Well its been one long and crazy day! We spent our day in the ER. Gi called me and told me that buddy cannot wait till tomorrow to get fluids and get her to the ER asap. So we did....When we got here her bp was pretty low and she was just weak looking...We tried to start the fluids asap but that didnt work we couldnt find any vein in her arm nor her hand now mind you we can only use her left arm because she cannot have any ivs, blood pressures , or blood work because she has blood clots in that arm so it makes it harder to find a decent vein so after 4 unsuccessful sticks we got one in the back of her arm....Once we got the fluids running her BP went up and it was looking better and she had a little color.....Now since this is a every week ordeal we have to think about what to do for a iv its either placing a picc line or placing a port. For those who dont know a picc line is a central line in the arm that goes to the main artery of the heart.. a port a catheter thats placed under the skin in her chest and when we need to use it we just access it and go from there...Now the problem is buddy is prone to blood infections and with a port or a picc line every time she was to spike a fever we are automatically admitted to CHOP for antibiotics....We have to discus these thoughts to GI and see what he thinks because things havent been the best here and like I said if this is going to be a weekly thing we need to do a picc line or a port! Its just horrible seeing her go threw this and watching them stick your child and it being a fail....Also gi is concerned about the weight loss so we have to try and figure things out...It isnt good that her output is 1100 every single day and we have no idea where it is coming from! Well that was our day! I hope yours was better than ours but no matter how hard things get we will continue to fight! Please keep those prayers coming! Its been a very stressful day and we are very tired Ill update in the morning! Im praying for a uneventful night and tomorrow is another day so i know with all your amazing prayers God will grant us a okay day! It really means the world to us! Thanks so much for everything you do thanks for loving my sweet girl! So many people are cheering and praying for you Jocelyn its just amazing! We will continue to keep on swimming and we will never lose hope for Jocelyn! #LittleFighter! #JustKeepSwimming #HopeForJocelynđ night night! đ´đâď¸đ its just been a rough day! Lets try and hit 3,000 prayer warriors for the new year! Share buddys page. @Hope For Jocelyn also I meant to put if buddy drains a lot tonight and if she is still really pale and isnt good Ill have to call and we might have to get more fluids tomorrow but we are trying to avoid that!
Posted on: Wed, 31 Dec 2014 00:55:49 +0000
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