There’s nothing worse than a sick child. For a child with Barth syndrome the smallest cold can send them down a dangerous path. There’s also nothing worse than a doctor or doctors who do not listen to you and look at you and treat you like you are crazy.
Wally has once again landed himself back in the hospital. He’s had cold like symptoms for over a week and started running a high fever Thursday night. We were worried to the point we took him to the ED on Sunday night to be sent home. On Tuesday we realized enough was enough and demanded to be admitted. Luckily we have a pediatrician who listens and agreed that he did not look well.
Barth boys can be tricky and hard to figure out. One thing is for certain is that they can become neutropenic and have a hard time fighting off infection. When this happens you worry about things such as sepsis and death. Well of course this was our concern with Wally. We wanted four things to happen. We wanted to be admitted. We wanted to figure out why Wally had a high fever for going on 7 days. We wanted to make sure he wasn’t neutropenic and that he was able to fight this current infection appropriately. And we wanted an inpatient hospital consult with a hematologist. Luckily our pediatrician actually listens to me and agreed right away. So off to the hospital we went.
We have yet to find out if Wally has cyclic neutropenia. We have been waiting for an appointment with a hematologist forever. Luckily we are fortunate to have such an amazing support system including our families and our Barth family! Shelley, who I mention a lot, one of the founders of the Barth Foundation, and a barth momma has the most amazing connections! Including neutropenia specialist AudreyAnna, who helped us receive a referral to one of the best hematologist in our area. All the hospital doctors had to do was page and call this amazing hematologist, Dr. Tarantino. Dr. T knew about us from AudreyAnna and agreed to take us on. But in order for him to get involved the hospitalist had to make the call. Well that didn’t happen. And it was a long frustrating two days trying to explain over and over again what exactly it was that we wanted.
They found out Wally has a double ear infection and a bad upper respiratory infection. They did blood work and although his neutropenia levels were low they were in acceptable range. The doctors than proceeded to tell us that because his neutropenia levels were “fine” they didn’t see the need for a inpatient consult with a hematologist. I knew that there was nothing intervention wise that there could be done because at the time Wally wasn’t neutropenic thank the lord. BUT we wanted an inpatient consult to establish with Dr. T because that way we could schedule a follow up quicker to get started on weekly lab draws to determine if Wally’s neutrophil counts cycle. The doctors were not understanding what I was saying. One doctor even went as far to say, “Well his neutrophils are normal so we now know he won’t ever have a problem with being neutropenic”. 🙄🙄. I tried to explain that with Barth syndrome the boys can cycle, they can be intermittent, and when they do become neutropenic they go down hill fast. They shrugged me off. They even smirked. I think some of them thought I was crazy and some of them thought I was looking for trouble. But here’s the thing. Our sweet Wally has been sick five times in six months! FIVE! Luckily he fought the infections like a champ, but this is not ok. Sooner or later he’s going to get an infection and the outcomes are not going to be so great.
Fortunately I have a dear friend, Cassie, who works for Dr. T and who I was in contact with. She said she talked to Dr. T and he was more than happy to come see Wally in the hospital knowing it wasn’t an emergency etc. But the doctors had to make the call for him to be able to step in. Well these doctors were just not hearing what I was trying to say. And that didn’t happen. There is nothing more frustrating than trying to do what’s best for your child and not getting the support from medical staff that you need.
When you don’t have that support you start to question yourself as a mother. Am I crazy? Am I looking too much in to this? And these doubts eat away at you. You really start to believe that you are crazy. Since Wally has been born he’s had a rough go. He still has so many issues that we do not have the answers for. That we are fighting like hell to figure out. We have had amazing experiences with medical staff and the physicians that have seen Wally. Until this hospital stay. Luckily everything worked out due to my connections but what if it hadn’t? I know there are a lot of families with medically fragile and sick children who go through the same thing. Having a medically fragile and sick child… it’s exhausting. And than having to explain yourself over and over. And fight for your child and what he/she needs over and over. It’s not fair to the child or to the parents.
Barth Syndrome is complicated. Wally is complicated. His medical history is complicated. I know and understand a lot of people, especially doctors, do not know about Barth Syndrome and what it can entail. But when it comes to something one doesn’t understand or know you research it and you listen to the concerns of the parents or guardians. No one knows a child better than their parents.
Wally didn’t choose this life. We didn’t choose this life for him. All we want is for Wally to be happy, healthy, and to lead a normal life. So when it comes to his health I will do everything in my power to be his voice. I will continue to fight and go to hell and back to make sure he is getting the care he needs and deserves. And anyone who wants to stand in my way… well be ready to put up a fight.
Thank you all for the continued prayers and love. AJ, Wally, and I are eternally grateful.
Wally’s mom 💕💕