Days 4, 5 and 6

Days go by in a blur, so remembering what goes on is hard. It's like you are living your life but u are watching from the outside in. Bella is doing well the side effects have not presented themselves yet and she seems to be a normal kid just living at the hospital. On day 4 she has to have her dressing cleaned. We have to take her into the sterile room and hold her down to do it all the while she is screaming away. I'm the one who goes in with her. Im the only one who can handle the cries of pain which is very hard to bare but someone has to do it and I know Leo could never bare it. After this is complete she gets to go to the toy closet and pick out something special. You can tell the incisions are bothering her. Imagine having surgery and then you not receiving any pain medication. Yep that's how it is for her. All she gets is Tylenol. I mean she must be hurting right? I try to stay on top of the nurses and make sure they are giving Tylenol every 4 hours. She can no longer take ibuprofen. Apparently it can mess with people's blood count, so we must stay away from it. Day 5 begins at 4 am. I wake up to thinking Bella had peed out of her pull-up because she is soaking wet and so is the bed and the floor. It is literally everywhere. I mean this is a high probability since they are pumping her full of fluids all day and night. So I wake Leo up to help me get get cleaned up and I call the nurse. Leo goes I pick her and her iv snags. Apparently sometime between 12am and 4am she has deaccessed herself. What this means is she has somehow pulled the needle they use to insert iv's out of her chest and out of the port. And all that fluid is actually iv fluid. Not pee. I call the nurse again 911 this time. They all rush in and take out the needle. They must get the sterile room ready so that they can re-access her. There is no time for the numbing gel. That takes an hour to start working and we don't have time for that. The longer we wait the more at risk she is for infection. And since her counts are all low she is bleeding quite a bit where she ripped it out. Finally they are ready for us. I'm the one who goes in with her again. This time is pretty much the same and consists of mainly screaming. Mostly I think she is scared and holding her down does not help. We all wear masks since this is a sterile environment. They clean it off, spray it with freeze spray and then reinsert the iv. I'm sure this has to hurt and I would give anything to take away her pain, but all I can do for her is be strong and be there when she needs me. We go to the toy room to pick out her surprise. She picks out some princess puzzles we go back to the room to try and sleep. We don't get much sleep after that and she is very weary of her port. The next morning Gabbi is granted access to come back in to the room. Everyone is ecstatic including Bella. She loves Gabbi so much and when she sees her, her eyes just light up. Sunday marks the day to receive the PEG shots. They put numbing cream on an hour before and then we head back into the sterile room. She already knows what this room means. This is the room where the 'owies' happen. She begins screaming the moment we walk in. They have me sit on the bed with her facing out. It's very quick. And since she must have 2 doses they do one in each leg on the count of 3. We then get to pick out another toy. She is kind of over this idea, but she picks one out anyways. The shots go over well. No allergic reaction. Bedtime arrives and we all settle in for the night.

"For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope." ~Jeremiah 29:11