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Welcome to Alison's Page. It has been provided to keep people updated about our little one. 
Alison Patricia Green
Born: Feb. 28, 2004 at 2:19am Weight: 6 lbs 9 ozs Length: 18 inches Current height and weight as of June 22,2007, 36 lbs and 40 inches tall.
Journal
Tuesday, February 12, 2008 Well let's see ...........I'm way behind. Hey,at least I've been updating the pictures. It's been quite busy between the holidays , multiple hospital visit's and Mr. Brody. When I last left off Alison was sick, she went to the doctor the next day and was on antibiotics for ten days. She cleared up while she was on it but went right back to being sick when the antibiotic was finished. She was due to go to her regular ENT appointment so I just waited the day to go there . He put her on a different antibiotic since the first one they gave her twice didn't work. She was fine on that but as soon as it was finished she got the cough and secretions right back. He really didn't have much to say about her trach except to give her the whole year before making a deceision about how to proceed. So we have to go back in May. So a few days after the antibiotic finished she was sick again. She didn't have a fever but had a rhaspy voice and ton's of secretions. I took her to her doctor and they deceided to do a culture since we seemed to be chasing our tails with it.She had pretty much been sick since august and now it was november. He did that and wanted us to try to hold out til it came back to give her any other antibiotics, which would be two to three days.He said if she started to run a temp or had any respiratory distress that we would have to do something sooner. That night she crashed. She started having tons of secretions and a fever that wouldn't come down. It was staying between 102.6 -103. Around 9pm she started having so many secretions within an hour her whole stoma was red and she had a cellulitis of it. She was really breathing heavy so I took her to the ER. They didn't feel comfortable sending her home between her history and the way she was breathing so they called her doctor and he admitted her. We had to stay the night in the ER because there wasn't a bed in peds. They started her on IV antibiotics which is what she always winds up needing when she gets a trach infection. It happened over Thanksgiving so the culture took longer to come back. She had three days of an antibiotic then they got the culture back and found out the specific antibiotic for what organism she had (strep pneumonia) so she had to stay for three days of that antibiotic. So that's where we spent our thanksgiving. We left there after six days. I told Tom not to come down that day because I had the car there since I drove to the ER that night myself. When I came out after we were discharged the car wouldn't start. For some reason the battery had died so I had to call AAA to come and jump start me before we could go home. We had gotten Brody in the begining of Novemeber so Tom had to run home constantly to let him out. Alison was so mad one day. Her doctor came in and she was half asleep , when he walked in and said "I want her to stay one more day" then he woke her up and she was crying to him "I'm going home to see Brody Vom Buflodddddddddd!!!!!!" She was so mad. Needless to say he didn't know quite what to make of that. We were home for an hour and Brody was still whinning . He was nuts. We would call and talk to him on the phone everynight and he would look at the phone and tip his head then bark and whine.
After we got home she did good for awhile . She went back to school and was liking it again and doing good.She had a great Christmas and got lots of toys as did Brody and the kitties. I didn't even have them put away yet when she started getting sick again the end of january. This time she had a fever of 102-103 I took her to the doctor and she said that both her ears were red so it was back on antibiotics. After a week of that she started having a cough and secretions but no temp since being on the antibiotics.It was a sunday night, so monday it was back to the doctor . Luckily it was the same doctor so she knew that she didn't sound like that a week ago. She was concerned about her having a respiratory infection and put her on a second antibiotic. She said she was on call that night and to call her if she developed any distress or other problems. So as usual a few hours later she has a temp of 102.6 and was starting to have some respiratory distress. Well I knew if we didn't go then it would be a 3am ER visit so I called her and told her. She wanted us to go to the ER for an evaluation if we thought she was worse. I'm not really sure why she didn't just admit her directly to the hospital but it probably had something to do with the fact that she would have to come in and see her if she did. So she was having more respiratory distress, her sat's were down around 89-90% , she usually runs around 98%. We went to the ER and that was a dissastor. I know they were busy but it was a total waste of everyone's time. We got there around 8:30 at night and didn't get out til 2:30am. We waited 2 hours in the waiting room with her sat being 89%. The triage nurse was very nice and thourogh but that was about the best part of the experience. The nurse who was calling people in was barking at this lady, I don't know how she kept from telling her off. When she called us she was "are you mom and dad?" I was waiting for her to bark at us and I was going to blast her after waiting there for two hours for nothing. But she didn't say much more except to tell Alison something to the effect that "either you take it from your mother or 'I' will give it to you" about her tylenol .Luckily after that she was gone for the night.The doctor was down right scary , her eyes were all blood shot and her hands were shaking. She didn't act like she had a clue. She ordered a breathing treatment, an x-ray , a blood count and a blood culture. She never asked any history from us , I guess she just went with whatever the nurse wrote. She did listen to her lungs. About three hours later they told me her doctor was on the phone and wanted to talk to me. She asked me if I felt comfortable taking her home since her sats were RUNNING 93%. What a joke , they only took one 5 hours prior and it was 89%. I told her this and she said they told her it was running 93%, then she said well since her temp is down if they take it and it's 93 or above will you be ok to take her home. At this point I felt I was fighting a loosing battle here and just wanted out of there since they weren't doing anything to help her.She was on two antibiotics at this point and was running a temp of 103 still. The doctor also told me that they checked her for RSV, and did a culture. Another lie, I never left the room those things never happened. So she said that they would do it before we left. We were to come back to our doctor's office the next day at 10 and it was already after 2 so we agreed. They did do the RSV test before we left , the culture was never done. They came in and put an adult probe on her pinky finger and said "there her sats 93, she can go home". The nurse then told the doctor that he was unable to tell if it was accurate because her breath sounds were so coarse he couldn't count her heart rate. She just said that she could leave. Needless to say when we got a form to evaluate our ER experience last week I was less than kind. I only wish I could get away with treatment like this at work. The next morning after a few hours of sleep we went to her regular doctor. He wasn't much more aggressive. By this time she was breathing around 50-60 per minute (normal people breath around 20)he asked me what I thought! I told him she was working really hard to breath and was still running a temp, her sats were down still. He looked at her and said "yeah she's working pretty hard" No shit Sherlock! Then he said "I guess we'll have to admit her" like it was a big effort on his part. He then proceded to tell me that she had RSV which is what causes the common cold in most people but is very dangerous to premature babies and kids with lung issues.It can kill them. When I said "she does!" he replied "yeah but it's no big deal". Well two weeks in the hospital and a helicopter ride later we're thinking maybe it was a big deal.The past three years she got a monthly vaccine against RSV because it can be so dangerous to her but since her trach is out the insurance wouldn't pay for it anymore.It's a couple thousand a month. So instead of an 8,000 dollar bill they probably have at least a 50,000 dollar one. So she had to be admitted to CMC because Moses didn't have any beds. She got progressively worse and worse there. She was there over night , she had a twit for a nurse there. She just kept breathing worse and worse , when she was up to 80 breaths a minute and only in a croup tent at 30% oxygen she was only sating around 84-85% so then they stuck another oxygen tube into the tent and put that at 15 liters or so . But that only helped if her head happened to be right in that spot. At one point her respiratory rate was up to 120 per minute. 100 more than a normal person. I went out and got her nurse to tell her that now she was literally breathing over 100 times a minute. That's two breaths per second. There's no way you can maintain that for very long. I was really worried she was going to tire and they wouldn't be able to get her intubated. As it was they don't have a pediatric vent there so if they tubed her she would have to be sent out. She should have been tubed there's no doubt in my mind. They just kept pushing the envelope. So anyway she comes in the room and looks at her, She then turns to us and say's "she's breathing 120 times a minute". We were like "yes" . Then she proceded to say "well the doctor did write an order to call if she was breathing more than 80,,,,,,,,so I guess I'll call him" . I about died ! I guess if he hadn't wrote the order she wouldn't have bothered to call him with that. So after that she came back and said he changed her breathing treatments from every 4 hours to every 2 hours.I guess he thought she could maintain this for hours til she got a breathing treatment. She sort of corrected herself after her temp came down some to where she was back to between 60-80. So we gave them a little longer. By morning she wasn't getting any better, a different doctor in the group came in and took a look at her. She thought she was really congested. I voiced my concerns to her that she would need to be intubated and was there someone there that would be able to get a tube in her because she was sounding more and more swollen.Even when she took a breath in you could hear how tight she was getting. She agreed that she would not be able to tolerate this for a long period of time. Now at this point it's tuesday and we are already into this two whole days. So she added some steroids and said we'll watch her. When Tom arrived we talked about it and agreed we wanted her out of there. She was back to breathing 80-100 again in the afternoon was just tiring out. So I made them call the doctor again. It was the same one who was there in the morning and I told her I didn't like how she was looking and I thought she needed to go out to her pulmonologist in Danville. She agreed that it was a good idea and said she would call them. A few minutes later they came in and said that the helicopter would be there in about 6 minutes. That stinks because I can't go with her on there , she has to go alone but I think it was best to get her there and get treatment faster. I thought they might tube her when they came for the ride but they didn't. The first thing they did though was give her some actual oxygen. They put her on 100% non rebreather mask. Her sats then came up to the 95% range.Amazing what a little oxygen can do. She didn't want to go of course she kept telling them that she didn't need it. She had her little Jasmine doll clutched in one hand or the other for the two strait weeks she was in the hospital. She refused to put it down no matter what was going on.If she dropped it in her sleep that was the first thing she said every morning "where's Jasmine".Now even at home Jasmine is usually in her hand although she will put it down now that she's home. So they flew her to Danville. Tom and I had to drive down which took about an hour and a half. She was admitted to the pediatric intensive care unit. There she had the same nurse who had her when she was a student and also in april when she had her trach out.She was all tucked in when we got there with this really cute little quilt shaped like a dog. She was sleeping . We couldn't believe it when we walked in ,she was like a new kid. Her respiratory rate was down to 40 or so , she was breathing pretty easy. We were like "what did you do to her". They were in the process of giving her an 8 hour long respiratory treatment of albuterol.Plus she had the 100% oxygen on.She looked Soooooooooo much better it was unbelieveable. When she heard us she woke up and she took one look at us and said "I was so worried about you two , so very very worried" It was heart breaking. The nurse said that she kept telling them "I need my family , where are my family". I was glad that she had that nurse though cause she may have remembered her since she just had her in April and she liked her. The only downside was they made her be in isolation which meant we had to wear a gown , gloves and a mask the whole time even when I slept in there. But it was certainly worth it. She did really well , the next day they were able to move her to a regular room.We talked to the resident when we got there that first night and he said that they would consult her pulmonologist. She was admitted under the medical service and they were suppost to consult pulmonary.Apparently that never happened. I was wondering why I never saw anyone from there. The next day I ran into Dr. Perez in the hall he asked me what I was doing there. Hmmmm I told him and asked him if they consulted him like they were suppose to he said no.I told him what was going on and he said that if she was there he would definately had tubed her because she wouldn't be able to maintain that rate.He stopped to look at her anyway , she was sleeping though he said he'd stop back again. That night she started to get crappy again. It was about 7:30 or 8 at night. I knew she was due for a breathing treatment soon so I was just trying to hold out.Well after about an hour or so I was thinking they were just busy, another half hour or so went by and still no therapist. She was really starting to breath hard so I asked her nurse about it. She said she would check. Around ten she came in and said the treatments were discontinued! I found this odd, she said she would check on it.That was the end of her . After 11 the next shift came in I asked them about it. Of course she didn't know anything about it but said she would check. Alison was starting to breath harder again.She never came back with an answer either. I fell asleep for a few hours around 6 the resident was in. I asked him about it.He told me that kids with RSV don't need respiratory treatments , that it doesn't help at all. Now this is obviously not true in her case since that is what turned her around to begin with. So I asked him about the pulmonary consult I was promised twice now. I told him that was why we had her sent here to begin with. So he said he would mention it at rounds. By now Alison was a mess again. Her respiratory rate was up to 80-100 again and she was really working hard. Next person to enter was Dr. Perez. He thought she looked pretty bad , when he told me what he wanted to "add" to her respiratory treatments I told him she wasn't on any. I thought his eyes would pop out of his head! I told him she hadn't had one since 5 the night before and he thought I meant that they just stopped the atrovent. When I said no she hasn't had anything he was funny . He was just saying "NO,NO, NO , No that can't be". I told him I asked two shifts and then was told by the resident that kids with RSV didn't need them. He was mad, he said normal kids don't but normal 4 year olds don't have a problem with RSV. She has lung problems she can't be treated the same as healthy 4 year olds.He left immediately to talk to them and get the treatments started. This time it took a 24 hour long albuterol to get her back to where she was.He was off the weekend but sent another doctor covering for him in to check on her. She was very nice. She told me that Dr. Perez told her what had happened and she promised they would not stop her treatments again. She said he was worried about her because she looked so distressed yesterday and he wanted her to check on her.After that some resident or doctor did stop her treatments once again and she started to relapse again. I got them to call pulmonary back in and they restarted her treatments and again told them not to stop them EVER! She took along time to come along . She was stuck on 50% oxygen for days. Everytime they tried to turn her down she would drop her saturation and become distressed. She basically ran a temp of 102-103 for the first week and a half that she was there.She just didn't seem to be getting better for a long time.She was only able to get off the 50% oxygen 3 days before she came home. She didn't eat much for the first week and a half either. Around thursday before she came home (monday) they started her on some peripheral nutrition. She lost 1/10th of her body weight while she was there and still isn't eating the best although she is getting better at that. This is probably the sickest I've ever saw her. I don't think I said earlier , she had developed a viral pneumonia from it. The poor kid was so tired of being poked and prodded. They did blood work every day not to mention the IV's all the time. Two days before we left her Iv came out and we opted not to put it back in since she was just getting minimal fluid from it and was starting to drink better.The only problem was she still needed to get two more days of her antibiotic course. So she had to get two shots at the same time each night.She was really good about it she didn't really care about the needles she just kept giving them her favorite line. "You give me back my leg". Everytime someone tried to do anything with her she kept saying they were taking her leg or arm and they better give it back.She had tons of funny lines. At first at CMC they used regular needles to do things like labs and IV's. She kept telling them "Don't point me , I don't want to be pointed anymore".When we were at Danville they did finger sticks and used this little thing that looked like a pen to collect the blood.So she told them "don't write me , I don't want to be writted". She also had to wear a percussion vest. They resorted to this when she didn't seem to be getting any better. She had to wear it for ten minutes four times a day. She HATED it. She would yell and cry the whole time.It would basically shake her to get the secretions moving in her lungs so she used to yell "you stop shaking me, I don't want to shake anymore". Then she tried to manipulate them to get rid of it. She kept saying it didn't fit her that it was too small, then she told them to give it to the babies. The girl told her it couldn't be used on babies so the next time she came to do it Alison told her that she was a baby not a big girl. I think her most frequent line was "weave me awone". The poor kid was so tired . She was woken at least every two hours for 2 weeks. She was exhausted . It's no wonder she didn't feel like eating. She just got up everyday and moved over to my bed and went back to sleep. She kept wanting to do 'homework' as she was getting better so I called her teacher and she sent her a bunch of work sheets and books to work on.I was so sick of those same books , she made me do them over and over. We kept her home the rest of the week after she came home. She started back to school today. She was excited to go but when we got there and I reminded her that Jasmine couldn't go she wasn't too happy. But she went and was fine once she got there. There is a new student in her class so she was excited to have a new friend. She's been crying for weeks because she doesn't have anyone to play with.I've had to be Jasmine's prince for weeks now.
We got Brody back in november. The poor thing just gets into the routine and we wind up back in the hospital and throw him all off. He's been doing great even if he does drive me nuts. He's super attached and cries his head off when I leave for work. He wants to go everywhere we go and tries to squeeze out the door if your trying to leave.I try to take him to and from school with her all the time.He loves to go but barks when I get out of the car to bring her in or get her. The kids used to like to see him when he was little. Sara would get so excited when she saw him waiting there . She would just jump up and down and shreik. I haven't been waiting outside too much lately with the weather though so she hasn't gotten to see him lately. He has a bunch of friends downtown who know him already. One lady I didn't even recognize knew his name when I was walking him last month. I try to walk him when Alison is in school ,it's so much easier. When she comes she wants to help walk him and of course can't really hold him so we have to hold him too and then she's mad cause she wants to do it herself. Not to mention it's difficult to train him when she has her hands on the leash. He just finished his beginner class in obedience training. He did really well in that . He got messed up for graduation though because I did all the classes and then for graduation I was in Danville with Alison so Tom had to take him. He did ok but would have done much better if he wasn't so out of his routine. He was really crazed when we got home finally after the two weeks.We called him all the time he was really missing us.Tom said he used to look out in the driveway for us all the time. Alison used to go to all his classes too, she was very upset when she missed his graduation. She was crying the week before because she was missing Brody's school. I couldn't convince her that he didn't have school that week even though it was true. She used to want to be his teacher. When we came home from class she would line the cats up and "teach" them. I know the poor cats, but hey they steal her toys all the time. Brody's five months old now and 51 pounds. His baby teeth are all falling out and I'm always covered in blood from his mouth. The poor thing his gums are all swollen. He's doing well with the cats. Rudy and Tom sort of play with him til he gets a little ruff then they run, but they go right back and tease him. Brad is starting to get better , now he just stands there and hisses at him in stead of smacking him. He likes to be a watch dog if someone rings the doorbell. The UPS guy was afraid of him the other day which is kind of funny because he's really a big baby. As soon as the guy petted him he was all goofy.However when I get home and try to get in the door I have to wake him up to move out of the way so I can get in. I guess he doesn't care who comes in as long as they don't ring the door bell. He loves to play in the snow and will run back and forth like a nut when he goes out and there's a few inches.
I can't think of much more. Next up is her Cardiology appointment in March.And of course she's all excited about her up coming birthday!
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