Written on AUGUST 6, 2015
100.5… that is Matthew’s temperature right now. I am trying my hardest not to panic. I know to some, 100.5 is like-eh, let’s just give him some Tylenol and all will be good. But fever, to me, has put me in a panic. Fever means antibiotics…fever means infection…fever means really bad sickness…fever means hospital…fever is bad!
Fever took me back to the beginning of the year when I was sitting on the floor next to his bed begging God to make him feel better. I was begging God to stop him from throwing up every two hours. I was begging God for one day of happy and “healthy”. And here I am months and months later on the verge of begging God again. I was okay last week when Matthew had surgery. (Post on surgery week will come later) But today…suddenly, I feel like I am in a panic.
So I started writing this post on Monday July 27th. Matthew started showing all the signs and symptoms of an infection. Then came Tuesday, July 28th. I was able to control his fever all night, it was pretty much low grade all night. Tuesday morning we took him to see his PD Nurse and to have his PD dressing changed. It was a follow up appointment to his surgery the Tuesday before. We went in and she immediately saw all the signs of some sort of infection. There was gunk in his dialysis catheter, he still had a fever of 101, he was crying, he was in obvious discomfort, he was lifting and bringing his knees to his chest as if he wanted to be in the fetal position….all signs of infection. His nurse immediately began taking samples from his catheter, she called for a blood nurse to go to the office to take all the necessary cultures and blood work. And when everything was done, we were off to the emergency room.
Once at the emergency room, we were immediately whisked to triage. About an hour later, we were sent upstairs so isolation. He was put on IV fluids, given three different antibiotics and we were desperately trying to control his fever, which by this time spiked up 104. He was placed on high flow oxygen because he was having a real hard time breathing. He began getting some gunk in upper chest so an xray was done. For all that was happening, it was happening pretty fast.
A really super nice resident took over Matthew’s case and was giving us updates on labs whenever they came in. One of the first things they told me was that it is peritonitis. I expected peritonitis. Peritonitis is the most common form of infection in peritoneal dialysis. I KNEW since he had surgery it was a HIGH possibility. Especially being in the hospital. It was the biggest reason why I wanted him home. I know our home is completely sterile. It needs to be clean and sterile. The hospital is NOT!! People have this huge misconception that it is sterile and clean….. its it NOT. Next time you are at a hospital, pay close attention to how the rooms and floors are cleaned… it is one of the MAIN reasons why babies in the NICU get sick so often. Every time you drop a blanket, or binky or toy… please wash it in hot water with anti-bacterial soap they have there at the sink. Wash it really really good or just get a new one. I wish there was more awareness about that. DO NOT give your baby or child or anyone anything that has fallen to the floor!!! Please!!!
ok done with that… so anyway… Wednesday prelim tests showed possibly a fungus… possibly a bacteria… possibly peritonitis… possibly possibly possibly… blah blah blah… i didn’t hear anything after fungus. Fungus is in the peritoneal dialysis world is far worse than infection. I heard fungus and the room spun. Every word that came out of his mouth sounded like the teacher from Charlie Brown cartoon. …waahhh waaahhh waahhhh waahhhh ….When he left I sat in the chair next to Matthew and was in a daze. I sat there and just prayed. At that point it was all I could do. I prayed for it to NOT be a fungus. I prayed for our lives to NOT be turned upside down by this. I prayed for Matthew to get better quickly. I prayed for it to not be a fungus. I prayed for his fever to go down and get controlled. I prayed for comfort for Matthew. I prayed for our family. I prayed for it to NOT be a fungus.
Wednesday at about 6am, the doctor came in and kneeled down next to me and woke me up. After three days I was finally able to sleep really good for about 4 hours. He woke up and was whispering that they got some test results back. Results show that it is NOT about 10 different infections… lol… but that it does confirm that it IS a (whatever-it’s-called) fungus. He began to explain that with a fungus… waahhh wahhhh waahhhh… then I just stopped him. He was trying to explain what was the possible treatments. He was trying to be as nice as possible… bless his heart. But I said, I know he has to have surgery to remove it. I know that removing it is going to be the only way for him to get better. There is no option. And he kind of smirked and said, yeah.
He apologized, I don’t know how many times, and again, he was so super nice. But at that time I just wanted anything other than that word fungus. I thought the word fever was terrifying… the word fungus actually scared me to death. It was a word I never never thought I would ever hear. It is a word that is like the darkest and most evil word in the peritoneal dialysis dictionary. It is the death to peritoneal dialysis. It also means the start of hemo-dialysis.
Doctor said all they are waiting on now is for the blood cultures to see if there is a bacteria in his blood. If there is a bacteria in his blood, then they will not be able to put him on hemo-dialysis. And if doctors can’t put him on hemo-dialysis then…………………………….
………………….my son will die. He didn’t need to say that… His words were, “if we can’t do hemo-dialysis, then we will discuss other care options like home care.” When he said that, I heard, “we will discuss dying options for your son.” When he said that, I heard, “Your son can die peacefully in your arms at home.”
When the doctor walked out of the room, weird thing was the first thought I had was, I want to take him to the beach. Matthew would love the beach. And if Matthew was going to die in my arms, I want it to be perfectly beautiful. As I give him back to the Lord, I want it to be a peaceful place for him and the rest of the family. We will rent the beach house we rent every summer in San Diego and we will live there for as long as we need to.
My put-it-in-perspective mama thinking… my on-the-go-find-an-answer mama thinking was trying to stay in control in this situation. Matthew woke up and started whining a little and I stroked his beautiful curly hair. He opened his eyes and looked at me. He saw me…. ME… I could feel he was comforted just by knowing I was there. He closed his eyes and fell back asleep.
The warmth in my heart that I felt was so over-powering. My son needs me. My son needs me to be THERE for him. If there was anything in the world that he needs… it was ME! Along with this overpowering love that I felt, I suddenly felt a stabbing pain in my heart. The stabbing pain I described in my previous post. Physical pain. This physical pain was greater than my love at this very moment. This was the moment that I knew our lives were going to change. The moment I felt our lives being thrown in a plastic bottle and shaken erratically. Where we were going to end up, at that moment, I had no idea. For the first time in about 10 months… I felt fear. I was no longer in control. I was no longer able to make everything better. I was no longer able to fix this. For the first time in so many months…. I cried. I lost control of myself. I lost control of my emotions. I was done. Finally……… I broke. I felt my heart literally break.
I sat back and just cried. I cried for a good 10 minutes. Not long. I forced myself to stop. I needed to compose myself because the doctors and nurses that were rounding were outside our room. So I wiped my tears, I washed my face and I composed myself. I texted my husband and told him what was going to happen. He just text “damn” Normally he will respond with something positive to say or something along the lines of, ok-it’ll be ok. When all I saw was OMG …. my heart broke a little more.
The doctors came in and confirmed what will happen. Surgery to get his catheter removed. He will be antibiotics for 4-6 weeks. And until then, he will have to have a hemo-dialysis catheter placed. First things first though, we have to make sure there is no bacteria in his blood. Otherwise, they won’t be able to put in the catheter.
I had all day Wednesday to let the news sink in. I cried on and off all day. I cried at the thought of how Matthew’s life was going to be different from here on out. I cried at the thought of how close he was to transplant. I had glimpses of happy thinking about how close he was too. The good and bad. I had my little angel and little devil on my shoulders all day. I cried with my doctor. I cried with his dialysis nurse. I cried with my mom and my aunt. As strong as everyone always perceives me to be… I finally cried and didn’t care who saw me. I needed to cry and let it out. It took me all day to let out all my emotions, my pain, my fear, my worry and my genuine sadness. I finally acknowledged… I was sad. That was the easiest and most basic way to describe how I felt that day… sad.
That night we went forward with his dialysis. I was praying his catheter wasn’t clogged up to where it wouldn’t work. It had already been a day that he missed because we weren’t sure what was wrong. By the Grace of God, he did really well on dialysis that night. By Thursday I was finally able to start thinking clearly. I didn’t want to cry anymore. This was completely out of my control. I had to start thinking back to my normal self. I had to get back to ME.
Thursday Matthew began to feel better. He was actually sitting up smiling and playing with his toys. Once I saw that he started feeling better, I started feeling better. He makes me feel better. He makes my life better. He has this incredible fight in him that I can’t fully explain. He has the soul of a warrior. When things happen, he goes through them, deals with them and in the next moment it is like it never happened. He is back to his normal self. He has this amazing resilience that I wish I had. I get my strength just by watching. Knowing I need to be strong FOR him. One thing is for sure, I am a pro at “fake it til you make it”.
God is in control of everything. Everything that happens to Matthew..everything that happens to our family..everything that happens to me.. It is all out of my hands and placed in the palms of Him. So I know that all I need to do is keep trusting and praying and believing that in the end of it all… no matter what he or we go through… it will all end up well.