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Webster
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Friday, August 7, 2009
Wednesday, August 5, 2009
Shailee Jo Webster Memorial Benefit
We are having a benefit concert in memory of Shailee this month. there will be music all day, games, raffles, and food. all the proceeds are going to the 5p- socitey and some to the Shailee Jo Webster Fund to help other parents that have a child in a NICU unit and need help to be with their children. The information follows:Saturday August 22, 2009 from 10 am to 8 pmHarrison Smith Park, Upper Sandusky, OHLine Up:Sounds of MusicNick Wallace (singer/5p- socitey member)Karaoke Express and FriendsJason Scott HookDominanceSleep-In-AetherUnhingedI made some flyers but they are a word document and i am not sure how to post something like that. we are asking a donation in the amount of $5 for ages 13 and up and $2 for ages 12 and under. donations are not mandatory but will be greatly apprieciat...
Monday, July 13, 2009
Obituary
The Following link will take you to Shailee's obituary, I have had a lot of people ask about it so I thought I would post it here for anyone that may want to print it or see it.http://www.dailychiefunion.com/obits.h...
Friday, July 10, 2009
Friday, July 10, 2009 Little Angel
Shailee Jo Webster passed away today around 4:45 pm. She is now with God and she is finally happy and well. Shailee touched so many different people and in doing that she has brough us all together as a whole, maybe that was her purpose all along. But she has her wings now and she will forever be comfortable.Little AngelsWhen God calls little children to dwell with Him above.We mortals sometimes question the wisdom of His love.For no heartache compares withthe death of one small child,who does so much to make our worldseem wonderful and mild.Perhaps God tires of calling the aged to His fold.So He picks a rosebud before it can grow old.God knows how much we need them and so he takes but few,to make the land of Heaven more beautiful to view.Believing this is difficult still somehow me must try.The...
Sunday, July 5, 2009
Sunday, July 5, 2009 Not Alot Of News
Shailee is having a much worse day today. her oxygen is back up to 85% and she is still being medicated around the clock. she is just up and down, down more than up, but she is still hanging in there. she had a few spells overnight last night, and has been sleeping alot today. other then that there is no new news. i will keep updating as i c...
Saturday, July 4, 2009
Saturday, July 4, 2009 Update
Shailee has been doing really good the last couple of days. her oxygen was down to 40% the last time i talked to them (about an hour ago) and she hasn't been having any spells.they are still getting alot of secretions from her but it hasn't been as thick as it was. they told me that she has been awake a bit more then usual too. they also told me that she has pulled her ng tube (feeding tube) out of her nose several times today! we are hoping these are all good signs, but we don't know if she will stay this way or not. it is all a wait and see thing. i will keep you updated as much as possib...
Wednesday, July 1, 2009
Wednesday, July 1, 2009 Some Updates
Shailee has been up and down the last few days. they have increased her feeds to 84ml every three hours and that is the one thing that she is doing good with. she had one good day with no spells but isn't showing improvement. a few days ago her oxygen was at 65% then up to 75% then up to 80% and now up to 100%. it has been rising and going down a little then rising again. she had 3 bad spells the other night and 1 during the day (that one was b/c she pulled out her trach!!!) last night she had 3 minor spells and 1 bad one today. the spell she had the other day she dropped her oxygen to the 10's and her heart rate to the 90's but she did come out of it without bagging. now today they said that she had blood tinged secretions coming from her trach which they think is coming from her lungs, and...
Monday, June 29, 2009
Pictures
The pictures that were taken at the hospital are posted to the photographer's website for me to share with all of you just go to the following site and follow my instructions to gain acess to view them.www.serendipitybygerri.com1. click enter2. click client3. type shailee in the password box and click en...
Sunday, June 28, 2009
Sunday, June 28, 2009 Update
We are back home from spending the weekend with Shailee. We had her baptism done at the hospital on Saturday, and she had professional pictures taken of her today which will be on a website soon and i will post them so you can see them. we signed the DNR today as well. they are pretty much going to do everything the same other then they are no longer going to do any labs on her, they will not give her any new medications, and if she has a bad spell where her oxygen drops down to 10 or below they will not bag her back up, they also will not be wrapping her belly or putting her shoes on her anymore as that only makes her more uncomfortable. they will continue all of her current medications as well as her feeds and those will increase with her weight gain as needed, they will also contine to...
Wednesday, June 24, 2009
Wednesday, June 23, 2009 Bad News
I wanted to update everyone and let you know that Shailee has taken a turn for the worse. she is no longer responding to any treatments and they have done all that they can. she is totally oxygen dependent now and her lungs are beyond repair. she is not holding her oxygen levels well and she is dropping to levels of 1 or 2 and it is getting harder and harder to bring her back and she is having many episodes in a single day. we are going to spend the weekend with her as they don't think that she will be with us much longer. they wanted to put her in hospice and just make her "comfortable" but we don't want that to happen so we are working with the hospital on filing a DNR with Shailee. we don't want her to suffer anymore, and her health is only declining more each day. she has to constantly...
Saturday, June 20, 2009
Saturday, June 20, 2009 Updates on Shailee
Shailee is still doing good for the most part. She had her new custom made trach put in yesterday and it fits her nicely. and since the trach has went in, her oxygen percent has been down to 30% which is great compared to what it used to be at. she is in a contact isolation room and you have to wear a gown and gloves if you are going to be touching her b/c right now she has MRSA which is an infection that once you get it you will always carry some form of it, but she wont always have to be in contact isolation, it is only in her nose right now and she isn't showing any signs of being infected at this time but it can spread to the other people and babies there so that is why they put her in her own room so others didn't get it. they are watching it and testing her often to make sure that it...
Wednesday, June 17, 2009
Wednesday, June 17, 2009 Updates
Shailee is still doing good and she is stable. She does have an infection right now :( but it is only in her nose and they said as long as it doesn't get into her blood she will be fine with it, she is still on antibiotics as well to help it. She has been moved into her own private room due to the infection and b/c she wasn't getting enough rest with all the noises in the unit, but they said that they are going to keep her in this room until she goes home. They ordered her home vent but it is going to be a month before they can get it b/c they had to special order it for her. She will be having her trach tube changed on Friday sometime as well. She is healing up good from surgery, and she isn't being sedated all of the time now. she is up to 73ml of formula every 3 hours now and she is tolerating...
Sunday, June 14, 2009
Sunday, June 14, 2009 Updates
Shailee is still stable, but she has been having some issues. She is still very irritable and she keeps having bronch spasims again. they also sent her secretions off to be tested b/c they think that she may have an infection again, but we wont know for a few days if the cultures grow anything or not. They said that she is having alot of secretions again so they think she may be getting pneumonia again b/c her lungs sound like they have fluid in them again. Other then that there are no updates. I will update as soon as i hear mo...
Friday, June 12, 2009
Friday, June 12, 2009 Surgery Today
Shailee had her surgery today. We got there at 9 she was scheduled at 10 and got in at 12 and never came out til 2:30. I held her for an hour and a half before she went into surgery and she came out of surgery with no complications so her trach tube is placed and her vent is hooked to her trach. They said they will keep her pretty well sedated for the next day or two to make sure that she isn't moving too much and causing irritation and not allowing the site to heal. they are not going to start feeding her formula again until sometime tomorrow so right now she is only on iv fluids. we couldn't stay with her long after her surgery b/c she needed recovery time but we did get to see her for a little while. the surgeon also talked to us and said that she did great and she was and still is stable....
Tuesday, June 9, 2009
Tuesday, June 9, 2009 Updates and Pictures
Shailee is still doing good. and her lungs are still clear! the surgeons were getting together today with the heart doctor to see if he would clear her to have her trach done, and if he does then she will go into surgery on Friday. We are meeting with the doctors tomorrow at 12:30 for a care confrence to go over everything that is going on with shailee and what the plan is for surgeries and so on so we should know alot more tomorrow, hopefully. here are the pics from our last visit also. i will update more tomorr...
Sunday, June 7, 2009
Sunday, June 7, 2009 Today's Visit
We went to see Shailee today and she is still doing good. She weighs 8 lbs. 12 oz. now!! she is up to 68ml of formula every 3 hours now. she still hasn't been scheduled for surgery but they are going to talk to them tomorrow about getting her in ASAP b/c something happened over night. yesterday's chest x ray was really bad and hazy and then the one they did today was clear!! so they want to get her in to get the trach done while they have this open window to do so. so hopefully i will know more early on tomorrow about when she will have this done. other then that there haven't been any changes with shailee. she is still on all the same medications, she still has her orthopedic shoes on 22 hours a day. hopefully they will get her trach in soon so she will be able to get out of her bed more...
Tuesday, June 2, 2009
Tuesday, June 2, 2009 Recent Updates
Shailee is still doing ok. She is still on antibiotics for her pneumonia, but her lungs have cleared up some, and her pulmonologist has cleared her for her tracheotomy, but they haven't set a date yet, so we are just waiting to here when they are going to do it. she had to be resized for new pediatric shoes b/c she is growing and the current ones were starting to leave creases on her feet so she will have new shoes in a few days. they had to reintubate her sunday night b/c she pulled her tube out again, but that is b/c she is 2 months old now and she is being more active and awake more which is normal so she thinks that her tube is something to play with. now they are retaping her tubes a couple of times a day b/c she is always trying to mess with them. other then that there really haven't...
Friday, May 29, 2009
News In My Family Life
People have been asking how we are holding up and how the other kids are so i thought i would update everyone real quick. Me and the hubby are doing good, he is still working all the time, and i am doing great at keeping busy with the kids and the house and school. we got all moved into our new house and are pretty much settled in. the boys are both playing ball so we are doing 4 games a week, and once baseball is over i will have one in football two weeks later! shailyn is doing good, she is sick right now, probably just her allergies and what not but it isn't stopping her from being a typical 2 year old. the boys have their last day of school on the 4th, i don't know that i am ready for summer break yet, but we will live....lol. and chase...
Friday, May 29, 2009 Today's Update
Shailee is doing ok. Her pulmonologist did NOT clear her for the trach surgery, he said that her chest x ray looked too hazy, so he ordered a lung ultrasound, as well as a gram stain which tests her secretions for bacteria infections. well the cultures grew out so she is on antibiotics again for an infection but they said that it is minor. she will be on them for 7 days and they will test her again. he said that he is not going to clear her until he is 100% sure that she doesn't have an active infection. other then that she has been doing great, she is staying awake alot more and playing and things, but she is no where near being in the clear, she has a long road ahead of her. that is really all that is going on with her right now and i will update more as soon as i kn...
Wednesday, May 27, 2009
Wednesday, May 27, 2009 Today's Visit
We went to see Shailee today, and she is doing ok. they did a 12 hour ekg yesterday and right after we got there today they started attaching all these wires to her tiny little head b/c they were and still are doing a 24 hour eeg with video to rule out seziures. they also did an eye exam today and the eye doctor told us that the nerve that goes from the eye to the brain is smaller then it is suppose to be, and it could grow eventually or not, she could have great vision to poor vision, it is just another one of those we will have to wait and see when she gets older types of things, like pretty much everything else it with her. they also started her on meds for reflux, which i mentioned to them like a month ago and they acted like i was crazy and she didn't act like she had it at all, guess...
Monday, May 25, 2009
Monday, May 25, 2009 Yeserday's Visit
We went to see Shailee yesterday, and she is doing ok. she still has the pneumonia and they did another chest x-ray and they said that it was a total whiteout, so they are extending her time on the antibiotics for 7 more days and she is getting chest pt 2 to 3 times a day to help break it up. she was sleeping the whole time that we were there b/c they had to give her adavant earlier b/c she had one of her spells again and was very irritated. but even though she had a bad day they still let me hold her. they chaged her feeds to 64 ml every three hours and she is still tolerating them very well. they weighed her yesterday and she lost 10 grams, but that is no big deal. we were also watching her and she looked as if she was trying to swallow...
Thursday, May 21, 2009
Wednesday, May 20, 2009 Our Visit
Shailee is still doing ok, she is stable. We all got to hold her during our visit, so that was nice, and she was wide awake the whole time we were there! Shailee weighs 7lbs 12 oz now, but she really doesn't look it. they raised her feedings to 62 ml every 3 hours and she is still tolerating them great. they took her off the robinul b/c it wasn't working for her anymore, and they put her on something called atraphine which is an arisol that she gets in her et tube every 3 hours. the surgeons looked at her belly also, and it is compltley healed! so she no longer has to have it wrapped and medicated, and it is open to air now, and she is also going to get 4 hours of tummy time every day now too since it healed up. they will still have to surgically...
Tuesday, May 19, 2009
Tuesday, May 19, 2009 Update
Shailee is still stable and doing ok. she did have another bronch spell last night and it was a pretty bad one b/c they had to bag her and give her a breathing treatment to bring her out of it. but she is ok now. they also started her back on the robinul for her secretions b/c they were getting excesive again. she is now up to 60ml of formula every 3 hours, which is 2 ounces, and she is still tolerating it good. other then that there are no chang...
Sunday, May 17, 2009
Sunday, May 17, 2009 Today's Visit
We went to see Shailee today, and she is still stable and doing ok other then the pneumonia but it isn't as bad this time around. Bill got to hold her for a little while today but she started getting annoyed and wouldn't settle down so they had to put her back in her bed, but at least he still got to hold her for a while. she is still having alot of secretions, but they are managed. they had to remove her pic line today b/c i noticed some dried up pussy stuff and i pulled it back and her skin looked raw like the dressing was rubbing on her arm wrong, but it turns out she was having a reaction to the adhesive on the pic line so they removed it and placed a regular iv in her other hand soley for the purpose of giving her the antibiotics she is...
Saturday, May 16, 2009
Saturday, May 16, 2009 Update from Friday
I went to see Shailee Friday, and unfortunatley she does have pneumonia again :( so they are once again treating her with antibiotics to get rid of the infection. she isn't as bad this time as she was the last time so they caught it early. they checked for it because on thursday night shailee started having bronch spasims again, and she did this like 4 or 5 times so they had to sedate her to stop them. so of course this pushes her back for surgery once again because she has to be infection free for 4 to 6 weeks after an infection, so it is going to be a long time before she gets to come home :( they also drew blood and they are not finding any infection in her blood which is good but she does have raised white blood cells which indicates an...
Thursday, May 14, 2009
Thursday, May 14, 2009 Update
Shailee has had a bad day today. she has had several bronch spasims and was lowering her heart rate and oxygen. they took cultures from the tubes to make sure an infection wasn't in the tubes, which they should have back the results tomorrow. they had to give her medication to help her rest today so she wouldn't have so many problems. we are keeping our fingers crossed that there isnt any infection that has spread to her. but as of right now she is stable, i am going to see her tomorrow and i will update more th...
Wednesday, May 13, 2009
Wednesday, May 13,2009 Today's Visit
we went to see shailee today, and she is still doing good. she is no longer on the lipids but they are still running a little bit of fluids into her just to keep her pic line open in case they have to us it again, they want to be sure before they pull it out of her completley. she seems to love her crib, and she has all the room in the world in there, and it also makes her look really small compared to the other bed she used to be in. she has a crib mobile that she likes to look at, and they have also found that when she gets irritated that music calms her down so now she has her own little radio in her bed with her as well. we saw her physical therapist today and she said that shailee is still doing good, also told us about the crib gives...
Tuesday, May 12, 2009
Tuesday, May 12, 2009 Today's News
Shailee is still doing good. she did have to have some meds to help her relax early this morning b/c she was getting irritated but she is ok now. she is up to 54 ml of formula every 3 hours and is still tolerating it well. they even had her in a bouncy seat today!! she is in a crib now instead of the hospital bed thing, and she loves it, they even gave her a crib mobile to listen to and look at, and they said that she really likes it alot. I also talked to the geneticists office today and they have all of the final reports in and me and bill's cells are normal so this is just something that happened and she didn't get it from either of us. she still has the same diagnosis of cri du chat and hers is a mosaic form b/c she has the deletion and the addtion, there is very little information in...
Sunday, May 10, 2009
Sunday May 10, 2009 Mother's Day Update
HAPPY MOTHER'S DAY ALL! Shailee is still doing good. there have literally been no changes since my last update. She is still tolerating her feeds, and she is still on all of the same medications. I like it when there is no news because that means that nothing bad has happened. Sorry i haven't updated daily like normal but i don't have as much time these days because we have been very busy since the move getting things unpacked and in order and then there is the boy's baseball games and practices, so we have all been busy day and night. i will try to update more often as things start getting settled down more. talk to you all so...
Friday, May 8, 2009
Friday, May 8, 2009 My Visit With Shailee
I went to see Shailee today, and she is still doing good. she was wide awake when i got there, and stayed that way for about 45 min, then they came and did her chest therapy which just put her to sleep. i didnt get to see her with her shoes on,but i did see the shoes and i did take a picture of them as well. they have her up to 53cc's of formula every 3 hours, and they have been uping her amount every third feed as long as she is tolerating it, which so far she is. she weighs 7 pounds 1 1/2 ounces now!! so she is still gaining and not losing so that is a good thing. she is still on the antibiotic, and her normal heart medications as well as the robinul for her secretions. she didn't sound very raspy in her chest today so that is also good news....
Thursday, May 7, 2009
Thursday, May 7, 2009 Shailee's Update
Shailee is still doing good, and is stable. she got her orthopedic shoes today and has been wearing them since 6pm today. she is still tolerating her formula, and they put her back on the robinul for her secretions. she is also sucking on a pacifire now, but they said she only likes it when they dip it in sugar water, but either way she is developing her sucking reflex which as what matters. she is still staying awake more and being more active, and they said that her chest is clearing up very good as well. other then that there haven't been any changes. we are going to see her tomorrow, so i will take some new pics and hopefully have more good ne...
Wednesday, May 6,2009 Update
Sorry i din't get this posted last night but we have all been very busy with the move and the boys' baseball games/practices. But, Shailee is still doing pretty good, she is feeling much better. she did have herlast cast removed last sunday, and the surgeons have ordered special shoes for her to keep that foot straight and she should get them sometime Thursday. the nurse said that she stayed awake for almost 4 hours straight and was in a great mood the whole time, she was just looking around and moving all over the place, so she is being very active. they also said that her chest sounds much better and she hasn't had anymore of her "spells" which is very good. she is still tolerating her feeds very well also. so far the infectious disease doctors (yes they finall saw her) haven't found anything...
Tuesday, May 5, 2009
Tuesday,May 5, 2009 Today's Update
Shailee is doing much better today. She is awake more and alot more active and content. she is still taking the antibiotics, and she is no longer running a fever. they have started her feeds up again, but they only started her out at 10cc's every 3 hours, and so far she is tolerating them well. they aren't messing with her too much so not alot has changed. they are pretty much just doing what they have to do to take care of her and make sure that she is feeling better. she hasn't seen the specialist to check out her immune system yet, but they are hoping to get her in with him sometime this week. her lungs are continuing to look better, but she is still having alot of secretion problems since they can't put her back on the robinul quite yet, but they are hoping that she will be able to start...
Sunday, May 3, 2009
Sunday, May 3, 2009 Early Update
Hi, I have managed to be able to get online to update a little early! we went to see shailee today, but i wasn't able to get any new pics today because i haven't located my camera from the move yet. I don't really have alot of good news today, shailee is once again ill. she was running a fever of 102 to 103 today, but they did get it down with some tylenol. they did blood cultures on her and her white blood cell count is high so they said they know she has an infection, but not sure where because they did a chest x-ray and they dont feel that it is pnuemonia, they started her on antibiotics again and they said they are not growing anything in the cultures yet so they are calling in an infectious disease specialist tomorrow to have him look at her and see what is going on and if there is something...
Friday, May 1, 2009
Friday, May 1, 2009 Last Update Until Tuesday
Shailee is still doing well. the nurse said that her chest sounds much clearer then before. her last chest x-ray looked better as well. they lowered her to 68 cc's of formula every 8 hours, but it is because they had her on 20 calories and the changed her to 24 calories, they wanted her to take in less fluids but the same amount of calories due to her heart condition. the surgeons also came and checked her out today and said that things still look good, but they wont even consider her surgery until at least 4 to 6 weeks after her having the pneumonia, so she is still going to be there for a while yet. other then that she is the same today. we are going to see her on sunday, and i will make sure to get new pictures, i will update again on tuesday once we have our internet connected at the new...
Thursday, April 30, 2009
MOVING
we found a much bigger, and much cleaner home to move into, so Shailee will have a good place to come home to when she is able to. we are going to start moving tomorrow, but i will still try to update tomorrow night. but we plan to get the rest of the things moved on Saturday, so there will not be any updates from Saturday to Tuesday. the cable company isn't able to come hook up our service at the new house until tuesday morning, so we will not have internet during this time, but i will update again on tuesday nig...
Thursday,April 30, 2009 Another New Update
Shailee is still stable and doing well. she now weighs 6 pounds 12 ounces, so she is doing well with weight gain. they have her up to 74 cc's of formula every 4 hours, and she is still tolerating her feeds well. she also had a good blood gas test this morning so they turned her ventalator pressure down to 12 today, so hopefully that will keep improving. they are still doing the teatments for her to help stop her from having her really bad spells. she has had a couple minor spells but nothing serious. we are going to go up and see her on sunday so i should have some new pictures then, as long as i don't misplace my camera in the middle of movi...
Wednesday, April 29, 2009
Wednesday, April 29, 2009 Shailee's Update
I have called and checked on shailee a few times today, and she is doing ok. she is being given breathing treatments a little more regularly to help prevent her from having her spells, and so far it has been helping out alot. She is still just taking it easy and they are not doing alot to her because they are trying to get her healty enough to go to surgery. the geneticist's office called me today with some news from their further chromosome testing, and they are saying that the "unknown" addition that she has on one of her #5 chromosomes is actually some of the deletion from the other chromosome #5. so basically what i know is that part of one #5 deleted or broke off and attached to the other #5, so she still has the deletion, and she still has the cri-du-chat diagnosis, but she may not be...
Wednesday, April 29, 2009 Newspaper Article
The story about Shailee was in our local paper today. here is the link: http://www.dailychiefunion.com/I know you will be able to access today and tomorrow, but i am not sure once it is a couple days old if you will be able to see it or not, but if i can get a different link i will post it as we...
Tuesday, April 28, 2009
Tuesday, April 28, 2009 Today's Updates
I have called and checked on Shailee through out the day today, and she did have a couple of spells overnightlast night but thank god they weren't major ones and she brought herself out of it. the nurse told me today that she has had a really good day today, and there were no problems. she has spent the day today resting and catching up on her sleep. the lung doctor said that her chest x ray looked much better but is still somewhat hazy, and they are still looking into getting her something to help get that fluid out of there. she is still eating 71 cc's of formula every 4 hours and they said that she is tolerating her feeds great, so that is good. other then that there are no new updates, i will update more tomorrow. her article is suppose to be in our local paper tomorrow, so if it actually...
Monday, April 27, 2009 Today's Update
Sorry i am late posting again, we have been really busy trying to get things packed to movethis weekend,but keep checking back b/c i will always get the updates up sooner or later. I talked with the hospital several times yesterday, and she has had two of her spells (bronch spasims) during that time. the last one wasn't as bad as normal and she came back just with a breathing treatment, but the first one they had to bag her and put her breathing tube in deeper to get her out of it. they did a chest x-ray yesterday too but i haven't got the results on it yet. she is still raspy sounding but there isn't much that they can give her to help that right now with the heart meds that she must have but they are trying to figure something out. the surgeons came in and looked at her foot and said that...
Sunday, April 26, 2009
Sunday, April 26,2009 Today and Yesterday's Update
Sorry i didn't update yesterday, but we had a busy day here as we had a birthday party for the boys and had alot of people over. But Shailee is still doing good. she is stable, and resting. we went to see her today, but there are no new pictures because i left and forgot my camera. she was uped to 71 cc's of formula today and she is tolerating it well. she is also getting her last dose of the antibiotic today, but she is still very raspy sounding but she is having a chest x-ray tomorrow so they will go from there. she will be having her cast removed tonight and a new one put on tomorrow as well. we spoke with her heart doctor today and he told us that she is making baby steps in the right direction, which is good, and she is improving well. he did say that she will eventually have to have...
Friday, April 24, 2009
Friday, April 24, 2009 Another Quiet Day
I have called and checked on Shailee several times today and she is doing good and is still stable. she was uped to 70cc's of formula every 4 hours and she is still tolerating her feeds ok. They told me that she has just been resting alot today. she is still raspy but they are going to try a stronger antibiotic to see if that will help clear it up more. other then that there have been no changes today. i will update more tomorr...
Thursday, April 23, 2009
Thursday, April 23, 2009 A Quiet Day
I have called and checked on Shailee several times today and she is doing just fine today. she hasn't had anymore problems today, and has been resting all day today. they raised her up to 69 cc's of formula today, and that is the only change today. other then that they have left her alone to rest after the day she had yesterday. so she is doing good and is stable which is all that matters. i will update more tomorr...
Wednesday, April 22, 2009
Wednesday, April 22, 2009 A Very Scary Day
We went to see Shailee today, and all was well and she was stable. But she had a very bad episode today where her oxygen started dropping and suctioning her wasn't helping and then her heart rate started dropping dramatically, they called down for Albuterol right away because they thought that it was just from her pnuemonia and the phlegm, she was given 4 puffs of the medication, but that didn't help at all, so they had to bag her to keep her oxygen and heart rate up and she was turning blue fast. they thought that there was a plug (phlegm) stuck in the breathing tube so they had to take out her tube and reintubate her with a new tube, it took them two tries to get the new tube in and they had to bag her in between but they got it in and she...
Tuesday, April 21, 2009
Tuesday, April 21, 2009 Today's Visit
Me and Shaina went to see Shailee today, and she is still stable and doing good. She is handling the new heart medication very well, and they switched her to the oral diuretic today as well. There are no changes today. she was very sleepy when we were there today so she wasn't awake much. they checked her liver out because she was on the lipids for so long but everything came back good. she was sucking on her tubes today, not just the tounge motion she wrapped her lips around it this time and was sucking on the tube! so i hope that means that her mouth functions are coming together. other then that there are no changes today. i will update more tomorrow after i get back from seeing her. and i will upload more pictures tomorrow because photobucket isn't working right for some reas...
Monday, April 20, 2009
Monday, April 20, 2009 My Visit With Shailee Today
We went to see Shailee again today, and she is still doing good. She is up to 66 cc's of formula every 4 hours, and she is still handling her feedings really good. they did a chest x-ray today and her lungs still look a bit hazy, but they are getting better. they switched her to the oral heart medication and stopped the milrinone from the iv drip, and they also switched her to oral antidiuretics, so right now the only thing that she is getting through the iv is the antibiotic, and she has to have that for a total of 10 days and once that is done they are going to take out the pic line and she will not have any iv's at all! the cardiologist said that the heart is looking good and all is going well with the new heart medication. the pediatric...
Sunday, April 19, 2009
Sunday, April 18, 2009 Updates From Our Visit Today
We went to see Shailee today, and she is still doing ok, and is stable. She now weighs 6 pounds 3 ounces, but once again that is including the cast on her leg, but it weighs very little. They are increasing her formula to 63 cc's due to the weight gain as well. She is still on antibiotics but instead of being on 2 she is only on 1 kind. She still has the pnuemonia but it is only in the left lung, and it is improving, but there is a staff infection in the tube that goes into her, but they assured us that it isn't a dangerous type of staff infection and that it isn't the type that gets into your blood, they also said it is very common since the tubes area foriegn body. Her ophalecele is looking great! it is much smaller and the new skin is coming...
Saturday, April 18, 2009
Saturday, April 18, 2009 Another Day With Little News
Shailee is still doing ok today, she is stable, and less irritable. She is still tolerating her feedings well, and she is still eating the same amount. She has been dropping her oxygen levels frequently today due to the high number of secretions that she has, so the doctor put her on a new medication to help reduce the secretions. She is now taking Robinul 3 times a day to help with this problem. She is still on the same oxygen settings, and the same heart medications along with the antibiotic. Outside of that there really isn't anything new to post as they are not doing alot with her right now other then letting her rest so she can get rid of the pnuemonia and become more stable. we are going to see her tomorrow so i will update more when we get back and post new pictur...
Friday, April 17, 2009
Friday, April 17, 2009 Not Alot Of News Today
There hasn't been a whole lot that has changed with Shailee today, she is still stable, and her chest x-rays are still coming up the same. They did do a blood transfusion on her today to get her red blood cell count up, and since they did that her skin is much pinker (she was very pale), and she hasn't been having the bad spells like she was. After they did the transfusion they also gave her LASIK (antidiuretic) so she wouldn't have a fluid over load since she has pnuemonia as well. They are also having her lay with her left side up because she has more fluids in her left lung then the right so it is suppose to help break it up, and they are also doing chest therapy with her as well to help break some of the stuff up in her lungs. they tell me that she is acting much better today after the...
Thursday, April 16, 2009
Thursday, April 16, 2009 Will Things Ever Start Looking Up?
I have been on the phone with Shailee's nurses several times today, and they haven't gave me the best news today. Shailee is still stable and doing ok, but she had to be put on antibiotics today because she has a mild case of phnemonia. She started having her spells again today where she gets very irritable and arches up and then her oxygen and heart levels drop, so they did a blood culture and chest x-ray to come to their diagnosis. her white blood cell count is up which means there is an infection, and her chest x-ray came back a little hazy again. they are going to do another chest x-ray tomorrow to check it out again as well. But they are pretty sure that the antibiotics will clear it all up without any problems, they also think that once it is all cleared up that it is going to result...
Wednesday, April 15, 2009
Wednesday, April 15, 2009 Another Not So Good Day
We went to see Shailee today, and as usual of the few hours that we get to spend with her we spend most of that being bombarded by doctors. Shailee is still stable, and comfy, but the doctors didn't bring us very hopeful news today, but we will get to that in a minute. First of all, her heart echo came back good and the heart function is still improving. they still haven't lowered her heart medications but that is because they want to wait until they figure out when she will go into surgery (i will get to that as well). if she doesn't go to surgery soon they will begin to wean her from the heart medication to see how she does. She is wasn't quite up to a full feeding but is now, she is up to 63cc's and that is where she will stay until she...
Tuesday, April 14, 2009
Tuesday, April 14, 2009 Shailee's Updates For Today
Shailee is still stable and doing well. She is up to a full feeding now (a little over 2 ounces) so that is great news! The heart doctor came and looked at her today and scheduled another heart echo to look at the heart function before he decides if it is ok to lower the heart medications. They are doing a bronch exam on her tomorrow to look at her airways and her throat to help determine if she is going to need a trach or not. they attempted to gag her today, but there was no luck. Her oxygen levels are still pretty low, they are between 22% and 23% today, which is still way better then 50%. the LNP called me today with the results from Shailee's EEG, and she said that there was no sign of seizure activity so they are ruling that out which was great news to hear. Other then that there really...
Monday, April 13, 2009
Monday, April 13, 2009 A Few Changes For Today
Shailee is doing better today, she is back down to 21% oxygen which is way better then yesterday. The EEG still hasn't been read so we don't know about the seizures yet, but i should be able to find out about the test results sometime tomorrow. Shailee hasn't has an antidiuretic today, and she is still having secretions, but not as bad. they feel that that she may be having so many secretions due to irritation from the tubes in her throat. Her labs today have looked good so far, and in a couple of days they will be doing a follow up kidney and bladder x-ray to make sure they are still looking good. She was recasted (third time) today and her foot is still looking good. she is also up to 49cc's of formula every 8 hours, and they have stopped the tpn and lipids through the iv so she is getting...
Sunday, April 12, 2009
Sunday, April 12, 2009 There Has To Be Some Steps Backward
Shailee had a rough night last night and day today. She was having these "spells" and was very irritable so they had to sedate her to get her to rest. they think that she may be having siezures, so they are going to do an ECG on her tomorrow to see if that may be the case. they also had to adjust her et tube (repirator) and turn her oxygen back up to 50% because her secretions were so bad they were suctioning her every 15 minutes, so they had to give her an antidiuretic to help get rid of some of the fluids, which as of the last phone called really seemed to be helping because she hadn't been suctioned in over an hour. the thing is that they are not sure where all these secretions are coming from so they are checking into that as well. her last chest x-ray looked hazy so they are also going...
Saturday, April 11, 2009
Saturday, April 11, 2009 Our Visit To See Shailee
We went to see Shailee today, and she is still doing good. They haven't changed any of her medications. She is up to 37 cc's of formula every 8 hours now, and they are still slowly weaning her off of the iv nutrition as well. Her belly is still healing well, and her heart rate and oxygen levels are staying pretty steady as well. We took her her very first Easter Bunny today as well. They moved her into a different room again, but she is just one room down from where she was. She had a pretty easy day today, she didn't have any lab work done, so she had a little break. There really aren't any other updates for today, but there are some new pics, and she is yawning in one (she just ate and was sleep...
Friday, April 10, 2009
Friday, April 10, 2009 Today's Updates
I talked with the nurses today as well as one of the doctors. Shailee is up to 31 cc's of formula every 8 hours now, and they are still uping her formula the same as they were. And for my mom, who keeps asking me how many cc's are in an ounce, well the answer is 30 cc's is 1 ounce so she is having 1 ounce and 1 cc every 8 hours. which isn't much but it is a start. Shailee has also gained 1/2 an ounce, which once again isn't much but it is better then losing more weight. They told me that all of her lab work is still coming back good. her heart echo results weren't in yet, but they told me that everything must have looked good or they would have changed something or ordered something else, which they didn't do, so i guess no news is good news in this case. I was also told that they drew more...
Thursday, April 9, 2009
Thursday, April 9, 2009 Nothing Too Exciting Today
I have spoke with the nurses several times today, and not much has changed with Shailee today. She is up to 25 cc's of formula every 8 hours now, and they are going to continue to up her formula 2 cc's every 8 hours, so 6 cc's more every 24 hours! she is still doing great with the formula as well. Shailee had another heart echo done today (even though they said they weren't doing another for a couple weeks, suprise!) but the results wont be back until sometime tomorrow. She is also going to be having a follow up head ultrsound in the next few days to make sure that everything still looks good with her brain as well. Also another one that gets me is the geneticist who told me that he wasn't going to check her again until she was 6 months (if she makes it that far according to him), well guess...
Wednesday, April 8, 2009
Donation Site
We have found a website where donations can be made to us via paypal. We will still get a p.o. box as soon as we can, but for the time being you can use the following site to make donations over the internet. if you have any question feel free to email me.http://www.digitalcharity.com/m.php?id=68...
Wednesday, April 8, 2009 Our Visit Today As Well As More News
We went to see baby Shailee today, and all in all she is doing good. They raised her formula again she was taking 18 cc's earlier but they were putting her on 20cc's every 4 hours starting at 4 pm today. She is still doing well with the formula which is a good thing. She is still pottying good and without the aid of a supository. She is still on her respirator due to her high level of secretions as well as the fact that she can't swallow. She is still out of her icolete and in a more normal bed that isn't completley closed in, and she was still in clothes today as well. She woke up for about 45 minutes today so we got to play with her a little, then they gave her some food and she was out like a light. Sister Maxine Young came down and did...
Tuesday, April 7, 2009
Tuesday, April 7, 2009 An Uneventful Day
I spoke with Shailee's nurses several times today, and there really isn't much to update on today. They have uped Shailee's formula to 12 cc's every 4 hours instead of 5 cc's and she is still doing really good with it. She didn't have any labs or tests done today so she pretty much had a day of rest. She was still out in the crib today, and the nurse said she spent most of her day looking around and checking everything out, and cat napping. We will be meeting with her geneticist tomorrow so hopefully i will know a lot more about her then, and lets all pray for good news with no more suprises because i don't know how many more suprises i can take. I will update more on Shailee tomorrow after we get back from visiting h...
Tuesday, April 7, 2009 Our Family
I have had alot of people ask about our family and wanting to know a little about us. Well I am the mom, Stacy, and my husband is Bill. I am 25 and Bill is 39. We have a total of 7 children (2 of them we currently don't see). My children (before me and Bill) are Austin age 9 (will be 10 April 20th), and Chase age 6 (will be 7 April 13th), then my children (with bill) are Shailyn age 1 (will be 2 May 14th), and Shailee age 1 week 6 day (but you know all about her), Then there is my step daughter who is her with us quite often and her name is Shaina age 16. My husband works full time (actually over full time more like 50+ hours a week) and he is also a full time college student studying for degrees in human services as well as criminal justice....
Monday, April 6, 2009
Monday, April 6, 2009 Another Day And More Waiting
I didn't get to go see my little girl today, but i have been on the phone with the nurse checking on her 4 different time today already. Shailee has been having a good day, she is still stable. I wish i could be there to see her today, the nurse has her out of her isolete and in a crib, but she has clothes on her today and a blanket, but she is hoping that she will be able to be out Wednesday when we go up too. we are still unable to hold her but that is because if they have her propped up she gets more secretions in her throat and it will affect her oxygen and heart rate :( they are still suctioning her regulary to keep her airways clear, and that is because she doesn't swallow. They told me today that she does have a gag but not enough of one yet, and the swallowing usually follows the gag...
Sunday, April 5, 2009
Sunday, April 5, 2009 Another Visit And More Unwanted News
We went to see Shailee today, she was still stable, which is what we want. Shailee is still intubated (breathing tube down her throat). She didn't get any lab work done today, they are waiting until Monday to do her chest x-ray, ekg, and all the other blood work they do. The pediatric surgeon gave the ok to give Shailee a little formula in her feeding tube tomorrow to see how she will handle it, so hopefully everything will remain ok and she will finally get to try it out.We met with Shailee's endocrinologist for the first time today, to find out that they are concerned with Shailee's pituitary gland and its ability to produce her body's hormones. He feels that she may have a pituitary deficency. He told us that her Cortisol levels are good,...
Saturday, April 4, 2009
Saturday, April 4, 2009 My Visit To See Shailee
I went and spent a few hours with Shailee today. She is still doing good and is stable. Once again she was unable to have formula today due to her dijoxen levels being too high, but they are going to lower the amount of her heart med to correct that and maybe try tomorrow for the formula. They dropped her respirator from level 40 to level 35 and she is still breathing at 21% (room air, like us). Her blood gases were still coming back good today as well. They are suctioning secretions from her throat about every 2 hours, which they said is because she has the tubes in her throat so she is unable to clear it out on her own. She has lost a total of 8 oz. since she has been there so she is down to 5 lbs. 1 oz. Shailee stayed awake for about an...
Friday, April 3, 2009
Friday, April 3, 2009 Another Update For Today
I know i updated already, but i just got off the phone with the hospital and i just had to post this stuff now. Shailee is still doing good. The nurse told me that Shailee DOES GAG!! she gagged 3 times on the suction tube today! They said that they don't know if it is going to be an effective gag or not but we should know for sure in a month tops. they also told me that they found that she has a dual pelvis but they said that it isn't anything to worry about and it isn't going to hurt anything, basically she has a pelvis bone on top of another one, just one more way she is unique. they gave her the suppository and she did poo!! so they are going to give her a little formula tomorrow through her feeding tube!! they got the results back from her heart echo and they said that everything still...
Friday, April 3, 2009 A Couple Updates
We called the hospital and checked on Shailee today. There really isn't a whole lot of new news but her respirator levels have been dropped twice today, and her blood gases are looking good. They are going to check them again in the morning and if they are still looking good they might take the respirator tube out of her throat and put the one back in her nose. Which i think will make her alot happier and more comfortable. Her kindey echo came back and everything there looks good there, and she is still peeing like normal. They are talking about giving her a supository because she hasn't had a bowel movement in a while, and they are still talking about trying some formula on her to see how she will handle it. Other then that she is still doing the same, she is stable and progressing slowly....
Thursday, April 2, 2009
Thursday, April 2, 2009 You Take The Good With The Bad
We went to see Shailee today. She seemed very uncomfortable today but i think it is because they intubated her again (put the oxygen tube down her throat) which they had to do because her blood gases were still too low. But she had her tounge hanging out and was messing with the tube most of the time, and when i said something about her tounge the nurse that was on duty (one i have never met until today) was very short and rude and tried to tell me that it was part of her syndrome but i have never seen or heard anything about the tounge hanging out of their mouths like that, and i have done much research. And maybe it will be a thing for her, but i just find it odd that in all the pics i have she only has her tounge out in the ones that she...
Wednesday, April 1,2009 A Few New Changes
We didn't get to visit today since hubby is sick, and i had a c section and can't drive, not to mention it is an hour and a half drive from home, and we have three other small children at home to tend to as well.....wow things are truly all over the map right now. But i have called and checked in on Shailee several times today (which i do everyday, no matter what). They told me that she is still stable and doing good. She did have another heart echo today as well as a kidney echo but we wont know about them for a day or two. they heart doctor changed her heart medication to something that he feels will be better for her. Her blood gases were a little low today but could just be because of the medication change. they are talking about possibly giving her some formula tomorrow via a feeding...
Monday, March 30, 2009 Finally A Little Hope
We went to see Shailee today. She is still stable and doing well. She was a little jaundice today, but nothing out of the normal. Her belly is healing very well, they had her foot casted today when we got there, they are starting to correct the club foot. She will get a new cast every week until it is better, and they feel it is only going to take 2 to 3 castings to correct her foot. She did have a heart flutter today which put her heart rate in the 280's but she corrected it herself and went right back to normal within seconds. The chaplin at the hospital came and did a blessing on Shailee as well. The best news of the day was when her doctor came in to talk to us about the chromosome tests that they did. they still don't have the final report...
