Family Vacation

Family Vacation

Thursday, February 16, 2012

Home Again

Today we were released from the hospital. The STAT nurse put in a PICC line yesterday, it's like a more permanent IV so that we could take Nathan home on IV antibiotics that I give him. So today once they were sure the PICC was functioning they released him. It took a while to coordinate the home infusion supplies but once that was all figued out we were good to go.

Once we got home from the hospital the nurse came out to the house to drop off all the IV supplies and pumps. She came with a HUGE bos full of stuff, all just for 2 weeks. It's amazing everything we need for such a short period of time. I have to give him his last meds of the night at 10pm which isn't bad but it's 1 1/2 hours of meds total so it's going to take a while and I'm going to get to bed late but at least we're home.

Nathan was exhausted all evening. He has been really tired lately, I think it's been from not sleeping great in the hospital. So he was ready for bed tonight when we got home from Aunt Katherine's house.

The boys had a great time at Aunt Katherine's house. Trevor was very interesed in her wine collection and Nathan just wanted to just sit on the couch and watch PBS. The adults got to play some games while the kids played, it was a nice night.

Next week we're going to have a busy week with a Dr appt in Boston, one around here and we have to have the home nurse come in to change Nathan's PICC dressing. I better sleep when I can, these next two week are going to be quite sleep deprived!

Tuesday, February 14, 2012

We Just Can't Stay Away

Yesterday morning I was on the phone all morning call each of Nathan's specialists, we are due to go see most of them so I needed to call and make some appointments. One of my calls was to the pediatrician to check on urine results. Turns out labcorp faxed the results to the wrong place and it took a lot longer to get them than it should have.

Both boys urine was fine, no UTI's but that left us with the fever problem for Nathan. So while I was talking to the nurse she told me his urine did show some glucose in his urine which isn't a normal finding so they needed to get some bloodwork done. Anyone who knows Nathan knows how difficult that is so we went into the ER to get him checked out there and have the people who know his veins best try to get some blood.

The doctor initially acted like he didn't want to give Nathan some light sedation for the bloodwork but the nurse and I convinced him it was best for all of us, and we were right. They got the IV and blood on the 1st try - that never happens - and then about 45 minutes later Nathan looked at his arm and said "how did that get there?" They did chest x-rays and a renal ultrasound in addition to the bloodwork. His ultrasound was normal for him, his kidney has extra fluid in it but it's been there and it was better than last time so that is good. His chest x-ray is what got us admitted though. It showed a pleural effusion on the right side. That means that he has extra fluid around his lung, it's constriciting his lung making it harder for him to breathe and causing his oxygen level to be a little lower than they would like. They did another x-ray and it's small but it's there so we need to stay until it goes away.

The doctors are assuming it's from an infection since he has had such a high fever for so long. I'm hoping they are right and it's not from anything else. To treat it they are giving him TONS of antibiotics, I think he's on 3 different ones by IV right now. So I also asked them to put him on good bacteria to help with the diarrhea that I know is coming.

For now he's OK. Neither of us slept last night. Here is a timeline of events:

10pm, he finally settled into his room and went to sleep
11pm, vitals
12pm, they came in and turned on ALL the lights in the bed next to us - it was empty at the time
1am, they turned all the lights off
2am, lights on and a roommate came
3am, coughing fit because it's so dry in here he can't cough up the crap in his lungs
4am, bloodwork - the nurse did it at this time because he needed his antibiotic
5am, I called it a wrap and just got up and started working. I did that because the Dr's were rounding on the roommate.

Needless to say I'm exhausted already but Nathan is at least sleeping. I'm nosey and heard the Dr talking to his roommate who I think is going to go home later today so maybe this afternoon we can take a nap.

Sunday, February 12, 2012


Well the bus problem has been resolved. Nathan is now able to take the bus to and from school each day. I had to remind them that sending a safe carseat isn't an unreasonable request, it's just doing their job. The woman at the bus company isn't speaking to me, apparently we're 12 years old, but at least he's safe on his way to school.

Both boys have been sick for a month now. Nathan was in the hospital in January for RSV and then Trevor also got RSV but he avoided the hospital. Then they both started getting fevers but then the fevers would break for a couple days and return. So now we're waiting on urine results. I think since there are no other symptoms it's a UTI in each of them. Nathan has been complaining of belly pain which I think translates into back pain/kidney pain. So if his fever isn't gone by tomorrow and his results still aren't in I'm going to have to bring him to the hospital. I talked with the nurse at his pediatrician office and she agreed, we can't let him go for so long with a fever since he has just one kidney and we need to be careful with it. So for now we just have to wait and see.

Matt was home this weekend, which was nice. The boys really miss him, especially Nathan. Nathan has been having a hard time with Matt being gone so he really loves to be able to spend time with Daddy. It was also nice to be able to not rely so much on my parents and sister for help. With Matt and his parents all being gone my parents and sister are the only ones who can really help me with the kids. I've needed a lot of help lately with them both being sick. What has suprised me is the amount of people who have offered to help with the kids, it's been really nice to see how many people love my boys are willing to help in any way they can. What is even more suprising though is the people who haven't offered to help, the ones I haven't heard from at all since Matt has been gone.

Yesterday I went to Saratoga to help with a spaghetti dinner that was benefitting THON at Penn State. Two of my cousins go there so their parents put together the dinner in support of them and THON. MY cousins both came home for the weekend with a group of their friends, all college students, to help out at the dinner. It was amazing to see. THON raises money for the four diamonds fund - pediatric cancer. When I was in college pediatric cancer wasn't even on my radar and I certainly wasn't staying up for 48 hours to dance to raise money for it. It was amazing to see a group of kids (when did I get so old) who cared so much.

That's all for us for now. We are hoping to hear urine results tomorrow, otherwise I'm afraid it's off to the hospital for us.

Friday, February 3, 2012

Bus Problems

Nathan takes the bus to preschool, he loves it. He loves when his bus gets here, it makes him feel like a big boy. I love that we don't have to drive 45 minutes each way twice a day just to bring him and pick him up from preschool. I think that has ended.

I got a call the other day from the bus company, Gateway Transportation, that he was getting a new driver in the morning - fine, I couldn't care less. This will be his 4th driver this year alone, they are constantly changing the route and drivers, no big deal. So on Thursday a bus gets here at 8:30, school starts at 8:45 and it's a 45 minute drive from our house.

I walked Nathan out to the bus and saw the "new" car seat he was supposed to sit it, it looked older than me. Usually I ask to see the expiration date but I didn't this time, I probably should have. The straps were all twisted and mangled looking, I let that go also. They sat him in the seat and buckled him in, never tightened the straps. I couldn't let that go. I asked the aide to tighten the straps, she couldn't figure out how. So the driver stepped in and attempted to tighten them, they didn't move. Now please know, I only know about car seats from having been the annoying parent at every local car seat safety check asking a zillion questions while they police and techs are trying to install my car seats. So I told the driver that Nathan couldn't sit in that car seat because he needed the straps to be tighter. The guy lifted the strap up off Nathan and it was probably 2 inches above his shoulder, and acted like that was fine.

So needless to say I drove Nathan to school that day. On the way I tried to call the bus company, the first time I called the woman was ride and defensive, she told me he was a great driver and everyone loved him. Which is wonderful, but that doesn't make him a car seat expert. Then she told me I was being too needy, they knew what they were doing since this was their business. I told her she needed to care a little more about safety and apparently that set her off because she hung up on me. So i called back a couple more times and either they wouldn't answer or they just hung up on me once they heard who I was.

Today I kept Nathan home from school, he was exhausted from being up all night coughing. Good thing since the bus never came. While on my way to the gym I called, they discontinued bus service because I'm too "needy and demanding" I told her I'm not needy, I just want my son to be safe on his way to school. She acted like providing him with a different car seat is going above and beyond what they should have to do, I reminded her it was simply her job. Then I asked her to please understand why I was upset, I had been hung up on to which she replied "I hung up on you three times" like it was a normal thing to do.

I am so frustrated. I called the county and the woman there was equally useless. She told me she inspects their car seats at the beginning of each year and they are always fine, so I should just relax. I think I might take a picture of the next car seat he is provided to show them how awful they are. Ugh