Reagan and the Meningitis monster
My son Reagan has bacterial meningitis and is in stable condition as of right now…
Friday, December 10, 2010, midnight, Reagan feeds as normal, with no signs of any kind of distress or illness. Twenty minutes later, while trying to burp the little guy, he spits up. No problem; I continue to pat his back and eventually get the nice size burp that we are used to hearing. I laid my little guy down beside my wife so they could hang out. I use the restroom and cool off by the fan a little; trying to burp him can bring me to a sweat if he doesn’t want to let one up. Sitting down on the bed next to Sarah and Reagan, I thought he looked like he needed to be readjusted a little more comfortable. I reached down and started to lift him. Everything in his little belly came up to form a fountain above his mouth, lasting only a second or two. I was amazed at how far he could send that little bit of milk.
We quickly cleaned him up and began to pat him again, waiting for that big burp (ya know, the one that forced all his food out). He quickly grew angry and very unhappy with every pat, then we got a toot from the other end. “SO you have gas, ay? I can fix that.” I rocked his legs, rubbed his belly, and rotated him around to help the gas move along. Without much effort, we got plenty of gas to evacuate the bowels. He continued to scream with all his might. Now I have seen this before with Macey and other little ones; “I’ll go get some gas relief stuff, that will help him.” I say to Sarah. After learning that my normal CVS is no longer twenty-four hours, I went to the Wal-Greens and picked up some store brand gas drops. That trip turned out to be a forty-minute tour of New Port Richey, and my little Reagan was still crying when I got home; Macey slept through it like a champ. I could see the stress in Sarah’s eyes. Reagan got his drops and calmed down shortly after but never fully settled down; he whimpered all night, and Sarah held him close to her while I tried to rest for work in the morning.
Sarah gave him drops every hour or so (The dosing instructions followed closely.) By morning, Reagan still wasn’t feeding well, but I managed to get him to drink an ounce, and he unwillingly to gave it back shortly after. We decided to call the doctor; they could get us in by 3pm… okay, so he will be fine till then. “If he gets worse, call my mom and Rich and have them race you to the hospital, then call me.” I said to Sarah as I left for work. Well, he got worse a lot worse while I was at work, so much, so Sarah described him as being zombie-like in appearance and alertness. I told her to call my mom and get to the hospital as quickly as they could.
She called my mom and then the doctor; the doctor got her right in and after looking him over had Reagan admitted to the hospital before Sarah and my mom could get to the hospital by car. I got to North Bay only a minute after they did and was inside before Reagan was moved to his temporary room. Sarah was right about the zombie look; Reagan was gray, his skin looked lifeless. Oh my goodness, he just laid there in my arms, all limp and barely whimpering. I wept. I was so scared and felt so helpless… he couldn’t make eye contact and didn’t respond to voice or touch. I called to him, wishing for any sign he could hear me. It took a while for the hospital to get an IV started so they could give him fluids. Three nurses tried, and three nurses failed at threading their smallest IV into his tiny veins. Their biggest concern was how dehydrated he looked to them. They didn’t see how pink and full of life he was just a day before so they couldn’t understand our concern at how much his appearance changed. North Bay doesn’t have a baby ward, so they only tried to stabilize him until All Children’s transport could pick him up for a transfer.
Everything that the doctors tried to give him by mouth just came back up shortly afterward. It was noon, and Reagan had not held down any milk or medicine in twelve hours. We all were scared for him then because we had no answers, and he looked like he was getting worse like his life was fading right before our eyes. After the nursing manager got an IV in his arm, a left-sided twitch started to show itself. It seemed to originate right from the IV site, went up the left arm into the back, and worked its way down the left side. The ER doctors didn’t think too much of it when I brought it to their attention, but the All Children’s transport team gave him some medicine to stop the (what looked like a) seizure. It took a while for the transport team to get to North Bay because of northbound traffic. Still, once the transport team arrived, they got all the information up to present and seemed to be handling the situation a lot better than the hospital staff.
I left ahead of the ambulance, and Sarah rode along with Reagan. My headstart allowed me to get some food just before I got onto 275, and when I was pulling out of Taco Bell, here came Sarah and the All Children’s wagon. I followed them the rest of the way to the hospital.
Sarah and I followed Reagan inside, holding on to each other for dear life. About seven people and a doctor were waiting for Reagan, who looked even more lifeless than I last saw him. The team began to work aggressively on him. Trying to stabilize him. Trying to figure out what was wrong with him. Our admitting doctor appeared to be concerned and not just “doing” his job, but passionately trying to save my kid. His passion and concern made me feel more comfortable. Now around eight in the evening, we repeated what had happened since midnight and told him what the other hospital had thought about him and the new-onset witching. They drew more blood and got my mini-me ready for a lumbar puncture. “Lumbar punctures are normal for really sick baby’s.” The doctor said.
The techs put Reagan on his side and curled him up so the doctor could clean the back. When the doctor started to push the needle through his skin, Reagan let out most of the gas build up inside him and got a little laugh out of the staff and me. The mood in the room turned quiet and somber when his spinal fluid slowly started to leak from the open-ended needle. I watched the doctor’s face turn from a pale white to a bright red… Not a blushing red but a serious red. He gave a nod to someone who quickly left the room. As he got a better look at the fluid coming out the doctor
uttered “Oh crap, this isn’t good” I couldn’t hold back anymore and started to cry while standing above Sarah out of her line of sight. It was incredibly hard to see him in pain and crying, and now knowing that there was something very wrong with him, I was devastated. A Chaplin stepped into the room behind Sarah and me with the nurse the doctor nodded to. He was there to comfort us with what the doctor was about to say. After the doctor got what he needed as far as fluids, he came up to us and explained the seriousness of the situation and that they were starting him on a broad spectrum powerful antibiotic. The ER doc said he wasn’t sure if Reagan would make it through the night. He said he was sure Reagan was fighting meningitis, and with as sick as he was, it had probably been too late. As soon as they knew more, they would let us know. The Chaplin held us and prayed while we cried in heartache and fear.
An echo tech came down and started an echo while I was in the restroom; when I got back, I was pleased to see an echo and started naming off the heart’s anatomy as I saw it. The tech was pretty stunned, probably because I looked like a total scrub after the day we just had. I got to see the whole echo and liked what I saw; no leaks or holes. The cardiologist came down to see Reagan just as the tech finished up, and he also liked what he had seen and was pleased to know that I knew what I was looking at. He explained that his heart looking good was a good thing and that almost anything could be treated. He also promised to come to visit Reagan throughout our stay with them. It wasn’t long after the trauma team stabilized him that my little Reagan was sent to PICU and started what could be a three-week treatment. Three A.M., we get to sleep.
The first night was scary, his alarms went off every few minutes, and I didn’t sleep a wink. They had the antibiotics running through two separate IV sites to get in as much as they could as fast as they could. The staff hooked him up to an EEG machine to watch his brain activity, EKG to watch his heart, and gave him heated O2 for comfort. Presently, Saturday sunrise, Reagan was alive, still not moving, but he was alive when I woke up.
The Neurologist and CDC doctors came to see us. The Neurologist told us that she had seen Reagan had a couple seizures throughout the night. Even though we couldn’t see them physically, she was going to start him on some anti-seizure medicine to stop them until the infection was gone. But there could be a chance that he may have to stay on them for a few months depending on how he responds to everything happening around him and the medicine. She gave us a glimmer of hope by saying he could be on medicine for a couple of months. The CDC doctor showed up shortly after the Neurologist left and told us all about meningitis and the difference between viral and bacterial and that he only had one or the other.
She explained that he was in a ton of pain since the infection is in his fluid surrounding the brain and spinal fluid. His seizures were coming from the right side of the brain; this is why we saw them on the body’s left side. She told us it would be a while to grow the bacteria and that there was a good chance that it wasn’t viral. If he had both, it would be like getting struck by lightning twice in the same day, so she wasn’t concerned about him having viral meningitis but still had to test for it.
After she left, Sarah finally got to pump some milk and filled four 2.5 ounce bottles with her liquid gold, “as the nurses put it.” We just stood by Reagan and watched him closely throughout the day. We were not allowed to hold or touch him as he was quarantined for his and our protection. My mom and Rich came down later on that Saturday evening with Macey; we learned quickly she wasn’t allowed in the PICU at all, for her own safety. My parents brought us some nice food, and it was so great to see my little Macey. Sarah and I had a chance to run home and get some clothes and supplies for our extended hospital stay. and to see Jonny’s armhole. He, my best friend, was bit by a spider, and it had left a massive hole in his arm.
When we got back to the hospital, and everyone left, the night nurse gave me the greatest news of all. I got to hold Reagan for the first time since all this mess started. I held my little guy for a couple hours until I could no longer hold my eyes open. Oh it was so great to be able to have his littleness resting in my arms again.
Holding him really helped out since while I was holding him his heart rate went down and his blood pressure came back up. I was so happy to know that he was comforted by me holding him. This Sunday morning, I woke up late and felt still so tired. They have run so many tested on him today. We got to see the Neurologist and the CDC doctors again today. The cardiologist also stopped in to see if Reagan was doing okay and was very happy to see that his heart rate came back down. The Neurologist was pleased to see that the anti-seizure meds were/are working. Sometime this week, if he still hasn’t had any more seizures, she would send him in for an MRI to see if there will be any brain damage from meningitis.
The CDC doctor thinks she narrowed the Bacteria down to two different types and will know for sure on Monday what he has. This doctor reminds Sarah and me so much of my sister Heather from the way she dresses to the way she talks; it really is uncanny. I got to talk to one of my bosses last night, and he told some of the people at work that he knew I talked with often, about what was going on, and he was pleased that my son seemed to be improving. They have us on a prayer list now, and I won’t be losing my job for missing work. Sarah got to hold Reagan just a little while ago
and I am so proud of her trying to comfort our little baby.
Sarah is handling this very well now that she knows he should be okay once everything is said and done. There is a chance that he may have some hearing loss and maybe some other learning disabilities now from all this. So he will have a specialist following him through his childhood to monitor his milestones. For now, he is stable and can only get better. I would like to thank everyone for your prayers and for thinking about my little boy. He will make it through this, and everyone that hasn’t met him yet will get a chance soon enough. Well, I will finish this post up and try to get to hold him again before dinner time…
The Heart broken Michael Trump
Reagan :01 / The Meningitis Monster :00
As of the start of this blog, Reagan has been sick for six days now, but continues to get better as the antibiotics’ course through his tiny baby veins. Reagan has a rare strain of meningitis and seems to have been put under control for now. With every heal prick his blood tests come back a little better and a little better. Though with his rapid progress and seemingness to be on the up side of things there is still no telling when we will be leaving this rest stop for the sick. I was figuring early next week due to his quickness to heal; a
social worker had a different idea when we would be leaving though. Yesterday this social worker came by to see us and to ask more questions than I thought she needed to know the answers to, but to please her, because Sarah was in the shower, I answered the questions. And then she proceeded to tell me that my little boy who was so close to death five days earlier was getting out tomorrow (now today). My jaw dropped; this morning (now yesterday) the CDC Dr. told me two weeks minimum for him to be here for treatment and could be longer just to be on the safe side. “Um yeah my son has bacterial meningitis, I am pretty sure they are not letting him leave this hospital until his treatments are complete.” “I’ll have to check because it says he is leaving.” “He wont be leaving, just find the CDC Dr. she knows what is going on.” “Okay well we will see you guys latter.” So yeah we are still here and will be here till at least the 17th maybe till Christmas still. Yesterday evening after Reagan woke up for the night, that’s right he has his days and night flip flopped he wakes up about nine and is up till three or four, we went down for an MRI on his brain. This morning when I awoke to the CDC Dr. coming in the room and my eyes adjusted to the lack of sleep, I saw on the Parent Notes board, MRI: NORMAL. Thank god. The CDC Dr. assured us (well Sarah was still sleeping) that there seemed to be no brain damage and she is sure that he will make a great recovery. Viridans Streptococcus couldn’t keep him down, there is anything going to keep him down now.
This morning I wanted coffee so bad I could taste it… well I couldn’t taste but I wanted to. Shortly after Sarah got up I went down to the cafeteria to take a gander at the coffee booth thing stacked full of three dollar coffees. I got one for Sarah and one for me; if we didn’t have to stay here for another week or so I would have thrown it at them. Sun Cruz has better tasting coffee and its free. Most of the food down there is pretty good but their coffee really needs a Folgers boost!!
The neurologist just came in and said everything is looking great and that she wants to keep him on his ant seizure medications for the whole treatment just to make sure everything has cleared his system and will be okay.
Reagan is back to being a little piggy and wants to feed all the time, now the midwife at
Sarah’s doctors office said that was fine and that she should try to feed him when he wants and that would help her make more milk to appease his growing appetite. Plus as long as he is peeing and pooping; he is getting enough and there is no need to supplement him with anything else.
Well we have lots of people to call and to fill in about how much better he is doing now.
Again thank you everyone for you prayers.
Michael Trump a happy father
This was at home before he got sick… more pictures soon to come.
Michael Trump 