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.

"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!

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!