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!

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 :)

Hard Day

Friday started the weekend out so well. We got the call to cancel the bronc, then we heard her xray had shown some improvements. Then Saturday and Sunday the xray stayed pretty much the same. We were hoping to back off a few treatments, but that has not happened just yet.

Last night around 3AM Casey's nurse woke me up to tell me Casey had a big poop. We had the RT come in so we could turn off the bipap (she is still on bipap 10 hours a night). He got her shut down, and we got her all cleaned up. From 3-6AM she had about 4 more runny poops. Each one got her a little more upset than the one before. We would get her out of the mask, clean her up, then get her back in (suctioning all along the way). She was scheduled to come off the mask at 7AM. We tried so hard to make it. Casey was having a really hard time on the mask being so worked up. We called the RT in and got her off the mask around 6:30. After about 20-30 minutes with a lot of suctioning, diapers, and positioning she was back to where she needed to be.

As I got some much needed sleep Tim and Casey hung out all morning. She was doing pretty good. She had her breathing treatments and the poops seemed to have stopped. I got up around 11 and pitched in. She really had a good morning and afternoon. She sat in her chair a while. Some of the staff brought in some music for her to listen to as well. Aside from the 3-7ish start the day seemed to be going pretty well.

Out of nowhere around 4 Casey started to have a really hard time. Her heart rate was climbing fast and she was really uncomfortable. Her nurse gave her tylenol, motrin and her pain medicine. With all of that Casey still continued to get more and more worked up. They took a temp and she had spiked a 103 fever. They took some blood and urine collections. They also started her back on a couple antibiotics. She went from having such a good day to being just miserable so quick. It took us until about 8PM to get her temperature back under control.

Hopefully the collections will give them some idea of what caused the fever. She is comfortable now so that is good. She just got settled in for the night. The bipap is started and she appears to be nodding off. We are really hoping for a better night tonight.

Plan E?

What a crazy few days we have had. We do have good news- Casey is NOT going for surgery this morning. She was scheduled for a 9AM broncoscopy. She was all prepped and ready to go. Then last minute they said wait, it may not be necessary.

The increased bipap pressure night before last helped a tiny bit, but in the right places. Last night we went up again in pressure and added the nasal trumpet. Casey did not seem to mind it much, but the bipap mask was a really difficult fit around it. The xray showed a little improvement this morning as well.

Pulmonary came in to show us the xrays a few minutes ago. There was enough improvement to determine that the surgery would not be beneficial. However, she still has some work to do to get through the rest of the collapse. We are going to keep her on the increased bipap pressure over night (no trumpet) and continue aggressive respiratory treatments though out the day. Later this afternoon we will head over to xray to get a better upright image.

The bipap mask is giving Casey a bit of a rash. There is a wound care specialist here that is supposed to come by sometime today. She should be able to help us resolve the current rash as well as set up a plan for future rash prevention. This will be great if we end up going home on bipap.

We are working to wean Casey off of her major pain medications as well. I think with her lung improving some, her pain has gone down a lot. She seems much more comfortable in the past couple of days. They are giving her methadone so she doesn't have morphine withdrawals.

For now we just stay the course. Casey is taking baby steps, but they are in the right direction. We will post more as we progress with this plan.

Plans B, C, and D

We had another care coordination meeting today with the doctors, but it was much smaller than last week. This is mostly because Casey's feeding is going well and that's one less thing to talk about. However, her lung continues to be a real problem that is not responding to treatment. Casey has looked a little better the last couple days (heart rate lower, moving more), but she is also on a lot of drugs like morphine that help her pain but hurt her breathing. The longer her lung remains collapsed, the more likely it can't be inflated at all.

There are three things we can try before considering more drastic measures such as intubation / ventilation. First, we will increase the pressure on her mask / BiPAP treatment, in case her natural upper airway obstruction isn't letting all the pressure through to the lungs. Second, we can try something called a nasal trumpet, which is a shunt fed from the nose to the back of the throat. It is meant to maintain a better airway during treatments, but placement for Casey will be very difficult. Our third and final option before intubation is a bronchoscopy, where a line is fed into her bad lung to look for and clear any mucus plugs or other obstructions preventing inflation.

We need to give each option about a day to see if it is working. We get an xray early every morning, so we will know right away if the collapse is improving with each option or if we should try the next one. If things don't improve with all three, we will be re-considering intubation over the weekend. This is hard for us, as Casey's anatomy makes it progressively harder to extubate with each procedure and as she gets older.

We also got the results of the abdominal and chest CT scan from Monday. Surgery is officially off the table right now. Even if Casey's lungs were healed, her anatomy and organ size/positions create way too much risk. The result doesn't surprise us, but it is easier to take since her GJ tube seems to be doing it's job so far.

Thanks to Cappy and John for bringing us lunch today and visiting with Casey. Another meal outside the cafeteria makes us very happy!

Rollercoaster

We are up then we are down, then up again, then down again. So stressful. Last Wednesday Casey had a wonderful xray. Then Thursday it looked collapsed again. Casey worked hard all weekend. Each day her xray looked a tiny bit better. On Sunday her xray looked a lot better. We expected this mornings xray to be awesome. We were all shocked when we heard it has gone back to collapsed. We will see what tomorrow brings.

Casey has been slowly going up in her food rate. The target is 25cc/hr. She is on 21 right now. They are going up 2 every 4 hours. She should be at her goal rate by morning. This is pretty big. Once she can get all her nutrition via tube we can stop some of her IVs. The only IV she will have left will be her morphine.

Casey had her CT done late today. We expect to hear the results some time tomorrow. There is talk (nothing planned yet) of another care conference before the long weekend. The plan is to get everyone back together to review all the tests/procedures from the past few days. Then we should be able to really set out a good plan for moving forward (both long and short term plans).

Right now the focus is still on her lungs. Other than the care conference there is not much more we will have this week. We expect it to be pretty quiet up here for the holiday.

We hope everyone has a wonderful holiday weekend. We will post more as we get results and plans.

Day Off

Casey has been pretty busy. She has had 3 procedures in the past 3 days (PIC on Wed, Upper GI Thur, and her GJ placed yesterday morning). All 3 were hard on her. She did great though. Tim had to step out but they let me stay with her for the GJ. It took a while. She stayed really calm the entire time. There was a little bit at the end where she started to get worked up. I did not realize it then, but soon found out it was poop not the procedure.

Since we were gone in the morning to get her procedure done her daily chest xray ended up being really late yesterday. It was so late that the doctors never even came by to talk about it. We did track down someone that took a look for us. It was pretty much the same as Thursday. We were hoping it was going to be more like Wednesday's improved image. This morning they came by and took an image around 5AM. Again, it looks pretty much the same.

We are spending the weekend just focusing on breathing treatments and respiratory interventions. Hopefully we can see an improved lung by Monday. Until then they are not rushing the CT scan.

We were expect the CT to be done on Monday. This would have given us 2 days to get GI and Surgery together to talk about the findings. However if they put it off until later next week we may have to wait until after the holiday weekend to really talk about it. Casey would get more recovery/rest time so maybe the test would end up going better that way. I don't know. Part of me really just wants answers. The other part does not- the part that knows there are some serious decisions that come after.

Casey is resting right now. She had a pretty tough morning. Something was bothering her. We have no idea what it was. She started feeding (very slowly) in her J port last night. It's possible some of this mornings issues were related to digestion. It could have been pulmonary pain too. So hard to know.

Sanjoy and John came by to see how she is doing. They brought us lunch too (yum!). We have been so burnt out on take out and the cafeteria here. We were so excited to see home cooked food. Thanks John & Sanjoy (and Aruna who had to stay home sick).

The next couple of days we may not have much to post. As we make progress on her lung and get closer to the CT we will let everyone know. She may start getting a little non-aggressive bedside PT and OT today or Monday too. It will be nice for her a little range of motion and stretching in.

Upper GI & More...

Casey had a pretty rough night and morning. She seems to be having some tummy issues. She HATES poops. She usually has just one a day. Between 8PM yesterday and noon today she had 5 or 6 (a lot for her). each one got her a little more worked up. Between that and the aggressive pulmonary/respiratory stuff she was not a happy girl. Sadly, a bad night and morning were reflected in her xray today. It is not as bad as it was before, but it is worse than yesterday. The doctors are worried that she is headed back in the wrong direction. The respiratory treatments have been stepped up a little more today. Luckily they worked it so that she gets them all at once now and then gets a break in between.

Casey is resting now. She was up all night. Shortly after lunch she finally started to settle down. She seems much more comfortable now. Of course at the height of her discomfort is when all the doctors come by, but what are you going to do. It seems like everyone showed up at the same time today too. She had the xray tech getting the last GI picture, a bunch of doctors, respiratory therapists, her nurse with medications, some people from PSA (our home nursing agency) and a big poop. To top it all off- this happened 10 minutes after Tim left to go pick up something for us to eat. It was a crazy in here for a while today.

At 8AM Casey had an Upper GI with bowel trace done. They put some barium in her tummy and took lots of pictures to see how everything is working down there. Of course with an already upset tummy this was not the smoothest nor easiest procedure. She got through it and we were able to stay with her the entire time. The doctors just stopped by to discuss the results. Casey refluxed almost immediately when they gave her fluid. This makes the doctors very weary on feeding her through her tummy. They were talking about trying to give her some food in her gtube over the weekend. Now they do not feel that is safe for her (especially with her lungs already weakened).

It looks like we may be placing a GJ tube in the morning. This will allow Casey to get some food. Instead of going into her stomach it goes in at a later point of digestion (the Jejunum aka small bowel).

We still need to get a CT scan done of Casey's abdominal cavity. We have to wait for the barium they gave her today to fully get out of her system. Ideally we would have preferred the CT first then the GJ but it looks like the barium has changed the order a little for us. Our current plan is to get the GJ done tomorrow. Then use the weekend to continue to make progress with Casey's lungs as well as to slowly start feeding her. Then Monday we should be able to get in for the CT. After the results of the CT we will sit down with GI, Surgery and probably a few others to discuss our options, risks, benefits, etc. I am sure Tim and I will need to sit on that information for at least a day or two. Hopefully we will be able to make the decision next week and then start working toward what ever it may be. Of course, if anything should come up over the weekend this plan could change completely.

They took some of Casey's tummy contents to the lab. They are checking her acid levels. She has been on antacids forever and they want to see how effective they are. They just sent the sample off so I have no idea how long that test will take. I am not sure how much of an impact this will have on the big picture. It is nice to see if we are over/under medicating her though.

Casey had a surprise visitor today. Her Water Therapist, Margaret, came by to say hello. It was really cute. Casey was just laying here half asleep half awake. When she heard Margaret say hello she perked up and threw up her hands to greet her. I think Casey misses the pool :(

We will post more tomorrow after the GJ is done. As always, thanks for keeping our little princess in your thoughts and prayers.

Moving Forward

Casey had a good night. They started her on what is called BiPap. This machine is designed to force pressure into her lungs on every breath. She started this yesterday (2 hours on 4 off). In addition she was getting VERY aggressive breathing treatments.

This morning they came to take the usual morning xray. All of the doctors, nurses, therapists, etc came by to tell us how happy they are. Casey made a lot of progress last night. They feel that her left lung has finally opened back up. They actually compared it to some old xrays she had taken a while back and say that this current one looks better than her previous baseline. Yah!!! We were hoping for some good news today.

Casey is still getting te BiPap (3 hours on and 3 hours off now). They have relaxed a little on the breathing treatments. I imagine that if tomorrows xray looks good they will start to back off on BiPap as well.

Shortly before lunch Casey went to have her PIC line IV repaired. They did not have to poke her again, but they did have to do quite a bit of work. She was gone for about an hour and a half. She did really good. Her nurse and respiratory therapist went with her (we were not allowed). Now that Casey's PIC is in the correct spot she can started getting her nutrition again. She has been on maintenance fluids for the past couple of days.

Tomorrow she is scheduled to have an Upper GI with bowel trace done. This is the first in a few test that we will be doing to get a better picture for the way we need to approach/correct the pain and feeding issues.

We will try to post more tomorrow after the PIC. Thanks again for everyone's kind words, thoughts & prayers. Keep them coming :)

Closer to a Plan

We had a big meeting today with the entire team taking care of Casey - GI, pulmonary, palliative, ICU, nursing, surgery, etc. We asked a friend of ours to sit with Casey so that we could both participate in the meeting (Thanks, JH). There were about 15 people in a conference room going over our options, of which there are only two. Although both of these are to fix her problem eating, we primarily have to consider potential increase/decrease in overall pain, as well as risk to her lungs.

One option is to place a tube below Casey's stomach (in the jejunum part of her intestine), so her food bypasses the stomach. We tried this at UCLA once and it didn't work at all (actually put her at greater risk of pneumonia). However, our situation has changed now as without it we may have nothing, since it is too painful for her to eat with her stomach right now. So even though we really don't think this will work the second time around, we may still try. Casey's anatomy is much more complex now, which leads us to believe there is less of a chance that it will work, but we still need to consider it. The doctors have ordered some tests (such as an upper GI with bowel trace) to make sure she is a candidate in case we do need this option.

The other option is to fix the surgery Casey had when she was 1 month old, as well as repair the large hernia she now has at the border of her chest. This would be a serious surgery, but a successful outcome would mean she could still use her stomach and not reflux into her lungs. We should also be able to feed her at a higher rate / fewer hours per day. Unfortunately, she has some anatomical problems (like the progressively worse shape of her chest) that may not make surgery reasonable. Like the first option, there are some tests that need to be done to confirm if she is a candidate (such as a CT scan).

Even with the tests above, our primary concern continues to be Casey's lungs - she has a number of respiratory treatments around the clock to address her lung collapse. The xrays have looked about the same for last few days, but she seems to be breathing a little better, so we are hoping tomorrow's xray will finally look better. While we are focusing on her lungs, we still need to line up the tests above so we are ready to go with one of those options when the time is right.

Vibration Vest and More

The respiratory team has Casey using a special kind of vest that hooks up to some air pumps that vibrate her chest quickly from all sides. This is suppose to help her lung heal, and she seems to be tolerating it pretty well. With as much as she hates vibrations riding in the car, we were surprised but happy she is doing so well.

Casey has had some nose bleeds today, which we are watching very closely. It is probably just from the high flow oxygen, but in any case it's dangerous for her if the blood gets in her lungs so we are being careful.

Casey's old nurse Maritza stopped by to see her during lunch break. They used to read a lot together, and they even got to read a book. Casey got very calm and focused during her story, even though she wasn't having a good day before that. It was great to see them together again and I tried to take a pic with my phone.

Surgery is still on hold while Casey's lung heals. The doctors have prepared us for a longer stay, so I have a taken a leave of absence at work.

We'll post more details when we have time...

More details

Things have been crazy here, but we'll try to give as many details as we have right now. We brought Casey back to the hospital on Thursday because her GI bleeding had returned and her pain was not manageable, even with our greatly increased medications. The only thing that relieves her pain is turning off her food, which we obviously can't do at home. When we got to the hospital, they did a standard chest xray and found that in addition to her GI problems, her left lung had started to collapse. With all of Casey's medical issues, combined with having general anesthesia for her endoscopy last week, it made sense that her lungs have been under additional stress. This is exactly the reason we are very critical of any procedure for her, as she is at greater risk for developing problems.

The doctors have added some additional medications and respiratory therapies to address Casey's lung, which seem to be working in the last 24 hours. She is also on low dose morphine for her pain, which she loves. They placed a PICC line today into her arm since we will be here for a while. She will get all her nutrition and medicine through this, as well as daily blood draws.

The plan is to keep her on IV nutrition at the hospital while her lung heals. After we make progress there, we will try to restart feeding slowly in her g-tube (similar to before we went home last week). Also, when she is healthier, we can do some more tests to progress on surgical options.

Back in the Hospital

Casey is back in the hospital. We are not sure how long, or what all we will need to do. She is comfortable right now. She had a pretty good night. We expect to talk with the doctors this morning to get a plan in place. As we get more information we will post. We just wanted to let everyone know that she is back in the hospital. She went in for the same GI and pain issues she had previously. Please keep her in your thoughts and prayers. We will post more soon....

Home - For Now

After a very tough week we are finally home. We have a TON of appointments we have to coordinate over the next couple of weeks. Casey was finally able to get some food down and her pain under control (and no more bleeding) enough for them to let us fight the rest of the battle from home.

In order for Casey to eat we are having to keep her pretty heavily drugged. One of the many new drugs we are giving her is supposed to help some of her stomach and related issues heal as much as possible. The rest of the drugs are to manage pain. We hope that the healing drug will start to show some progress soon. The idea is that as it heals we should be able to slowly back off on the pain meds. Casey also had to come home on a little oxygen, but we hope her lungs should be ok without that soon.

While we are working on Casey getting stronger, we will be scheduling follow-ups with most of her doctors. We have to work with her medical team to determine what steps to perform next. We know there could be significant surgery in the near future. We are guessing it would be done before the end of the year. We just have to weigh all of the benefits and risks with her doctors to determine the best approach and timing. Once Casey is strong enough, we could be headed back, probably for a much longer stay in the hospital.

No one likes to be in the hospital, but Dell Children's does a really good job. There were a few hiccups through out the week. Overall the stay went as smooth as possible and the doctors, nurses, etc were all great.

This next week is going to be tough. We are still trying to find then will have to train a new nurse. Also we have to completely redo Casey's feeding and medicine schedule to fit in all of the changes. Some of the drugs require us to stops feeds for 2 hours. We also have to make a lot of calls and coordinate a lot of appointments. Regardless of how tough this week will be, I am sure it will be better than last. At least we are home now. I don't know who is happier to be back out of the three of us.

We will keep everyone posted as Casey continues to recover and we make progress in the steps. Thank you again for everyone's thoughts and prayers this week. We still need them so please keep them coming.

Some Progress

Casey had a much more comfortable night (lots of drugs) and we have started her back feeding. The plan is to slowly increase food and decrease what she is getting through IV. We haven't suctioned any more blood in a while, so at least the acute areas seem to be doing better. Hopefully today we can continue to make progress.

Tough Day

Last night and today have been trying. Casey isn't responding well to her food and pain medications, so we have been working continously with her doctors to find the right balance of everything. Her blood work and xrays still look fine, but she has been very upset, and her heart rate and oxygen levels are not so good. For now any kind of surgery is on hold until we get these things under control.

Scope done

Casey did great today - the only hiccup in the procedure is she lost her first tooth during intubation, but it was already very loose.

They found a lot during the scope that we still have to discuss with surgery. The fundoplication from when she was 1 month old has failed and her g-tube placement has "drifted" towards her ribs as she grew, causing bleeding and some other issues. Redo-ing that surgery may be the best route, but we have a lot to consider.

In the hospital

We are at Dell Children's Hospital - Casey has been admitted due to some bleeding either in her throat or stomach.

She has an endoscopy scheduled for 10:30am - they will have to intubate. After we have those results, we will figure out next steps. Surgery sounds likely, but the specifics depend on what they find today.

We appreciate all the thoughts and prayers sent to Casey. We will pass along updates when we can.

Halloween

We hope everyone had a fun Halloween this year. Casey has been having a hard few days. Her tummy has been upset up off and on since Thursday really early morning. She had 2 costumes this year. We were going to wear one on Thursday to water therapy then the other on Friday to OT. The costume she liked best she was going to wear again on Saturday for a play date we had planned.

We ended up canceling water therapy due to her tummy hurting. Then on Friday we found out that OT was not actually scheduled yet. Saturday she was doing a little better, but still had some tummy stuff off an on. We decided not to push her so we canceled her play date too. All 3 of her dress up events ended up not happening.

Last night we let her pick between the Purple witch or Minnie Mouse. She picked Minnie Mouse. We got her dressed up and she was doing pretty good. We got the camera and stuff out to take pictures and by the time we had everything ready she had a pee pee diaper. That was the end of the dress. She was done wearing. We had to get her diaper changed and out of the dress in order to calm her down. She HATES dirty diapers. After she calmed down we were able to get her to wear the ears a little longer so we got a few pictures.

We had a new nurse start with us on Wednesday. She was really nice. I tried so hard to make it work. She just didn't seem to fit what we need. It did not help that Casey wasn't feeling well. Either way though, she just wasn't the right nurse. We get really irritated when nurses won't listen. She refused to listen to anything I said. It was just getting more frustrating by the minute. I did not think Friday was ever going to end. She won't be coming back. Hopefully we can find someone soon.

Tim and I talked about the awful diapers some. We both think they are just the worst. We have decided that it is worth the extra cost to go back to the Pampers we used to have. We switched back yesterday. All of us are very happy with this change.

Maybe when Casey is feeling better she will let us get her back in costume for some more pics. Until then she will just be a naked Minnie Mouse :)

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).

Here We Go Again

UGH!!! Many months back Tim and I went round and round with our insurance company. They kept denying Casey's nursing care. They said that she did not need it (WHAT!!?). We had to collect very detailed letters from ALL of Casey's doctors and we had to write letters ourselves as well. The issue went back and forth for over a month. Everyday we spent HOURS on the phone trying to get things straightened out. We were told that most likely once we went through all of that and finally had it all straight that we would not have to do it again. Well, this morning Casey's nursing service called to tell me that once again they are denying her care.

Here's the good news; since we have Medicaid for Casey now things like nursing (or whatever) that our private insurance denies can be covered my Medicaid. Last time we went through this we did not have a plan B, at least this time we do. We still have to get it resolved. I just don't feel quite as stressed this round.

The timing could not have been funnier. We had Casey's case manager her yesterday afternoon going over all the admin stuff. While he was doing the mountain of paperwork he made a comment that I keep playing in my head today. He said Casey has more stuff going on, and requires more interaction and care than a lot of his other patients that have a lot MORE hours. After he said that he went on to say that we should qualify for more.

I have to get her current hours covered again before I can even begin to think of more hours. It sounds fabulous though. Anyway, I have made a few call this morning. Now we wait. Our insurance should get back to us soon to tell us why it was denied and the course of action they suggest we take. Then we will take that info and start over again.

There is always something. I hope that we can get this one resolved a little quicker this time around.

One of Those Days...

I think I maybe should have stayed in bed today. Casey has a pretty full day so I got early to get dressed and try to get a head start on things. After I got dressed I REALLY wanted some coffee. I got it all ready, pressed brew and stood back to wait for my cup. WRONG!!!! I put the lid on wrong (I do this a couple times a year) and the beans get backed up and clog the line then the water backs up then I have a huge mess all over the counter and the maker. Ugh. I spent 30 minutes (that I did not have to spare) cleaning up the the mess then finally brewed another pot.

Once I finally had my coffee I had to get on the phone with Maxim (our nursing service). I had to call them to discuss the Ann situation. Luckily they have a person in mind that they are going to try and get out here soon for us to meet. Maybe even this afternoon. I do feel a lot better now that I have gotten Ann off the schedule.

After I got off the phone I had just enough time to help Angela get Casey ready for her Ortho appointment. Casey was really tired and slept the whole way there. Shortly after we got there Casey started getting all worked up. We were suctioning nonstop. I was in such a rush this morning to get out of the house on time I forgot to change her Scopolamine patch. I think the one she had one wore out and she was just a little faucet.

In between suctioning we noticed a little girl across the aisle that was wearing a scope patch as well. I started talking with her mom and it was really interesting. Her daughter (Kennady) is actually doing a lot of the same things as Casey. She is 8 and did not have to be suctioned all the time like Casey but other than that they had a lot in common. They have been trying to work with Botox and patches, she had a gtube plugged into to what looked like the same pump we use, she even wore a pink dress to her appointment. Casey was not having a good morning so we didn't get to chat too much. We did exchange contact info though. Hopefully we can get together sometime or at least stay in contact. They are from San Marcos so I don't think we can see them often, but hopefully we can see them sometime. It is so rare to see anyone with as many things in common as Kennady had with Casey.

When we went back to the exam room we decided to do a deep suction. The patches have made her mouth and throat VERY dry. When we did the deep suction there was a bit of fresh blood in her throat. Never a good thing. We got her cleared out then gave her some time to see if the bleed would clot. We had to do this a few times before the bleeding seemed to stop.

The doctor came in and overall that part went well. We are going to add OT in her outpatient plan there at the hospital. I hope we can get it the same day as water therapy so it can be one trip. The OT that we see will be able to get us a different type of hand splint as well. I hope we can find one that will work on both Casey's hands and oral stuff.

Casey was really upset the entire way home. We stop to talk with Kennady and her mom a little on the way out, but Casey was just so upset. We got her loaded up and got home as quick as we could. Once we got her home and settled in we gave Casey her Tobi (breathing treatment). The Tobi is 28 days on 28 days off. We just started her on round yesterday evening. A few days before she starts a round she gets pretty junky. It is amazing how quick these treatments kick in. You can hear her lungs clear up as you give it to her.

Casey was supposed to have PT this afternoon, but after her morning we decided to reschedule. PT thankfully was able to move to Friday. Now we will spend the afternoon trying to get her to relax instead of working her right back up again.

I think that is about it for now. As always, we hope everyone is well.

The Nursing Saga Continues

We have been training and working with 2 new nurses over the past month. Angela comes Wed-Fri then we have Ann Mon-Tue. Angela is the one I was really worried about. On her 3rd day she pulled out Casey's gtube. I was so worried that she was not going to be worth keeping. She actually has turned out to be good. She is MUCH more careful now and has been doing a really good job. Ann started out great. I really thought Ann was going to be wonderful. I was way off on this one.

The situation with Ann is crazy. She started out great and every day that she is here she gets worse. I have never seen anything like this before. Most people get better at things the more time they spend doing it. Ann makes more mistakes and forgets things all time. I have to show her how to do the same things over and over and over again.

I have told her exactly how to position Casey to reduce leaking with her tube and keep her comfortable. She keeps doing what I have specifically told her NOT to do. The absolute worst positions for Casey. So of course, her tube is just a mess after Ann has been here. There has been 2 occasions this week that Casey has started to fuss, then built up to screaming in pain. Ann just sits there looking at her. When we step in and take her away. Ann is like "Oh, was that a bad sound?" She doesn't seem to get it.

I feel like I have to spend more time watching her today than I did on her first day here. I need to be able to leave Casey in her nurse's care without having to step back in every 5 minutes. I am going to call and get a new nurse for Monday and Tuesdays. We can not keep her.

"Casey Erin Barnes Supplemental Needs Trust"

I wrote MANY months back about having to take Casey to stay at a nursing home for one night. It was a horrible experience and really put a lot of things into perspective for us. Mainly, that we want to do everything humanly possible to avoid having Casey ever end up in a place like that.

You may be trying to remember why we went there to start with. States offer Medicaid, but usually just for very low income levels. Thankfully, many states (including Texas) have chosen to adopt exceptions for severe cases. These are often referred to as Rider 28 or Katie Beckett Waivers (after the little girl who inspired with law). Each state has different guidelines, and in order for Casey to qualify, she had to have more than 3 disabling diagnosis, be examined by a state nurse, provide letters of medical necessity, and finally she had to stay 1 night in a state certified (there were only a few to choose from) nursing facility. While at the facility, the staff monitored Casey's care and condition then signed off on her severity.

Once in the program, Casey's continued eligibility is based on her income rather than the income of the household. This is a really big deal. With Medicaid combined with our private insurance, we are able to do a lot more for Casey. The even bigger deal is that if anything were to ever happen to our existing insurance, Medicaid would take over for Casey. Tim and I will have to figure something out for ourselves, but at least she will be covered.

Now the trick is that in order to keep her covered, she can not have an income. It's not like she can go get a job, she is only 3, so we aren't worried about that. However she can not have money paid directly to her. If she were to directly get a sum of money it would disqualify her for medical coverage. This is so scary to us.

After doing a lot of research, Tim and I spent the past couple of months working with an Elder attorney that specializes in supplemental needs trusts. These are hard to find, but worth every penny when you consider the cost of us not having something in place. Now that we have a trust for Casey, if anything were to happen to Tim and I, Casey could still use the funds from our life insurance and also continue to receive Medicaid for health insurance - since we name her trust as the beneficiary, instead of Casey directly. Tim and I are not leaving her a ton of money, but the amount that we have in life insurance for her would be enough to get her disqualified for Medicaid coverage if we left it to her directly. Then if that's not bad enough, if she is disqualified she would have to use any money we leave to pay her medical expenses, which would be gone in a year or so max. Then she would be left with nothing. We can also use the trust now for other reasons, like when we do fund raising for some of her treatments.

We just can not bare the thought of her ending up in a place like we had to stay a while back. We just signed all the papers of her trust a few days ago (we even took Casey with us to the signing) - what a huge relief. We feel so much better knowing this is in place. We can't say enough good things about the Greening Law Firm here in Austin, TX. I know people love to bash lawyers, but these guys really surprised us - they get it.

Gloves & More

Casey wears splint or gloves on her hands that are designed to keep her hand and thumb open instead of in a fist. She has had to wear some version of these since short after birth. You can see some of her baby NICU pictures with little blue plastic ones. The first set were to open up her fingers. The first pair did not do much at all for her thumbs. Later we moved to a neoprene model that was focused on opening her thumb and did not really do much for her fingers. When Casey is relaxed or sleeping she is pretty good about getting her fingers open so we figured that the focus should be on the thumb if we have to choose one. Casey has been wearing McKie Splints for years. They are easy to use, easy to clean, affordable, etc. Just before she switched from ECI to MISD (Arpil) ECI wanted us to try out a new splint that would focus on her thumb, fingers and even wrist. Sure, why not.

We had them measure Casey's hands, fingers, wrist, etc and order the gloves. We got them right as she switched to the school district. We tried to use them a few times after we got them but they just seemed off. The fingers sit on this big board like paddle and they are so massive. Casey can not do anything with her hands while in the gloves. Usually they are designed for kids to wear all day. There is just no way with these that we could ever get her to go more than 20 minutes. We finally called the company that ordered them and took her back up today to get them refitted. They remeasured and told us that the gloves are SUPPOSED to fit like that. What an awful design.

We had to go out in the rain to get to the appointment. Then the building was totally impossible to get to. We had to circle all around and go hunting for the actual suite. Then they told us that the glove was designed to be unusable basically. So frustrating. We have decided that next week when Casey goes in for her Orthopedic follow-up we are going to see if they can order us better ones. I am pretty sure they are going to want to do new AFO's as well so maybe we can get them all done in one sitting.

Casey's vision teacher/therapist and occupational therapist are going to start coming again next week. Still no word from Speech. I liked ECI so much better than the school for therapies. They worked all year and were so much better about scheduling and setting goals and stuff. I think I need to find another source for Casey's therapies. The school can be extra but I don't think they are working out as her primary source.

Casey had a GI appointment last week. Things went well. She weighed 29lbs. A few weeks before she was only 27 for her Neuro appointment. I told the GI doctor that I was really worried because she had lost weight and so I was trying to push her food a little to make up for all the leaking. He said that the aggressive rate we have been hitting for her is a good amount and to keep her on it. He also said not to worry about the 27 from Neuro. He said that they are not exact in weights and that it may have been off a little. He also warned that we be sure not to get her on the heavy side either. Such a balancing act. We need her to gain weight and grow, but not too much.

I think that is about it for now. We have a few more appointments and another round of Botox this month. I will post updates as we have them. As always, we hope everyone is doing well.

Lost Pet

I have seen people put up posters for lost dogs, cats, even birds but never a fish. I honestly don't know what happened to Casey's sucker fish. If I thought there were a chance for him to come back home I would put up the "Lost Pet" poster for him.

Every so often I have to give her fish tank a good cleaning. I went in to do this morning. I saw Al, the 2 shrimp, but could not find the sucker anywhere. I search in the plant, in the rocks, everywhere he likes to hide but he was nowhere to be found. I proceeded to clean the tank. After I got most of it done and still could not find the sucker I decided to dump it and start fresh. I moved the other fish to another location and went about pulling everything out of the tank. Still no sucker. Then I opened up the filter to see if he got sucked in, no. He is was just missing.

I decided that Tim must have found him dead and flushed him and just not mentioned it. So I asked and he said that he did not take the sucker out either. How does a person lose a fish?! It's not like he ran away, I don't think. The only other option we have come up with is that the beta (Al) must have eaten him. So weird.

Busy Day

We had a meeting with our lawyer this morning. We have been working on setting up our wills, and a trusts for Casey and all that good stuff. Today was our final meeting. We had to go in, review all the final drafts, and sign a bunch of stuff. We decided to take Casey with us. The first half of the meeting went great. Casey was so calm and content to just hang out in her chair. Then about half way through I don't know if she just got bored, if it was too hot, not sure what caused it but Casey had had enough. She was so mad. Then a little later and she had a big wet diaper to go with it. We were very happy to sign the final paper and get her back home.

After we had been home for about 30 minutes Casey's nurse came in. She had just enough time to get all of Casey's vitals then help me load her back up. Casey had water therapy this afternoon. She did great today. Margaret was able to get some really good stretches with Casey's arms and legs. Casey yelled some, but overall she cooperated pretty well.

After therapy we got Casey loaded into the car, again, and started home. Before I pulled the van out of the parking spot Casey was sound asleep. She slept the entire way home. When we got back home I picked her up to carry her in to the house and she barely even noticed I was moving her. She was so worn out from her busy day. She slept for a good hour.

Shortly after Casey woke up a delivery person from a new vendor was here. We are trying out a local vendor for Casey's suction equipment. We got a new (stationary- not portable) machine for the bedroom. It is a little quieter. We will try it out tonight. There are a few items that they did not bring yet. If they get us the rest of our order soon and everything looks good we will stick with them.

Casey has been using the scopolamine patch for just over a week now. So far so good. She seems to be a bit drier and we are suctioning a little bit less. We still need to watch her for a little while, but so far so good.

That's about it for now. We are still working on nursing. We have one that is working 3 days a week. We still need to find one to pick up the other 2. I really hope to get this person in place and trained soon. We are also still waiting on Casey's therapists to set up the new schedules for this semester. As always, we hope everyone is doing well.

Much Better

So Friday was a bad day, Casey's nurse pulled out her tube and things were just really stressful. Then Monday came with a new nurse and things just seemed to go from bad to worse. I was so frustrated with the nurses by the end of the day Monday that I didn't even know where to begin to try and correct/better things.

I called the nursing service after the nurse left on Monday and told them the situation and that we were done with her. They started looking for more nurses for us right away. The only good thing that came out of Monday was a new secretion idea. She asked if we had ever used Scopolamine patches. I had never heard of this before. She said another patient she had used them to help reduce secretions and they helped this other patient a lot.

I did some research on Monday into the patches. It is kind of interesting. They are supposed to block/reduce neuro signals from the brain that generate saliva. It seems like the are most commonly used for other things, but if they work and we can avoid a huge impact from the possible side affects they are definitely worth a try.

Casey has 2 appointments yesterday (Neuro and ENT). Nancy was with us so at least I knew I had a nurse that knew Casey and that I trusted going with me. We went to Neuro first. Nancy and I were talking before the doctor came in and I asked her to be sure and remind me to ask about the patches when the doctor came in. It was so funny, the doctor came in and I am not kidding one of the first things out of her mouth was "Have we talked about the patched for Casey". We talked some about possible side affects and decided to go ahead and see how Casey does with them. Tim picked them up from the pharmacy this morning and Casey has one on now. It said it takes about 4 hours to see it work. Her 4 hours is up in about 30 minutes. We will see how she does this evening. The patch is one patch every 3 days. The doctor said I can change it more often if I need to or I can add additional patches (or halves) if I need to.

The doctor also went ahead and got Casey on the schedule for the September Botox rounds. We will be going in on 9/28 for her next round. We are supposed to see what we can do with the patches between now and then. If we can get the patches to help with the secretions then she can use more Botox in Casey's legs. If the patches don't work then she will use the majority of the Botox in her salivary glands again.

After Neuro we drove on to ENT. Casey had to get her Cholosteoma cleaned out. It was not to bad this time. She cried some, but not as much as the past few times. The doctor said it still needs to be watched but that it is stable. So not good, but also not bad.

The only negative from Casey's appointments yesterday was that she has lost some weight. I guess I was not totally surprised. She has been so leaky that I am sure she has lost a decent portion of the food we give her. I was sad that she lost weight, but not shocked. We just have to get this leak fixed and she will get back to putting on weight soon.

Nancy and I were talking about Casey's leaky tube (that is so much worse since Friday's incident). Nancy mentioned another patient of hers has the same problem. The other patient went into the hospital over night to have the tube taken out and an NJ Tube put in to allow the gtube stoma to heal a little. Just like Casey, there is never a good opportunity to take out the gtube since it is almost always in use. This sounded like a really god idea to me. This would be SOOO much better than having to have the entire gtube redone (major surgery). I called her surgeon to talk about possibly doing this.

This morning Casey's friend, Maya, and her mom, Elizabeth, came over to play. Casey loves to have friends come over. They live about an hour away so it is hard to see them often. It is always nice when we can find a way to see them though. We are going to try and plan a weekend trip for them to come over so Jason (the dad) can come too. Hopefully we can do that sometime soon.

After our play date we had a nurse come over for a meeting. She seemed really good, I liked her right away. She has some other stuff going on this week but will hopefully start working with us on Monday. For now they are looking to give her Monday and Tuesday, possibly Wednesday as well. I was so glad that she seemed to be a good fit.

I just got off the phone with Casey's surgeon. She liked the NJ idea for Casey. However before we go tot hat step we are going to try one more step here at home. They are going to send us a Foley Cath tube to use that will be much thinner than her tube. Casey had a Foley for the first few weeks after the Gtube surgery way back when. We will put it in then dam it up with gauze and what not and leave it for 24-48 hours. Hopefully that will help the stoma close up a little so that when we go back to her Gtube the stoma is a much tighter fit around the stem. Then if this is still not enough, then we can look at doing the NJ as the next step. Either way, both of those ideas sound fabulous when compared to having the Gtube completely redone. I am very happy to have some new options to work with.

That's about it for now. I guess that is actually a lot for a post. As always we hope everyone is doing well. I will post more about nurses and Gtube leaks as we go. Hopefully I will have good news to post.

Nursing Woes

Oh man, it is so hard to get the right nurse. We interviewed/met a bunch over the past month. Out of them all there was 2 that I really liked and 1 that I was on the fence (just couldn't read her in our meeting). We hired my favorite (Michelle) but sadly Michelle is a school nurse and was only available for 2 weeks then had to return to her main job.

Second was Angela. Angela started on Wednesday and worked Wed-Fri last week. I like her, but she is not perfect. She is a little careless and that scares me a lot. The first few shifts that a nurse is here I am right by their side the entire time to be sure that I show them how things work, what to look for, listen for, etc. On the 3rd day (Friday) I backed off some. I was home, but in the other room most of the time to let her go mostly on her own. Around lunch time I heard the dreaded "Oh, no" coming from the play room. It was shortly followed by a "Marty, can you come quick?" Neither of those phrases are ones I like to hear. I ran to the play room to find that she had not been paying attention and had sat on Casey feed line. She scooted back to get a toy and took the line with her, hence pulling the tube right out of Casey's stomach. UGH!!!! I was so mad. I yelled some about how she needs to be careful and pay more attention. I went on to tell her how important it is so always be aware of EVERYTHING when dealing with special needs kids. A small mistake can lead to huge trouble so quickly. She felt awful and apologized over and over again. I know she did not do it on purpose. However, it was an accident that could have and should have been avoided. We had Casey at home and in our care for over 3 years before I did that. This was her 3rd day!!!! I know accidents happen, but she has to be more careful. I did not send her home. I will give her another chance. If she remains to be careless and inattentive to these things I think we will have to start looking for yet another nurse.

My 3rd choice in nurses was Manuela. I could not get a read at all on her so she was on my maybe list. She was supposed to come for a shift last week (Tuesday) but called in sick on her first day. This was not a good sign, but these things happen. We had a nurse a while back that was supposed to start. She called in sick on day 1 then on day 2 she called the office and said the drive is just too much and she won't be coming ever. Manuela's day 2 is today. I was told she would be here from 8-4. At 8:30 she was still not here so I called the office. They told me there was a scheduling miscommunication and that she would be here at 9. Okay, I don't have the details on this so I won't hold it against her. She got here at 9 and seemed mad to be here, kind of a weird vibe. I went ahead and started showing her how things work around here. She doesn't seem to agree/approve of how we do things. Everything that I show her for Casey she has given me a condescending look after I give her the instructions. She has already started with the tracheotomy questions (not knowing anything about the situation). After she asked about it and I said the simple, no we do not want that for her the benefit would not be worth it for us she gave me this look like she thought I was crazy. I then had to go on with more explanations that still were not enough for her. She forced me to get into the quality of life details and things that are really none of her business. I do not need to deal with this. My original maybe on her is quickly becoming a no. I could not read her before, but the vibe I am getting from her today just is not a good one at all.

I guess for now we just have Angela. I need to keep interviewing more to find someone to fill my other shifts. Manuela is not the person for the job. Just 3 more hours and her shift is done. I am looking forward to the end of this shift. I will be asking that she not come back.

Nancy is here tomorrow. We like Nancy; she was Casey's backup nurse for the past 8-9 months. We just found out that tomorrow is her last day in home health so we lost her too. I need to find another really good nurse to split the week with Angela. If I like the other nurse better maybe I can give him/her the majority of the shifts and have Angela as a backup. Either way, I need to get some more nurses over to interview.

Latest Updates

What a month it has been. We had a ton of appointments this month but I have rescheduled them all since we have not had nursing in place. Maritza left us the last week in July. We had Michelle for 2 weeks. Michelle had just started to get used to taking care of Casey when she had to go back to her other job with the school. UGH!!! The service we use for nursing sent a few out but none that we loved. Finally last week they sent out one that was a good fit. FINALLY!!! Her name is Angela and she started yesterday. Casey seems to like her. The only thing is that she has another job as well so she can only work 3 days a week. So we still need to find another nurse to pick up at least 1 more day a week. Hopefully we will find someone for that extra shift soon. Next week Angela has some other stuff that she has to do so next week we are back to no one (just for the week though). This week, then starting the week after next we will have 3 shifts (Wed, Thur, Fri) each week. We are trying to get someone to pick up Tuesday. I really miss Maritza and just want to get back to a normal routine. Casey has another nurse that works from time to time to fill in for her primary nurse. She picked up a few shifts each week after Michelle left. She will be here at least 1 day next week. However, I just found out today that next week is her last week. She no longer wants to work home health. I am hopeful that we will find another filler to take Tuesdays and cover when needed.

We start a round of doctor appointments soon. I am sure we will be talking about trying the next round of Botox soon too. I will post updates as we get them. Casey is doing well. As always we hope all of you are doing well too.

Fun Stuff

Isaiah came over with his parents for a little while this evening. Casey really seemed to like him. She has always really taken to boys. It's kind of funny. She likes to play with little girls too, but she really shows off when little boys are around. She was looking around and talking to him. Tim was holding her and she was even bending her legs a little. After they left I asked her if she wants him to come back soon and she gave me a big YES. I was really glad we finally got to have them over for a bit. Hopefully we will get to see them again soon.

Busy Girl

Yesterday Casey had a play date. Her friend Anjali came over with her mom, Rhitu, for a little while. I of course did not think to grab the camera. Casey seemed to have a good time. Anjali was so sweet, she would show Casey the toys. When we suctioned Casey she wanted to help her. It was very cute and very sweet. It is so funny how much kids change in such short time periods. We saw Anjali a while back (maybe a year) and she was quiet and shy and then yesterday she was so chatty and just funny. Hopefully they can come over to play again soon.

Casey has water therapy today. Then tomorrow she has Isaiah coming by to play.

We have been training a new nurse this week (Michelle). She is really sweet. The sad thing is that once she is trained she is leaving us. She is just with us for a few weeks and then she goes back to her normal job as a school nurse. We should have some more candidates come out this week and next. I really hope we find a good full time person soon. I look forward to getting back to a normal schedule.

That's pretty much it for right now. As always we hope everyone is doing well.

Graduation

What a big day!!! Casey's nurse, Martiza, came over around 10. It was so sweet. She brought Casey a "Congratulations" balloon and a dozen yellow roses. Casey LOVES balloons & yellow. Very very sweet of her. After she got here we got Casey ready to go. We all headed to the celebration just before 11. There were about 8-10 kids that graduated today with Casey. It was so cute. The had diplomas, little cap & gowns and everything. We have a few other pics and even some video that we need to upload but here is a quick one of the 3 of us. The celebration was really cute. They had a cake and drinks, and took lots of pics of all the kidos. I think Casey had a good time. It was Maritza's last day as her full time nurse (she is still with us, just not full time now). I was glad we were able to do something special with her today. The timing worked out great.

After we got home Casey was so tired. She slept for a little while then some friends of ours came over. They brought their cameras and we had an afternoon photo shoot. It is too hard on Casey to try and take her to a photo studio so this was the next best thing. They got lots of really good pictures. Hopefully we will get them all processed and uploaded in the next week or so (as well as the rest of her grad photos). Keep an eye on her Flickr page for updates.

Hair Do

So a long time ago I tried to cut Casey's hair myself. It did not go well. I swore that I would never do it again. It was just to hard to hold her up with one hand and cut with the other. I used to cut my sisters hair all the time. I gave them some really cute cuts. But I am just not able to do Casey's hair (and no, having Tim hold her is not an option). I called a local Cool Cuts 4 Kids and talked with one of the stylists there. After I explained that Casey needs a haircut, but that she is not really mobile she agreed to come to us. She came by and Casey did really good. She took off a few inches. I think Casey will be much cooler now. She gets so hot and sweaty with all that hair on her neck and back. Now we just need to style it and she will be all good to go.

No Play Date :(

Casey and her friend had to reschedule yesterday evening play date. Isaiah had a running nose and started sneezing so we decided to play it safe and reschedule for another time.

It is actually kind of an interesting story - very small world. Last October we took Casey to a Halloween party for the ECI group at Easter Seals. While we were there we met a few kids. One that we remembered was dressed as Caesar. He was so cute and just learning to walk. We talked with his mom a little before we had to leave the party. Then a few weeks ago I got an email through the contact us link from a guy I used to go to school with. He told me about his son and sent me the link to his page. I replied back and told him that his story reminded me of the little boy from Halloween. Anyway, long story short, that little boy was his son. He was not at the party, just his wife. It really is a small world. Maybe next week we can try again.

Casey does not have much more going on this week. We are still waiting to meet some nurses to possibly/hopefully work out as Casey's new primary day nurse. The end of this month is going to be here very quickly so we need to get that done.

Fun Stuff

Casey's boyfriend and his family from California came over to visit last Friday. It was so nice to see them while they were in town visiting. He was not feeling well so Casey and him just took it easy while he was here. We had hoped to catch up with them later in the weekend before they had to get back too. We had a bunch of other stuff going on so we ended up having to skip the other stuff. It was so great to see them. I brought down the camera to take pics, but forgot to turn it on and take any. I am so bad about that.

Casey had water therapy on Wednesday. That was her only appointment this past week. It was nice not to have to go to a bunch this week.

We did get some bad news. Maritza (Casey's primary nurse) has decided to take a full time job with her church. I am sure I would have made the same choice in her shoes. It is still very sad that we are not going to be able to have her full time any longer. She still wants to come by for a few hours each week. I am sure Casey will be excited when she comes by; we are all going to miss her a lot. We should start meeting possible candidates this week. Maritza will be with us through the month. A month used to seem like forever but it goes by in the blink of an eye now a days. I hope we can find someone that Casey really takes to. It may take a few tries (like last time) but I am sure someone is out there for us.

I got an email from a friend of mine yesterday saying she was going to be in Austin this weekend. She and I have been trying to get together since I got back to Texas. It finally worked out this time. She came over this morning with her 2 girls (Emily -7 and Ally -3). We spent the morning here with Casey. After word she and I took her girls to the pool and Chuck E Cheese. We had a fun day. Casey got to hang out with her daddy (even better than Chuck E Cheese). The pic above was before we headed out.

Casey has had lots of friends come by in the past few weeks. She loves to see her friends. She has another friend coming over Tuesday evening for a little while. Tuesday's friend is a new friend. I will post more about that play date later this week. As always we hope everyone is well. Have a happy and safe 4th of July!