After a lot of discussions, we have the doctors agreeing with us that Casey is better off continuing her recovery out of the hospital, so we brought her home today. She is so much happier with all the noise and people bothering her and wires all over the place. She is already moving around a lot more and is more vocal than she was in the hospital room.
They have sent us home with oxygen and a couple of new medications, and we are hopeful that she will not need them for too long. We also have a followup with a pulmonary specialist soon to look further into her apnea, although it has decreased a lot in the last couple days.
Monday, March 26, 2007
Friday, March 23, 2007
Out of ICU
Good news - we have finally been moved out of ICU and into a normal room. It looks like if all goes well we will be going home next week. Casey is still having problems with apnea, but the pneumonia seems to be almost gone, and she is much more comfortable since a few of her lines have been removed.
Tuesday, March 20, 2007
Off the ventilator, seizures, apnea
Well, finally yesterday they decided to try Casey off the ventilator, since she had a couple days of lab work and chest xrays getting better. Since they took out her tube, she has been having a lot of trouble keeping a consistent saturation of oxygen in her blood - nothing extremely low, but below the comfort zone for the ICU doctors.
After a lot of different tests and therapies and positions tried, a nurse noticed a pattern in Casey's breathing linked to her desaturation. After changing some settings, we saw that every 4 minutes Casey would stop breathing for 11 seconds. Since she normally takes very shallow breathes, this is very hard to to see, but it is definitely apnea. After she starts breathing again, her oxygen saturation jumps back up to almost 100% and the cycle starts over.
Now their attention has turned to why this is happening. There are different theories, such as Casey having difficulty clearing some of the narcotics given to her, which are common to sedate babies on ventilators. Another possibilty is that seizures are triggering the apnea, since the brain stem does control breathing and Casey's damage at birth covers pretty much her whole brain. Or, the apnea could be caused by something else.
The doctors will be continuing to do tests to figure this out. We have to be at the hospital for at least another week while Casey finishes her antibiotics, starts her feeding by tube instead of the current IV, and just generally get stronger.
Thanks for everyone's support - we will keep you posted on what we find out!
After a lot of different tests and therapies and positions tried, a nurse noticed a pattern in Casey's breathing linked to her desaturation. After changing some settings, we saw that every 4 minutes Casey would stop breathing for 11 seconds. Since she normally takes very shallow breathes, this is very hard to to see, but it is definitely apnea. After she starts breathing again, her oxygen saturation jumps back up to almost 100% and the cycle starts over.
Now their attention has turned to why this is happening. There are different theories, such as Casey having difficulty clearing some of the narcotics given to her, which are common to sedate babies on ventilators. Another possibilty is that seizures are triggering the apnea, since the brain stem does control breathing and Casey's damage at birth covers pretty much her whole brain. Or, the apnea could be caused by something else.
The doctors will be continuing to do tests to figure this out. We have to be at the hospital for at least another week while Casey finishes her antibiotics, starts her feeding by tube instead of the current IV, and just generally get stronger.
Thanks for everyone's support - we will keep you posted on what we find out!
Thursday, March 15, 2007
Back in UCLA ICU
As many of you know, Casey was taken to the UCLA Medical Center on Monday after having difficulty breathing. They admitted and gave her oxygen while they waited for xrays and test results, which showed that she had an infection in her chest. Pneumonia has always been the biggest risk for children with severe HIE and reflux like Casey, so we were very concerned.
Over the last few days, her health got rapidly worse, and she is now on a ventilator with what is called Acute Respiratory Distress Syndrome. This is very serious, and the antibiotics and other drugs need to help clear her infection soon, although right now they have to use more generalized antibiotics due to none of the bacterial-type tests coming back positive.
We are staying with Casey all day and night, taking turns coming home for naps, which isn't too far away. She is heavily sedated as they are trying to keep her as comfortable as possible with all the procedures they are having to do. She has always been a tough little girl, and this is no exception. It always amazes us how strong she is with every visit to the doctors.
I have taken off work this week and will most likely need to put in for an extended leave or modified schedule, as it is unlikely that she will be discharged in the next 1-2 weeks. We won't be on email too much, so leaving a message on one of our cell phones will be the best way for us to get back to you.
Please keep Casey in your thoughts and prayers, and we will update as often as possible here.
Over the last few days, her health got rapidly worse, and she is now on a ventilator with what is called Acute Respiratory Distress Syndrome. This is very serious, and the antibiotics and other drugs need to help clear her infection soon, although right now they have to use more generalized antibiotics due to none of the bacterial-type tests coming back positive.
We are staying with Casey all day and night, taking turns coming home for naps, which isn't too far away. She is heavily sedated as they are trying to keep her as comfortable as possible with all the procedures they are having to do. She has always been a tough little girl, and this is no exception. It always amazes us how strong she is with every visit to the doctors.
I have taken off work this week and will most likely need to put in for an extended leave or modified schedule, as it is unlikely that she will be discharged in the next 1-2 weeks. We won't be on email too much, so leaving a message on one of our cell phones will be the best way for us to get back to you.
Please keep Casey in your thoughts and prayers, and we will update as often as possible here.
Monday, March 05, 2007
Busy Week
We have quite the busy week this week. Tim bought a new Nissan Quest (minivan) to help with transporting Casey. We have been trying to take her for rides to get her used to it. So far she seems much happier in it than she ever was in the Xterra. I was sad to see the Xterra go. That was the longest I ever had a car. Last week, not even a week after we bought the new car, vandals broke into the garage and really did a number on all the cars (15-20 total). They slashed pretty much all of the tires (included all 4 of ours). They keyed may cars, they sprayed the cars with the fire extinguisher, and they pounded on some cars. Luckily we only had a small scratch and4 flat tires, and the fire spray that washed off. Some cars were really bad. The tires have been replaced. We are glad to have it back, but so disgusted with the entire situation.
Casey's PT went on maternity leave last week so she started up with her temp PT today. Her normal PT will be back in 6 months. The new PT seems like she will be pretty good. She didn't work with Casey yet, she just spent some time getting to know her and her history this morning.
Tomorrow Casey has an MRI in Beverly Hills. They had to sedate her, which means she will have to get an IV. She hates IV's, and I don't blame her. With her tight muscles, and little veins they always have such a hard time starting a line. Hopefully they can do it in less than 3 sticks this time. It just breaks my heart to watch her get poked so much. She had a follow up EEG last week (pictured above), and we will meet with her neuro next week to discuss the results of both.
On Wednesday she sees her pediatrician in the morning to get her RSV shot. Then we head to UCLA for her GI clinic. She is getting so close to 15 pounds. I am sure GI is going to be so excited for her.
On Thursday Tim and I are taking her to Children's where a group of Ortho's will be reviewing her case. We hope to get some good ideas for a progressive plan moving forward.
Then on Friday she has her first working session with her new PT. Some of the things we talked about this morning will be sure that she continues with all the work the previous PT was doing. However, she has some new ideas to try out as well.
We don't have it scheduled yet, but most likely it will also be on Friday, Casey will have an OT visit. We are hoping to get these moved up to weekly rather than bimonthly. Her new PT mentioned trying to get some vision therapy started as well. I didn't even know there was such a thing, but anything that could possibly help sounds good to me. She also suggested acupuncture (which oddly enough just last week Casey's respit nurse also mentioned). There is a technique that one of the specialist Casey sees for orthotics has done called Cranial Sacral Therapy. Casey responded really well to this, so when the new PT brought it up I agreed that it sounds like a good idea. So maybe we can get some of these new therapies started up in the next few weeks. Now that Casey is going to GI once a month instead of week, she has a lot more flex in her schedule.
I will try and post next week after things have calmed down some. Until then, we hope everyone is doing well.
Casey's PT went on maternity leave last week so she started up with her temp PT today. Her normal PT will be back in 6 months. The new PT seems like she will be pretty good. She didn't work with Casey yet, she just spent some time getting to know her and her history this morning.
Tomorrow Casey has an MRI in Beverly Hills. They had to sedate her, which means she will have to get an IV. She hates IV's, and I don't blame her. With her tight muscles, and little veins they always have such a hard time starting a line. Hopefully they can do it in less than 3 sticks this time. It just breaks my heart to watch her get poked so much. She had a follow up EEG last week (pictured above), and we will meet with her neuro next week to discuss the results of both.
On Wednesday she sees her pediatrician in the morning to get her RSV shot. Then we head to UCLA for her GI clinic. She is getting so close to 15 pounds. I am sure GI is going to be so excited for her.
On Thursday Tim and I are taking her to Children's where a group of Ortho's will be reviewing her case. We hope to get some good ideas for a progressive plan moving forward.
Then on Friday she has her first working session with her new PT. Some of the things we talked about this morning will be sure that she continues with all the work the previous PT was doing. However, she has some new ideas to try out as well.
We don't have it scheduled yet, but most likely it will also be on Friday, Casey will have an OT visit. We are hoping to get these moved up to weekly rather than bimonthly. Her new PT mentioned trying to get some vision therapy started as well. I didn't even know there was such a thing, but anything that could possibly help sounds good to me. She also suggested acupuncture (which oddly enough just last week Casey's respit nurse also mentioned). There is a technique that one of the specialist Casey sees for orthotics has done called Cranial Sacral Therapy. Casey responded really well to this, so when the new PT brought it up I agreed that it sounds like a good idea. So maybe we can get some of these new therapies started up in the next few weeks. Now that Casey is going to GI once a month instead of week, she has a lot more flex in her schedule.
I will try and post next week after things have calmed down some. Until then, we hope everyone is doing well.
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