Home Sweet Home

We're finally home! After 7 long days of just trying to keep his oxygen levels up and breathing treatments every 4 hours, we've finally made it home. Tommy is doing excellent. And I am hiding out.

I sent my kids to a friend's house. She has developed the bad habit of only calling me when she needs something, so I returned the favor. I needed someone to take care of the older boys so I could come home and decompress for a couple of days. So today I slept late and after I made a few business calls, I've been surfing the internet and watching Tommy enjoying himself rolling around on the floor playing with his toys.

I didn't know how much I needed this peace and quiet until today. Matthew and Brandon have been picking at each other for weeks now and they've been driving me crazy! With them out of the house, it is giving me some much needed down time. I played hooky today, but tomorrow I am cleaning my house from top to bottom without having to break up a fight or listen to how hungry they are just 30 minutes after a meal. (hello, boredom!)

I'm also still keeping a very close eye on Tommy. He has had a little bit of a clear runny nose today. I am hoping it is just from the change in air from the hospital to home. He's fine otherwise, so I don't think we're headed back to the ER any time soon.

He's rolling over really well now and holding up his head. I get the feeling determination will be taking over and he will attempt to crawl soon.

The Hospital Life For Me

Sorry it has taken me so long to update anything. Tommy has been in the hospital since Tuesday night, and our room only has web tv, not regular internet so it is really hard to post or get certain email programs to work. I've mangaged to keep a carepage up and running.

Originally it was thought he has the flu, but he has no symptoms, so it is being called a "lower respiratory viral infection". He has very poor lung function to begin with so this is really hard on him. His heart is also unrepared, so that adds to the mess as well. All we can do is management. We will be here for the rest of the weekend. Maybe longer.

The Hospital Life For Me

Sorry it has taken me so long to update anything. Tommy has been in the hospital since Tuesday night, and our room only has web tv, not regular internet so it is really hard to post or get certain email programs to work. I've mangaged to keep a carepage up and running.

Originally it was thought he has the flu, but he has no symptoms, so it is being called a "lower respiratory viral infection". He has very poor lung function to begin with so this is really hard on him. His heart is also unrepared, so that adds to the mess as well. All we can do is management. We will be here for the rest of the weekend. Maybe longer.

Update on my week

I really need to blog more often! Here's an update of what's been going on around here:

Tuesday: New nurse day. She was fabulous and I can't wait until she comes back! I took a short nap and even had the kids outside playing in the yard for a couple of hours. She is such a great fit for our family and I hope to steal her away when we get our full time nursing budget.

Wednesday: Boring day, no therapy, just us hanging out as a family

Thursday: Cardiology appointment for Tommy. Not a great day, but it was expected. I had a feeling about what they'd say. His doctor suggested that Tommy go to the cath lab as early as next week to try to open up his shunt a little so we can wait on surgery for a little while more. If they can't open it, then we are facing OHS yet again. The cath will tell us the type of heart surgery he will have. Good pulmonary function means we do the Glenn and poor function means we just resize his shunt again. I'm just waiting on a phone call. If I don't hear from them soon, I think I need to call.

And of course, today is Friday. Tommy has been tired lately so PT consisted mostly of sitting and reaching. No heavy duty work today. I've been trying to squeeze in a few homeschool lessons, but it's hard. No matter how hard, it sure beats sending them to school then wondering how they will get home when Tommy has a doctor's appointment.

Here comes the new nurse

Here we go again....

Tomorrow we get to break in a new nurse. Of course the house looks like a snow globe after you shake it, and I feel compelled to clean, clean, clean. The sad part about this is, I need help with Tommy before I can clean, so guess what...I gotta have a nurse to clean up before the nurse comes! Oh the hilarity of it all! I try hard to do what needs to be done around here, but with 3 kids, including all of the care that Tommy requires, I'm lucky I get to take a shower. It's not like I can leave the room to take care of cleaning, and by the time he goes to bed at night, it's after midnight. I'd call for Calgon to take me away, but I don't have time for a bath, haha.

So I guess I will do the best I can and pray she sees what I go through every day and show me sympathy. I hope that Brandon doesn't torture her. He likes to bug the crap out of every adult he encounters. I think it's his goal to annoy every person taller than him.

I'm off to teach a social studies lesson. I'd much rather sit on my couch and teach the lesson than deal with homework over something I know nothing about. Just another perk to homeschooling!

Back from vacation, back to the grind!

What a week we have had! We went to Myrtle Beach for 4 days and stayed with my MIL in an awesome timeshare. I got to sleep in a bed for the first time since July and I got to soak in a giant whirlpool tub and watch TV in my room at the same time. Now that's living! We also went to Broadway at the Beach. It's a giant boardwalk. We fed the fish, ate at Margaritaville, went to the KISS Coffeehouse, and saw a giant dragon talk trash about another dragon. Very funny!

I needed the getaway. This past Friday we saw Tommy's ENT. We were told he needs a surgery to try to stop his aspirating. It's called a cricopharyngeal myotomy. We have a 50/50 shot of it working. It's scheduled for December 14 and he will need to spend 72 hours in the hospital afterwards. If it doesn't work, we're back to square one. His doctor seemed very concerned, so that scares me.

Since we've been home, we've been approved for a Medicaid Waiver on the critical list. We have also been assigned a new nurse who will be here Tuesday. I hope she's well rested! We've also already been to the hospital for his monthly RSV shot, and to the Social Security office for his yearly review. Finally, we ended our day yesterday by going to the WIC office and getting him switched to Pediasure. He has a little bit of formula left, so I'm going to finish that out this week. With the Pediasure, he will be getting more calories with less volume. I'm sure he'll tolerate the switch well, but I'm always nervous about change.

Speaking of change, if you check out my avatar, you'll see that I had my hair cut. It was okay getting it cut, but I cannot tell you the number of times I talked myself out of it before I finally went for it! I donated my hair to Locks of Love.

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!