Feeling a little better...

This second round of meds seems to be helping. Casey is a little more perky and active these past few days than she has been in weeks. I really hope that this round gets all of what ever was left out of her system.

It has finally warmed up and the rain has stopped. Once she is all better we can take her swimming. She loves to float in the pool. She got a new swim suit for her birthday that she hasn't gotten to use yet.

Casey has been growing so much these past few months. She was using an inflatable baby tub but her legs were just getting too long. We decided to go ahead and get her a special needs bath seat. We shopped around for a while. We decided to get her the Snug Seat Manatee. She seems to fit in it pretty good, and it will adjust some so that she should be able to use it for a while. We had to switch out the shower head with a hand shower in order to use the chair. The chair fits in the tub so we didn't have to do anything else to make it work.

Casey's doctor gave us the orders for a nurse while we were there on Monday. We talked with a few agencies and finally decided to move forward with Maxim. They have already verified everything with insurance. All we have to do now is interview some nurses and then hopefully pick one. We won't know until we pick the nurse what type of schedule we will work out. It could be 3 12 hour days, 4 10 hour days or 5 8 hour days a week. It will be nice to have some extra help. It will help us work out a more structured day for Casey too.

I am hoping that at least once a day I can spend an hour or 2 working on my book. If I can have a nurse with with Casey and listen for her while she naps I can use that time to get a lot done. I really want to get my book going. For anyone that has no idea what I am talking about I am writing a book. I am basically writing the story of Casey. It will be similar to this site, but with a lot more detail. We tend to leave out a lot on this site. We try to keep this site a little more of a wrap up than the full story.

I want to use the book for a few things. One, my own form of therapy. Two, to share Casey's heroic story. Three to let other parents know they are not alone, and it is so worth the fight (everyday). Four, to share some of the lessons we have learned both the good and the bad.

Tim is doing the Austin Tri on Sunday. Other than the race we don't have much planned for the long weekend. We hope everyone is doing well and enjoys the holiday weekend.

More Details

So we saw Casey's pediatrician yesterday. We went over all of the details of her increased secretions, bleeding, fever, etc. They took an x-ray and checked her over. The x-ray did not look bad but there was a small area in the top of her left lung. They decided to go ahead and do another round of antibiotics. We started the medicine yesterday afternoon. Hopefully this round will kill off any remaining yuck that she has in her system.

We had a really long day. Casey needed a ton of suctioning. Between the car ride, then being at the doctor she was just not happy at all. She was really worked up the entire time we were out of the house. Our suction machine actually started to flash that the battery was running out. We had to get the doctor to move us to a different room so that we could be set up with their machine while we waited on them to review the x-ray. We expected that once we put Casey in the car to go home that she would take a nap. We were wrong, she continued to fuss the whole way home. She just did not want to be out yesterday at all.

Once we got her home she did settle down. She took a good little nap yesterday evening. Megan and Tim play volleyball on Mondays. Casey slept until about the time they left. Then she was pretty fussy the entire time they were gone and until we took her to bed. The good side of that was that she was up almost all day so she was really tired when she went to bed. She slept most of the night.

Casey has PT this morning. We are going to try to do it, but we will just have to see how she responds. Other than PT Casey will just rest today. Hopefully she will get this yuck cleared out and feel better soon.

Hard Week

Casey has had a tough week or two. As I mentioned in previous posts she got pretty on her birthday. We started a 10 day antibiotic on her birthday and finished up on May 2nd. Casey did really good over the following weekend. However the following Monday (5/5) she had a really bad morning. We had to go to the neuro appointment and get an EEG but before leaving the house we noticed she was having a hard time getting enough oxygen and was really junky and congested. We had to put her on oxygen for a few hours that morning.

By the time we were finished at the doctor she seemed better so we shut off the oxygen. She was tired that afternoon, but she seemed to be breathing better so we didn't worry too much.

From the 5th on she has remained really congested and junky. We have been suctioning a LOT more than we usually need to. Casey was doing a lot of really deep coughing. Her saturations have been a little lower on average as well. We started doing additional breathing treatments hoping that they would help.

The additional treatments seem to be helping (slowly) with improving Casey's saturations. Wednesday Casey had a really good day. She worked hard in PT and played a lot. That evening she was really tired. I made a few comments to Tim about how much she was sleeping. Around 8:00 I put her down so that I could get her medicine and food. When I put her down she made a big cough (normal after moving her) and I started to suction her. When I put the tip in her mouth I noticed I was not suctioning the usual secretions, but instead I was suctioning blood. It was not as much as we suctioned this time last year, but it was enough to totally freak us out.

The blood stopped after a minute or so and Casey seemed to be doing better. We were still freaked out, but she was saturating and relaxed. We were going back and forth on if we should sit and wait or rush to the ER. We paged all of her doctors and they all seemed to think it would be best for us to keep an eye on her and call back if she started bleeding again.

We kept monitors on her all night and did not sleep at all. About 10:00 Casey spiked a fever. She was doing much better before, but the fever got her pretty worked up. She was crying a lot. We gave her medicine to bring down the fever. It took almost 2 hours to break but it finally did. Once it broke she went back to sleep and she slept through the night. Tim and I kept an eye on her and the other eye on her stats/monitors all night.

After having a good night we decided to take her off the monitors and just let her rest during the day. We canceled her therapies and just kept her calm. Around noon she had a little blood, but not much at all. Then around 3:00 she had another big bleed (much like the night before). We called her ENT and tried to get in that day to have them run a scope and see if they could find the bleed. We were so worried that it was in a location that was not able to mend due to suctioning or just general moisture. Sadly the ENT was out on an ER, but they got us in Friday. Around 5:00 Casey had another big bleed. Oddly, she did not get distressed at all. Also, Thursday she did not spike a fever. Even her saturation was good. We went one more night with out sleep so we could watch her and the monitors.

Friday we took Casey to see the ENT. He checked everything out and put us at ease. He said with her increased secretions and the fact that they have been so thick. Added to the fact that she has been coughing a lot. He determined that the blood was coming from her throat. All of the mucus took its toll. He told us to start giving her medicine that will thin out her mucus some. Luckily she has not had another bleed since Thursday evening.

We have been keeping Casey as calm and quiet as possible to let her recover. We have an appointment with her pediatrician tomorrow. This is her 2 year appointment, but instead we will just use the time to go over what she is going through now. We will plan to start her therapies back up this week and just go slow.

We are going to talk to Casey's doctor tomorrow about possibly getting some day nursing to help out. Now that Casey is getting bigger it makes sense for us to get some help. I don't think we need around the clock, but at least a few hours a week would help out a lot. We'll see how that goes.

I decided to stay home instead of going to my mom & John's wedding party. My grandparents and sisters went. It looks like it was a really nice party. We did get some cake :)

I think that is about it. We are looking forward to a quiet week and a strong recovery. We will try to post more later as she gets better.

Happy Mother's Day

Happy Mother's Day to all of the mothers out there. I hope that you all had a wonderful day. We had a very nice day. Tim and Casey got up early to make me breakfast. Tim developed a few pictures of Casey and had them put into a really cute frame for me. I also got a new wok so I can make some stir fry now. After breakfast and gifts I called and wished my mom a Happy Mother's Day. Then all of us (even Megan) drove up to Temple to take my grandparents lunch. Casey was not happy in the car, but after we got there she got situated and took a little nap while we all visited. After she woke up we headed back to Austin. Casey was again not so happy about being in the car, but shortly after getting home and settled in she was happy. Tim called his mom this evening to finish out our Mother's Day events. All in all it was a nice day.

One of ours friends is in film school and her film was being played at a local theater this evening. We were hoping to get home in time for one of us to make it to her film. We had a lot going on, and Tim had to take some meetings as well. By the time we got everything done, sadly it was to late to make it to the show. I am sure it was great. Hopefully we will get a chance to see it later.

Casey's EEG and neuro appointment went well. The doctor reviewed the test and told us that everything seems fine. There was a few oddities, but nothing to worry over.

We have a normal week this week. No doctor appointments or test scheduled. On Saturday I am driving with my grandparents and maybe Megan to Houston for my mom & John's wedding reception. We are just going up for the afternoon/evening. We will be home that night. The party should be fun. When I spoke with my mom earlier today she said they are expecting over 100 people. Tim and Casey are going to stay home and have some daddy/baby time. I am sure they will have a good time.

I will post party pictures and this weeks events after I get back next weekend. Again, Happy Mother's Day to all the mothers. We hope everyone has a great week!

Updates

Casey seems to be getting over her pneumonia. She is still a little more junky than normal, and sleepy, but overall she is doing really well. She and I spent the morning in her playroom listening to all her favorite songs and playing with all the new toys she got for her birthday. She was having a great time. After a few hours she could barely stay awake so we had to take a break.

Tim did a race this morning in Smithville. This was his first race since Casey was born. I wish Casey and I could have gone to root him on. I am sure someday soon she will be strong enough for us all to go. Until then we will just root him on from home. He is doing the Austin tri in a few weeks. Right now the only other race he has signed up for is the Chicago tri at the end of the summer. I am sure he will do a few in between, but he has not picked them out just yet. Training here in Austin is much warmer than training in Santa Monica. He is trying to do as much early as he can so he isn't out in the heat of the day. I am glad he has gotten back into it.

Tomorrow Casey has a full morning. We have an EEG (just routine) then meet with her neuro (also routine). This will take most of the morning I am sure. This is the only thing we have outside of regular therapies this week.

We ordered a new stroller that works a lot better than what we had. We are still working on getting the fancy stroller/chair in. There are a bunch of custom parts that we are having to wait on. Hopefully we will have it soon, but I don't know when just yet. We are working on getting a stander and bath chair too. I will post more details and pictures as we get everything in. We hope everyone is doing well.