Well, we are happy to say that we are finally home! God had one last (huge) lesson in patience for us before we were able to leave Miller Children's Hospital, but nevertheless, we slept in our own beds for the first time in weeks last night. :)
Caitlyn spent the last day at the hospital in isolation as they were waiting for a stain of the mucous sample to come back from the lab. They wanted to be certain that she did not have tuberculosis. She also had a chest x-ray to see how much the procedure improved the blockage to the lung. The chest x-ray showed a good enough amount of improvement for the okay to go home, although, the doctors had been optimistic that it would have opened up even more. There is still a good sized area that remains blocked, but her lung function is pretty much optimum, so there was no problem in letter her go home.
We will continue to have follow ups in the next months to be sure the lung continues to clear. The lab cultures take a while to grow, so we will hopefully find out in the next few weeks if there was another infection on top of the mycoplasma pneumonia that was making Caitlyn so sick. For now, she is considered not contagious and can return to school on Monday.
Caitlyn will be doing some respiratory therapy from home, but otherwise, it's back to the daily routine. She is still sleeping right now (8:00) but I'm sure she is very happy to be home.
So, about our adventure last night... The doctors came by around 2:00 in the afternoon yesterday and let us know that Caitlyn would need to get some prescription medications as well as a nebulizer (to administer them) and that then we could be discharged. I started to call around to different pharmacies, but could not get in touch with one that had the nebulizer. A "case manager" at the hospital came to our room and offered to set everything up for us so that a private company would bring the nebulizer and medications to our room and I wouldn't have to go through the trouble of locating them myself. I was happy to let her do that, of course, and we were told that they would probably arrive sometime in the late afternoon/early evening. Thus began the wait... At around 6:30 I started to wonder where the stuff was and asked the nurse. She phoned the vendor company, but they would not commit a time that the products would be delivered. She said that if they did not come by 8:30, she would call back and make sure it was on its way. The shift changed and we got a new nurse who called at 8:30 to find out what was taking so long, but she could not get in touch with an actual person and she had no information for us. We were very tired and frustrated at this point because David and driven with Kylie all the way down to Long Beach and Kylie was getting restless. By 9:45, we were finally put in touch with the on-call doctor who said she would try and figure out what was going on. She talked to a rep from the vendor who promised that the stuff would be delivered within the next hour. An hour and 15 minutes later, the nebulizer finally arrived... without the rest of the medications. We ended up having to go the pharmacy and waiting another half hour for our medications. At just about midnight, we finally left the hospital, frustrated and weary from the waiting. We don't know where the communication break down occurred, we didn't really have anyone to vent to. All the nightshift nurses really didn't know what was going on because they weren't around when the initial orders were placed. Anyway, it was not the happy "going-home-from-the-hospital" experience that we had anticipated, but the most important thing is that we did go home!
Thanks everyone, for your prayers. This is a time of our lives that we will never forget, because of all the love and support we have experienced.
With this chapter of our life coming to a close, it's time to move on to other things, like Kylie's fever and cold... It never ends. :P
Saturday, February 23, 2008
Thursday, February 21, 2008
B-day continued...
Caitlyn's bronchoscopy was mostly uneventful and straightforward. She was pretty upset about it beforehand and needed a bit of a sedative. But soon after, she calmed down and fell asleep, even before getting the anesthesia.
The pulmonologist was able to remove a significant sized mucous plug that basically had stopped up that whole part of the lung. With its removal, the lung should be opened up pretty nicely, now. They will do another chest x-ray tomorrow to be sure. The mucous will be sent to lab for culture. The one surprising finding was that there were some bumpy lesions on her bronchus that looked a little like tuberculosis. The pulmonologist explained that the bumps could be anything, really; a bacterial infection, tb (or similar bacteria), or even just allergies. The culture should clue us in. For the time being, though, Caitlyn has been confined to a solitary room. This is a huge blessing for us! It has been hard spending nights with a loud and miserable little toddler in a semi-private room. He threw up all over the place last night and the room smelled awful for over an hour. Now we have a private room with its own bathroom, shower, and plenty of space. Plus the guest fold out bed is much roomier. Because she is possibly infectious, they request that our doors are always closed. It's nice and quiet in here.
We may get to go home tomorrow, because she is, overall, doing very well. If her lung is nice and clear, she can just go home and wait for the bacteria culture to come back and tell us if she needs more antibiotics. This is finally the light at the end of the tunnel! It was a long tunnel, but we were so uplifted by all of the prayers of our family and friends. Thanks for your support! We love you all! We look forward to writing the last blog tomorrow or the next day. Praise God!
The pulmonologist was able to remove a significant sized mucous plug that basically had stopped up that whole part of the lung. With its removal, the lung should be opened up pretty nicely, now. They will do another chest x-ray tomorrow to be sure. The mucous will be sent to lab for culture. The one surprising finding was that there were some bumpy lesions on her bronchus that looked a little like tuberculosis. The pulmonologist explained that the bumps could be anything, really; a bacterial infection, tb (or similar bacteria), or even just allergies. The culture should clue us in. For the time being, though, Caitlyn has been confined to a solitary room. This is a huge blessing for us! It has been hard spending nights with a loud and miserable little toddler in a semi-private room. He threw up all over the place last night and the room smelled awful for over an hour. Now we have a private room with its own bathroom, shower, and plenty of space. Plus the guest fold out bed is much roomier. Because she is possibly infectious, they request that our doors are always closed. It's nice and quiet in here.
We may get to go home tomorrow, because she is, overall, doing very well. If her lung is nice and clear, she can just go home and wait for the bacteria culture to come back and tell us if she needs more antibiotics. This is finally the light at the end of the tunnel! It was a long tunnel, but we were so uplifted by all of the prayers of our family and friends. Thanks for your support! We love you all! We look forward to writing the last blog tomorrow or the next day. Praise God!
Thursday, B-day!
Hi Everyone! It's Thursday, and we were hoping this would be our last day at the hospital. Probably not, though. Caitlyn is scheduled for a bronchoscopy at 1:00 this afternoon. She is worried about it, plus she's really hungry because she has been fasting since last night. Please pray that she will learn to trust in God in the midst of fear and the unknown. She is a strong little girl, even though it doesn't always show. I know God is doing a good work in her.
The "bronch" should be straightforward and quick, because the area of infection was relatively small. The pulmonologist guessed the entire procedure would only take 10 minutes. She will continue to have respiratory therapy for today, and then they will do another chest x-ray tomorrow. The bronch is meant to look into her bronchus and then, they kind of flush out the gunk, if possible. That should clear away the mucous plug that has been stuck in the lung since the pneumonia began. Complications are quite rare. The most significant complications have more to do with the anesthesia, rather than the bronchoscopy.
I'll update later this afternoon to let you know how the procedure goes. If all goes as planned, she'll be nice and cleaned out and can go home tomorrow or Saturday. :) Thanks for praying!
The "bronch" should be straightforward and quick, because the area of infection was relatively small. The pulmonologist guessed the entire procedure would only take 10 minutes. She will continue to have respiratory therapy for today, and then they will do another chest x-ray tomorrow. The bronch is meant to look into her bronchus and then, they kind of flush out the gunk, if possible. That should clear away the mucous plug that has been stuck in the lung since the pneumonia began. Complications are quite rare. The most significant complications have more to do with the anesthesia, rather than the bronchoscopy.
I'll update later this afternoon to let you know how the procedure goes. If all goes as planned, she'll be nice and cleaned out and can go home tomorrow or Saturday. :) Thanks for praying!
Wednesday, February 20, 2008
Wednesday, Feb 20
Miller Children's Hospital is bustling with activity and noise. It's a little overwhelming at first, but we're getting used to it. Caitlyn has been doing more aggressive respiratory therapy with new drugs (inhaled steroids, like I mentioned before). It's hard to know if the therapy has resulted in any improvement yet. I'm not sure if there will be a chest x-ray today or tomorrow. It sounds kind of likely that they will end up doing the bronchoscopy, but you never know.
Caitlyn had gotten really tired of being in the hospital and wanted to go home. However, today, we found that there is a game and activity room here, and now she's happily painting and playing. I'm not so sure she'll want to leave, now. :)
I've spoken to a ton of doctors (mostly residents as this is a teaching hospital) and I am starting to see that Caitlyn's pneumonia/atelectasis (collapse) was a lot more severe than I had initially thought. People keep saying how shocked they are to see how well she is doing based on the x-rays. God has really protected her and minimized her pain and discomfort. We feel so blessed that it's really not been that bad of an experience for us.
Thanks again, for all of the support.
Caitlyn had gotten really tired of being in the hospital and wanted to go home. However, today, we found that there is a game and activity room here, and now she's happily painting and playing. I'm not so sure she'll want to leave, now. :)
I've spoken to a ton of doctors (mostly residents as this is a teaching hospital) and I am starting to see that Caitlyn's pneumonia/atelectasis (collapse) was a lot more severe than I had initially thought. People keep saying how shocked they are to see how well she is doing based on the x-rays. God has really protected her and minimized her pain and discomfort. We feel so blessed that it's really not been that bad of an experience for us.
Thanks again, for all of the support.
Tuesday, February 19, 2008
Tuesday, Feb 19
I started my Physics class at PCC today. A bit overwhelming, especially considering that I can hardly concentrate on school right now. Oh well...
Anyway, Caitlyn had a rough night at Miller. (Actually, David did. Caitlyn probably slept ok.) They shared a room with a very sick, very miserable toddler boy. He cried most of the night. Poor thing...
Anyway, I have not been to the hospital yet, so here is what David has told me so far:
Caitlyn will be on inhaled steroids (yeah, she'll get buff!!! j/k) for the next 2 or so days. This should open up the airways and help some of the gunk to get loosened up. They don't want it to come out in big clumps that could clog another airway, though, so it'll need to be monitored. She will have regular respiratory therapy including wearing the dreaded "vest." Caitlyn really hates the vest but all the doctors say she needs it, so she'll have to deal with it for the next couple of days. It basically shakes her up real good. Most adults think it would be relaxing (think massage), but it's a little scary for Caitlyn, and it's not exactly comfortable.
After 2 days, they will do another chest x-ray. If it shows improvement, she can come home! She'll be all done with hospitals! If no improvement, she will need to have the bronchoscopy. So, for the time, there is more waiting...
This morning, I heard "Everlasting God" on the radio. I like the song, but it has become familiar and commonplace to me. But today,it got me thinking about what it means that "strength will rise as we wait upon the Lord." What does it mean to wait upon the Lord? Does it mean serving Him, like a waiter? Or does it mean that as we're waiting for God to do something (like answer prayer), that's when He gives us strength? That seemed to make sense to me. I'm still not exactly sure of the context, but I do feel that God has graced us with extra strength, peace, and calm as we continue to simply wait for Him to move. Thanks again, to everyone for your prayers.
I will probably not be home until Thursday, so unless David updates, the next post will be then. We'll have a better idea of what is going on.
Anyway, Caitlyn had a rough night at Miller. (Actually, David did. Caitlyn probably slept ok.) They shared a room with a very sick, very miserable toddler boy. He cried most of the night. Poor thing...
Anyway, I have not been to the hospital yet, so here is what David has told me so far:
Caitlyn will be on inhaled steroids (yeah, she'll get buff!!! j/k) for the next 2 or so days. This should open up the airways and help some of the gunk to get loosened up. They don't want it to come out in big clumps that could clog another airway, though, so it'll need to be monitored. She will have regular respiratory therapy including wearing the dreaded "vest." Caitlyn really hates the vest but all the doctors say she needs it, so she'll have to deal with it for the next couple of days. It basically shakes her up real good. Most adults think it would be relaxing (think massage), but it's a little scary for Caitlyn, and it's not exactly comfortable.
After 2 days, they will do another chest x-ray. If it shows improvement, she can come home! She'll be all done with hospitals! If no improvement, she will need to have the bronchoscopy. So, for the time, there is more waiting...
This morning, I heard "Everlasting God" on the radio. I like the song, but it has become familiar and commonplace to me. But today,it got me thinking about what it means that "strength will rise as we wait upon the Lord." What does it mean to wait upon the Lord? Does it mean serving Him, like a waiter? Or does it mean that as we're waiting for God to do something (like answer prayer), that's when He gives us strength? That seemed to make sense to me. I'm still not exactly sure of the context, but I do feel that God has graced us with extra strength, peace, and calm as we continue to simply wait for Him to move. Thanks again, to everyone for your prayers.
I will probably not be home until Thursday, so unless David updates, the next post will be then. We'll have a better idea of what is going on.
Monday, February 18, 2008
Monday, February 18th
Well, Caitlyn left Methodist Hospital today! Not quite what we were hoping for, though... She has been transferred to Miller Children's Hospital in Long Beach. After a couple of days without chest x-rays or blood work, we were looking forward to going home, as Caitlyn seemed to be gaining strength and appetite back. Unfortunately, this morning's x-ray showed that the collapsed lung had not improved as expected. The collapsed lung has had the doctors scratching their heads and they felt that the time had come for her to get more specialized care that could not take place at Methodist.
David went with Caitlyn to Long Beach this evening and will, hopefully, be calling me with an update of what's going on. There is a good possibility that she will have a bronchoscopy tomorrow. If so, we'd really appreciate your prayers. She is very nervous about it. We will know, in a short time, what other options for treatment are available, also.
I'm sorry that my postings don't seem very specific or organized. I'm not sure I even understand what's going on. Different doctors and nurses have told me so many different things that I don't know what to believe. But I trust that God is working through all of this to do something great and I rest in that hope.
This has been a difficult two weeks, and we have been carried on the prayers of our family and friends. I almost feel like I can't ask for more help at this point, because people have helped out tremendously. However, we are in a time of need and I was wondering if anyone would be willing to help out with Timmy and Kylie at some point during the next week. I start a new semester at PCC tomorrow (my class is from 8:30 - 12:00 on Tues/Thurs). If anyone could help watch them I would be so grateful. They have been needing some attention lately... (example: Timmy gave Kylie a haircut in the closet the other day. yikes!)
Please call me or David if you'd like to help out with this. Thanks so much!
David went with Caitlyn to Long Beach this evening and will, hopefully, be calling me with an update of what's going on. There is a good possibility that she will have a bronchoscopy tomorrow. If so, we'd really appreciate your prayers. She is very nervous about it. We will know, in a short time, what other options for treatment are available, also.
I'm sorry that my postings don't seem very specific or organized. I'm not sure I even understand what's going on. Different doctors and nurses have told me so many different things that I don't know what to believe. But I trust that God is working through all of this to do something great and I rest in that hope.
This has been a difficult two weeks, and we have been carried on the prayers of our family and friends. I almost feel like I can't ask for more help at this point, because people have helped out tremendously. However, we are in a time of need and I was wondering if anyone would be willing to help out with Timmy and Kylie at some point during the next week. I start a new semester at PCC tomorrow (my class is from 8:30 - 12:00 on Tues/Thurs). If anyone could help watch them I would be so grateful. They have been needing some attention lately... (example: Timmy gave Kylie a haircut in the closet the other day. yikes!)
Please call me or David if you'd like to help out with this. Thanks so much!
Saturday, February 16, 2008
Saturday
It was a fun day at the hospital as we had lots of visitors and another day of amazing support and encouragement. Caitlyn's Uncle and Auntie surprised us by driving all the way from San Francisco to visit! And we had other relatives that travelled a good distance to see us, too! It was such a blessing. Caitlyn's room is overflowing with gifts, cards, balloons, and flowers. Thanks again, everyone! Thanks to Dave and Shelby, too, for spending time playing with Timmy and Kylie. They have felt a little neglected and they really enjoyed their time with you!
I'm not sure when the thank you notes will eventually be in the mail, but I did want to acknowledge now how blessed our family has been!
As far as Caitlyn's pneumonia goes, she no longer is having daily x-rays or blood tests. They are watching for the fever to not return, making sure her appetite is increasing and that she's walking around. Her "breathing sounds" are increasing which means that, hopefully, on the day we go home, the chest x-ray will show some improvement. If it doesn't, they will be monitoring her progress for a few weeks. If, after that time, she still isn't clear, they may have to do a bronchoscopy. We'll see.
We're trying to just be patient with all the "waiting and seeing." It's been frustrating to not have any conclusive test results. The doctors still are not completely sure what caused the infection (possibly more than one organism.) They are also running some tests just to be sure her immune system is functioning well. They don't seem to agree when she will be able to go home, although they all have seen significant improvement in the past two days.
We are thanking the Lord for watching over Caitlyn and asking Him what He's trying to teach us through it all. He has shown His goodness and faithfulness by providing us strength, rest, and support. He is a good God! :)
I'm not sure when the thank you notes will eventually be in the mail, but I did want to acknowledge now how blessed our family has been!
As far as Caitlyn's pneumonia goes, she no longer is having daily x-rays or blood tests. They are watching for the fever to not return, making sure her appetite is increasing and that she's walking around. Her "breathing sounds" are increasing which means that, hopefully, on the day we go home, the chest x-ray will show some improvement. If it doesn't, they will be monitoring her progress for a few weeks. If, after that time, she still isn't clear, they may have to do a bronchoscopy. We'll see.
We're trying to just be patient with all the "waiting and seeing." It's been frustrating to not have any conclusive test results. The doctors still are not completely sure what caused the infection (possibly more than one organism.) They are also running some tests just to be sure her immune system is functioning well. They don't seem to agree when she will be able to go home, although they all have seen significant improvement in the past two days.
We are thanking the Lord for watching over Caitlyn and asking Him what He's trying to teach us through it all. He has shown His goodness and faithfulness by providing us strength, rest, and support. He is a good God! :)
Friday, February 15, 2008
Friday, February 15
Caitlyn had a good day yesterday and is feeling even better today. Her appetite is slowing coming back. (She looks so skinny right now!) The doctors want her to be fever free for 48-72 hours before going home so it sounds like Monday will likely be the earliest she can leave. Her fever this morning was only 101.5 (much lower than in the past) and she only had the one fever all day yesterday. Her blood test are showing a good deal of improvement as well. The doctor said she's "turned the corner" but they are being cautious to not letting her go home too early. It has been a very complicated case. The infectious disease specialist thinks that she actually has a "walking pneumonia" which is caused by the mycoplasm pneumoniae bacteria for all you academic people out there. Usually, walking pneumonia is very mild or even undiagnosed because people think they just have a cough and cold. So, it's puzzling why Caitlyn got so sick from it. But the treatment seems to be working, so at this point, they're thinking that this was the bug.
Chest x-rays did not come back when I was last at the hospital so I don't know if there was improvement with the collapsed lung. They seem to think she has a "mucous plug" in there that just doesn't want to be coughed out. (I know, sounds really gross.) She's supposed to be drinking lots of fluid and staying out of bed as much as possible. We take walks around the hospital several times a day and started climbing the stairs, too.
Caitlyn continues to have respiratory therapy. She's had some very animated and quirky therapists! You can ask her about that if you want... :)
Thanks again, for all of your prayers. We have a huge network of friends and family praying for and thinking about us. It's amazing to think that our family is being covered in prayer from San Francisco to San Diego, Arizona, Colorado, Kansas, Santa Barbara, and even beyond! God has been so good to us and we are so blessed by you!
Here are some pictures of Caitlyn at the hospital. She doesn't even look sick. She's doing so well. I'll update again tomorrow! Thanks for checking in! :)
Chest x-rays did not come back when I was last at the hospital so I don't know if there was improvement with the collapsed lung. They seem to think she has a "mucous plug" in there that just doesn't want to be coughed out. (I know, sounds really gross.) She's supposed to be drinking lots of fluid and staying out of bed as much as possible. We take walks around the hospital several times a day and started climbing the stairs, too.
Caitlyn continues to have respiratory therapy. She's had some very animated and quirky therapists! You can ask her about that if you want... :)
Thanks again, for all of your prayers. We have a huge network of friends and family praying for and thinking about us. It's amazing to think that our family is being covered in prayer from San Francisco to San Diego, Arizona, Colorado, Kansas, Santa Barbara, and even beyond! God has been so good to us and we are so blessed by you!
Here are some pictures of Caitlyn at the hospital. She doesn't even look sick. She's doing so well. I'll update again tomorrow! Thanks for checking in! :)
Wednesday, February 13, 2008
Wednesday Update
Caitlyn seems to be happier today and her fevers are becoming a little more spread out. (The Tylenol and Motrin seem to last a little longer between fevers.) She has been doing lots of respiratory exercises and "percussion" therapy. (think: bongos.) The discovery of a TV with Playstation and VCR helped distract her from her discomfort this morning. I would say today seemed like a pretty good day.
Medically speaking, though, things could be a lot better. Her x-rays have not been showing much improvement. Despite the findings yesterday that the collapsed lung seemed to be inflating better, the radiologist said that actually, it might have just been that the angle the x-ray was taken at made it appear to have improved, but it really hadn't changed. Either that or she has regressed since yesterday. She had a CT scan this afternoon, but unfortunately, it didn't provide the doctors with much new information.
We saw an infectious disease specialist today. He'll be exploring other possible explanations for the pneumonia.
It's been a bit frustrating that the doctors are stumped and can't figure out what's wrong with Caitlyn. However, I feel at peace about it because I know God likes to work out the things that are impossible for us to work out on our own. I trust He is working something good through this and I know He taking care of her.
Sorry this is going to be short, but I am wiped out and need some rest. Please keep checking back to see what's up!
By the way, though, I really wanted to thank everyone for their amazing support and love throughout all of this! Our family has experienced such an outpouring, it's impossible to describe! Caitlyn has been so lifted up and blessed by the visits, gifts, flowers, and prayers. We really wish we could express our gratitude, but words don't do it. Thanks so much!
I'll put some pictures up soon.
Medically speaking, though, things could be a lot better. Her x-rays have not been showing much improvement. Despite the findings yesterday that the collapsed lung seemed to be inflating better, the radiologist said that actually, it might have just been that the angle the x-ray was taken at made it appear to have improved, but it really hadn't changed. Either that or she has regressed since yesterday. She had a CT scan this afternoon, but unfortunately, it didn't provide the doctors with much new information.
We saw an infectious disease specialist today. He'll be exploring other possible explanations for the pneumonia.
It's been a bit frustrating that the doctors are stumped and can't figure out what's wrong with Caitlyn. However, I feel at peace about it because I know God likes to work out the things that are impossible for us to work out on our own. I trust He is working something good through this and I know He taking care of her.
Sorry this is going to be short, but I am wiped out and need some rest. Please keep checking back to see what's up!
By the way, though, I really wanted to thank everyone for their amazing support and love throughout all of this! Our family has experienced such an outpouring, it's impossible to describe! Caitlyn has been so lifted up and blessed by the visits, gifts, flowers, and prayers. We really wish we could express our gratitude, but words don't do it. Thanks so much!
I'll put some pictures up soon.
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