I ask the nurse from the night before to make sure that I am woken up as soon as the Neurologist comes in because I want to talk with him. The next morning she wakes me up around 7:30am. Right at 7:40, the Neurologist checks Mari’s pupils and they are still reactive and small. I am able to ask a few questions like why she had a seizure. He says because her brain has been so severely injured that the injuries may be causing them. I understand that and remain awake for the rest of the time.
Right at 9am, the radiology team calls the doctor to say there is something that looks suspicious on her CT scan from the night before and right about the same time Mari’s pupils look like they have exploded. There is basically no color left to her eye. I am told at one point that her pupils even look kidney shaped. The attending then tells me that she has called neurosurgery to come in and check Mari because she may need a procedure done. I call Keith to tell him to get over to the hospital immediately. Then I call Keith’s mom to inform her about what is going on. Mom calls Keith’s dad and she heads up to the hospital with Gina.
In the mean time, the room just seems to be getting busier and busier with more and more people. Then a chaplain by the name of Jim comes in and starts to talk to me. He says they call the chaplain in when the parents might need the support. I ask the PICU Attending if this procedure they are preparing for has to definitely be performed on Mari. She says 100% it has to be done because Mari has so much cranial pressure building up due to her brain swelling. If they do not go into relieve the pressure, she will die. The neurosurgery team needs to go in and put a shunt in to relieve the pressure. Obviously I do not object and say let’s do it.
The Attending Neuro Surgeon talks to me about what needs to be done. He says that first they are going to take her down for a quick 5 minute CT scan and then head to the OR to perform the procedure to put the shunt in her head. I sign the necessary paperwork to allow them to perform the procedure. Keith arrives about 15 to 20 minutes later.
We are talking to the chaplain telling him about Mari when all of a sudden in the background you hear someone yell, “We need a crash cart. She is coding.” Needless to say, Keith and I are just a little freaked out. They quickly rush us out of her room into the hallway. I fall to a heap on the floor just hysterically crying. They get both Keith and I a chair to sit on. The social worker is here by now as well. I keep asking the social worker if they are still performing chest compressions and she says yes.
It seems like time just stands still. It feels like the compressions last at least 15 to 20 minutes. During all of this, Keith’s dad arrives at her room. They are still performing compressions on her while performing an emergency procedure at her bedside to put the shunt in.
For the first time Keith cannot be the strong one for both of us anymore. He has his first crying break down because the seriousness of the situation is so overwhelming, and the fact that we just might lose our daughter is just too much to take for the both of us. It seems like all of our hope gets smashed in one split second. The neurosurgery team gets the shunt in and Mari’s heart rate comes back up to where it is supposed to be.
The next thing we are told is that they are now going to take her to get a CT scan and then they will be back in 20 to 30 minutes. They bring her back and now it seems like it is just a waiting game. The whole family arrives one by one to give us support. Keith and I really thought we were going to lose her. We are in complete disbelief with what we just witnessed with Mari. I saw Keith cry and break down for the first time because we actually thought we were going to lose her.
The social worker and the chaplain reserve a special waiting area for us so we do not have to be around others in this time of crisis. It is so reassuring and comforting to know that our family, which includes Keith’s Mom and Dad, Keith’s sisters Amanda and her husband David, Peggy and her husband David, Amy and Becky, and a close personal family friend Gina and her daughter Danielle are there to support us and comfort each other.
The afternoon seems to be such a waiting game to see how things will go and it seems like Mari has at least stabilized considering the situation that happened this morning. We always have at least 1 to 2 people in the room with her at all times.
They immediately put Mari back on dialysis. Keith comes in about 2pm and says that the neurologist just talked with him and said that the CT scan shows the affected area from the stroke has gotten bigger from the night before. Amanda and I then decide to go back to Mari’s room to go visit with her. I see the Neurologist down the hall from Mari’s room and decide to hear for myself exactly what he had said and to also ask my own questions. He tells me that it has gotten bigger; they want to do a new CT scan the next day and then go from there. I say ok and then head back to Mari’s room.
I walk in her room and the nurse says that the shunt has quit working and they are talking about taking her back for another CT scan now. They have just restarted the 24/7 dialysis and I know starting and stop her dialysis is not good. It can cause so much uncertainty in her body and cause problems doing this. The nurse gets a call that they definitely want to take Mari back for another scan since the shunt has quit draining. She says they know the line is not clogged and they need to see what is now going on. So they take her back off dialysis yet once again.
Amanda and I go back in the waiting room where the family is. We tell them what just happened and how the Neurologist had just told me one thing and just that quickly they have changed their minds. Keith’s dad is actually ready to head back home and decides he better stay now. We are all very nervous about this new development.
They take Mari off to CT. We all wait for her to come back. As soon as she is back, Keith and I head back to her room to wait for them to come and tell us. One of the Neurosurgeon Fellows comes to talk to us and asks if we want to see all 4 of her CT scans. We all say yes. So Keith, Becky, Dad and I all follow the Neurosurgeon to a computer to show us. He then decides to show us a random child’s CT scan to show us what a “normal” brain looks like. He then shows certain things of the scan to explain what looks normal. He then brings up all 4 of Mari’s scans on the computer at the same time.
First, He shows us Mari’s first scan after the stroke from Sunday. He shows us exactly where the stroke has taken place (which is around 2 inches in diameter). He then shows us the scan from last night (Saturday) and how much it has grown (which now looks to be about 4 inches in diameter). He then shows us the scan from about 12 hours later, the first one done today after all the trauma from earlier. It shows that it has grown even bigger. By the 4th and final scan it looks like the stroke covers the entire brain and that is what he says it looks like. We are all just completely devastated. I know right then and there that she is probably not going to make it by that scan. I just break down crying. We go to inform the family what was just shown to us.
Around 8pm, the attending physician lets us know that the team (which consists of the attending physicians for PICU, Kidney, Neurology, Neurosurgery, PICU Fellow, and our nurse) wants to have a talk with us as to what they believe and what they have seen. So we get Mom and Dad, and the four of us follow the team into a meeting type conference room. We all sit around a big table to discuss what they found. Well I like to call the meeting the “Doom and Gloom Round Table Discussion.” They have almost nothing positive to say. They all tell us that she probably will not survive the night. They feel she is going to become brain dead by morning. They go on to say that we should get a hold of anyone who would want to say goodbye to Mari as they need to get here that evening or no later than the next morning. They feel if she does not go brain dead that she has a very slim chance of ever doing anything again for the rest of her life. We are all just so devastated. The Kidney doctor says it is pointless at this point to start her back up on dialysis unless she makes it through.
So basically it is time to call all of our friends and family in the area to let them know that if they want to come and say goodbye to Mari they need to do so that night or first thing in the morning because we are more than likely going to lose her by the next day. I personally don’t think I have made more difficult calls in my life before. Everyone is completely and utterly shocked and disappointed because no one expected this to happen.
Our nurse and the other medical personnel all make an exception for us with the amount of visitors we can have and actually get more chairs for us as we are technically only aloud 3 visitors in the room at a time. Mari’s night nurse is named Cindy. She is exactly who we need this in particular night. So God does do things in such mysterious ways. She is just so understanding.
We have all of Keith’s recruiters that he is in charge of and their spouses come up, several of our friends from DeKalb come to visit (which is a good hour and a half to two hours away and it is where we moved from back on December 29, Mari’s 8th birthday), all the family is there minus a couple of Keith’s brothers because they are too young, and some of our Army Family also comes to say goodbye.
Keith has a couple of breakdowns because it just seems so daunting and unbelievable that we are going to lose our daughter. We just hold each other because we love each other so much and are just there for each other. I could not have a better husband than Keith. God knows he is perfect for me.
The final people leave around 1:30 to 1:45 in the morning. Keith’s sister Becky stays the night with us in the room. Cindy (the nurse) gets another one of the chairs that fold out into a bed for her. She moves Mari over in her bed and allows me to sleep beside her for the night.
Once everyone leaves, Keith and I are no longer crying and we are able to talk about the DNR (Do Not Resuscitate Order) we want for Mari because it seems inevitable what the outcome for her is going to be. We have decided that we just cannot do anything. We both agree that ABSOLUTELY under no circumstances will they shock Mari but we do want them to push meds and do chest compressions with her. We also have come to an agreement that if Mari were to stay in the state she is in now that we will decide to remove life support when the time is right. This has been a hard decision for us but we know it is the right one because the Mari we all know and love no longer exists at this point and it will just be selfish on our part to keep her alive this way. We love her too much to ever do that.
The Army also seems to amaze me all the time. During our time of need they have flown out the Brigade Chaplain to be there just for us. This has impressed me more than they will ever know. It is just so comforting to have him here. He arrives around 9pm. We thank the Army so much.
Our day never seems to end but eventually we all go to sleep for the night (or at least we tried).