Thursday, May 13, 2010 11:58 PM, EDT

I havent updated lately, the past few days have been a little crazy! After working 13 out of 14 days I had hoped to enjoy my 2 off days getting caught up around the house and spending time with Elizabeth, when she decided to pull her feeding tube out of her nose! So Monday I had to take her to the peditrican to get the tube put back in then to radiology at Erlanger to make sure it was in place, which of course it wasnt. So the radioloogy people "attempt" to get it in place and of course all the did was make her upset. So the Peditrican made us an appointment with the GI dr for Tues. We went there and they put the tube in and went us to xray and they said it was in place. Tried to give her her meds through it and of course it didnt work, went back to GI dr sent back to xray to find out the tube was kinked in her intestitne. They moved the tube and it worked so home we went, only to find the tube again didnt work!!! So we ended up in the ER Tues night -Wed morning until someone decided to help us out and fix the poor girls feeding tube!! Luckily its all fixed and working well now. She has an appt with her pulmonologist tomorrow so maybe we will hear something about our trip to Ohio.

Saturday, May 8, 2010 2:16 PM, EDT

Still doing good at home! She is now off of the morphine wean and has been doing good with it. Had two Dr appts yesterday, she has gained some weight shes up to 10lbs 2oz now.  Planning to start weaning her from the steriods over the next few weeks and hopefully she wont have any setbacks like last time but we will be watching her closely. We are still waiting on the Dr to get everything for Cinncinati approved through our insurance before we go up to visit. They adjusted her feedings through the tube, she only has to be on it 12 hrs a day now so we are trying to get to eat more on her own hopefully she will do well with it and be able to not need the tube.

Tuesday, May 4, 2010 2:56 PM, EDT

Our first night went well other than the before mentioned issues with medicine and feeding pump. She seems to be doing well. Already have a follow up appointment in the morning with her peditrican and then a appointment on Friday with the pulmonlolgist. We will probably get a few weeks home and then we will be taking her to the hospital in Cinncinati. We really appreciate everyone's concern, and help over the past few months. Elizabeth is home but still has a way to go before is she better. Please continue to keep her in your thoughts and prayers!!  I have posted a picture of us before leaving the hospital yesterday...can you tell we were just a little happy to be leaving!! ;)

Monday, May 3, 2010 11:07 AM, EDT

Haven't had much to update on the past fews days, which is probably a good sign. She has ben basically the same doing well on oxygen and has been able to decrease the amount needed to maintain her saturation levels. Still weaning off the morphine and ativan, which she is off of ativan today and should be off the morphine in 2 days if she doesnt show any signs of withdrawl. She is being feed by the feeding tube/pump but they have started turning it off 6 hours a day so that we can just try to feed her then with a bottle.
The best news of all to update is that we may be going home later today or tomorrow!!! We are waiting on the portable feeding pump that she will be using at home, once it gets here and we learn how to use it we should be able to go home. All the medicine she is on is stuff that we will be able to give her at home and we already know how to monitor her oxygen needs. I will update later when a decision is made about it.
   I would like to thank those who were able to make it out to the March for Babies yesterday to represent Elizabeth : Carie, Renee, Susan, Latisha, Anna, Kim and Ashton.