Thursday, December 18, 2008

All I want for Christmas

We are now back at our new home away from home. For those of you that do not know where i am talking about it is Children's Hospital. Sydney got admitted again yesterday. Last Thursday at the pediatrician's office her hematocrit was 24. Her doctor talked with her GI doc but they did not want to do anything at that time. We actually went back on Friday afternoon for another blood draw. Her crit had come up to 25 so at least it was holding stable. Her doctor wanted to recheck her yesterday so that is why we went in. Her hematocrit yesterday was 22. Her doc drew another lab that was a send off so she wouldn't know the results til today. She said at that time she would call me and the GI doc and discuss what to do. Well we leave the doc's office and go by walmart. Mom was with me so she stayed in the car with the girls while I ran in to get something. While I am in there mom calls me and says that Sydney is throwing up. So here we go again with the wonderful coffee ground vomit. She proceeds to vomit about 5-6 times. After putting in a call to the peds office and waiting several hours to hear anything back I finally got a call back from her ped. She had spoken with the GI doc and they had decided to go ahead and admit her.
So away we go to the hospital, again. They gave her a unit of blood last night and this am her crit is up to 34. They inserted a NG tube last night and started her on gylytely this am to try to get her all cleaned out. They are going to go in at sometime tomorrow and scope her again but this time with her all "cleaned out." Hopefully this time they will be able to get a better look at things and have more of an idea as to exactly what is going on. I just want answers.
If I could write a letter to Santa as for what I wanted for Christmas it would have only one thing on it. And that would be for my baby to be all better. Childrens Hospital is such a great place and has helped many many kids you just never think that one of those kids will be yours. Especially having worked here as a nurse I never thought one day I might be in here with my own children. and this is our 3rd hospitilization this year. ( 1 for Mary Kate, 2 for Sydney)
so please keep us in your prayers right now. pray for sydney to get better and for these docs to be able to figure out what is going on with her. I will try to write more when I know more.

Saturday, November 29, 2008

Tagged



So evidently I have been tagged. This is where you take the 4th picture from your 4th picture album on your computer. So here is the pic above. Let me explain. My great friend Sue May who worked in Labor and delivery with me came to L&D when I had Mary kate in May. She went back to the OR with us and took a ton of pics with her camera for me of the birth. she got some great pics. Anyway, she just gave me her memory card to upload them on my computer and at the beginning of her memory card were some pics of her family. this pic is her and her daughter, hannah. The other pic is one of the great shots of Mary Kate coming into this world that I would not have had had it not been for Sue. (Yes that is her coming out of my stomach. Sorry its a little graphic but if you ever wanted to see a c-section there it is.) So thanks Sue for being such a great friend and coming with me to help capture one of my most important memories. you are awesome!

So now I am tagging 4 people:

Joy Brunson, Autumn Urquhart, Jenny Basselin, Kara Reid. Have fun!

Hospital

Sorry it has taken me so long to post this. I took Sydney to her pediatrician's office almost 2 weeks ago on a Monday afternoon. She was pale and her energy level had gone way down hill. I knew her hematocrit was already a little low from being tested at the GI doc a few weeks before. The pediatrician agreed that she was pale and ran her blood count. Well the lucky number ended up being 15 almost 16 he said. Way too low! The nurse at the GI office had told me they want it between 30-40. (A few weeks earlier at the GI doc it was 27.) So this bought our ticket to Children's Hospital. We were on our way to the hospital and on 8th avenue Sydney started to throw up old blood. We finally got the the ER and when I walked in holding her and the triage nurse saw us she freaked! She said is that blood she threw up? I told her it very well could be. (Sydney had had a few M&Ms at the doc's office.) As this point another nurse walked up and the first nurse told her go ahead and take her back she is vomiting blood and is pale. So we got to go immediately back. Her heart rate was between 160-180bpm. She was pittiful looking. By this time she had pretty much lost all her energy.
They put us in a room and the nurse and 2 docs came in to find out about her history. A few minutes after they were done the same nurse and another came in to start an IV. Well, the nurse starts looking around for a vein and doesn't instill a lot of confidence in me that she knows what she is doing. She kept telling the other nurse well maybe this one or maybe I should go here. Well, she finally decides to go for a vein in her AC, where the bend in your arm is. Which I was always taught look there last. Well she proceeds to stick her and then "dig" around in her arm as she tries to find the vein. Being a nurse myself I don't have a lot of patience for this especially when it is my child. Well the other nurse takes over and guess what they hit an artery. So they took the IV cath out and the other nurse starts to look in her foot for a vein. She finds one immediately and sticks and this time it goes right in, Praise God.
A few minutes later one of the doctors comes in and tells us he has been talking to his attending and they feel like it would be best for Sydney to go to the pediatric intensive care unit that night. Well at that moment your heart just sinks and you think to yourself, oh my gosh my child is sick.
They take us to the PICU and tell us that while they are admitting her we are not allowed back there with her. Let me tell you it is not fun to be told you can't go with your child to this unfamiliar environment where people are messing with her. I think she was out of it enough to not really care though that we weren't with her. About an hour later or so it felt, the nurse comes to get me and Rusty. Her name was Emily and she was taking care of Sydney. I actually went through hospital orientation with her way back when I first started at Children's. She was really sweet and it does give you some peace to know your child is in good hands. They had brought a TV over to Sydney and she was watching Little Einsteins when we went back there. I got her and just held her. During the night they proceeded to give her a unit of blood. Dr. Cavender, a GI doc, came by and saw her and said that they would go ahead with her colonoscopy and endoscopy on Tuesday. At 10:00 we had to leave her in PICU. It is awful having to put your child in a crib and walk out and leave her by herself with her crying after you yelling "momma." it just breaks your heart. At 12:00 we got to go back in and thankfully she was sound asleep. We were able to stay with her until 2:00. During that time her unit of blood had finished and an hour after it was done they drew another hematocrit on her. It had come up from 16 to 26.4!!! How amazing was that??!!! Even the doctor was surprised it came up that much. Her heart rate had settled down to about 110-120bpm.
The next visiting hours were not til 8:30. We went out to the waiting room to try to get some sleep. Well waiting room chairs are not that comfy. Around 4 after waking up about every 15 mins, i decided to get up and head home and take a shower since it might be my only chance to. I got back to the hospital around 6 and mom headed home then to shower. Rusty went to his aunt and uncle's house by Legion Field because i had brought him clothes.
At 8:30 we went in. She was awake sitting up in bed watching her new found favorite Care Bears Movie. We watched The Care Bear Movie all day. She didn't want to watch anything else. Her hematocrit was up to 26.8. She was definelty more awake today. We waited all day for them to take her for her procedure. Around 1 she started asking for juice and saying eat. Poor baby she couldn't have anything. We had to leave her again a little after 2, again very heartbreaking. Finally at 3:45 they came to get her for her colonoscopy and endoscopy. She took to the OR with her 2 of her Pooh bears. I tried to take one of them but she wouldn't let me. After kissing her good-bye they took her to the OR. About 45 mins later her doctor came out and told us that she has stomach ulcers and gastritis. He said he didn't know how she got the uclers but he biopsied everything and hopefully we would know more when he gets the results back. They took her to the special care unit afterwards to watch her that night. She was doing much better that night. She finally got her juice. we were able to stay back there with her most of the night. She slept pretty good until they woke her up around 4 and then we had to watch the lion king until she feel back asleep at 5:15.
Her doctor came around that morning and said that she could eat breakfast and as long as she tolerated it we could go home. her hematocrit that day was 29.9. She ate her normal amount of breakfast and tolerated it fine. finally around noon we were out of there. WE went to go get Mary kate from Dinana's house. Dinana said she had had a couple of really big "Spit ups". she had changed her clothes once and MK's clothes twice. we finally got home, so good to be home. the rest of the day was very uneventful.
On Thursday Sydney felt great. I really felt like she was acting like her old self again. until that night..... around 10:30 that night she woke up and started throwing up. She proceeded to throw up another 10 times that was just straight bright red blood. I tried to call the GI doc on call and never got a response after calling two times. So i felt like i didn't have a choice but to take her to the ER. Of course I am at home trying to reason things out for why she is throwin up blood. I mean she did just have an endoscopy on Tuesday that he biopsied. But to no avail we were off to the ER. In the meantime, I call my mom to tell her and she tells me she is throwing up too. Poor mommy. In the ER her hematocrit was 30.9. They finally got in touch with the GI doc and he said that he knows where her bleeding is coming from so he wasn't that concerned. he added another medicine for her and we were able to come home. Right before we left the ER, I threw up. It was horrible. Rusty had to be at work at 5 that morning so I dropped him off at Verizon. The rest of us came home and went straight to bed. Thank goodness Mary Kate was so good that day. When Rusty got home that night he started throwing up. The stomach bug had hit us all. Needless to say we had a fun weekend of the stomach bug at our house.
So alright I guess I have bored you all enough but that is the update on Sydney. Also, she is supposed to be taking a lot of meds right now. She unfortunatley is not so great at taking them. We have tried everyhting we know to get her to take them and it doesn't work. Please pray that she will start taking them better. I am so afraid that we are going to back track and end up right back in the hospital. She is already starting to show some signs of backtracking. Thank you to all for all the prayers and thoughts. Thank you to Kasey for letting MK stay with you while we were in the hospital. Thank you Dinana for keeping MK on wed. Thank you to all who came to visit us and for the gifts, balloons, etc. we are so blessed and thankful for such a wonderful group of family and friends. We go back to the doc on Tuesday, more to come then....

Friday, November 14, 2008

Update on Sydney

So as most of you know, Sydney has been having diarrhea for 2.5 months now. Some days she might have 2 bad diapers and the next 6 bad diapers. And when I say bad diapers, I mean bad diapers! Her pediatrician ran some labs on her poop to test for parasites, c-diff, and several other diseases. Everything came back normal. Her doctor felt like she just had a stomach virus and was taking a long time getting over it. Well, after being sent home several times from mother's day out, I called the pediatrician's office back and asked them what was I supposed to do. At this time, we were going on almost 2 months of diarrhea. Her doctor's office said that they felt like she was just still getting over a stomach virus and to give it another 2 weeks. Well, after I got a little irritated with the nurse, she got us a GI consult. I just felt like there was no way Sydney had a stomach virus for 2 months. And not to mention none of us had gotten anything from her.
So on October 29th, we went and saw a GI doctor. He felt like after listening to her history that she might have celiac disease, a thyroid problem, or some kind of food allergy. He drew 5 tubes of blood from her to test several things. He also sent me home with 3 hemoccult slides to do and send back to him. (these are to test for blood in her poop.) Well, last Wednesday his nurse called me and said that Sydney's hematocrit was low. It is 27 so she is a little anemic. Which totally explains why her face is so pale, why she has big red circles under her eyes and why she has no energy. She will play for a little bit and then she will just lay down on the floor totally exhausted. So because her crit was low he was worried she was losing blood in her poop. So they got the 3 slides i sent them and sure enough all 3 tested very positive for blood. He sent us to Children's Hospital on Thursday to have a meckle's scan done. It is a test where they inject dye into your bloodstream and then take pictures every minute for the next hour of her stomach. In this test they are looking to see if any of the dye shows up in her intestines which would indicate that she has stomach lining in her intestines. If positive then she would have to have surgery and have it removed, but she would be fine after surgery.
Well, her test was normal and there was no stomach lining in her intestines. After the test we went and saw her GI doctor. oh, i forgot to mention....last Friday on our way to mother's day out sydney started to cry. I turned around to look at her and she has throw up all over her. While i am looking at her she proceeds to throw up again. I get her cleaned up the best I can and we head home. On the way home she threw up 3 more times. Her vomit was dark brown liquid. Not a good sign. On Thursday on the way to the hospital she threw up again in the car and again it was dark brown liquid. it looks like coffee grounds. Which basically means she is vomitting old blood. So when we met with her doctor he decided that we needed to go ahead and set sydney up to have a colonoscopy and endoscopy. So she will be having that done on december 2nd at Children's.
I feel so bad that my poor baby is going to have to go through that. She will be asleep for the procedure but the day before we will have to get her to drink a ton of miralax to make her clean her system out. It is not going to be fun for her or me either. I wish i could take her place and it be me instead of her. I am just so ready for some answers and for her to feel better. you can look at her and tell her color is pale and that her energy level is low. Her doctor doesn't know what it could be but he said his 3 best guesses are some form of crohn's disease, celiac disease, or possibly an ulcer or inflammation.
Please keep us in your prayers as we go through this time. Pray for Sydney to feel better and for us as we have to wait for 2 weeks before her test. The waiting game stinks. I just want my baby better and back to herself.

Sunday, October 26, 2008

Sydney



So for some reason Sydney loves to be naked. I mean she does have a diaper on but other than that she is naked. I practically have to bribe her to put clothes on. And if she has clothes on and we are at home and she knows we aren't going anywhere then she takes them off herself. And when she gets them off she laughs and dances around like she has made some big accomplishment. This morning when she got up she unzipped her nice warm pjs and took them off and ran around naked in the freezing house. I hope she is not practicing for a future career! Also, she has got some wild hair. God bless her she has been cursed with her mom's hair that has some natural curl in it. Right now it is in that awkard stage trying to grow out. When she wakes up in the morning her hair is so wild. It takes a little work to get it tame. She is such a mess, but so sweet and such a true blessing!
Here are a few Christmas tea towels I have made. They are so cute! what great Christmas gifts!











zoo

So earlier this week we went to the zoo with my friend Susan and her little girl Meredith. Below are some pics of Susan, Meredith, and Sydney (after pitching a major fit) riding the carousel. Which my child of course did not want to
get off of when it was over. Also, like I said I have gotten into this whole sewing and applique thing. Sydney has on an outfit I made her in the zoo pics. So i am going to post some pics of things I have done. Hope you all enjoy! =)






Friday, October 24, 2008

We made it through Mother's Day Out!

We finally made it through a whole day of mother's day out with no poop!!!! As most of you know we have been battling diarrhea with Sydney for over a month now. We have missed a whole week of MDO and have been sent home early other days because of diarrhea. But we actually made it through today with no diarrhea! Poor baby! I know she has got to be tired of this mess because I know I am! I talked to the doctor's office Wed. afternoon and got a little testy with the nurse. She was telling me to give it two more weeks and that Sydney just had a "virus." I mean who has a stomach virus for over a month??? Besides they have already run some tests in the doctor's office and they have all been negative. And no one else has gotten it. So after arguing a bit with the nurse, she got me a GI consult. So Sydney is going Wed. afternoon to a GI doc. I hope they tell me nothing is wrong and that maybe she is just having a hard time getting over a "virus." And if that is the case at least I will have some kind of piece of mind knowing nothing is wrong, but this is not the first time Sydney has had stomach issues. Poor baby she inherited something from her daddy. =( So anyway we will see what they have to say about things. I will keep you guys posted.

mk

mk
Mary Kate

sydney

sydney
sydney

Sydney and Bo

Sydney and Bo
Sydney and Bo

chan's shirt

chan's shirt
My first appliqued shirt I did