ala Tater, so they’re constantly stressed and running around. They don’t complain, always have smiles on their faces and have been great teachers to us. No one acts like we ever get on their nerves although I’m sure we have. I truly love these people. I guess part of it is that they really love Tater. It’s not unusual for me to come in and see 2 nurses and a therapist standing over Tater’s crib all trying to get him to smile. They know how manipulative he can be-yet still fall for his lip pucker and fake cry. Oh, how he eats it up! We will definitely have to reprogram him when we get home. Still, I wouldn’t want it any other way. To the PICU staff:
We Y you!
Thursday, February 14, 2008
Amazing
That is the one word that describes our Tater. The surgeon moved Tater's surgery to this morning. Around 9:00 am things started rolling and they had him back to the Operating Room by 10:00. It was a 30 minute procedure and the surgeon came out right afterward to tell us everything went really well. He told us to expect Tater to be in Recovery for 45 mins-1 hour and then they would move him to the PICU. Well, they called us 30 minutes after the surgeon left and said to meet them in the PICU. We got there before they did and when they rolled Tater in he was awake and looking around, I 'm sure wondering what the fuss was all about. He didn't have to be ventilated, he's only on Oxygen (for the moment) and we've gotten a lot of smiles (see picture above) and some tongue clicks (which the nurses are impressed with-apparently it takes some talent to do that so soon after a tracheotomy-we wouldn't expect any less from the Tater). And of course he already had to have his No-No's (arm restraints) put on him to keep him from pulling on everything because he's a booger like that. He's sleeping now and is doing really well. He is so good at dealing with all this and is still his wonderful little self. Yeah Tater!!!!!
Wednesday, February 13, 2008
Tracheotomy
Tater is scheduled for his tracheotomy tomorrow afternoon (Thursday, the 14th). He is doing great and that has made the decision to get the trache that much harder. As well as he is breathing with only oxygen, when he gets sick again we're going to be right back where we were 2 weeks ago. Everything he goes through takes more and more out of him and he has no reserves. Now even the smallest cold will put him back in the PICU. If Tater has the trache we will be able to suction his lungs and hopefully avoid them collapsing because he has a mucous plug. And even if Tater were to have to come back to the hospital then they won't have to intubate him for a ventilator-they can just hook up the tubing straight to the trache.
The doctors, while encouraging, have really left this decision up to us. There’s no definitive way to determine if this will solve all his breathing problems and he could very well still end up on constant ventilation at home. I spoke with Dr. Mama for a good while last night and she assured me that whatever decision we make, it doesn’t mean he won’t end up on ventilation anyway. We may get there sooner with a trache but the journey to ventilation will be much more hellish without one. With trache ventilation Tater won’t have anything attached to his face, he’ll be more mobile and we can have a semi-normal routine. He’s miserable on this BiPap machine because it has these huge nasal prongs that push his nose up and makes his nose so sore and he can’t go anywhere other than the 4 feet the BiPap tubing allows. So if we can make his life easier and more comfortable, then we’ll do it.
We're confident this is the right thing for Tater. But we're also scared because this IS surgery. It will only last 30 minutes but he will have to be under general anesthesia and he is at risk for a rare, but serious, complication of anesthesia (called malignant hyperthermia) due to his underlying muscle condition/hypotonia. The surgeon and anesthesia team know this and will take precautions and not use certain drugs, but it’s still very scary for us to send Tater to surgery knowing there are extra risks involved. I met with the surgeon who will perform the tracheotomy yesterday and was impressed (he’s actually an pediatric ENT). And Dr. Mama said he’s by far the best ENT she’s ever met and she’s been a few places (plus we trust her implicitly). So while we’re good with all this and know it’s the right thing, we’re still scared and worried and can use all the prayers and positive energy you have.
The doctors, while encouraging, have really left this decision up to us. There’s no definitive way to determine if this will solve all his breathing problems and he could very well still end up on constant ventilation at home. I spoke with Dr. Mama for a good while last night and she assured me that whatever decision we make, it doesn’t mean he won’t end up on ventilation anyway. We may get there sooner with a trache but the journey to ventilation will be much more hellish without one. With trache ventilation Tater won’t have anything attached to his face, he’ll be more mobile and we can have a semi-normal routine. He’s miserable on this BiPap machine because it has these huge nasal prongs that push his nose up and makes his nose so sore and he can’t go anywhere other than the 4 feet the BiPap tubing allows. So if we can make his life easier and more comfortable, then we’ll do it.
We're confident this is the right thing for Tater. But we're also scared because this IS surgery. It will only last 30 minutes but he will have to be under general anesthesia and he is at risk for a rare, but serious, complication of anesthesia (called malignant hyperthermia) due to his underlying muscle condition/hypotonia. The surgeon and anesthesia team know this and will take precautions and not use certain drugs, but it’s still very scary for us to send Tater to surgery knowing there are extra risks involved. I met with the surgeon who will perform the tracheotomy yesterday and was impressed (he’s actually an pediatric ENT). And Dr. Mama said he’s by far the best ENT she’s ever met and she’s been a few places (plus we trust her implicitly). So while we’re good with all this and know it’s the right thing, we’re still scared and worried and can use all the prayers and positive energy you have.
Tuesday, February 12, 2008
All the comforts of home
Okay, now that Tater is doing a little better (see previous post from today) and I have nothing better to do than sit around and gain weight by eating the goodies people have been bringing us, I want to share with you something that is very fascinating to me.
In the picture above... what do you think is behind the doors:
a) medical supplies?
b) extra linen?
c) a toilet?
If you chose "c," then you are correct. It's a patient toilet. I guess you would only use it if you were desperate (we've never used it-I swear), but I'm fascinated with it. The big silver button is the flush. Isn't in ingenious?! I mean, Europeans have their toilet/shower combos so why can't Americans have sink/toilet combos? Think of all the space we could save if we had these in our homes.
Yes, I realize this stint in the hospital may have warped my brain a little but you have to admit how funny this is.
He's back, Baby!!
Tater has done so well the last couple of days. Still needs a lot of help breathing efficiently but is doing well regardless. They were able to take him off the BiPap this morning for an hour and a half and I got to hold him for the 1st time in 2 weeks!!! He was worn out afterwards, but you could tell how happy he was to get out of bed. He even sat on his own for brief periods! We were (I was) so worried laying in bed for 2 weeks would set him so far back in regards to his skills. He's obviously determined to prove everyone wrong. Below are some pictures of this morning.
Sitting up
Saturday, February 9, 2008
BiPap
Tater is off the ventilator and on a BiPap machine. He got off the oscillating ventilator on Wednesday and was switched to the regular ventilator. They were able to wean him off that fairly quickly and he seems to be tolerating the BiPap fairly well. Dr. Mama, in addition to being an intensivist, is also a pediatric anesthesiologist so she has knowledge about drugs that aren’t typically used in the PICU. She thought Tater might have some trouble being weaned off the traditional sedatives they were using on him and she switched him to a sedative that is used in surgery and wears off immediately. It did the trick-they were able to stop the sedative and take him off the ventilator at the same time so Tater was able to take over a lot of breathing on his own. He had an up and down night without much sleep (for him or Mr. Awesome) but is doing okay and taking 20-30 minute catnaps now.
The next 36 hours will be critical for Tater as it will determine what the next step is and what help Tater needs to breathe well. The plan is to wean him down on the BiPap to 14-16 hours a day with Oxygen support the rest of the time. If he’s unable to be weaned off the BiPap and it looks like he needs it 24/7 then it’s likely he will need a tracheotomy. We had actually decided last week to go ahead with the tracheotomy once he was over the RSV but Tater’s doctors wanted to give him one more chance at a non-invasive treatment (see why we love them). Doing BiPap 24/7 is possible but it means he wouldn’t be able to be moved around-literally laying in a bed all the time. It’s possible that with a trach he will only need oxygen and would be able to go about his normal routine with therapies and being too darn cute. I know tracheotomy and tracheostomy are scary words but we’re good with this. It means a little more maintenance and precaution but Tater can handle it and we think we can too. We have a good support group and we’ll have home health care to help us out. And I will definitely be getting a home health nurse to come in for relief a couple of days a week.
Leeda is still here and when she leaves my sister and her family are moving into our house to keep Toser there. Toser is getting so much love he won’t know what to do when things settle down and it’s just mean ol’ Mommy and Daddy there with him. When I walked in our house last night he and Leeda were snuggling on the couch. He saw me and said, “I don’t want Mommy,” or maybe, “I want Daddy.” Either way, can’t you feel the love? 2 minutes later he was crawling in my lap but it’s that initial moment of panic where you can tell he thinks the vacation is over. He’s still the sweetest booger alive and tells us he misses Tater. I miss Toser so much and would love for him to be driving me up the wall right now. Instead I’m watching Little Einstein for the umpteenth time because it’s the only thing that’s chilling Tater out right now.
The next 36 hours will be critical for Tater as it will determine what the next step is and what help Tater needs to breathe well. The plan is to wean him down on the BiPap to 14-16 hours a day with Oxygen support the rest of the time. If he’s unable to be weaned off the BiPap and it looks like he needs it 24/7 then it’s likely he will need a tracheotomy. We had actually decided last week to go ahead with the tracheotomy once he was over the RSV but Tater’s doctors wanted to give him one more chance at a non-invasive treatment (see why we love them). Doing BiPap 24/7 is possible but it means he wouldn’t be able to be moved around-literally laying in a bed all the time. It’s possible that with a trach he will only need oxygen and would be able to go about his normal routine with therapies and being too darn cute. I know tracheotomy and tracheostomy are scary words but we’re good with this. It means a little more maintenance and precaution but Tater can handle it and we think we can too. We have a good support group and we’ll have home health care to help us out. And I will definitely be getting a home health nurse to come in for relief a couple of days a week.
Leeda is still here and when she leaves my sister and her family are moving into our house to keep Toser there. Toser is getting so much love he won’t know what to do when things settle down and it’s just mean ol’ Mommy and Daddy there with him. When I walked in our house last night he and Leeda were snuggling on the couch. He saw me and said, “I don’t want Mommy,” or maybe, “I want Daddy.” Either way, can’t you feel the love? 2 minutes later he was crawling in my lap but it’s that initial moment of panic where you can tell he thinks the vacation is over. He’s still the sweetest booger alive and tells us he misses Tater. I miss Toser so much and would love for him to be driving me up the wall right now. Instead I’m watching Little Einstein for the umpteenth time because it’s the only thing that’s chilling Tater out right now.
Tuesday, February 5, 2008
Perspective
Tater’s still stable. There’s really no change to report but that’s a good thing. They tried a couple of things yesterday that seem to be helping him. His blood tests and x-rays look a little better today so hopefully he’s turned the corner on this.
And now for the novel. I realize I sometimes gloss over things in regards to Tater and the extent of what we go through on a day to day basis. The thing is, most of the stuff, while stressful, is pretty much second hand now. Tater turns blue. Okay. We have to deal with it and the stress that comes with it. Stressing about it all the time won’t make the situation go away and only makes it harder to deal. Not to say I’m not stressed all the time. I am. If you’ve seen me lately I must look older to you (c’mon, HAVE you seen the bags under my eyes?!). I don’t mean to downplay the seriousness of it all- it’s just that IT IS stressful. If I can remove myself from the stress of everything when telling other people about it then I find those people are able to process the information without reacting too crazy and making me even more stressed out. I don’t pretend to protect people from all this, but I guess I am practicing self-preservation by not always conveying how freaking hard it is sometimes. I am not being strong. I am simply functioning. In fact, a lot of the time I feel hopeless and when people say I’m so strong I feel like a fraud. I’m simply doing what I have to do. Everyone would do the same. You say you couldn’t but you would. You have no choice in matters like these.
So-Tater is sick and our lives kind of suck right now. But at least I have him and Toser and YB and we’re pretty darn happy in spite of everything. And I get a lot of perspective from other people’s stories and from my dear husband, YB (or Mr. Awesome as he has started referring to himself). It could be so much worse and this is what I’m grateful for:
-I speak the language. The family in the bed next to Tater’s is from another country and their child is just as sick, if not sicker than Tater. They’re just as confused and worried as we are and they don’t speak English. When a nurse comes in and doesn’t have an interpreter, the family really doesn’t have a way to know what’s going on. I’m sure they’ve picked up a few words here and there and they understand way more than they’re able to communicate but I see the poor mother standing over her child and I can’t imagine having to go through all this with Tater in a foreign country. It’s confusing enough for me and I know this language.
-I am legally my son’s mother. A blog I read is about a woman living in Central America with her husband and a daughter they are trying to bring home. She is in the process of finalizing her daughter’s adoption and is running into bureaucratic mess after bureaucratic mess. Legally she is only her child’s foster parent but emotionally, physically and financially she is this girl’s true mother. Can you imagine loving and caring for your child, but always thinking in the back of your mind that child could be taken away from you at any minute?
-I am dealing with only Tater being in the hospital. Another blog I keep up with is Confessions of a CF Husband. This man’s wife and daughter are both in the hospital with pretty serious problems. His wife has Cystic Fibrosis and is waiting to be put on a double-lung transplant list. His daughter was born 15 weeks early and is in the NICU in the same hospital as his wife. I cannot even begin to imagine what he is dealing with emotionally because just having a child in the hospital is draining. If YB were in the hospital too, I would have to be sedated with the drugs they’re giving Tater.
-I have Tater. I met Michele on an online Clubfoot forum as she was preparing to have a child she knew would have multiple serious birth defects. She lives close by so we met for lunch a couple of times and she’s such a sweet, grounded person with a faith in God that truly could move mountains. She and her husband went to many specialists and eventually decided the best place for the baby to be born would be in Baltimore at Johns Hopkins. So they temporarily moved to Baltimore with their 17-month old son (who might rival my boys as being the cutest around) so they could give their new child the best care possible from birth. When she was 37 weeks pregnant, she went in for an ultrasound and they discovered the baby had passed away. She had gone to this appointment by herself and she had to wait for her husband to find a babysitter in a city they don’t live in until he could be with her. And then she had to go through a painful labor and delivery knowing her child would not be alive when she saw it. She had a little angel they named Bernadette. I went to Bernadette’s memorial service and it was gut-wrenching for me-I can’t even fathom what Michele was going through after all she had already been through. I’m living a life similar to that Michele envisioned living with the baby she no longer has. She would give anything to be in my shoes, at the hospital with a baby who is alive. And yet she still finds it in her huge heart to be concerned about Tater and us. Most people would understandably need to cut me out of their lives after all that. She simply cares (even though she might think I’m a heathen-jk Michele). :)
-I have my family. YB doesn’t have his parents and his sisters live out of state. He has some pretty close family friends and he says my family is his family but I know it isn’t the same. His sister, Leeda, and her boys are coming today to stay with Toser at our house and I know he’s breathing a sigh of relief that she’ll be here. He’s been having to deal with all of Tater’s stuff and worry about work and take care of Toser while I’ve been pulling myself in to a shell and not wanting to deal with anything but Tater and stay at the hospital. YB’s fielding phone calls and visitors and making sure I get sleep while he’s running ragged. All this while not having anyone to really talk to and fall apart in front of. He’s the best husband in the world and I don’t tell him how much I appreciate all he does enough (and henceforth YB shall be Mr. Awesome, because he really is awesome).
I bet you a million bucks these people would be embarrassed if you said they’re strong people. They’re all doing what they need to in order to make it through their life. They function and look around and see where they could have it so much worse and are grateful for their situation, as crappy and sad as it may be. So you see? I’m not strong and I’m always on the verge of breakdown (thanks for picking me up from that last one, JMcGee). I get through each day only because I have 2 sweet boys, a great husband, supportive friends and family and am able to see some kind of perspective.
And now for the novel. I realize I sometimes gloss over things in regards to Tater and the extent of what we go through on a day to day basis. The thing is, most of the stuff, while stressful, is pretty much second hand now. Tater turns blue. Okay. We have to deal with it and the stress that comes with it. Stressing about it all the time won’t make the situation go away and only makes it harder to deal. Not to say I’m not stressed all the time. I am. If you’ve seen me lately I must look older to you (c’mon, HAVE you seen the bags under my eyes?!). I don’t mean to downplay the seriousness of it all- it’s just that IT IS stressful. If I can remove myself from the stress of everything when telling other people about it then I find those people are able to process the information without reacting too crazy and making me even more stressed out. I don’t pretend to protect people from all this, but I guess I am practicing self-preservation by not always conveying how freaking hard it is sometimes. I am not being strong. I am simply functioning. In fact, a lot of the time I feel hopeless and when people say I’m so strong I feel like a fraud. I’m simply doing what I have to do. Everyone would do the same. You say you couldn’t but you would. You have no choice in matters like these.
So-Tater is sick and our lives kind of suck right now. But at least I have him and Toser and YB and we’re pretty darn happy in spite of everything. And I get a lot of perspective from other people’s stories and from my dear husband, YB (or Mr. Awesome as he has started referring to himself). It could be so much worse and this is what I’m grateful for:
-I speak the language. The family in the bed next to Tater’s is from another country and their child is just as sick, if not sicker than Tater. They’re just as confused and worried as we are and they don’t speak English. When a nurse comes in and doesn’t have an interpreter, the family really doesn’t have a way to know what’s going on. I’m sure they’ve picked up a few words here and there and they understand way more than they’re able to communicate but I see the poor mother standing over her child and I can’t imagine having to go through all this with Tater in a foreign country. It’s confusing enough for me and I know this language.
-I am legally my son’s mother. A blog I read is about a woman living in Central America with her husband and a daughter they are trying to bring home. She is in the process of finalizing her daughter’s adoption and is running into bureaucratic mess after bureaucratic mess. Legally she is only her child’s foster parent but emotionally, physically and financially she is this girl’s true mother. Can you imagine loving and caring for your child, but always thinking in the back of your mind that child could be taken away from you at any minute?
-I am dealing with only Tater being in the hospital. Another blog I keep up with is Confessions of a CF Husband. This man’s wife and daughter are both in the hospital with pretty serious problems. His wife has Cystic Fibrosis and is waiting to be put on a double-lung transplant list. His daughter was born 15 weeks early and is in the NICU in the same hospital as his wife. I cannot even begin to imagine what he is dealing with emotionally because just having a child in the hospital is draining. If YB were in the hospital too, I would have to be sedated with the drugs they’re giving Tater.
-I have Tater. I met Michele on an online Clubfoot forum as she was preparing to have a child she knew would have multiple serious birth defects. She lives close by so we met for lunch a couple of times and she’s such a sweet, grounded person with a faith in God that truly could move mountains. She and her husband went to many specialists and eventually decided the best place for the baby to be born would be in Baltimore at Johns Hopkins. So they temporarily moved to Baltimore with their 17-month old son (who might rival my boys as being the cutest around) so they could give their new child the best care possible from birth. When she was 37 weeks pregnant, she went in for an ultrasound and they discovered the baby had passed away. She had gone to this appointment by herself and she had to wait for her husband to find a babysitter in a city they don’t live in until he could be with her. And then she had to go through a painful labor and delivery knowing her child would not be alive when she saw it. She had a little angel they named Bernadette. I went to Bernadette’s memorial service and it was gut-wrenching for me-I can’t even fathom what Michele was going through after all she had already been through. I’m living a life similar to that Michele envisioned living with the baby she no longer has. She would give anything to be in my shoes, at the hospital with a baby who is alive. And yet she still finds it in her huge heart to be concerned about Tater and us. Most people would understandably need to cut me out of their lives after all that. She simply cares (even though she might think I’m a heathen-jk Michele). :)
-I have my family. YB doesn’t have his parents and his sisters live out of state. He has some pretty close family friends and he says my family is his family but I know it isn’t the same. His sister, Leeda, and her boys are coming today to stay with Toser at our house and I know he’s breathing a sigh of relief that she’ll be here. He’s been having to deal with all of Tater’s stuff and worry about work and take care of Toser while I’ve been pulling myself in to a shell and not wanting to deal with anything but Tater and stay at the hospital. YB’s fielding phone calls and visitors and making sure I get sleep while he’s running ragged. All this while not having anyone to really talk to and fall apart in front of. He’s the best husband in the world and I don’t tell him how much I appreciate all he does enough (and henceforth YB shall be Mr. Awesome, because he really is awesome).
I bet you a million bucks these people would be embarrassed if you said they’re strong people. They’re all doing what they need to in order to make it through their life. They function and look around and see where they could have it so much worse and are grateful for their situation, as crappy and sad as it may be. So you see? I’m not strong and I’m always on the verge of breakdown (thanks for picking me up from that last one, JMcGee). I get through each day only because I have 2 sweet boys, a great husband, supportive friends and family and am able to see some kind of perspective.
Sunday, February 3, 2008
2/3 update
Tater is hanging in there. He doesn't seem to have a bacterial infection but they're keeping him on antibiotics just in case. He is tolerating the oscillator, but they're also keeping him out of it and paralyzed so he doesn't have much choice. His bloodwork looks much better today and he doesn't seem to be in too much distress. It's still a waiting game but today he's doing better.
I got sleep last night while YB stayed here and didn't get much. He's at home today resting up and will get Toser later so they can watch the Super Bowl at home tonight. I went to lunch with some of our best friends, CC and TC, and that was really good for me. All in all we're doing well today.
I got sleep last night while YB stayed here and didn't get much. He's at home today resting up and will get Toser later so they can watch the Super Bowl at home tonight. I went to lunch with some of our best friends, CC and TC, and that was really good for me. All in all we're doing well today.
Saturday, February 2, 2008
Oscillator
Hopefully last night was the peak of Tater's infection because it was a pretty crappy night and I do not want to relive any of it again. The night nurse ended up staying in here with us all night it was that bad. RSV makes the lungs produce a really thick mucous (snot) that is hard for even an otherwise healthy person to cough up. Tater can’t really cough up much on a good day so the mucous is just hanging out, closing off part of his lungs and causing all sorts of problems. They changed him to a different type of ventilator (called an oscillator) this morning and things are stable again. If this is the peak of the RSV and there are no other complications, like bacterial pneumonia, then Tater should start improving over the next couple of days.
Toser is back at the wonderland that is Coco and Papa’s. He gets new cars from the dollar store, gets to eat all kinds of good things and gets to stay up until midnight. He’s partying like a rock star and loving every minute of it. Meanwhile, I only look like I partied like a rock star: I have wrinkled clothes from (not) sleeping on the couch, bags under my eyes, bad breath because I forget the last time I actually brushed my teeth and I’m dehydrated from drinking (coffee).
We’re still not able to have visitors and it’s best if YB and I stay close by to the Tater and not try to see people in the lobby. Thanks for all your encouragement, support and love.
Toser is back at the wonderland that is Coco and Papa’s. He gets new cars from the dollar store, gets to eat all kinds of good things and gets to stay up until midnight. He’s partying like a rock star and loving every minute of it. Meanwhile, I only look like I partied like a rock star: I have wrinkled clothes from (not) sleeping on the couch, bags under my eyes, bad breath because I forget the last time I actually brushed my teeth and I’m dehydrated from drinking (coffee).
We’re still not able to have visitors and it’s best if YB and I stay close by to the Tater and not try to see people in the lobby. Thanks for all your encouragement, support and love.
Friday, February 1, 2008
duh
So. There's this switch on the front of my laptop that I flick back and forth all the time. It says Off and On and lights up when it's "on" but I've never known exactly what it does. I guess I figured if I needed it I would know. Wanna know what it is? It's the Wireless LAN switch. Meaning if I want to access a wireless network like the one I've been trying to access all week, it needs to be on. And it’s been off.
There you go. I now have internet access at the hospital.
No change with Tater. He was doing really well today when my brother was here with him, kicking his legs and really aware, but then got a fever and got yucky again. It’s going to be like this until the infection clears up. They’re still waiting for cultures from the lab to say if he has pneumonia but are treating him with antibiotics just in case. Still no definitive answer as to what the near future holds but Tater is tough and is hanging in there. And somehow he’s wooing the nurses even while he’s out. They all love him and the nurse today said, “Finally. I’ve been waiting to be assigned to him!” We feel really good about the care he’s getting and have no complaints.
YB was here last night while I went to art class and home. Painting therapy and sleep in my own bed did wonders but I’m starting to feel a little exhausted again. I should be able to get decent sleep here tonight because they’ll sedate Tater heavily again in a little while. YB is home with Toser and they’re probably having fun watching basketball in their underwear.
There you go. I now have internet access at the hospital.
No change with Tater. He was doing really well today when my brother was here with him, kicking his legs and really aware, but then got a fever and got yucky again. It’s going to be like this until the infection clears up. They’re still waiting for cultures from the lab to say if he has pneumonia but are treating him with antibiotics just in case. Still no definitive answer as to what the near future holds but Tater is tough and is hanging in there. And somehow he’s wooing the nurses even while he’s out. They all love him and the nurse today said, “Finally. I’ve been waiting to be assigned to him!” We feel really good about the care he’s getting and have no complaints.
YB was here last night while I went to art class and home. Painting therapy and sleep in my own bed did wonders but I’m starting to feel a little exhausted again. I should be able to get decent sleep here tonight because they’ll sedate Tater heavily again in a little while. YB is home with Toser and they’re probably having fun watching basketball in their underwear.
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