Tuesday, October 30, 2007

Score One For The Little Guy!

Where do I begin. I have been Tommy's sole caregiver since he was born. The only time I have left him is if he has been hospitalized and even then it was for the shortest time I could manage. My only "vacation" from him has been my monthly grocery shopping trip to Walmart when my husband keeps him in the van (and me with a walkie talkie just in case). I've been trying to get respite f~o~r~e~v~e~r! I am told again and again that a respite worker can watch him but for liability reasons, they can't feed him, give him medicine or suction his trach. I can work around the feeding schedule, but to not be able to suction his trach could potentially kill him. The trach is his only airway.

I've contacted the Governor office, I've contacted Medicaid, I've made quite a bit of noise on Tommy's behalf. How can I be a good mom/nurse/caregiver on little to no sleep? I finally convinced my Early Interventionist to apply for the Medicaid Waiver program. If we could get to the top of the list, it would qualify us for skilled nursing in the home and I can use my time to clean house, teach the boys, or just rest. Right now none of those are an option. As a matter of fact, it's 1 o'clock in the morning and I am still awake trying to get laundry done, and if I'm lucky, I can sneak in a shower! It's going on a week and I am killing plants when I walk past, but I have nobody to watch Tommy. As a matter of fact, I'm watching him now, on the video monitor. We put a camera in his room. At any time, he could start having an asthma attack and I have to be there to clear his airway. I will have to shower with the door open and be quick about it...if I get to it.

So that is the background. Two months ago, we finally got our EI to file for the Medicaid Waiver list. We were placed at number 920. Then the case manager for the nursing agency met Tommy, called up our EI and here it is, two weeks later and I got a letter in the mail today that we have been reclassified as a critical case. Tommy got bumped straight to the top of the list and is now sitting at number 2. We're going to get full time nurses and respite now. What a huge relief! Now to nail down qualified nurses, but that is going to have to be dealt with another day. For now, I am going to revel in my victory!

Saturday, October 27, 2007

Well, our nurse did start as planned on Tuesday and on Wednesday, I called her supervisor and asked her not to send her again. Well, it started off that before she came, she told me she would have to leave at 2 to go get her daughter from school and then be back around 4 and stay till around 6 to get her 8 hours. No biggie, since 2-4 is Tommy's usual nap time.

The problem is not only did she sleep sitting on my couch for nearly the entire time she was here, she never talked to Tommy or tried to touch him, hold him, etc. Then, we talked about what an early day is was to get used to at 8 o'clock. She said she has one client that wants her to come in at 10. I tell her that is great. Then she tells me she clocks in at the office at 8 but doesn't show up until 10 and then leaves at her regular time!

NO! NO! NO! NO! NO!!!! I was in such shock at what was going on that I didn't confront her. She was a nice person, but there is no way I trust her alone with my child. The case manager from the nursing agency is looking for another nurse. I'd rather do without than not be able to trust who is left with my baby.

Well, changing topics here....

The charity that donated the funding for the nurse also provided Tommy with a brand new crib! I finally got his room all fixed up for him and he is now sleeping (rather he's playing quietly) in his own bed in his own room. It took me a very long time to get it fixed up since it used to be Rob's office. Rob ended up coverting our second bathroom into his new office so Tommy could have his own room. My living room doesn't look like a hospital anymore! Now it's all neatly lining the walls in his room. It's so awesome to sit here and watch him on the tv.

Yep. TV. We put a security camera with night vision and sound above his bed and then plugged it into the RCA jack on the tv. Now I can watch and hear him all night long. If he wakes up having an asthma attack, I can see and hear him on the tv and rush to his side. He's only in the next room, but if I didn't have the sound up on the tv, I'd never hear him coughing.

Here's pictures of his room. I took the bassinette out and donated it to the charity when they brought the crib. Here is also a picture from the store's website of the crib since I can't get a good shot of it.

Tuesday, October 23, 2007

Ack! The Nurse Starts Tomorrow!

I feel like I am on the edge of cliff and I'm about to be pushed off! My house is a complete disaster area. It smells funny. I am too wound up to sleep, and in just 7 short hours, I will have a nurse knocking on my door. Part of me wants to cheer and the other part is completely embarrassed by the state of my house. Then I remind myself the reason my house looks this way is because I need help! I almost feel like I have to have someone here to help me get ready for the person coming to help me! I have mountains of trash in my kitchen. The neighborhood we live in says we can only put trash by the road that "fits in the can". If it doesn't fit, they won't take it. It makes me want to beat my head against a wall!

I've been working for almost a week to get Tommy's room cleaned out so that we can start using it for him. I'm nowhere near done. I guess after the boys go to sleep, I will take a trash bag in there and just start tossing everything. It used to be Rob's office, so it's full of who knows what! Brandon thinks its his playroom. I found smashed pink paint balls on the wall today. Yippee. I'm really hoping that this nurse is going to be super-understanding about our situation and can be a huge help to me. Just knowing I will be able to leave the room and another responsible adult is going to be able to take care of him feels so great. I'm hoping that tomorrow I can get his room done with her watching him. Oh, that would be Heavenly.

What I really want to do while she is here is SLEEP, but since Matthew and Brandon are going to be completely uncooperative on that matter, a nap will be out of the question. I can't even get them to go to bed at night. It's 1:17 by my clock and they are still wide awake. Maybe I should drag them out of bed for a cleaning session and see how fast they go to sleep! Speaking of sleep, I should be getting some. I have to be up and dressed and answering the front door in 7 hours!

Tuesday, October 16, 2007

Life Stinks Today

Tommy failed his swallow study today. We have proof he is aspirating on xray now. It stinks, but there isn't much I can do about it.

I'm so tired tonight. I might actually be asleep before my usual 2 a.m. Time to refill Tommy's feeding pump, put on a new nebulizer bottle on his humidifier, and set my alarm clock so I can get up and spot clean the living room so he can have occupational therapy tomorrow.

Life stinks financially right now. I am doing everything in my power not to call my mother in law for a loan, but every day that goes by seems to look more and more like I am going to have to call soon. I don't know how we will ever pay her back. I guess a lot of things stink around here today.

Sunday, October 14, 2007

Lazy Sunday Afternoon

I'm having a nice, lazy day. It started a little on the tense side, but things have died down. Mean Mommy had to come out for a little while to get everyone to behave. One the older boys figured out I meant business, they straightened up. I even got them to pick up their room. Now Tommy is having a nice little nap, and Matthew and Brandon are watching television in their room.

Rob has not been feeling well. He's gained a lot of weight lately and is very discouraged. It's affecting his health. So he and I are changing our lives drastically. I changed his portions sizes to reflect our new eating habits. It's not easy for him. It's only easier for me because I have been doing this longer because of my own health issues (I'm pre-diabetic). He must have told me ten times last night that he was hungry. I haven't exactly been good myself. I did at least make a good choice for my sweet tooth...a can of beets! OHHHH, it hit the spot! Nice and sweet, low carbs, vitamins, no guilt there!

Rob is taking a nap right now. I'm a little jealous that he can go take a nap whenever the mood strikes him. Heck, I don't even have a bed right now! One of these days, hopefully before Tommy turns, oh, say three we will have him moved to his own room and I can have a twin size bed in there with him. I miss sleeping in the same room as my husband, but Tommy's health comes first. Until then, my living room is part entertainment room, part bedroom, part hospital. I am so thankful that when we got our taxes back last year that I bought very comfy couches!

The last time I had new living room furniture, I was 19, married to my ex husband and a brand new mom. We bought a sofa bed. NOT a comfy piece of furniture. When we moved to Maine, my ex thought it was a great idea to store everything we owned in his family's barn. Not only did it stink like crazy (it was a "working" barn with animals!), but the bull got loose and sat on my one year old couch! I've been using hand me down furniture ever since. I made a much better choice with these couches! Now if only I can get all of this medical equipment out of here, I might be able to find a place to sit!

Tuesday, October 9, 2007

Tuesday Catch-Up

I made it through the weekend and managed not to infect Tommy with my cold. Woo-Hoo! Our new central air was installed on Friday. It's twice the size of the last one. We used it for a while on Friday, but had to stop because we need to buy filters for it. We haven't had a chance to hit the hardware store yet. Maybe I will put that on Rob's to-do list for tomorrow.

I've been working on reorganizing my house again. It's an ongoing battle. Our house is just too small. The more I take out of the bedroom that is supposed to be Tommy's future room, the more gets dumped into it behind my back! It's becoming a catch all for whatever doesn't have a place. I'm so sick of it! It's all Rob's crap. If I had the time and energy, I'd trash all of it, but since I am peacekeeper around here then that's probably not a good idea. Besides, I have no time or energy.

I meet with a coordinator tomorrow who is getting us set up with our temporary nurse. The nurse has to work an 8 hour shift according to state law. My problem is I am not sure which 8 hours of the day would benefit us the most. She's probably only going to be here one day a week, so I also have to decide which day is most beneficial. If it is on a Monday, I would have to get up. Um, no. I try to not do anything on Mondays. Monday is usually my transition day. Tuesdays are occupational therapy, so for an hour she'd have nothing to do. Maybe that could be used as her lunch hour. Fridays are the same way. That might actually work to my benefit...If she gets here at 8 on Tuesdays and can help me get him up and do trach care while I deal with Monster kids and breakfast before the therapist gets here. She and I are going to talk anyway, so we can work out the kinks.

Well, Tommy is playing patty cake with himself. Right on time for dinner to be cooked, he needs a diaper change and some entertainment. Yep, I am going to love having somebody else here once a week to do all of the Tommy stuff for me!

Thursday, October 4, 2007

I hate having a cold!

I've had an exciting couple of days. We got approved for a grant to get us a brand new central air unit. They are bringing it tomorrow. Everything has been going great for the past week until this morning when I woke up with a cold! Pleh! I hardly ever get sick, but when I do, I am so miserable. I am plowing on anyway the best I can. I just have to stay away from Tommy today. No play time with the baby. No kisses for him today. He will still get plenty of attention from his brothers, and I can wave at him from across the room. I really don't want him to get a cold. I have kept him (and myself) well for nearly a year now. At least this is just a head cold. Hopefully by the weekend I will be my old self again.

Now I have to go figure out how to clean my house so the air can be delivered tomorrow. Going to be a neat trick figuring out how not to bend over to pick stuff up!

Tuesday, October 2, 2007

Busy weekend/ Slide show for Tommy's first birthday party

What a weekend. I am so glad to see it over and done with! It started Friday with Tommy's well child check and shots. It got stretched out longer than I had planned. It just so happened to be the one day Rob could get overtime and I get stuck at the doctor's office. In the end, it worked out okay. Saturday, I WAS going to do the heart walk, but it wasn't meant to be. I really wasn't in the mood to haul around a wagon full of oxygen tanks just to be sure we had enough.

Sunday was Tommy's birthday party. I didn't think I was going to be able to make it to my own son's party, but that had a way of working itself out as well and it was an awesome time!

Today, we were back at the doctors office for another round of shots. This time it was for RSV and the flu. Tonight he developed a lowgrade fever for the first time since I've had him home (December last year!!!), so I was a little panicked. A quick phone call to the on call doctor didn't make me feel much better, because she automatically wanted us to come to the germy ER at 2 am. No thank you! I'll pass on that one. I gave him infant Tylenol and he was just fine. I'll call his regular doctor in the morning to just double check.

So there. I'm so beat! Here is a slide show from Tommy's first birthday party! Enjoy!
View this slideshow created at One True Media
Tommy's First Birthday Party

Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries