Our Experience with Dallas Children's Hospital
Updated: Jun 18, 2019
I wanted to share my experience at Dallas Children's Hospital with y'all. No, I never thought we were the only parents going through such devastating news, but I did not realize how many parents were actually dealing with a sickness of this magnitude. I realize every experience is different, but If you are ever in this situation, Dallas Children's is the place to be.
In my dads family, if you get sick, you take a bath and get over it. Thank God none of us have ever been seriously ill. Now, I don't know if all southern families are that way, but ours sure is. Being raised this way, this is also how I parent. Of course, I take my son to his check ups and call his doctor if I feel like I need their help, however, I am a pretty laid back mom. I don't freak out at the slightest cough or unidentified mark on his body. We DO NOT go to the ER for a damn fever either. I still plan on being a chill mom, but I never thought the doctor would walk in and tell us our son had a tumor. The second I saw his face, I could just feel what he was going to say. I felt like I had been punched in the stomach. It was sickening. I couldn't hear because my heart was pounding so loud. My soul aches for those families who have lost children, for any reason.
On June 11, we went to a King and Queen cake eating party for our Mardi Gras Krewe. This is how we determine who is going to be king and queen. We cut two cakes, the kings cake and the queens cake. Whoever "eats" the baby out of each cake becomes King, or Queen. In hindsight, thank God for this day.
The party was at Tripp's Godparents house and their granddaughter was there playing with Tripp. Her little brother had Hand, Foot, and Mouth Disease, so he wasn't there. Come to find out, even though the sister never had it, she is a carrier of the disease.
Anyone who comes in contact with a virus or disease like this, does not have to actually have it, to spread it around.
About three days later Tripp had fever, runny nose, coughing, and diarrhea. It didn't even occur to me what it could be, because he hadn't been around any children or any adult who had been sick.
About three days after he got his fever, he started getting these open sores all over his body.That was the Hand, Foot, and Mouth. If you aren't familiar with it, it is basically the "new age", shittier version of the chicken pox. They burn, itch, and spread all over your hands, bottoms of your feet, around your mouth and down your throat. I am telling you, if you have ever witnessed it, it is heartbreaking to see the sweet babies so sick. Right before the sores go away, they all bust open. That is the worst part.
When we went to have it checked out, his pediatrician was on vacation, so a different doctor saw him. She told us he also had a stomach virus running through his HFM. She also told us his liver was distended. Apparently, it is very common for the liver to distend (protrude) when kids have a sever stomach virus. All she wanted us to do was come back for a check up in a week to make sure the liver was going down and his virus was going away.
The following week, his doctor was very pleased with how his liver was feeling. It was still distended, but it was heading in the right direction. Or so we thought. We went home that day feeling much better about everything. His sores were clearing up and he wasn't running a fever any more. It wasn't' over.
Everywhere we went people would freak out at how big his stomach was. He ate a lot, and we knew he had a distended liver so I thought nothing of it. But, the more places we went and the more days that passed, people still kept freaking out when they would see him. His doctor put us on gas medicine, assuming his stomach was just screwed up from from not eating, then eating, and having the viruses.
We saw Tripp's Godmother that weekend and she chewed me from head to toe. So did my mother. His stomach looked horrible and the medicine was not working and we needed to go back to the doctor and figure this out. She was right. In the two weeks we had been dealing with all of this, his stomach only got bigger.
Sitting in the doctors office, my fiance and I were a nervous wreck. We knew something was wrong. I know all ya'll moms out there are thinking, "why the hell didn't his doctor find this in the first place??". His doctor was only doing what the other doctor told him. The way they check for the liver was in the opposite direction of the tumor. The bottom of his liver (where they checked it) was, ironically, the only part of his liver that was still good. After a sonogram and an x-ray, they found an eight-inch mass and sent us straight to Dallas Children's.
I am not going to lie to y'all. My first interaction with Dallas Children's was awful. I wanted to set the whole building on fire and move on to some place better. But like my grandmother always told me, "Never judge a book by its cover." and "Everyone deserves a second chance." We were there for HOURS! They had just found a NINE INCH TUMOR in my TEN MONTH OLD BABY!!! All the surgeon did was meet us and draw blood, and they sent us three hours back home. I was livid. They couldn't do anything without a CT scan, and they couldn't get us in for a CT scan for at least two weeks. Yeah, thanks, but screw you. That is how I felt. Let's just say I am sweet as pie until you jack with my family, then I become someone you don't want to piss off.
We decided to take matters into our own hands. We left Dallas and I immediately called his pediatricians office. I knew they wouldn't be comfortable waiting two weeks to get a CT scan. I mean, we should be having surgery no later than two weeks! Thank God his pediatrician and the nurses, are amazing! They convinced a radiologist who only works on adults to get us in two days later. They even let my father and I go back there during the CT scan to make it easier on Tripp. We were really thankful. The radiologist even came out and spoke with us about what he found. He was concerned because he didn't' know much about babies, but it turned out to be exactly what he thought it was.
After numerous phone calls, and a persistent mama, we got a new surgeon. I am so thankful for her. Dr. Frankie Fike. She works at Children's in Plano, Dallas Children's, the Presbyterian hospital, and she is a teaching assistant at Southwestern. In two weeks (when were going to just be getting a CT scan) we were sitting down with her, then going in to surgery a few days later. I was very impressed. It felt like we had been best friends for years and even though she wasn't a mom, she made me feel very comfortable.
When it was time for the surgery, we packed in that waiting room like the Beverly Hillbillys! All twenty of us. Everyone got to meet her, ask her questions, and she was so polite to our whole family. She could tell everyone was just nervous and wanted to be there for their baby.
Tripp's surgery was the scariest thing we have ever been through. Leave it to me to pass out and hit the floor before they ever even took him back for surgery. I am telling you I was mortified; so afraid I was never going to see my baby again. Other than his tumor, he was a very healthy eleven month old baby.
About half way through the surgery, one of the doctors came out and told us he was having heart complications. His blood pressure was extremely low, and his heart wasn't squeezing as powerful as it should have been. I thought I was going to hit the floor again, but I tried to keep my composure for my family. I knew we all had to stay positive if we were going to make it out of this. There is no fear like the fear of losing your precious baby.
What seemed like weeks later, we made our way to the PICU suit on the twelfth floor. My poor angel from heaven looked horrible. They were still trying to get his blood pressure corrected and he wasn't breathing on his own and no one could figure out why. There were a few times where he stopped breathing altogether. In those moments, words cannot begin to describe the terror that swept through my body.
The PICU nurses, doctors, and surgical team, were a God send. They took such good care of him. One of the nurses stayed up all night long and rubbed Tripp's head to keep him calm while he was sedated. I will never forget that. They didn't want my fiance and I to do it because it was messing with Tripp's blood pressure. We got to stay with him the whole entire time so I watched that nurse never leave my baby's side. Talk about tugging on mama's heart strings.
Two days after his surgery, while we were still in PICU, we celebrated his first birthday. The hospital sent child wellness to speak with me about a birthday party. I had brought the decorations from his real party since I had to cancelled it 2 days before the surgery, but they made a banner and brought him presents! It was so thoughtful. My first priority, of course, was to get my child better and healthy, but this mama was sad her baby had to spend his first birthday in the hospital. I just wanted it to be special for all of us. Even though he wouldn't remember any way.
We had cake, tons of presents, and the cutest decorations. It was so special for my son and our family. We will never forget it. If any of your children have to spend their birthday in the hospital, I recommend you speak to one of the wellness counselors. They really do treat you like family! As happy as we were to finally leave PICU, we missed it. The care my son and our family received on the twelfth floor was incomparable.
The nurses on the fourth floor were super sweet. It was a good ending to our week long stay at the hospital. Tripp was extubated and completely off his blood pressure medicine. All they had left to do was get his potassium levels back to normal and get his pain management under control and then we could go home.
Their goal the second day we were down there was to get him to walk and take him up to the fifth floor to the play room. It was a lot harder than anticipated, but we finally had him up, playing, eating, and back to his normal self. I have to say, he was a happy baby before, but he is even happier now.
I don't know about The rest of you moms, but i'm super picky. I can either be a bitch, or the best friend you ever had. The nurses on the fourth floor listened to my fiance and I and really worked with us on taking care of Tripp. We appreciate them all. They let me give him all of his medicine myself and put it in smaller syringes so he wouldn't gag. The team coming in every six hours to take his blood tried everything they could to make him comfortable. I was impressed, and there was only two times I tried to set one if them on fire. My fiance was super proud!
After seven days, we told all of our new friends goodbye. It was bitter sweet. Five days prior, we didn't even know if we would get to hear our baby's voice again. We are still waiting on the results from the lab on whether or not the tumor was cancerous, but we have our baby, and he is happier and healthier than ever before!
If you want your child to be in great hands, Children's is the place to be. I have a new found respect and admiration for anyone going through health problems, or death with their children, no matter how old. God bless them all.
ALWAYS WASH YOUR HANDS AND PROTECT YOURSELF AND YOUR BABY!!! You never know who is carrying a virus or disease!!