Timothy's Incidental Findings!!!!

Hi, my name is Teri, and I would like to start by saying thank you for taking the time to click, share and read our story. That alone truly means so much to us. We have so many people and churches that have us on their prayer chains already, but if we are not on yours, I ask you to please add us. I ask you to please pray for my son, pray for all of us and our whole situation. We are just beyond grateful for everyone that has already been here for us and has helped us this far. I don't like having to ask for more help or more prayers but I know there is a time to hold and a time to fold.

So, I am starting this GoFundMe to help us pay some bills, do some major repairs and maintenance on my vehicle, and also help me cover some of the expenses of traveling back and forth to Children's Hospital in St. Louis, Missouri so many times. Which is three hours from where we currently live. I need to be able to continue to take time off of work and travel back and forth multiple times to St. Louis for my son, Timothy. He is just 12 years old. I must get my son to all, of the appointments and multiple surgeries that are coming up over the next few months. I only have a couple of weeks until his first major surgery, which is to fix the aorta of his heart. He will recover from that for about four weeks, then have to go back for surgery on the left side of his horseshoe kidney.

Okay, wait, let me start more from the beginning for those who don't know how all this started. When Timothy was about one year old, we were told he had a heart murmur, but not to worry. It was fine, it would close on its own, and we would probably never even hear another thing about it. Other than that, over the years Timothy has always presented as a perfectly healthy, normal, boy. He is into basketball, video games, swimming, and music and just loves to play around and laugh. He has such a big, and loving heart.

In June 2017, I took Timothy to a local ER for throwing up, and belly pain. They did a CT, came back to tell me he probably had a stomach bug and then the doctor asked if I knew he had a Horseshoe kidney. I of course did not know, so we followed up with his doctor. We were told by his PCP that lots of people have horseshoe kidneys and they usually don't cause any problems for most people. He should grow into a perfectly healthy adult. I asked if we should see a specialist, or get more images and was told no that there was no need for that. He reassured me that he was just fine.

In April 2019, Timothy fell off the monkey bars on the school playground. I rushed to pick him up from school and then rushed him to the local hospital. He was crying in pain the whole way to the ER. They gave him a room and took him straight back for imaging. A few minutes after that they brought him back. Then they came in and placed a C-collar on him. The doctor tells me, he believes my son has a broken neck and he is calling for a helicopter to fly him to Cardinal Glennon in St. Louis. By this time, Timothy had calmed down and stopped crying. I just looked at my son and then looked back at the doctor and said Okay. I mean what else is there for me to say but okay! So I watched him fly off and then had to drive three hours to get to be with him again.

My mother and Timothy's father live much closer to that hospital, than I do. They were able to get there before me and right before I arrived at the hospital, the ER doctor discharged him. They discharged him to my mother and his dad, saying that he does not have a broken neck, but actually, he has anomalies on his bones that make him look fractured. The C-collar probably helped unpinched whatever nerve may have been pinched and was causing the pain earlier. They reassured them that he was fine to go home, but we should follow up with his PCP about his heart and the anomalies on his bones. When I pulled into the parking lot, everyone including Timothy was standing outside the hospital ready to go back home, after a very eventful scare. We all were so confused but we just thanked the good lord he was okay.

So of course I did just what they recommended, and I made a follow-up appointment with his PCP. I didn't understand what they had found or what they were even talking about. I had very little medical knowledge at this point also. When we go in for the follow-up, the doctor says he received and looked over the image report from the hospital visit and he doesn't see any reason to worry. He's a lucky boy and we should be grateful for the anomalies being there instead of fractures. Then I start asking him, well what about the heart though. He tells us that his heart looked fine, and its functioning great. I asked if we needed to see a specialist or maybe get more images. He reassured me that we didn't need to. He has seen these exact things in some of his other patients and they are all doing just fine. The hospital just likes to over-worry parents sometimes. I believed him, I mean Timothy was not complaining about anything and he truly appeared to be just fine now.

In October 2022, I decided to change my children's PCP. I was told about a new doctor, in our neighboring town, and he was taking new patients. All of my children had been seeing their previous doctor, for most of their lives. I didn't have a reason for switching, other than saving on distance and gas money. We liked the doctor we had, but it took almost an hour to drive to his office. It was just getting hard to take them so far for appointments sometimes.

I took them all in for their very first appointment, with the new doctor's office, to get them all sports physicals for school. We were just seeing the PA this time around because it was just sports physicals. I had other appointments made for meeting the new doctor and establishing care with him. All three of my girls passed their sports physicals.

My son Timothy did not pass his physical though. During the physicals, I noticed that the PA was asking different questions. Different from what I have heard in past physicals that they've had anyways. All good questions though. When she started on Timothy, he said yes to having chest pain and getting short of breath sometimes. I said, Son what are you talking about? You have never mentioned this to me, like ever. He proceeded to tell us that, he started noticing the pain a while ago. Around the same time his class started running the mile in PE. He said I thought it was normal because I'm fat and I just needed to lose weight. The PA then told him, he was actually not overweight, and of course, I backed her up on that. After I picked my jaw up off the ground. I asked him why he has never mentioned this before now. He said, well because it usually only happens at school and I feel fine when I get home. I guess I just never remembered to tell you about it.

Well then, the PA took his vitals and listened to his heart. She said, Well Timothy I don't like having to do this but we need to figure out what is going on with you buddy. Your blood pressure and heart rate are high for your age and I can hear a loud heart murmur. I immediately said there is no way. We were told that was going to close, and we did not have to worry about it. She reassured me that it was there and then showed me where and how to listen to it. I was honestly baffled and didn't know what to say or do. The PA conferred with the doctor and then restricted him from physical activity, until further notice. Timothy was so upset because he was looking forward to the coming basketball season and getting to play with his friends.

I took him in to see the new PCP, hoping to get some more answers and try to better understand what in the world was going on with my son. He immediately sent us for new imaging and blood work. Next, he asked a whole lot of questions, about different symptoms that he may be having. He said they could even be things that you don't think are symptoms. Well then I got to asking, do you mean like nose bleeds, he's been having quite a few of them lately. I just thought he was picking his nose and lying about it. When he was younger the school would call me all the time about him throwing up while playing hard in gym class. I took him to the doctor many times and was told to change his diet every time. I was told not to let him have dairy anymore. The Doctor told us that, he wasn't sick, because there was no fever or any other signs of infection.

We've been told he has seasonal allergies. That's why he is a mouth breather and that could also be why he's having nose bleeds. He has leg pains sometimes, but I was told those were growing pains. He complains of belly pain sometimes too, but most of the time it's when he gets constipated though. I tell him that he will feel better after a movement and then sure enough he feels better after. He has always said he can't blow his stuffy nose because it hearts his head, and when he gets stuffy his ears will get to hurting sometimes. Then it all clears up and he feels better. Then, Timothy speaks up and asks, can a headache, dizziness, or weakness in my legs sometimes, be symptoms? We both just looked at my son and said they can be, yes.

He then told us that he was going to be getting us to see some different specialists. I asked him what was causing him to have high blood pressure because this is new for him. He said, It just wasn't clear which organ was causing his high blood pressure in his arms but low blood pressure in his legs. It was either his heart or his horseshoe kidney. He told us to stop giving him ibuprofen and he was still saying no physical activity until we get some more answers. So then we finally started getting calls and getting some appointments made for him to see some different specialists in St. Louis.

On May 10th, 2023 we finally got to go to Children's Hospital in St. Louis, to meet two of Timothy's new specialists. We meet with the ENT specialist and answered a bunch of questions. She gave some advice on how to keep him from having so many noise bleeds. Then told him to practice more blowing his nose and try to do it less forcefully. We went to see the Uroligy Specialist next, and they sent us for an ultrasound of his kidneys. When we sat down with the doctor after, I knew he was about to tell me something I didn't want to hear. He said well, I hate to tell you son but you're going to need surgery on the left side of your horseshoe kidney. It has two blockages, a very narrow ureter, and its retaining fluid causing it to swell up some. It's probably what has been causing his belly and side pain. Then he said they would be calling me to schedule surgery for the repair of his kidney. We said Okay!

On May 16th, 2023 we got to meet with his new Cardiologist. He sent us for even more tests and imaging. He came into the room while his eco-cardiogram was being done and started to ask us questions about his symptoms and lifestyle. Then he stops talking and got silent for a minute. I knew he was about to tell me something I didn't want to hear. He says, okay Mom, come here and look at this. As he points at the screen like I knew what we are looking at. He says, your son has a Coarctation of the aorta and a bicuspid aortic valve. This right here explains a lot of his symptoms. He will have to have surgery to fix these things. The doctor then took us to another room and pulls out a picture of a heart, on paper. He starts to explain what he believes is going on with Timothy's heart. I then tell the doctor that, we were also just told that he was going to be needing kidney surgery soon as well. He said well the heart will have to be fixed first, and then the kidney. He says he wants me to take him to St. Louis Children's Hospital for some better imaging. That his office would be calling me to set up everything. He said he will also be calling Urology to collaborate with them on everything.

On May 20th, 2023... Timothy was feeling sickly and started to have a lot more left-side pain all of a sudden. So I decided, we weren't waiting around anymore and I took him straight to St. Louis Children's Hospital ER. They started to tell me that it was probably all anxiety because of all the new diagnoses recently made. I did not agree and asked them to consult with Urology before just assuming anxiety. They then sent us for a new ultrasound of his kidneys. I went with him, because I wanted to see for myself, what they looked like now. I could tell myself that his left side was way bigger than just two weeks ago at his appointment.

They came back saying that his left kidney was three times the size of the right side and bigger than it was just two weeks prior. They said he was going to be admitted and they were going to put a stent in his kidney to hopefully relieve some of his pain and pressure. They said this is a temporary fix, till we can get his heart fixed and then they can go back in and fix the kidney situation. So the stent was placed and we were sent home the next day, with some new medications. I picked them up with some laxatives for him to take too. I just knew he was going to be constipated from these new medications.

After about six days of these medications, and even with laxatives on board too. Sure enough, he was constipated, so I stopped his pain medicine a day early and talked to the doctors. They agreed and told me I made the right call. We started to do all the right things to get him to have a movement. We ate all the good fiber foods, tried three different laxatives, tried old remedies, went on walks and I even took him to our local ER three different times. They tried enemas and different medications too. Despite all of our efforts, my son did not have a bowel movement for sixteen days. I was told by one of the urology nurses, that I may need to bring him into St. Louis Children's ER again.

On June 9th, 2023... I took him back to St. Louis Children's Hospital ER again and well this time he was admitted right away with a bowel obstruction. We were there for six very long days but they finally got him mostly cleaned out and then discharged us home. During our stay though, we learned that we are now going to be adding Nephrology, and Genetic specialists to the list of doctors he is now seeing. With the probability of adding even more in the future.

Timothy is currently scheduled for his first Heart Surgery, to fix the coarctation of the aorta, on July 19th, 2023. This is all coming up so very fast for all of us. His first kidney surgery will be about four weeks later. We also have other appointments to go to before and after the heart surgery also. As of right now, we know he has to have, two heart surgeries, two kidney surgeries, and more conversations with more specialists down the road. I truly don't know how we are going to do all of this yet, that is why we are hoping for some outside help I guess. Even if you are not able to help and donate just 10 dollars. Please, I implore you to just give this a quick share to everyone you know.

Guess I do know one thing, God is Good, all the time, and all the time, God is Good!!!!!

Thanks for reading!