Katie's respiratory therapist came in tonight for her nebulizer treatment. They take the oxygen tubes out of her nose for the treatments and the therapist noticed that Katie was doing really well without the oxygen during her treatment. She turned the oxygen machine down a little more, but also suggested we keep the oxygen tubes out of her nose for a while to see how she does.
She did OK for about 10 minutes. Not great. Not well enough for her to go home like that, but she was OK. After 10 minutes, her oxygen levels dropped so the nurse came in to check her foot monitor (that monitors the oxygen levels) and after talking to her for a while she agreed it would be OK to take the oxygen out for a while and see how Katie does without it. She's been off the oxygen for 45 minutes so far and she's doing OK. Again could be better, but not bad enough to feel the need to put the oxygen tubes back in. They even said when she goes home, her respirations won't be normal. They'll still be on the high end of normal, but good enough that she'll be fine with the meds and nebulizer treatments at home.
We've been really frustrated today with the on call doctor's report this morning and felt like he was not being aggressive enough with his recommendations. She's been doing great WITH the oxygen and 4 days to wean sounded like a really long time. He suggested that maybe it's RSV, but they swabbed for that when she came in on Monday and determined that it is definitely not RSV and that it IS pneumonia. We saw the pneumonia on the x-ray. So that right there let us know that he didn't even check her chart to see what all was done with her or what specifically is going on with her before making assumptions like that!
Andy's been saying for a day or 2 he thinks we should at least TRY to take her off the oxygen completely. I have to admit, that thought made me nervous and I thought that was a little to ambitious. But his reasoning makes sense... anybody who is couped up in bed for days will naturally start to feel bad. Even when I'm well and get lazy over summer break and lay around too much, I start to feel a little sick. Another point he had was that with the machines, she didn't NEED to work. Kind of like working out... if you don't work out regularly, your muscles get weaker. Makes sense, right?
Well we're on 45 minutes now without oxygen. She's sleeping so her oxygen levels and respirations (breaths per minute) should naturally go down while she's asleep. Her oxygen is at 94 (normal is 90-100) and her respirations are staying right around 40 (give or take 2-3 on either side.) Yes, when she's totally well, those numbers should probably be 95 and above for oxygen and in the 20s or lower 30s for respiration. But as long as the oxygen is in the 90s and respirations are around 40 or below for 24 hours without oxygen, I think that's what she needs to be able to go home!
Since she could be doing a little better while sleeping, we'll probably put the oxygen tubes back in when she goes to bed for good tonight and try again some more tomorrow. I still think we'll be here a couple of more days, but I feel very hopeful that we could finish weaning her off the oxygen tomorrow, monitor her for 24 hours and be outta here sometime on Saturday!
Thank you all for your encouraging words and most importantly your prayers. Please keep praying that she will continue to do well (and improve) without oxygen over the next couple of days so we can be home on Saturday or Sunday at least.
Thursday, December 24, 2009
A Discouraging Doctor Report
Today we had a different doctor come in to check on Katie. Since it's a holiday, it was the doctor who was on call. We were really hopeful to have a 2nd opinion and maybe he would see her numbers doing ok and order the nurses to try to reduce her oxygen a little quicker. No such luck!
He's going to do another chest x-ray today and based on what he sees there he might start her on another medicine. He looked a little discouraged too at her slow progress and said it will probably be at least 4 more days before we're out of ICU and able to go home.
That's Monday! Andy has to be back at work Monday so he's going to have to go back to Dallas Sunday while Katie and I stay here in Louisiana. I hate that he won't be here and know he will be so worried in Dallas while his baby girl is still so sick way over here in Louisiana. :(
I wish they could at least transport her to Dallas so we could be there with Andy.
He's going to do another chest x-ray today and based on what he sees there he might start her on another medicine. He looked a little discouraged too at her slow progress and said it will probably be at least 4 more days before we're out of ICU and able to go home.
That's Monday! Andy has to be back at work Monday so he's going to have to go back to Dallas Sunday while Katie and I stay here in Louisiana. I hate that he won't be here and know he will be so worried in Dallas while his baby girl is still so sick way over here in Louisiana. :(
I wish they could at least transport her to Dallas so we could be there with Andy.
Wednesday, December 23, 2009
A long roller coaster ride...
Today was the hardest emotional day for us. Katie's not getting worse but she's not getting better either. After last night we were so encouraged and hopeful for a speedy recovery but when we woke up this morning and her stats were the same I was so disappointed. The doctors assured me that doesn't mean she's going to have trouble recovering, it just takes a while for some babies. Even after she goes home she'll still be sick and will still need meds and nebulizer treatments for a while (maybe weeks.)They tried to start weaning her off some of the oxygen and oxygen flow today, but her stats were going down so they had to increase it all back to where they were this morning. So discouraging. Even with the pace they were trying to wean her this morning it was looking like it would be Saturday at the absolute earliest for us to take her home (to Memaw and Papaw's house.) Now that they weren't able to start weaning her I'm thinking we'll be here until at least Sunday.
Poor baby. She's on her 3rd iv! She keeps pulling them out. It's so heartwrenching to see your baby screaming in pain like that and not to be able to help them. The good thing is that she's alert and strong enough to fight like that. But it's really hard to keep her in bed. She rolls around and gets tangled in all her cords and pulls them out. She tries so hard to climb out of this hospital bed! Poor baby is really stir crazy!
I just want my baby girl back home and well. I want to sit on the floor with her and play with her. I want to hold her and rock her to sleep. She has too many cords right now so she can't get comfortable in my arms and the cords get tangled too. You can't see them all in the pictures here but besided the oxygen tubes in her nose, those tubes are connected to a big one on her back, she has wires on her chest, tubes attached to each foot, and her iv. She has 1 free hand with nothing attached and that's what she has to eat and play with. :( I want her happy little spirit back. We've gotten small glimpses of that happy little spirit here but not much. She very quickly remembers all those cords and just gets mad. I don't blame her. Anybody would hate al that stuff attached to almost every extremity of thier body!
On a brighter note...
Aunt Mindy brought her Christmas present up tonight and the LSUA police officers brought her some presents from their toy drive. That was so sweet and Katie was really happy to have some new toys to play with for a while. It was a wierd feeling to receive the toydrive gifts. We've donated gifts for things like that before but you never expect to be on the receiving end of it.
I talked to her doctor from home today. It was a relief to be able to talk to him and let him know what all has been going on. He's going to see Katie our 1st day back in town. We'll have more x-rays done at some point to follow up and see her progress. I think they'll do one before we leave here but I'm not sure about that. And we will definitely have one a month after she's released from the hospital to make sure it's all gone.So I guess we'll be spending Christmas Eve and Christmas Day in ICU. At least she's too young to know what Christmas is and when it's supposed to be. I think we'll have to call Santa and ask him to come back to Memaw and Papaw's house for a 2nd time after Katie gets out of here.
Tuesday, December 22, 2009
Tuesday Night
This girl is definitely feeling better. They have reduced her steroids from 4 times a day to 3 times a day. Her heartrate seems to be very slowly going down a little more. It's hard to tell because it fluctuates so much. And I think her respiration is still the same. Fluctuating a lot but mostly in the 50s. That's still a little high due to the pneumonia. The heartrate around 140s and not lower because of her having to work so hard to make her oxygen flow. As the antibiotics and steriods work to reduce the inflamation those things should come down even more.
Her oxygen tubes do 2 things...
1. gives oxygen (she's not needing much of this at all)
2. forces pressure to make the oxygen flow through her (this is the part she has the oxygen tubes for) She's having to work to get it flowing because her lungs are inflamed from the pneumonia. She'll have the oxygen tubes for a while but her pressure flow was set at 5 last night and they're trying 4 now. So far she's doing well.
I think the steriods are kicking in. I can tell she's feeling better because she has SO MUCH energy!!! She's got a good appetite and has eaten well and she's been sitting up talking, playing with toys in bed, and very active today. Especially tonight. This is a huge challenge because with all her tubes she can't get out of bed and walk around. She's trying to crawl out of her bed, trying to stand in her bed, and rolling all over the place. It's late and she hasn't slept much today so she should be sleepy but she's just rolling everywhere. She's not fussing (she was but not anymore.) Instead, she's rolling, hanging her leg over the side of the bed and swinging it and giggling. With all of her cords though, she gets tangled in them and has pulled her oxygen monitor off her toe at least 10 times today. These nurses are going to be so tired of us. LOL
This girl is not sleepy at all. It may be a long night, but so worth it. I would much rather sacrifice sleep because she's like this than to get good rest like last night because she was too sick to squirm or fight.
Her oxygen tubes do 2 things...
1. gives oxygen (she's not needing much of this at all)
2. forces pressure to make the oxygen flow through her (this is the part she has the oxygen tubes for) She's having to work to get it flowing because her lungs are inflamed from the pneumonia. She'll have the oxygen tubes for a while but her pressure flow was set at 5 last night and they're trying 4 now. So far she's doing well.
I think the steriods are kicking in. I can tell she's feeling better because she has SO MUCH energy!!! She's got a good appetite and has eaten well and she's been sitting up talking, playing with toys in bed, and very active today. Especially tonight. This is a huge challenge because with all her tubes she can't get out of bed and walk around. She's trying to crawl out of her bed, trying to stand in her bed, and rolling all over the place. It's late and she hasn't slept much today so she should be sleepy but she's just rolling everywhere. She's not fussing (she was but not anymore.) Instead, she's rolling, hanging her leg over the side of the bed and swinging it and giggling. With all of her cords though, she gets tangled in them and has pulled her oxygen monitor off her toe at least 10 times today. These nurses are going to be so tired of us. LOL
This girl is not sleepy at all. It may be a long night, but so worth it. I would much rather sacrifice sleep because she's like this than to get good rest like last night because she was too sick to squirm or fight.
Pneumonia!
Wow! What a holiday! Katie started getting sick last Thursday. We took her in to see her doctor on Friday and he said she has RSV. He gave her an inhaler and said it was fine to travel with her to Louisiana but that she would get worse before she got better. He said with her being a little older, she was not likely to be hospitalized with rsv although it was possible.
Saturday wasn't bad. I thought she was getting over it. Sunday was terrible. She woke up with a 102 fever and wouldn't eat or drink all day. Fever stayed around 102-103 all day, she was very lethargic, and she only had 1 wet diaper all day long. We were just about to take her to the new pediatric ER in Alex for dehidration when she drank some pedialite, had several wet diapers, and her fever went down. I probably should've trusted my mommy instinct and brought her in anyway.
Monday she woke up even worse. Fever 103.9 after 24 hours of motrin and tylenol alternating every 4 hours. Her fingers and toes started looking blue, and she was grunting when she breathed. Praise God for my sister in law and my nieces' pediatrician. She saw us right away and I found out Katie was sicker than I thought.
She was breathing 80 breaths per minute (40 is normal for her age), and she sounded (on the stethescope) like she was still wheezing and struggling to breath. The doctor described her as sounding "tight." She immediately said Katie should be admitted so we headed right over to the hospital. They ran tons of tests and determined she has pneumonia and she was moved into the pediatric ICU! I could tell it was bad because everyone was kind of frantic. Just all over the place with 3-4 nurses doing stuff to Katie all at once.
Her heartrate was up to 221 (normal for her age is about 95-140), her fever was still 103.8 (under the arm), her white blood count was 2500 (normal is 400-1200). When I asked what that means, they said it means she's a lot sicker than she looks and her body is having to work very hard to fight this off.
After an iv for fluids, steroids, and 2 antibiotics, tubes in her nose for oxygen, nebulizer treatments (1 per hour for 3 hours then every 3 hours since then), blood work to track her white blood count, blood preasure, heartrate, oxygen levels, and breaths per minute all being montiored 24/7, her numbers finally showed some improvements over night. From 8:30-about 1:00am Katie had nurses doing "something to her" almost constantly!
When her doctor came in to check on her today, she said Katie looks much better. She said she usually doesn't come in at night to check on her patients, but she was very worried about Katie last night. She said she had some sort of "bands?" or something that could be very, very bad! And because Katie's vitals were all over the place she was afraid Katie was going to "crash" on her last night. Praise God for taking care of her and how well she's responding to the medicine. I know the doctor feels good about her improvements or she wouldn't have told me all that. She said she was trying really hard last night to stay calm so we wouldn't panic.
It turns out it never was RSV. My doctor never tested to confirm that, he just assumed based on her symptoms. And apparently it's not uncommon to not test to confirm RSV. I think I would like to find the one doctor who is thorough enough to do confirm her diagnises, at least when it's a "major" illness like that which could potentially hospitalize the patient! He said she would get worse before she got better so when she got worse I just thought that was supposed to happen with her RSV, when really what she needed was to start antibiotics for the pneumonia on Friday when we took her in the 1st time.
Today has been WAY better. Her heartrate is back down fluctuating around 140s-160s. Her oxygen levels are ok but she has those oxygen tubes helping with that. She's getting enough oxygen on her own, but she struggling to breathe it in because of the inflamation. Her inflamation number for her lungs was 24 last night and down to 23 this morning. 0-5 is normal but the doctor said she's seen it as high as 150! I didn't think that was a big enough improvement but the doctor sounded pleased with that. She's now breathing around 40-60 breaths per minute. And her white blood count this morning was down to 1300! And she's eating (a little), drinking (a decent amount), and having wet diapers. And she's talking a little and trying to play a little. Slowly getting back to herself.
All this is with ivs, fluids for hydration, meds, and nebulizer treatments so I'm sure they would be higher without all the help, but she's responding to the treatments and that's good. We're still in the ICU. Don't know how long we'll be here, but she can't go home until she's off all the "stuff" and doing well on her own for 24 hours.
Thank you all for your prayers and words of encouragement. I'll try to post updates on here as we get them.
Saturday wasn't bad. I thought she was getting over it. Sunday was terrible. She woke up with a 102 fever and wouldn't eat or drink all day. Fever stayed around 102-103 all day, she was very lethargic, and she only had 1 wet diaper all day long. We were just about to take her to the new pediatric ER in Alex for dehidration when she drank some pedialite, had several wet diapers, and her fever went down. I probably should've trusted my mommy instinct and brought her in anyway.
Monday she woke up even worse. Fever 103.9 after 24 hours of motrin and tylenol alternating every 4 hours. Her fingers and toes started looking blue, and she was grunting when she breathed. Praise God for my sister in law and my nieces' pediatrician. She saw us right away and I found out Katie was sicker than I thought.
She was breathing 80 breaths per minute (40 is normal for her age), and she sounded (on the stethescope) like she was still wheezing and struggling to breath. The doctor described her as sounding "tight." She immediately said Katie should be admitted so we headed right over to the hospital. They ran tons of tests and determined she has pneumonia and she was moved into the pediatric ICU! I could tell it was bad because everyone was kind of frantic. Just all over the place with 3-4 nurses doing stuff to Katie all at once.
Her heartrate was up to 221 (normal for her age is about 95-140), her fever was still 103.8 (under the arm), her white blood count was 2500 (normal is 400-1200). When I asked what that means, they said it means she's a lot sicker than she looks and her body is having to work very hard to fight this off.
After an iv for fluids, steroids, and 2 antibiotics, tubes in her nose for oxygen, nebulizer treatments (1 per hour for 3 hours then every 3 hours since then), blood work to track her white blood count, blood preasure, heartrate, oxygen levels, and breaths per minute all being montiored 24/7, her numbers finally showed some improvements over night. From 8:30-about 1:00am Katie had nurses doing "something to her" almost constantly!
When her doctor came in to check on her today, she said Katie looks much better. She said she usually doesn't come in at night to check on her patients, but she was very worried about Katie last night. She said she had some sort of "bands?" or something that could be very, very bad! And because Katie's vitals were all over the place she was afraid Katie was going to "crash" on her last night. Praise God for taking care of her and how well she's responding to the medicine. I know the doctor feels good about her improvements or she wouldn't have told me all that. She said she was trying really hard last night to stay calm so we wouldn't panic.
It turns out it never was RSV. My doctor never tested to confirm that, he just assumed based on her symptoms. And apparently it's not uncommon to not test to confirm RSV. I think I would like to find the one doctor who is thorough enough to do confirm her diagnises, at least when it's a "major" illness like that which could potentially hospitalize the patient! He said she would get worse before she got better so when she got worse I just thought that was supposed to happen with her RSV, when really what she needed was to start antibiotics for the pneumonia on Friday when we took her in the 1st time.
Today has been WAY better. Her heartrate is back down fluctuating around 140s-160s. Her oxygen levels are ok but she has those oxygen tubes helping with that. She's getting enough oxygen on her own, but she struggling to breathe it in because of the inflamation. Her inflamation number for her lungs was 24 last night and down to 23 this morning. 0-5 is normal but the doctor said she's seen it as high as 150! I didn't think that was a big enough improvement but the doctor sounded pleased with that. She's now breathing around 40-60 breaths per minute. And her white blood count this morning was down to 1300! And she's eating (a little), drinking (a decent amount), and having wet diapers. And she's talking a little and trying to play a little. Slowly getting back to herself.
All this is with ivs, fluids for hydration, meds, and nebulizer treatments so I'm sure they would be higher without all the help, but she's responding to the treatments and that's good. We're still in the ICU. Don't know how long we'll be here, but she can't go home until she's off all the "stuff" and doing well on her own for 24 hours.
Thank you all for your prayers and words of encouragement. I'll try to post updates on here as we get them.
Saturday, December 12, 2009
Thanksgiving
This year we went to see Andy's family in Amarillo for Thanksgiving. We had a great time with them.
We watched lots of football,
We watched lots of football,
Fed some ducks,
Helped Mimi put up Christmas decorations,
and got some SNOW on Sunday morning before we left!
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