Bye, Bye Tubes!

We just got home from the ENT. Casey did really good. He checked her ears and said in general they both look really good. The left tube has been gone for a while and the right one was close enough to the opening of her ear that he did go ahead and pull it out while we were there. She flinched a little but didn't fuss or anything. Her right ear drum has a little negative pressure that we will go back in December to get checked, but for now it is nothing to worry about. Casey is officially ear tube free.

Trick or Treat

We just got home from Casey's Halloween Party. She got her face painted and was able to see lots of her friends. It was pretty loud and crazy so we did not stay real long.

This year appears to be the year of the fairy. Casey picked her Flower Fairy costume out herself and then at the party a lot of the other little girls were fairies too. I guess Casey is just a little trend setter :)

We got home and Casey crashed. She is taking a little fairy nap now. We will have to get her dressed up again on Friday so she can help hand out candy. The costume was really hot so she took it off for today.

A new nurse came out on Monday with Casey's case manager. I thought they were just coming out to interview and go over what we were needing. However after I went over everything they told me that she was ready to start that day. So I guess we have a new nurse now. Her name is Vicki. She and Casey got along really well. Casey was a little princess all day. She cuddled up and took a nap while Vicki held her, she spent nearly 2 hours in her chair watching videos, she talked, she was just such a good girl. Vicki will be back on Friday and after that we will have to work out a schedule for the weeks to come.

Casey has an ENT appointment tomorrow. Casey's left ear tube came out maybe a week after her last ENT and her right tube is just sitting right inside the canal. I am guessing they will probably take the right one out and then we will just keep an eye on them. As long as she is able to fight off any infections she gets, and as long as she doesn't get many infections I think she may be done with tubes. That would be great! One less thing that we have to deal with and even more than that one less procedure we have to put her through.

When it Rains it Pours

We had a rough couple of days, but I think we are finally out of the rut. So we have 2 suction machine for Casey. One that is a little more portable that we use during the day then another larger backup one that we keep in the bedroom and use at night. Anyway, the good one seemed like it was getting harder and harder to use. The suction just seemed to be getting so weak. After a couple of days the suction was almost none at all. Tim called and we had run out of warranty a few months prior. So he ordered a bunch of replacement parts hoping that one of them would fix it and we could find a way around having to buy a whole new machine. Then as luck would have it while we are waiting for the parts to come in another item broke. We have a pulse ox that we use to see the levels of oxygen in Casey's blood to determine if she is having breathing troubles or not. We have only had this item for 6 months. Out of nowhere the charger stopped working. We were not sure if the machine was broke or the plug but something was making it no longer register the charge. The Casey's nurse (who we love) called to say that she has a lot on her plate right now and that she doesn't think she can keep watching Casey for at least a few months.

I called to get the pulse ox replaced since it was still under warranty. Rather than replacing it they wanted us to just go without for days or weeks possibly more to send it in for repairs. WHAT?!!! This is medical equipment that we paid a lot of money for. That was just not acceptable to me. I went round and round then ended up having to deal with the manufacturer instead of the retailer. The manufacturer agreed to send me a new plug to see if it could ix the problem. If it can not then he wanted me to send the item in as the retailer was suggesting.

The suction parts Tim ordered finally came in and they did not help. We had to buy a whole new machine. Luckily when we called to order the new machine they did let us return all the parts. The new one works great and we got it really quick.

The company we get nursing through sent out a nurse to interview on our nurse's last day. She came out and spent a good 2 hours here going over everything. She seemed okay (we still did not want to loose Laura, but the new one was fine). She was set to start the next day. So the next morning the office called to say the new nurse was sick and could not come. No big deal, I would rather her stay home than risk getting Casey sick. So she was going to start on Tuesday. Then Friday we got another call from the office saying she is not going to work out after all. She was driving in from Marble Falls and decided the drive was just too much. I was not really surprised by that. I would not be able to do that drive and was shocked when the office told us about her drive to begin with. Tomorrow morning we have another nurse coming out to interview/orientate. Hopefully this one works out. She lives MUCH closer so at least we have the drive factor removed. Now we just have to see if her skills and personality are a good match for Casey.

We got the new plug for the pulse ox on Friday. It worked!!!! Thank goodness. I need to pack up and send back the bad one. This weekend has been going much better. We have gotten a lot of stuff done around the house and we are looking forward to meeting a new nurse tomorrow. I think the little storm cloud has finally blown past.

Casey has an ENT appointment and a Halloween party. I will post updates and pictures later this week. As always we hope everyone is doing well.

Updates

Oh, I have not posted in a while. What a crazy few weeks we have had. Shortly after my last post Casey got really sick. She had fevers, crying all the time, her secretions were really thick and nasty, and she was just miserable. We had to take a culture already to get a new reading for pulmonary, so instead of it being a well reading they rushed it to see what was going on. She had a pretty nasty infection and got started on antibiotics and additional breathing treatments right away. A few days after starting the antibiotics she finally started to perk up a little. The antibiotic is for 14 days and the additional breathing treatment goes for 28. She will finish up the antibiotic Friday. She started back up with her routine late last week. She ended up missing a few week of therapies. She is feeling much better now. She is not back to her usual sleeping pattern just yet (which is hard on all of us) and she is still having a lot of drainage. She is playing and her fevers are finally gone though.

Over the weekend Megan got all moved into her new place. I went by late Sunday afternoon and she had already unpacked almost everything. I was impressed, she got a lot done. She ended up getting a place not real far so it makes it easy if we need her or she needs us for anything.

Both Tim's and my mom have been traveling lately. My mom jut got back from Columbia where she spent 2 weeks for work following a 2 week stay in Aruba. She is really happy to be home. She still hasn't had time home to deal with Ike's wrath. I think she and John may come by later this month. Tim's mom had a fun trip. His brother Ken and his wife Jen surprised their 2 girls with a trip to Disney and the grandparents went too. I am sure they all had a blast. I have not talked to Jen yet, but I can't wait to hear how the girls reacted to the surprise.

Not a lot else has been going on. We have just been getting over Casey being sick and Tim has been really busy with work. We are trying to decide where to go for our anniversary later this month. This will 3 years married! Wow, it has flown by. As always, we hope everyone is doing well. I will do my best to post sooner next time, and to include pictures.