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, but her thyroid levels are low, and her growth hormone levels are low (they should be between 20 and 40 and hers was 6). He wouldn't give us alot of information at this time b/c there is nothing set in stone with this since she isn't feeding on her own yet and she is getting all of her nourishment from an iv. he is going to do another thyroid level tomorrow, but he will follow her more closely once she is feeding on her own and they are able to see what all her body can do on its own. We were very upset at the intial news of this, but once I got home and did alot of research on this problem i have found that all the deficencies that are or can be caused from this are treatable in one way or another. I just hope that it doesn't turn out to be something that she is going to have to deal with later down the road but it is another time where all i can say is that we will have to wait and see. I really am starting to feel like all i get done doing is waiting and waiting, and it is hard b/c there is nothing that i can do about it, or for our daughter but sit and wait. Right now the main things they are worried about getting taken care of first are her heart and her respiratory issues so she can be off of the ventilator and breathing completley on her own. That is pretty much all there is for today, so now i sit and wait since that is all that i can do. I will update again as soon as i hear more. Here is a new pic of Shailee from today.

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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 hour while i was there and was being very active just moving her arms, head, and leg around (she can only move on due to the cast on her left leg but she does wiggle those toes). She is still intubated right now, and they are hoping to remove it soon and put the oxygen tube back in her nose but the heart doctor wasn't ready to pull it just yet. She is having a chest x-ray done tomorrow to make sure that there is no aspirations (or fluid in the lungs), her last chest x-ray came back fine with no signs of fluids, swelling, or infections of any kind. Shailee will also be having another ekg done tomorrow to see how her heart is progressing. Here is a new pic that i took of her today, it isn't the best but it was what i could get of her since she is in a plastic "house" right now. But she did have her eyes open in the pic which is a new one for us.

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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 looks good even with her respirator being at 21% which is the same as room air. so when they check her blood gases tomorrow morning, if they are still good they will be removing the intubation tube from her mouth ans replacing the one in her nose instead. Well that is really all for today, but i am sure there will be more tomorrow when i get home from visiting my little Shailee.

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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. I am going to see her tomorrow, so hopefully i will have more news.

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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 has the oxygen tube down her throat so i am hoping that is the only reason why, i just really feel the nurse could have been a little nicer about my concerns instead of being so rude. The nurse also told me very bluntly i might add, that Shailee can't swallow! Later the CNP stopped by and talked to us about Shailee and i asked her about her not being able to swallow and she said that she just doesn't seem to have a gag reflex and she doesn't swallow well, but they don't know if it is permanent or not, so it is another thing that time will only tell, so something else to play the waiting game with. We also saw the orthopedic surgeon today as well and he told us that her belly is still healing well and that as long as that doesn't change they wont worry about the reconstructive surgery for as long as a year to two years. Right now the heart is the most important thing to get passed, and she is having another heart echo tomorrow so they will know more once that one is done. Shailee was also very active today just moving her arms and legs (well leg since one is in a cast) all over the place. She was opening her eyes alot today as well, and she isn't looking as yellow as she did a couple of days ago. All we can do is to take things one day at a time, and we will take the good with the bad, but she is still hanging in strong and i just know she is going to make it out of this sometime.

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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 tube to see how she will handle it but it will al depend on how she is doing tomorrow. But all in all she is still doing ok which is all that matters right now.

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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 but they do have a diagnosis, and it ISN'T trisomy 13 or 18 like they had thought in the begining. Shailee is missing part of chromosome number 5, which is called Cri-Du-Chat Syndrome (french for cry of the cat). This is a very rare syndrome, turns out it only effects 1 in 50,000 children, but the good news is that she is going to be ok. Shailee could face a number of problems in her life such as mental retardation (i really don't like that word lets say metal handicaps), developmental delays, and many other things, but the main thing is that she is going to have a life. There really is no way to tell how mild or severe things will be for her right now, we will see as we go. Now the doctors are going to start really working on her problems and getting things corrected. We are just so happy that she is going to be with us for a long time.

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