The next morning I wake up around 7am and I notice that Mari’s face on her right side is so swollen that her eye is almost swollen shut and her left arm, with the IV in it, is very badly swollen as well. I ask the nurse to check it and she says that it is fine. When the attending physician and the residents go on rounds they come in and tell me that Mari no longer has Shigella but instead she has E. coli and the strand she has is O157:H7 (To read more about E. coli O157:H7
http://www.cfsan.fda.gov/~mow/chap15.html). They say that they are immediately stopping all antibiotics as they make this in particular E. coli worse. As a precautionary measure, she is having her transferred over to the Pediatric ICU just for observation. She also tells the nurse to take out the IV and start her it someplace else with how swollen her arm is. I start to cry because people do not get transferred to ICU for something as simple as her diarrhea. At this point she still has not peed and they cannot tell me it’s because of her diarrhea as all people have to go pee to get the pollutants out of their body.
So I call my husband Keith to let him know. Then I call his mom as well. Keith finally arrives around 9am. In the mean time, the doctor has the nurse relocate her IV because of the swelling. They bring in 3 or 4 other people as well because I tell them Mari will fight tooth and nail against another stick. Mari starts to fight and squirm. It is hard to hold her down. Then her nurse that is assigned to her for that shift actually tells Mari, “Now, don’t you want to get better. You need to sit still so we can do this.” I look at her and say in the nicest way I can possibly muster, “She has autism and doesn’t understand.” She says, “She does. I did not know that.” That does not bode well with me at all. She should have been told during the shift change from the previous nurse. Better yet, I know it is in her chart so that just tells me she did not read up on my daughter at all, at least not very thoroughly. Keith’s mom and sister Amy arrive around 10am. We get everything ready to go for the transfer.
I have not taken a shower since June 30th as I was going to take one on July 2 but Mari became to sick so I never get around to it. We ask the nursing staff if she is being transferred anytime soon. They say no. So I hop in the shower around 10:30. Boy that felt like one of the best showers I have had in a long time.
When I get out, get dressed, and go back into her room, Keith’s mom tells me they had come to transfer her while I was in the shower. I am like, “Of course they did.” So I quickly pack up all my toiletries and what not. Then I go and get the nurse to tell her we are ready to go.
Mari gets transferred to the ICU around 11am. When we get to the ICU, they decide to give her a folly catheter to see how much urine she has in her bladder. I hold her arms, a nurse holds one leg, and another nurse holds the other. She screams bloody murder at the top of her lungs and fights so hard so we will stop. The doctor then tells us that they may need to transfer her to UIC (University of Illinois Medical Center at Chicago) to start her on dialysis because her Kidneys are failing.
Before they are going to transfer her they want to try a couple of different medications to force her to go pee. While we are waiting, Amy decides to take me to the grocery store so I can get some food to eat. I have not left Mari’s side other than to go to the bathroom or get a nurse. So everyone thinks it will be a good idea to give me a break.
At first we stop at Subway so I can eat something besides hospital food. Boy did that taste good. Then we head over to Jewel/Osco. I get a lot of snacks and different things to eat for meals. We are gone for about 45 minutes to an hour then head back to the hospital.
About an hour after we arrive back, the doctor tells us the medications have not worked. So ultimately she needs to be transferred to UIC. They also tell us that her morning platelet count was at 65,000. So it has dropped another 15,000 from the day before.
She gets transferred to UIC around 2pm (I think) and the attending physician tell us that they are not actually going to start dialysis but instead they are going to push about 4 to 5 different types of industrial strength diuretics down her to get her to go pee. With everything they push down her, she only pees 23 milliliters. Her platelet count drops down to 58,000 from just five hours before. Four hours later, the count drops to 26,000. Four hours after that it drops down to 25,000. This is not looking good at all.
It is as if she is slipping further and further down right before our eyes. She seems to be getting less and less responsive as the day goes on. She sleeps most of the time now. About 1am I am concerned because it seems like she is not being responsive at all. The doctor comes in and checks her. It takes a bit to get her to respond him. This scares me at first because the doctor keeps talking about how there could be “brain issues”. So anytime I think she is not being responsive enough, I have the doctor check her.
She still has some fight in her and is making it hard for the doctor to examine her. She makes it hard to check her pupils. I try to sooth her by saying her name. She actually repeats back to me and says, “Mari.” She doesn’t want her arm touched so she tries to fight that as well. After the doctor is done checking her I feel relieved to know that she still seems to recognize us and is still fighting.
Around 2am the doctor comes in and talks to me about needing to sign paperwork. It is just in case they have to perform any emergency procedures on Mari. I think I am sort of in a fog at this point because her condition has deteriorated so quickly.
I do not want to make any decisions on my own and Keith went home around midnight. So I decide to call him. I put him on speaker so the doctor can go over some of the procedures that may need to be performed before morning. Some of them include putting in the dialysis catheter, a central line, and giving her either a blood or platelet transfusion. We agree to any procedure that will help her and I sign the paperwork.
Through all of this, Mari’s nurse keeps telling me I need to go to sleep as I will not be any good to her if I do not. I finally lie down and do the best I can considering the situation. As you can imagine, it is not very much or very good. I wake up several times throughout the rest of the night.