Very interesting and productive day. Eden woke up in a great mood, alert, chatty and even ate a pink frosted donut from DD. The PT came by, she is sweet, her name is Brita, and we did PT. I did most of it this time with Brita showing me what to do. Moving Eden's leg and holding the fixator was freaky. I could feel the metal, but I kept it together.
We took Eden for another walk in the wagon to the playroom. I brought my blanky with me, (yes, I have a blanky that my grandma made me!) and that is all Eden wanted to cover her up. Once in the playroom, we had fun. The toys are so-so, missing lots of pieces but we made do. Chris was good at improvising games. The PA came to talk to us about pain managmeet and options, and was trying to sway us to keep the epideral in longer, the longer in the longer the stay, so we wanted to see about just bringing the dose down and see what happens. When she looked at the monitor she realized the dose was already pretty low, so based n how well Eden was doing she agreed to go ahead and stop the drip. We gave her oral pain meds and she seemed fine. Next they removed the catheter and then the IV, so she is tube free. That means, she can be released tomorrow!
We had our first lesson on pin cleaning. They call the screws going into Eden's bones pins. Nice try but lets call it what it is, they are screws in our daughters leg. And it is nasty. There are 9 of them. Eden was hesitant at first but started to touch the fixator and was counting the screws. I am sure each day it will get less strange for all of us. We are instructed to not clean them on a regular basis, only when there is puss (yuck) etc. Otherwise we just rinse with water and keep covered with gauze. Keep it covered? No problem. Ayla gets home Sunday and she loves this nasty stuff, there is a good chance she can do it for us! We were also told it is not a matter of if it gets infected, more of a when. We were told to constantly have a Rx for antibiotics and pain killer and we should keep an eye when we are running low. Most pharmacies do not carry the pain killer they will give us because it is so strong so when we are here for our check ups every two weeks we should be sure to get a refill if we are low. No one said this would be easy, but it is pretty insane when you think what we are doing!!
We got the walker and wheelchair today. I tried to lift the wheelchair and that was not happening so we sent it back. We are buying a BOB jogging stroller instead - that was recommended by several people. I need to be able to get her in and out of the car and with that wheelchair it was not happening. She isnt too into the walker but we will ask Adina to use it for a few minutes and I am sure that will make Eden want it. Guess sibling rivalry can sometimes be a good thing.
Eden managed to stay awake most of the day, she finally napped around 3. Chris and I tried to rest but the constant flow of people into the room is ridiculous. There was no time for rest with OT, PT, Social Worker, anesthesia, PA, Rabbi, resident, fellow, RN, Pharmacist and I dont even know who some of the other people were. I am sure you know this, but there is no rest in a hospital. Our RN tonight is awesome and has been a great help - we had her Tues also. She managed to get the orders changed so she would not have to wake Eden so often during the night. But, she did strongly recommend we give her pain meds every 4 hours, even during the night for the first week. We are equating this to having a new born. But at least she is potty trained, can feed herself and talk....
We plan to be home for the weekend, Ayla and Jacob return from sleep away camp Sunday (YEAH) and we will drive back and forth to PT for Mon and Tues so the kids can have some time at home before we drag them down with us.
Technology has also been great. I chatted online with my uncle and a few cousins in Israel today and am hearing from people I have known my entire life and through different phases of life. It is pretty cool. Our family and friends from near and far are with us through all of this, it is a good feeling. : )
As for this pic, she was not getting sick. Since she had a stomach bug a few weeks ago she keeps saying I am going to be sick, and she did get sick twice on Tuesday, but has been fine since then. But, the bucket has become a crutch for her and she is even sleeping with it at times. Oy...but if this is the worst, we are lucky! Needless to say, it is coming home with us.
One last thing, a special shout out to a few people...
- The Fox family that hosted us Monday night and visited to keep us sane. Good luck with the flood...
- The amazing people who saw the post about sending e-cards and were right on it, Eden loved opening them
- Thanks to those that sent balloons, Eden loves them and cant wait to show her sister
- Thanks for the activities to help keep her busy, stickers and coloring and nail polish, we had fun
- And a special friend who figured out this online craziness just to stay informed, you are the best Joel!
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