Finally home!!

The last 2 days in the hospital were tough ones. On Friday Kasey was doing soooooo good with her oxygen. When I left for the night, she was down to .1L! The lowest she has been yet.

But about 5am the next morning they thought Kasey sounded wheezy. So they ordered an albuterol treatment for her. The albuterol caused her O2 level to drop like a rock and they had to turn her all the way back up to 2L. Thanks to that, they would not let her go home on Saturday.

The pediatrician doing rounds on Saturday decided to take her off albuterol and try a different med. Saturday she did great! She was off her O2 when she was awake, and only needed it for sleeping.

Overnight Saturday night (about 2am) they decided she needed another treatment with the new meds. And again, it had the same affect. It dropped her O2 level. So, it was decided then and there she would not receive any more breathing treatments unless absolutely necessary!

Finally Sunday morning they decided to release Kasey. I think Hubby laid down the law the night before and let them know that we pretty much would be taking her home the next day. So, they agreed to let her go as long as we agreed to have oxygen on her when she sleeps. No problem!

Apria was here delivering oxygen within about an hour and half of us being home. It was nice! I was delaying Kasey's nap as long as I could because I knew they would have to set the O2 up in her room. Finally it was all good to go and I was getting ready to put her down for nap. When I tried to put the oxygen on her, she would have NOTHING to do with it. I don't blame her, it had been a long few days in the hospital. So, I just waited for her to fall asleep in my arms (that only took about 5 minutes) and then I put it on her.

Overnight she has to wear it as well. We were up several times with Courtney, as she now appears to have a cold, or something. The first time she woke us up, we had only been asleep about an hour and a half. I checked in on Kasey and wouldn't you know the oxygen tubes were up on the bridge of her nose? So, I set my alarm for 2 hours. I woke up when my alarm went off and checked on Kasey. Guess what? Her oxygen tubes were again up on the bridge of her nose. Now, she has these little sticky pads on her cheeks but she can still push the tubes out of her nose and up. So, I was up every 2 hours putting them back in. I have a feeling tonight may be the same way.

Tomorrow I will be able to talk to her pediatrician and we can get all of this straightened out. We will find out about how long she needs to be on the O2, and the meds, and all that stuff. I really can not wait to talk to her own pediatrician!

Well, it's almost 10pm, and I need to get some sleep, cause you know I am going to be up every 2 hours. And Hubby leaves at 4am, so it's going to be a long night!

Yet another Kasey update

Kasey was kicking some butt yesterday with her oxygen. She was down to .1 L. Last night, when Courtney and I left at about 7:30pm, we really all thought she would be coming home today.

Then at 5am someone came in to listen to her and thought she was wheezing. So they ordered a neb treatment. Around 6am Kasey was given Albuterol. (I am guessing on the spelling of that.) For some reason that caused her oxygen to plummet and they had to turn her all the way back up to 2L. That's quite a difference.

So, when I arrived at 9am, I was informed by her nurse that no Kasey could not go home yet. The pediatrician doing rounds that day changed her medicine a bit, and added some meds for her.

By this afternoon Kasey was doing really good! She was running around the halls with no oxygen on! It may be that we bring her home tomorrow, but she has to have oxygen at night while she sleeps. That's fine with us! She will be HOME!

She has started to have some visitors which has been nice. Papa came by and played with her for quite some time this morning. She really enjoyed that. Yesterday several people stopped by, and a few more today. We are so blessed with so many good friends and family!

The P's have been a huge help too. They kept Courtney yesterday for the day while I was at the hospital and while Hubby was at the office. I also dropped her off out there for a few hours this morning too. That has been very helpful for us to spend time with Kasey and not have to worry about trying to keep Courtney entertained as well.

Well, it's time for me to head back to the hospital!

Kasey update

I am currently sitting at the hospital. Kasey is indeed still here. At first they thought it was just croup and a virus. But after the last few nights, the doctors are thinking it's more. They are calling it Reactive Airway Disease. That is a nice was of saying asthma without officially diagnosing her with asthma. Which is a good thing because asthma is a pre-existing condition.

She has had a couple of rough nights. When she is sleeping, her O2 level drops. Wednesday night they had to turn her O2 all the way up to 4.5L for a while. That is a lot. Last night was better. It was only at 2 for a few hours before they were able to turn it back down again.

I am adding in that she is on both an oral steroid and and inhaled steroid. I get asked a lot if she is on anything besides oxygen.

I gave her a shower this morning. I don't remember when she had her last bath and she has been here since Tuesday, so she was overdue. That seemed to help her O2 level for a little bit. And of course it wore her out, so she is quietly resting in bed now. We are praying she gets to come home tomorrow, but I am not holding my breath for that.

I am working on uploading the pictures from the past few days as I sit here too. So, feel free to check the website for new pics! Time to go get more coffee.

Poor Kasey

So, Kasey came down with a slight cold on Sunday. She started coughing a little bit Sunday night. By Monday morning it was sounding bad enough that I went ahead and gave her the oral steroids we keep on hand. By Tuesday afternoon she had a fever of 101.6, and couldn't go 30 seconds without coughing. So, off to the pediatrician we went.

As soon as we were in the exam room, they checked her pulse/Ox level and it was at 85%. WAY below where it should be. So, they immediately put her on Oxygen. Once she was examined by the Nurse Practitioner, she said Kasey needed to be admitted to the hospital. The good news is that right next door to the pediatrician's office is a hospital! So, I was able to walk over and do the paperwork to get her admitted while the hospital pediatrician came over and examined Kasey at the pediatrician's office to write up the orders for the night.

Then we just used their nice little sky bridge thing to avoid the wind and rain, and walked over to the hospital. And they already had a room waiting for us, so we went right into her room. They had already set that up for her too! Waiting was a brand new in the package pink sippy cup, a package of size 4 diapers, and other things just for her. That was nice.

They think she has a virus, which also caused her croup to act up. So, she is fighting a virus and croup. Her fever has diminished, thankfully. Now she is just dealing with the coughing and the low oxygen level.

We don't know when she will be released from the hospital. Right now it kind of feels like no end in sight even though it will probably only be another few days. She had a setback last night and they had to turn her oxygen up to 3 liters for a while. That's a lot. She hadn't been that high yet. So I am a little worried about why we keep having to turn the oxygen up and not down.

She is miserable. She feels miserable. You can just see it. And she is soooo grumpy. My usual happy go lucky kid is GRUMPY. She watches movies on her ITouch, and I brought her some toys yesterday. The hospital also gave her some toys too. But, she is so miserable, it's not too hard to keep her contained and quiet.

My dad is going to go and visit her today. It will be interesting to see how she does for Papa. I hope she is happy to see him. That will make me feel a bit better if she is.

Hubby has been spending the most time at the hospital with her. At the same time that all of this was going on, it was Air Force graduation time around here. Tuesday night we were supposed to go to the Commissioning Ceremonies for our 2 graduating cadets. We were really looking forward to those as we have never been allowed to go in the past. It was always only immediate family members that were allowed to attend due to a lack of space. But they have found larger venues to hold the ceremonies at, so they are allowing the cadets to bring more people. But, we ended up at the pediatrician's office and then the hospital instead. Courtney was with a babysitter at home.

Wednesday was graduation. I was able to go. We already had another babysitter lined up for that day, so Courtney stayed with a babysitter, and Hubby stayed at the hospital but was able to watch the graduation on line. I was so glad one of us got to be there for our cadets and their families.

Wednesday night we had a dinner for Toby and family planned at our house. I had all the food prepped and ready to go, I stayed up until midnight the night before cutting, chopping and preparing everything. So, after graduation, I went and picked up the cake, came home, changed, and then headed to the hospital. Hubby then came home and cooked all the food and served it.

After that they brought the cake and ice cream and gifts to the hospital so we could all be together for part of the night. I made both Toby and Scott a quilt. Scott's had some Chinese characters in it because that is what he studied. Toby's had a few squares made from Crown Royal bags, because that is what he studied. No, I am kidding. It just fit his personality.

A quilt, to me, is a meaningful gift. I choose the fabric to suit each one of them. The backing was their class color. And I worked hard and sewed a lot of love into it. I hope it is as special to them as it is to me.

Today brings a new day. Graduation is over. Scott leaves town today, Toby leaves town tomorrow. Maddie, Toby's fiance, just got stationed here in the Springs. So, she is staying with us until she moves into her apartment this weekend.

Well, I need to go and get dressed so that I can go pick up Buddy's ashes and then go to the hospital to hang out. I hope all of you are well!

Buddy

Well, we did it. We said good-bye to Buddy on Saturday morning.

I had to tell Courtney on Friday afternoon to prepare her, and so she could say her goodbyes. She wanted to give him lots of treats and take lots of pictures of him once she knew. As soon as I told her, she burst into tears. She didn't want Buddy to leave and go to Heaven. It was very sad.

So, she gave him lots of treats, and she took lots of pictures of him. We took him for one last walk after dinner on Friday night. Courtney walked him most of the way. It was nice, it stopped raining just long enough for us to do that.

I was a little worried about myself. I felt almost emotionless about the whole thing. I knew it was sad, but I just felt emotionless. It was kind of odd and I was a bit worried about myself.

Hubby got home around 11:30pm Friday night. Just about as soon as he walked in the door, my emotions hit. I guess without even realizing it, I had compartmentalized it without even trying. I guess that is what you do when you are a "single" mom. You hold on to those strong emotions and compartmentalize them until you know its safe to release them. Of course, once I started crying, I couldn't stop.

Hubby had a great idea, which was to sleep on the floor with Buddy that night. We woke Courtney up and brought her downstairs as well. The 3 of us made a triangle with our bodies, and we put Buddy in the middle. We affectionately call it the Love Triangle. Buddy slept soundly all night and right up against me.

The next morning we spoiled him with a breakfast of eggs and bacon. And I don't know how many treats Courtney gave him. It was a lot.

Hubby and I dropped Courtney and Kasey off at a friends house, we had all 3 dogs with us. We always take any other dogs we own at the time, so they are aware of what happened to their litter mate.

The dogs were all amped up because they were at the vet. We were not in a normal exam room, we were in their "saying goodbye room", but they still knew where we were. As soon as Buddy passed, Bristol and Maggie laid down behind us very sad like and didn't move until we told them it was time to go. It was very eerie and rather sad. Maggie was more interested in sniffing Buddy's body than Bristol, but the two of them were obviously very sad. It was touching.

We left through the back door and went and got the girls. When Kasey got in the car she immediately asked "Buddy?". We told her Buddy was all gone. She has done that several times over the last 2 days.

Courtney has bouts where she suddenly misses Buddy, doesn't want to be a 2 dog family, wants Buddy back, etc. I am sure this will last a few days to weeks.

I had prepared for this moment about a year ago. I had purchased 2 books that help kids understand the death of a dog and what happens. They are both basically about Dogs in Heaven and all the fun things they get to do. I think the books help me more than Courtney.

So, we are still reeling from the loss of Buddy. But I know he is so much happier and back to his normal self now. And I know that someday, when I go to Heaven, he will be there waiting for me, along with all the other dogs I have loved, and will love, along the way.

it's not over yet folks

As I said in my last post, this has been one tough week! It hasn't even been a full week yet either.

So, I had all that stuff last week with Courtney and her neurologist. Then this week it's been Buddy. Buddy has had dementia for some time now. He has bouts of it, it's not all the time. every time he has a bout, it gets worse and worse. He gets very confused, walks in circles, and forgets how to go outside, and goes potty inside, a lot, among other things. His quality of life is not the greatest. He is blind, going deaf, and forgetful. All he really does it eat, sleep and potty. Really. He's back to the newborn stage.

So, I also had to make the decision that it's time for Buddy to go to The Rainbow Bridge. We were going to wait until May 27th. That would be after Hubby is back, and after all our Air Force Academy graduation celebrations. But, it's been pretty bad the last 2 days. So, I changed the date to this Saturday.

All of this I have handled while Hubby is out of town. You know what I realized yesterday? I am pretty darn strong. I am a whole lot stronger than I ever gave myself credit for. I have not lost it, yet. Well, only once last week dealing with the Courtney stuff. Thankfully my sister was available to help out with that one.

Well, I am going to go veg out in front of the TV. I think I have earned it.

Tough week

It's been a rather tough week here for me. Hubby is on a 2 week trip at the moment. And Wednesday we went and saw a new neurologist for Courtney. At the place where my mom works, they have a new guy who's specialty is child development. He is fresh out of med school and residencies, so I thought getting a second opinion certainly wouldn't hurt.

Well, I may have been wrong. But it may have also been the very right thing to do. He spent an hour with me and Courtney, and Hubby who was listening on Skype through my iPad. He asked all kinds of questions, and I had brought a copy of Courtney's very old MRI. And when all was said and done, I had learned some very interesting things.

First, apparently Static Encephalopathy Central Hypotonia is a useless term. Nice, it only took me over 2 years to learn that. He said basically that means that something isn't right in her brain, and that is not changing, and her core muscles are weak. But WHY is a big question, and I guess more so is how does it manifest itself. Then he dropped a bomb. He suspects Courtney is ADD. (Attention Deficit Disorder).

I left there feeling punched in the gut. It took me a couple hours to figure out why. For so long when Courtney was younger everyone kept saying to us "she'll grow out of it". I guess I had interpreted that in my mind as a year or two. Which is why we got her into therapy so quick and at a young age. My thinking was, get her through therapy and this way it won't interfere with school. Suddenly a diagnosis such as ADD, or something else, is not something she is going to grow out of quickly. No quick fixes here, no growing out of it by age 5. That's tough to hear.

So, our next steps are: getting another MRI of her brain to see if anything has changed, make sure we didn't miss anything first go round, make sure it's developing as it should. She is also to undergo behavioral and psychological testing. We are also working to gather up all the blood tests she has had done to make sure she has had all the test that this neurologist would like to see. We also need to start her in some pretty intense behavioral therapy.

I called her pediatrician that day too. When she called me back she agreed that static encephalopathy is a useless term. And she said that when neurologists diagnose ADD, they are usually correct with their diagnosis.

Don't get me wrong, I really liked this new neurologist! In fact, I would really rather have an accurate diagnosis then just have her labeled under a general term. It's just still a punch in the gut to think that for the last few years we might have had her misdiagnosed. Well, not really misdiagnosed as much as not clearly diagnosed. And it's painful to think that she is not going to grow out of this as fast as I expected. In fact, if she is ADD, we will be able to get services through the school a lot easier.

The next day I had a parent-teacher conference at school. As far as that goes, she is a model student! She is excellent in class, empathic, shares well with others, the praise went on and on. Then I walked out of that thinking: how is this possible? How can she be such an angel at school and so opposite at home? I guess only time will tell. Hopefully over the next few months all my questions will be answered. I hope.

And of course I have stress induced IBS (irritable bowel syndrome). So, my IBS had been acting up really bad the past few days which really isn't much fun. Especially when you are trying to parent 2 kids by yourself.

Plus Grant, one of our cadets has been here the last 4 days. The really nice thing about having him here is that it's another adult to talk to. Plus I eat a whole lot better when I have to make dinner for everyone. When it's just me and the girls, I don't really make dinner, we more just scrounge things together. I took Grant back to school tonight, but Toby is coming over tomorrow night to stay a few nights.

Well, I am so exhausted, I really need to head to bed. Hugs to all of you.