Wednesday, December 30, 2009

Latest Updates

Casey had a really nice Christmas. We hope all of you did as well. She got lots of new toys, clothes and books. All of her favorite things.

Last week we had her ENT appointment. The appointment was way over due. I knew it was going to be rough. Casey was really upset that he had to clean her ears out. We will go back again in 2 months next time. Before we ended up in the hospital every 2 months was pretty good. The stuff was not super thick and he was able to get it out pretty quick and easily. Hopefully her next appointment will be an easy one.

Casey went back on Tuesday for another chest xray. I still have not heard from her pulmonologist. I really hope he calls soon to get his take on the image. We really want to be able to get her off BiPAP soon. Some nights are not bad, but some nights she really fights it.

Casey started her outpatient therapies back up at Dell this week too. She had OT on Tuesday. It went really well. She did a good job bending. We will start water therapy next week. She is going to be so excited to get back in the water. I am not looking forward to getting into a swim suit this close to the holidays. It makes her happy though so I will have to just get over it.

We have a new nurse coming in the morning. If she works out she will be picking up Mondays moving forward. She will also be available when Casey's other day nurse can not make it. I hope it goes well.

That's about it for now. We are looking forward to a nice quiet New Year's this year. We are also looking forward to a good 2010. We hope you all have a wonderful and safe time where ever and how ever you are ringing in the new year.

Monday, December 21, 2009

Update

A few things have happened since our last post. Casey had her follow-up chest xray last week. The doctor said it looks a little better, but still needs some work. For now he wants us to continue the course. We are doing lots of breathing treatments and she is still on BiPAP all night.

Last Wednesday Casey started to sound a bit wheezy. By Friday she was really wheezy. We were told that she is at increased risk for pneumonia due to the collapse. In addition to the wheeze Casey was also having more secretions and they were getting pretty thick. I called her pulmonologists and we got her started on an antibiotic. I don't think she has pneumonia, but we want to be sure if this is early signs that we stop it before it gets bad. After just 24 hours she was sounding better already. Today she is not wheezy at all. We have to finish a 10 day course.

This morning Casey had her GI follow-up appointment. I made it before our Monday-Tuesday nurse fell asleep on the job. I really wanted to keep this appointment if possible. I called a few people and lucked out. Casey's previous nurse was off and available. She came over this morning and went with us. Casey is always happy to see her. They had a good time catching up this morning. The appointment went well too. Casey has gained a little bit of weight since discharge. She is back to 29 pounds now. We talked about her poop issues and have a few things to try. Hopefully we can get them a little less runny and less frequent soon. We go back in 4 weeks.

After we got home I had a meeting with Outreach. They are a DBA that poses as a middle man between us and Medicaid - MDCP. We can use this to hire our own nurses for our respite hours. Between previous nurses that Casey loves and a nurse we met while in the hospital there are a few nurses that we would love to stay with Casey so we can go to dinner and/or a movie every now and then. He is doing some more paperwork and will get back to me. If this goes well, we should be able to start doing this after the new year.

Tomorrow is a quiet day. I think we will just do some playing and read some stories. Then Wednesday we have ENT. Casey missed her cholesteoma cleaning while we were in the hospital. This is never fun, but we have to stay on top of this to prevent needing a surgery.

Casey is loving the Christmas lights and music. Tim wants to leave them up all year for her. If they didn't get so dusty I would say okay :) I think that is about it for now. We hope everyone has a wonderful Holiday.

Friday, December 11, 2009

Since We Came Home

It has already been almost a week! It feels like we just came home yesterday. I think we have been going nonstop the entire week. Good new, it makes the time fly. Bad news, we are exhausted!

We spent Saturday evening and Sunday trying to get caught up on laundry, TV and just resting. Casey slept all day Sunday. She was so happy to finally be in her environment it was the first time she really relaxed in so long.

We had nursing start back at home on Monday. We had just started training a new nurse a few days before Casey went into the hospital. Since Casey was sick at the time, I ended up holding Casey most of the time (just trying to console her). We were not able to really tell if she had the skill set that we needed, but she was really sweet with Casey. She came back on Monday to start back up, and was supposed to be the day nurse moving forward for Monday and Tuesday.

On Monday we spent most of the day going over all the medicine and equipment changes with the new nurse. Casey slept most of the day and it was a pretty easy day. Then Tuesday I am not sure what happened. There were a few things that were not right (late medication, papers, etc). Nothing major, just a few small things. When I would ask about them the nurse was so defensive and had a million excuses (mostly blaming everyone else but her). It was tiring. I did not need excuses, I just wanted clarification (did Casey get this yet, where did you put that paper, etc). I was trying to get some housework done. While I was cleaning in another room (leaving the nurse to sit with Casey on the sofa) the nurse fell asleep. I came back in and saw this and was shocked. Casey was fine, but obviously not acceptable for a nurse - needless to say she is no longer with us.

We also starting night nursing this week on Wednesday, since Casey has to be watched on her machine at night. The night nurse will normally help Sun-Wed. She was not as familiar with a lot of our equipment and needs as we would like - I wish they could teach a Casey course in nursing school. I think we can train her and she should work out well. The best part, she stayed awake! It is just going to take a few shifts with her to get her up to speed. I hope that sometime next week I will feel comfortable enough to actually go to bed and really sleep while she is here. I have not slept (really slept) in about 4 years now. The idea sounds wonderful. It is going to be hard to get my body to allow it though.

BiPAP has been going okay. Casey has big poops at night that are a little tough with the mask, since she is not in a comfortable position, but she is getting used to her room and the mask. She is starting to fall asleep a little easier each night. We were supposed to go Monday for her follow-up xray. Now that I do not have a Monday nurse we had to reschedule the xray for Wednesday next week. Maybe the extra couple of days will be what she needs to have a great xray. I am so hopeful that her lung will be healed soon. I want her to have her sleep and play schedule back. Having to keep doing round the clock treatments and other stuff is so hard on all of us.

I think that is about it for updates right now. We are trying to catch up and get our holiday decorating and shopping done. I will post again next week, probably after we get the xray results!

Saturday, December 05, 2009

WE ARE HOME!!!!

We are all so happy to report that we are home as of late this afternoon. We got all of our equipment set up yesterday and they wanted us to do at least one night there with our equipment before going home. We were all packed up and ready to go before 7AM. However they wanted to do xrays, then have all the doctors sign off. While we were waiting on the doctors Casey spiked a fever and a very high heart rate. We were so worried they would come in and see it and decide she needed to stay again. Finally late this afternoon they came by. The fever had broke when they got there and was on it's way down. Luckily the doctors did not freak out.

Casey has to do BiPAP at home every night for 10 hours. In addition she has to have breathing treatments every4 hours. We go back a week from Monday for a follow up xray. As the xray improves (at Casey's speed) we can start to cut back on stuff. We just have to watch and see how she does. I really hope that she can get off this machine soon.

The good news is that while she needs night BiPAP we will be able to get a night nurse a few night a week. We have never had night nursing before. We don't really know what to expect.

For now Casey is eating 24x7 as well. This means we go back to how we did food when she came home from the NICU after she was born. We can only put in 4 hours at a time. So, every 4 hours we have to get up and get her food. The night nurse will help with this too.

We have a lot to do, but it is so much easier to manage all of the work at home. The next few weeks are going to require a lot of adjusting. Once we get used to all the new stuff at home I am sure it will fall into place.

We will keep you posted as we make progress at home - we hope everyone is well!

Wednesday, December 02, 2009

Good Stuff


Casey has had a few good days in a row now. The doctors have mentioned being able to continue her positive pressure machine for her lung at home. Just the mention of the word "home" is what we have been waiting to hear - we obviously don't have a date yet, but we are getting there. I know we are all so ready to be out of here as soon as possible.

Casey spiked a high fever a few days ago so she has been on antibiotics. The cultures are still negative so they are thinking the fever was not related to any kind of infection. They are planning on stopping the antibiotics tonight (midnight is her last dose). They are also going to try cutting back on her methodone pain medication again.

Feeds and xrays are about the same. No big steps forward no big steps back. She is maintaining her feed rate, but still has some loose stools and sore rear end. Her xrays are still very cloudy, but slowly opening up.

Casey has been on room air (no oxygen tube) for a few hours now and is doing well. Hopefully she won't need to wear the nasal cannula any more. She has been doing really good sitting in her chair too.

We want to say thank you so everyone for all of your thoughts and prayers over the past few weeks. Also, thank you to all of our family and friends who have been helping out feeding the fish, getting the mail, running errands, bringing us food, etc. We really appreciate everything.

We will post more soon. Hopefully we will be able to post an ETA on getting out of here soon. Keep everything crossed for us :)