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.com

1. click enter
2. click client
3. type shailee in the password box and click enter

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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 give her medications to help her relax such as the morphine and adavant as she needs it. as far as miss shailee goes, well she isn't doing the best. her oxygen settings are still very high they were at 71% when we left today, she is very irritable and not sleeping well without medications to help her relax. she is breathing very heavy and fast and her secretions are very excessive as well. they are constantly suctioning her and it just comes right back. they can't tell us how long they think she will make it they just said it could be days or weeks. her lungs are not showing any signs of improvment and they don't seem to think that they will change, also they said the higher the vent settings go the better chance there is that she could end up with a hole in her lungs which would lead to her needing a chest tube which isn't something that we want to happen either. but we all spent alot of time with her this weekend and spent alot of time holding her and just loving her and being with her. it is pretty much in God's hands from her on out. i will keep you all updated as much as we can. thank you for all of the kind comments they mean alot to all of us in shailee's life.

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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 be sedated and dosed with morphine to keep her calm enough to live and that is not what we want her to have to go through anymore and after seeing her today we can tell a difference in her. she is no longer comfortable and happy. none of us wanted to see it come to this, but it is in god's hands and only he knows what is best for her. i will post again as soon as i have a chance.

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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 hasn't got in her blood which it hasn't so that is a good thing. she is taking 73ml of formula every three hours and she is doing great with that as well. they had us watch a trach care video yesterday b/c they are going to start trainging us to care for her. the home health equipment company came to our house yesterday and checked out the outlets and such in the house to get ready for her equipment that she will need to come into the house. we will also have to do training with the company to learn how to use all of the machines that she will have when she comes home, and she will have quite a few of them to learn how to use. Shailee has figured out how to make small noices by pushing air around her trach pipe but they are very very quiet since her vocal cords are still messed up and b/c not alot of air flow gets to them due to the trach but they said that if she will be able to talk that later when she is older she will be able to cover her trach up and talk. other then that she is doing good and there haven't been any other changes. i will update again when i know some more.

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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 her feeds fine. as of right now we are planning to go stay with her for 5 days in July to learn how to care for her so she will be able to come home. other then that there is no new news, i will update again as soon as i know more.

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Marla!

Marla if you read this, please email me..........stacyloaks@yahoo.com

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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 more.

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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. when i called to check on her after we got back home they told me that she woke up a couple of times and was very irritated and she caused a broch spasim due to getting upset and they ended up giving her some morphine to help her with pain and to relax more. so as of right now she is still doing great and now she is finally making steps towards coming home! She also weighs 8 lbs. 14 1/2 oz. now but i am sure that she may lose a few ounces being off of her feeds. but she is doing good and is in the recovery process, i will update more when there is more information.

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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 tomorrow.

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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 and not have to lay down all of the time. I will update more when there is something to update, which doesn't happen very often anymore b/c most of the time i am told "there haven't been any changes" which is better then bad things happening at least. so don't worry if i don't post in a bit, but i think it will be soon since they want to get the surgery done.

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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 been any changes, i will update more tomorrow after we visit with her.

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