Stressed!

On Tuesday our new nursing company (PSA) came out to admit Casey. Overall it went well. We really like our case manager. When everyone left Tim said he wishes she could be our nurse. The nurse that came out is very sweet. Casey is having a rough time adjusting. She has been having a hard time in general.

The Scopolamine patches have been working to dry her up. However they tend to over dry. I can't seem to find the perfect balance. She is either too dry or a little faucet. This makes all things much more complicated. When she is too dry I can't suction. You can't get anything into her airway to clear it out. She also has a hard time and makes these awful choking sounds. Her dry throat makes her miserable. However if I back off the patches it is just as bad. She requires CONSTANT suctioning. I took off half the patches last night around 8 when I could not suction at all. I took off the other one this morning when she was still having trouble. I think I am going to have to leave off the patches for a few days to see if I can it all out of her system. Then maybe I will try to slowly add a much lower dose back in.

She is making these choking sounds and crying all the time. It is really hard to hear her struggle. It makes it a hard time to train a new nurse too. When Casey is so fussy and all over the place I just want to pick her up and calm her down. I am trying really hard to keep the nurse involved. It is really hard for me to step back when she is going through a hard time. I am working on balancing training with necessary "Mom" care too.

The next few days are going to be really hard. We have to get this Scopolamine out of her system though. I guess we will really test the new nurse right off. If she can go through this with us then she will be up for the much better days ahead.

If this is not enough to deal with I am having diaper issues too. They finally put Casey as incontinent so we can get diapers covered through insurance. The diapers that we get are awful though. They leak so bad. It seems like every other diaper I find her in a puddle. I am hoping it is the way we put it on. Maybe I can figure out a way to get them to fit better and reduce the leaks a bit. Until I figure that out I am doing lots of extra laundry.

It's always something. We have been talking about trying to plan a little mini vacation to San Antonio to take Casey to the zoo maybe in November sometime. I am WAY overdue for a vacation. I can not wait!!!

Casey has her therapies at Dell today and tomorrow. She will wear her costume. I will be sure and get some pics to post later. She will be so cute. As always we hope everyone is doing well.

Updates

Casey had a fun weekend. Her Uncle Ken came in on Friday so he and Tim could do the Longhorn Half Iron Man. They both did really good. Casey and I watched the web cast and cheered them on from the couch. Tim got her a little t-shirt from the race the day before. She wore it all day while we cheered for them.

After the race everyone was so tired. Everyone was in bed and asleep before 9. Ken had to head back today. Casey loves when family comes to town.

On Saturday we got a call to confirm something we had been working on last week. We are officially changing nursing services. PSA called Saturday to confirm that they will be here tomorrow to admit Casey as a PSA patient. Then starting Wednesday morning they have a full time nurse ready to go. If she does not work out they have a few others as backups as well. I am so hopefully optimistic about this.

It was really hard to make the choice to change. We really liked our case manager and his boss at Maxim. They were always so helpful when we needed them. They just could not come up with the resources to fill our needs. We could not put off Casey having a nurse just simple to spare their feelings. The nurses we had most recently through them were not great either so that did not help. I called Maxim this morning to tell them of the change.

I am really looking forward to meeting the new nurse and case manager tomorrow. From our talks on the phone I have a really good feeling about this. It is so great to be on the road to routine again.

Casey has a full week of therapies this week (as usual). She can wear her costume to Dell on Thursday and Friday. We invited one of her little friends over on Saturday too. I will have to get some pics of her in her costume and post them later this week. The costumes were on sale. Since she has 3 occasions to wear them I bought her 2 costumes this year. She can be Minnie Mouse on day and a purple witch the next. I am sure she will look super cute.

We hope everyone has a happy and safe Halloween :)

One Thing After Another

Oh my goodness, I can't seem to win with our nursing situation. We had Casey's previous nurse (the school nurse) scheduled to come out on Tuesday evening so we could go out and celebrate our anniversary. The service called in the morning and told me that she had gone to the ER the night before and would not be able to come that night. She was also scheduled to come on Sunday so that I could go and cheer Tim and Ken on at the race. As of Tuesday I was told that she would be here and not to worry. I was told on Tuesday that she was already feeling better and that they really doubted that should would not be able to be here. I just got off the phone with the service and of course, she has not been cleared by her doctor. Tim and I have made so many plans around her being here. I am so frustrated! I know it is not her fault, but if the service would have sent out people we would possibly have a person that we could use in her place. We have been shorted on hours for months now. We have not been happy with our nurse for over a month now. And as of a few minutes ago the one good thing we were getting from them is now out too. I am so mad I could scream.

Casey's previous nurses that we loved are no longer active with the service. One of them is very involved in her church so I hate to ask her to come by on a Sunday. I did contact the other one to see if she may be available. We would just pay her directly. It is last minute and she is usually pretty busy. I hope she is free; she may be free. I can't count on it though. It looks like for this week we have 8 hours total (out of 50) used. And, those 8 were pretty awful. I did not get anything done. Every time I tried I got called back home because she was not able to do her job to the level she should.

I don't want to talk about it anymore. I hope that my backup can come through. I really hope that by this time next week we have a new nurse in training with more potential than we have seen lately. Only time will tell. Until then, if you talk to me I may be a little snippy.

Nursing Saga Part ???? (to many to count)

It seems like we started out with such great nurses. The first nurse we had we loved. After her we had crazy nurse. She was only with us for a couple of weeks. After crazy nurse we had 2 nurses that were great. We had these 2 for a while and life was good. Tim and I totally trusted them with Casey. They got things done without me having to stand over them. They were wonderful. I miss them so much! After they left we had a nurse for a little bit that we liked. She had to go back to her main job as a school nurse after just a few weeks with us. It seems like since she left it has just been one thing after another.

We interviewed/met a handful of nurses. ALL of them seemed awful. I picked the best of them and we really tried to make it work. I posted a while back that on her 3rd day she pulled Casey's gtube out. She had some days where things went really well. Some days she just SUCKED!!! She was kind of lazy. Some (many) days she just preferred to sit and watch TV and not really do much at all with Casey. Casey would get worked up and she didn't know how to calm her down. Tim and I were always having to jump in. We never got to the point where we felt she was able to fully take care of Casey. If I had to run errands it was always when Tim was home, working, but home just in case. And, most of these times I would get a call or text from Tim while I was out asking me to hurry home. I was always stressed out about it.

We were still searching for another nurse so I kept her around since I have to have help getting to and from appointments. Other than that, she really did not help that much. I kept hoping they would find a wonderful nurse to fill the rest of our hours. Then if we hit it off with him/her we could soon transition over to them as a primary full time nurse. They hardly sent anyone out at all. We finally had one that I did like. She disappeared though. The service said that they would call her and she just stopped returning calls. It was kind of weird. Other than her they have not sent anyone else out. They keep saying they are looking, but no one has come.

About 2-3 weeks ago our current nurse gave her notice. I figured that for sure would get them to start sending more people out. Still nothing! Her last day is Friday and I have not met a single nurse. I usually like to meet a couple and pick the one that Casey seems most compatible with. We have ZERO to chose from. I am really stressed out about this.

If that's not bad enough, it gets worse. Last week our current nurse was out sick most of the week. She came back this week coughing and sounds awful. I kept asking if she was okay and she was like "I'm not sick, just have a cough". However, she did not go to a doctor. I really was not comfortable with her suctioning and being around Casey all day coughing all the time. When she would start coughing she would have to run to the bathroom all the time too (leaving Casey unattended). We decided to just go ahead and let her go. I really don't want her getting Casey sick. We can cancel most of what Casey has out of the house this week. We can arrange it so that Tim can take us on his lunch break for anything we can't get out of.

I just want the a nurse that Casey likes. Someone that knows how to keep her safe, healthy, calm, happy, and entertained. Someone that Tim and I feel comfortable with. Someone that we can rely on. I want our previous nurse back! Life was so much less stressful when we had a good nurse and a routine for Casey. I really hope we can get back there soon.

Hopefully next week we can make some progress on meeting and maybe even picking a new nurse. Until then, we will just figure it out.

Good Stuff

Casey had a full day yesterday. She had a 12:00 appointment to get her thumbs and legs injected with Botox. Before that appointment we had to stop by imaging and get a follow-up chest xray. After Friday's xray the imaging center called to tell us that they were not happy with the quality of the xray. They told Tim that we needed to come back for another one. Uh, no. We already had plans to get one on Monday and her doctor looked at the Friday one and was able to get what he needed from it. There was no way we were going to drag her back up there.

Monday the center was ready for us. They were really busy so we had to wait a little bit. Once they got us back there they had all the people that needed to look at it come in and check the image. They ended up having to do an extra shot. Happily they signed off and told us the quality was great and we could go.

After xray we went upstairs to neurology for Botox. We got there about 11:45 (a little early). The waiting room was packed. As always, every little boy in the room became Casey's instant buddy. She is so funny with little boys. They can't seem to resist her. I told my mom that if she keeps it up Tim and I are in for some big trouble when she gets older. We waited for a VERY long time (over an hour) to see the doctor.

We were able to get just injections, no sedation, this round. No sedation meant that the injections were going to be painful, but the risk of the procedure was overall much safer for Casey. The doctor started with Casey's thumbs then moved down to her legs. On one hand while the doctor was injecting it Casey swung with the opposite and bopped the doctor in the face. It was kind of funny (no one was hurt). Casey is always escaping. She cried some, but not too bad. She was a really good/big girl. On the way out she got to pick a very well deserved sticker.

Casey ended up crashing around 4-5 yesterday afternoon. The morning's activities wore her out. She didn't wake up at all when we took her to bed. Around 4 this morning she woke up. At first I thought it was just because she had been sleeping for so long. She was really upset though. Turned out she was trying to go potty. She got so worked up we ended up getting up to stay. I took the first shift then Tim took over so I could get a couple hours of sleep. After she went potty she calmed down, but she was awake.

I got a call back for Casey's pulmonologist this afternoon. Her xray looks much better. He doesn't need her to come back until February. That is GREAT news! She finishes her antibiotic tomorrow. She has been perking up more each day and coughing up less. She is one tough cookie. She has lots going on for the rest of this month. Thanks again for all the well wishes while she was recovering. We hope you are all doing well.

Follow-Up

Casey had her follow-up appointment with pulmonary yesterday morning. The doctor checked her out then sent us for an xray. We are supposed to continue with her antibiotics and lots of chest percussion and breathing treatments. Monday she is getting Botox in her legs and hands. We have to go in early and get another chest xray before her injections. I hope that will be the end of appointments for this pneumonia.

Casey is playing a little more each day and seems to be getting better and stronger. As long as she continues to progress/recover at this rate she should be able to start back with therapies this week.

I just got home from picking up a jacket so she has something to keep her warm after water therapy. She outgrows everything so fast. It got cool and she has no pants, jackets, nothing. I had to make an emergency clothes shopping trip for her.

We have family coming in to town next weekend to celebrate October birthdays. I am sure she will be all better by then so she can play and enjoy her company. Her cousin Riley is coming. She always has a good time with Riley. Then the following weekend her uncle Ken is coming to town to do a race with Daddy. Sometime between family and therapy we need to go get her Halloween costume too. I wonder what she will pick this year. October is a busy time for our little princess.

As always, we hope everyone is doing well. Thanks to everyone for wishing Casey a speedy recovery.

Updates

Casey is starting to respond to her antibiotics. She has wanted nothing but sleep and cuddles up until today. This afternoon she actually had some energy and played for a little bit. She is still junky. You can hear and feel the stuff in her lungs when she breaths. She is doing her best to cough it up. I hope that by the weekend she will be feeling a lot better.

Casey is going to see pulmonary on Friday morning. I am not sure if they will do another xray or just a clinic visit. I need to check and see if there is any problems with her antibiotic and Botox. If the doctor clears her then Casey will go in Monday for another round of Botox. This round will be hands and legs only, not salivary. The doctor is going to try the max dose in her legs to see if we can get her to relax. If not then we will not keep sticking her legs. The hands does work great though, so we will keep getting that done either way.

We got a little bad news yesterday. We are once again loosing our nurse. We have been using Angela 3-4 days a week for a little more than a month now. She just got up to speed and really comfortable with Casey. Ugh!!! Now we are back to square one. We were still looking for someone to fill in Mon-Tues, now we need someone to fill the entire week again. So frustrating. It seems like every time we get close to a routine and our comfort zone we have to start all over. Hopefully we will find someone we like soon.

The good news is that the insurance denial was overturned. Once we find a replacement nurse we are able to get it covered now. That was a mess. Luckily it only took a few days to clear up this time instead of a month.

The weather is starting to change around here. It is cool outside. Maybe once Casey gets better we can get hr out for walks and stuff. She needs to get her costume picked out for this year when she gets better too. I pulled out our Halloween decorations today and found her fairy costume from last year. She was so cute. I can't wait to see what she picks this year.

XRay Report

When I spoke with Casey's pulmonologist he was pretty busy. He had been given the report orally and did not have the written report in front of him. After I spoke with him Casey's nursing service called. They had the full report. I am so impressed with my little wonder girl. I asked her this morning to tell me where it hurt. I would go over different areas on her body and every time I asked about her lungs she would say yes when I would touch the lower right area. She did this consistently. When Maxim gave me the report I was amazed. In her lower right lung there is a consolidation or collection of fluid/bacteria. It is isolated to the lower right area. She was exactly right. Poor baby. I just gave her the first dose of antibiotic. I need to contact her therapists and get her the week off to rest now. The medicine is a 10 day cycle. I hope to see improvements soon since we caught it fairly early. I will keep you posted on her progress.

Mobile Imaging

Casey has been having a hard week. She has slowly been getting a little worse each day (since about midweek). She gets plugged into a pulseox (monitors heart rate & oxygen saturation) multiple times through out each day. We have noticed her average heart rate has been going up and her saturation has been going down. In addition we have noticed more frequent low grade fevers. Casey has been really fussy lately, and her secretions have been a bit thick and yellow. All of these are signs of possible trouble.

Usually when Casey starts showing these signs we are sure that she is developing a pneumonia. If we can catch it in time and get her started on antibiotics right away we can usually keep her at home and out of the hospital. I decided to call her pulmonologist this morning.

After I explained what Casey was doing and my concern for a possible pneumonia he wanted to agree. However, with the nasty flu that is out this year, and the fact that Casey's nurse was sick last week he wants to be sure it is pneumonia and not the flu. The only way to confirm this is an Xray for pneumonia and a flu scan for the flu.

We only have a small window with Casey that we can proactively treat pneumonia. If that window passes her chances of staying home go WAY down. Instead she ends up in the hospital, most likely intubated and in the ICU. We want to avoid that if at all possible.

We called the ER to see what they said. They said that there are a lot of kids there now and depending on how Casey presents compared to the other kids she may sit in the waiting room for hours (4+) before even being seen. Then once she is seen, they can not tell me that the doctor will be open to letting us get her medications and go home. If we take Casey to a hospital she is then exposed to a bunch of additional germs. If she does not have the flu, she would probably get it after spending 4 hours in the waiting room. Then the drive, having nurses and doctors moving her, poking her, xrays, everything just upsets her. The more upset she gets the worse she gets. Going to the ER adds a lot of risks and stress that we really try hard to avoid.

Tim and I were not sure what to do. We know she needs medication. We know if she does not get medication that most likely she will get sicker. However, we also know that if she is exposed to the germs in the hospital she will most likely get sicker. Either way we looked at it there was just no good answer.

I called Maxim (Casey's nursing provider). I told them what was going on and asked if they had any other options/ideas. I was so happy that I called. Maxim suggested we get a mobile unit to come to Casey. How perfect! She can get the xray that her doctor wants, we don't have to put her in the car, we don't have to expose her to additional germs, this idea is wonderful.

After a few phone calls the unit was in route. The company is based out of San Antonio but they server this area. For anyone that wants to know more the company is called AIS. It was about 2 hours after our initial call that the tech arrived. He wheeled in a little box on a frame. It only took him a minute to set up and get the xray of Casey's chest. Then he took the film to his car. He had the front passenger seat converted to a workstation. He was able to load the film, show it to me, and send it off for the doctor to review.

The tech told me it would be about an hour for the film to be reviewed and the report to be sent to Maxim and Casey's doctor. It ended up being just over 1 hour. Casey's pulmonologist just called. He is calling in the antibiotic now. We should have her medicine in hand very soon. I hope this is a fast acting one. She has been so upset and so uncomfortable. I will post later this week with updates on how she responds. She sees her pulmonologist on Friday morning (she had this appointment already- a normal checkup).