We all have our faults, our pitfalls, our struggles. Two of mine are patience and overthinking. My mind never stops. I see all the angles and sides of a predicament and it’s currently exhausting me. It’s keeping me from being patient and just letting go. Tonight will be full of ramblings and a glimpse into my mind.
Forgive me while I get technical for a bit. The diagnosis Ava is working with is Gram Negative Sepsis. As it’s been explained to us she’s got some kind of bacterial infection that caused her fever. When you have a bacterial infection your vessels loosen and they become leaky, also known as sepsis. This allows the blood to leak into your body and go to other places. When this happens there is less blood to travel back to the heart and feed this most important muscle. This is your diastolic blood pressure. The bottom number. One way to help with this is to get fluids. The fluids help fill the vessels and helps the blood travel back faster to the heart. Sometimes fluid isn’t enough and you need a medicine to tighten up your blood vessels. Medicine like dopamine. When you are on dopamine and you’re a child you have to be in the PICU. In addition your treated with broad spectrum antibiotics to treat the infection. This should also help stabilize your blood vessels. If you’re immune compromised due to leukemia and the chemo used to treat it sepsis can go from bad to life threatening in a couple of hours. So the PICU is truly the best place for you. I know this in my head and in my heart.
Until my mind starts reeling and my thoughts add in the following factors. As of right now all of AJ’s cultures are negative. Thus the whole Gram Negative Sepsis. We’re over 48 hours in on one set cultures and 24 hours in on the other set. All are still negative. This means that they probably did not catch the bacteria on the samples they got. Or she could have a virus. Treating for a bacterial infection is always the best and safest bet, but there’s a chance it will just take time to get over a potential virus. A virus like the one her brother brought home Friday or the one her sister stayed home with today. I’ll come back to this in a bit.
Next thought, Ava has always had a low diastolic blood pressure. There were nights in during our first two admissions they would hook her up to an all the little sticky circles because her bottom number appeared so low. When we were admitted to the PICU we were told in order to get off the dopamine she would need to maintain a MAP level of 65. MAP is the medium between the systolic, the top number and the diastolic, the bottom number. What if she just runs low and she would never be able to reach that goal? This evening the team re-evaluated and they lowered her goal to fit what they now know about her.
These numbers and that goal have literally become our main focus. The TV in this room is not working and you can’t eat in here so the only way to pass the time is to check the numbers every 15 minutes when they register. When ever we see the numbers the thought of is this a fair goal comes into our minds. The following thought is well we’ve been told she’s in between cuff sizes and the one they’re using is the right length, but slightly too big for her tiny arm so there’s a chance the reading is not accurate and a false low. As I type this a sweet nurse checked with both cuffs and we found the smaller cuff only improved the reading by one.
Since being admitted the highest dose of dopamine AJ has needed is 12. She’s since been weaned down to three and was even off for a hours today. The nurses and doctors keep telling us this is proof the antibiotics are working and it’s a bacterial infection. They’re also saying see just a little longer on the dopamine and she’ll be good to move to the floor. My thought? Except it’s not a bacterial infection and it’s a virus in which case it will take an indefinite amount of time for it to pass. And oh! Let’s not say there’s a chance she’ll get weaned off tonight because everyone’s blood pressure drops when they sleep. Remember I mentioned her sleeping bp has been monitored in the past? So the likelihood of the weaning happening overnight is a false hope. The antibiotics helping the longer she takes them is only true if it’s a bacterial infection.
My next internal debate has been do I bring all this up to the doctors and see if any of it makes a difference or am I trying to rush a process that could potentially endanger my daughter? Part of me feels like yes I should because Ava wants so badly to move to the oncology unit. I know how much keeping her mentally positive is important. Maybe the above thoughts should be taken in to consideration as when she moves to 11S.
Another thought that’s constantly running threw my head is please, please let’s get this moving because I have to go back to work Monday and I can’t do that if she’s in the PICU. I’ve come to terms with not being able to make it to all her clinic days. I’ve even come to accept there will most likely be overnights on the oncology floor I won’t be able to join her for. But to leave her when she’s in the PICU. When the doctors have told us they’ve seen patients healthier than Ava go from running around to four hours later being on life support or in organ failure, it’s something I just can’t come to terms with. I’m not the point where I can accept that.
Tonight Ellie called us crying that she missed us and felt terrible. Seeing my little bit crying was hard. My first thought was okay one of us has to leave this isn’t fair to her. Maybe if we just run home give her some tlc and come back when she’s sleep it will help. Then I realized if we go home and expose ourselves to her virus we can’t come back to Ava. We can’t take that chance. Neither one of us wants to leave Ava when she’s in the PICU. So even though we’re where we need to be I realize that it also feels like we’re stuck.
During rounds this evening the fellow said how it’s so hard to deal with something so unpredictable. How our family runs well because we have a plan and now we can’t plan. We’ve been juggling so much, so well for so long and all the sudden all we keep getting is wrenches thrown at us. Nothing is following the the roadmaps we were presented when we started this horrible journey. She mentioned how Ava marches to beat of her own drum and doesn’t follow the textbook of things are supposed to go. She likes to sleep on the side that drops her MAP goal. Her arm is too long for the child cuff and too small for the adult one. She keeps getting slight fevers that don’t hang around for long, but won’t stay away either. Her cultures haven’t come back positive for a bacterial infection. Her need for dopamine has been reduced dramatically, but when they try and take her off she can’t maintain it for long. She looks “healthy” and says she better, but needs the medicines they’re providing. I guess it’s no wonder my mind never stops. I wish I could find a nice way to tie this all up, to say trusting is easy and I am learning with each experience to rely on His timing. But honestly I feel like it’s actually getting harder. The thoughts of enough is enough. Let’s get a long stretch of a new normal. We’re exhausted Lord and could use a couple months of no hospital admissions.
I believe it was last year that I watched the Notorious RBG with my girls. Its then I started telling them that they were badasses and just like RBG they could never give up no matter what life threw at them. We discussed what an inspiration she was. How she’d beaten cancer so many times, dealt with the loss of her husband, and so many other things and never lost her fight. I joked that they could be Notorious AJG and ECG if they just always kept moving. When Ava was diagnosed I reminded her how Justice Ginsburg had just beat cancer again. If she could do it at her age then certainly Ava could fight just as hard to do it too. I pumped up my girl and she’s yet to let me down.
Kevin and I have stopped saying “I don’t know what I’ll do if…” because we’ve realized you don’t need to know. You just do. You put one foot in front of the other, question, overthink, and keep going. You have no choice. You do your best Ruth Bader Ginsburg and get it done because you have no other choice.