Wednesday, December 3, 2008
Tuesday, March 11, 2008
March 10, 2008
On Timmy's 5th birthday, (one day after daylight savings started) Caitlyn and I woke up super early to go down to Long Beach for a pulmonary follow-up. She had a chest x-ray and then we went to the outpatient pulmonary clinic to see Dr. Chin. The x-ray showed vast improvement of her right upper lobe with just a trace of consolidation? left. Actually, Dr. Chin didn't explain what was actually still there, but on the x-ray, there was still a light patch of "haziness" in that area of her lung. However, the big whited out wedge was no longer there. That was good news. For the time, she will continue on Albuterol (now an inhaler instead of the nebulizer) and Flovent twice a day. We will return in about a month and Caitlyn will do a pulmonary function test to see if she still has any breathing impairment. No more x-rays!
On Wednesday, we will go back to Miller for a follow-up with Infectious Diseases. I'm not really optimistic that they will have anything new to tell us, but we'll see.
On Wednesday, we will go back to Miller for a follow-up with Infectious Diseases. I'm not really optimistic that they will have anything new to tell us, but we'll see.
Saturday, February 23, 2008
Home, at long last!!!!
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
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
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.
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