July 5, 2011 - eviction from the ICU

Yeah, we are finally on the floor. I almost thought we wouldn't make it. Ellie continues to run a fever on and off and have diareah. They kept the central IV line in her neck and the IV line in her head. She is still on the really strong antibiotic but they can not find the source of the infection. There are several possibilities but no defineates. I know we will be here on the main floor for at least 2 days if not longer. They are concerned that there is an infection in the incision but it is on the fence so they want to watch it because if there is it could be a staff infection. Like I was telling the dr. if a staff infection and pneumonia was all that happened to us...we have no problems. Considering the alternative (death, permanent pace maker, stroke, brain damage...ect)not to mention all the countless things that I have seen other children come into the ICU with....we got off pretty easy if you ask me....Thank you Jesus for my MANY blessings. Ellie continues to play and eat but has yet to smile or coo at me. It will probally break me down into tears when and if she does. Thank you all for being a blessing to me...god bless

July 4, 2011 - happy 4th of July

They want to keep Ellie in ICU another night. Maybe we should put in for a change of addrerss..lol (just kidding. If Ellie is going to be sick I would rather her be sick here at the hospital with all the monitors and medicine then at home with me in a panic because I do not know what to do for her. They said they just want to keep and eye on her. She had loose stools and was throwing up last night and one of her counts is high. They would like to take the central line out of her neck today because they said that might be the source of the trouble the only problem is if they take it out they have no place to put an IV back in besides her head. During surgery they tried all of the obvious veins and failed and the surgeon swore there was the best vein people working on her. Anyway, they said they want her to stay another night so they can watch her but if the ICU becomes crowded then Ellie could be bumped to the main floor. However, Ellie played last night with toys and her balloon. I told Kenny to stop at the store on his way in this morning to get her some new balloons to look at. Hopefully we will make it to the main floor before August...lol

July 3, 2011 silent night

Ellie is finally getting some sleep. I am not sure if she has just given into complete tiredness or we finally have the right combination of pain Medes and stomach relief. She has gone for a long period of time without pain meds tonight. She is eating, and pooping, and even playing some. Yes I said playing, that is definitely a sign that she is feeling better. At this moment in time we are definitely looking at going to the main floor tomorrow and one step closer to going home. Tomorrow will be 7 days. The nursing staff and drs at kosairs are outstanding, but I am ready not to be here. I am soo grateful for my path. You always find someone whose path is worse then yours. When the day is over we are sitting pretty high. Ellie will go home with me, she will live a long and happy life. She may have some bumps along the way but I see the future now and she is in it. Thank you Jesus for the many miracles you hae given me.

July 3, 2011 pneumonia

We will be in ICU another night. The suspect pneumonia. We are waiting on test results. If it is pneumonia they said to plan on being here at the hospital for at least another week. What next. She was doing soo well. I will try to remember to count my blessing. Ellie surgery was a success and she is overall doing well. This is just a bump in the road.


Update 6:20pm. Ellie is doing soo much better. She is eating and sleeping and finally went to the bathroom. Her fever is down and they are finally getting some of that gunk ut of her throat/lungs/nose. They said pneumonia is a common risk factor during major surgeries. God is good all the time...he put this song of praise in this heart of mine. GOD IS GOOD ALL THE TIME

July 2, 2011 - ICU again

Well we didn't get to go to the floor. Little Miss Ellie decided to run a fever and be really fussy right after we were ordered to transfer to the main floor. They did some tests and discovered that the top part of her left lung is filled with fluid. They have put her back on oxygen, antibiotics, and put back in her rectal thermometer, and out her backon IV fluids because she decided she wasn't going to eat today. So they decided to keep us in ICU again. She is finally sleeping after an all day fight to get her to do so. She has been uncomfortable all day...poor little girl. I can't wait to see my smiling angel again. I asked if they thought we would be in the main floor tomorrow and they are not sure.

July 2, 2011 6:30 am

Ellie is doing soo well and she is soooo beautiful. I love staring at her. Our room is right across from the nurses station and most of them come in from time to time to see what they are calling "The cutest baby in the unit". At the moment we are still in ICU but I really think we will be moving to a regular room today sometime. She is doing so good. She is off of all the medicine drips. She is taking lasix 3 times a day and morphine every 2 hours as needed for pain. She has been going 4 hours between morphine doses so I think they may be stepping that down this morning as well. PTL for all of his mercies on her. I have really come to be grateful for my blessings. There have been lots of times I have "felt sorry" for myself. Being at the hospital I have realized how blessed we are. Our angel will go home with us and live a very normal life. Since we have been at the hospital there has been a family whose baby has died, and a family whose baby is a preemie and only 12 days old on life support and has gone through heart surgery as well as countless other procedures. Not to mention many other health cases. Also, I have met a family whose 16 year old son was hit by one of those mud race cars at the fair grounds while sitting in the stands. Their family has been up here at the hospital in ICU for over 2 weeks and the end is nowhere in sight and the out come is unknown. I pray for all the families up here. This is the real world...everyday is a blessing, every step is a blessing, every breath is a blessing, and every word spoken could be your last. Thank you lord for my many blessings. God bless the men and women who put their emotions to the side each day as they love and care for these beautiful children.

July 1, 2011 3 days after surgery

Ellie is still doing great. We are staying another night in the ICU. Ellie is having a hard time with pain. They try to take her off the pain drip and she starts getting rally fussy. They have her on morphine now and she finally seems to be having pain relief. They said this is common with children with down syndrome because they for some reason require more sedation when they are needing to be sedated and more pain medications to control pain. They want to watch her one more day. She looks BEAUTIFUL!!!!! I am soo amazed. The dr told me that she is doing better then most children who go through the exact same things. God is good...all the time...he put this song of praise in this heart of mine...god is good....ALL the time!!!