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 :)