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Help Me Help my 16 Year Old Daughter That Suffered a Stroke
- doctors wanted us to give up, but we stayed strong. By the Grace of God we stayed #CourtneyStrong. Two and a half years ago Courtney was diagnosed with Inflammatory ***** Disorder(Since her stroke the doctors have now went with a more specific diagnosis *Ulcerative Colitis*). Until May of this year, Courtney’s IBD was being managed with medication. Well, 05/26/20 will go down in history as changing our family forever. About 2 weeks before her stroke she had a stomach ache with some vomiting, and some blood in her stool. She complained about neck stiffness and pain, which we thought she might have slept wrong, so we just put a heating pad on it). I took her to the first ER, where they did basic blood tests, but did not do a CT Scan(which I found out later after her stroke, that would have been the best thing, because it would have shown the clots in her neck and brain) the doctor told me to continue her meds. and keep her hydrated. She appeared to be getting a little better, but on 05/25/2020, she seemed to be getting sicker. I called the nurse on the insurance card and asked her what I should do. nurse told me to give her plenty of fluids and contact her Ped the following. I contacted her doctor, and got an appointment for the afternoon of 5/26/20. I went to the grocery store before the appt. Upon arriving home I found Courtney, with her eyes open, unresponsive and drooling. I freaked out of course, got her up, put clothes on her, and then put her in the car and rushed to the emergency while calling her doctor letting him know what was going on...Long story short(you can by the book about Courtney’s story when it com
es out), I arrived at the ER where we sat for hours while I found out later that she was having a stroke. Courtney presented with a stroke, but was not worked up as a stroke patient. The ER actually missed her blood clots, and stroke, even after they performed a CT-Scan(They diagnosed her with Eagle Syndrome). The next morning we were transported to Texas Children’s Hospital, where they caught the blood clots and the stroke from the ER’s CT-Scans. Here we are almost 3 months later, and 3 surgeries later(2 surgeries placing a line directly on her brain to shrink the clots, and 1 surgery removing most of her colon), Courtney is in Rehab working to walk, talk, eat, and go to the restroom on her own again.
I’m sitting here mentally and emotionally tired, with red swollen eyes, and a pounding headache on the verge of breaking down, because there are so many things going through my head right now. One thing I am wondering is how long I will be able to be strong and sustain before I just completely crumble and melt. I have quickly found out that there is no worse pain in this world than having a sick child, and every time you think it is getting better, a sledge hammer comes out of nowhere and hits you over the head right before you turn the corner and hit a brick wall. I constantly pray. I go to sleep and wake up praying for God to put the right people into my path that will help me help my Courtney, and I will continue to pray no matter what the situation is, but oh this is so hard. Many of you are aware of what is going on with my sweet Courtney. Some of you have made it a point to check in with me often, sometimes on a daily basis, so you know that on September 1 Courtney was transferred from Tirr Memorial Hermann where she was staying for a short time for Inpatient Rehabilitation back to Texas Children’s Hospital, because she started having seizures after the doctors attempted to take her off of the seizure medication, which her seizures only started happening after her massive stroke back in May of this year. For the past week her doctors from Texas Children’s, and Tirr Memorial Hermann(Rated Top 5 in the Nation in Brain Injury, and the only one of their kind in Texas) have been fighting with the insurance company to allow her be transferred back to Rehab. Myself, and her doctors are puzzled as to why they denied Courtney to go back. The insurance doctor is stating she doesn’t believe Courtney will benefit from Inpatient Rehab, because she can’t do three hours of rehab at this time, but Courtney has Disorders of Consciousness, so according to Tirr Rehab, she could literally be in a Coma, and under their regulations she qualifies, and they would be working on getting her more aware and alert. The few weeks that she had been in Rehab, the Therapists, Doctors, and Neuro-Psychologist were making progress with Courtney. At this time she can’t speak, but Tirr was teaching her how to communicate with her arm and head. Courtney was able to communicate that she knew her name, she knew she was a female, she liked Drake and Disney movies, and she wanted a soda..lol. She also told them she had pain in her neck, head, both arms, and stomach, and the best thing of all that she communicated with them was that she missed her MOM, which made me smile and cry! I remember when she first had her stroke before she lost the ability to talk, she said something to me that made me want to break down. I had been crying, and she said mom don’t cry, and she gave a hug and a kiss, and then she looked at me and said, “Mom, what if I never see you again?!” At that point it took all the strength in my body to not break down, and I looked at her with a smile, and said, “Courtney girl, you don’t have to worry, because everything will be ok, and you will see me again. So, you see, I have to do everything in my power to help my baby, so that she can get better and see me again. I don’t know how someone who doesn’t even know my Courtney, a sweet 16 year old child, could even feel comfortable with denying her care that she truly needs. This is a child that was just discussing with me the road trip that we wanted to go on next year to check out colleges that she wanted to apply to. This is a child that scored so high on her Pre-SATS, that I was contacted by the school district, because before the COVID-19 it was decided that Courtney and several students like her needed to be recognized for their achievement, and were being placed in a special honors program. This is a child that is already getting letters and emails from colleges and universities for early determination. This is a child that buys homeless individuals dinner with her allowance. This is a child that was working on putting together her own nonprofit business to help those that were less fortunate than she was. I remember one particular day about 4 years ago, I had gotten off of work, and picked Courtney up from her aunts house, and we were driving home, when Courtney asked me to make a u-turn, because she wanted to buy a man that was sitting under a bridge dinner. Of course I was trying to rush home, because I was tired, so I said to her that I was in a rush and I didn’t want to stop, but when I looked at my Courtney, and saw the hurt in her eyes from me not wanting to stop, I had no other choice, but to make a u-turn, and go back, so that she could buy this man dinner. When I think about my Courtney, and how she is truly a wonderful person inside and out, it just makes me sick, that she can’t get the same in return. I don’t know how such a caring person can’t get the same from everyone else in her time of need. My hope and prayer is that one day soon, her guardian angel(s) will come into our life, and without it being another thought, brighten her life by making it possible for her to get everything that she needs and more, and give her hope that there are individual(s) in this world that are just as wonderful and caring as she is, just like I’m sure the man under the bridge 4 years ago thought of my Courtney as his guardian angel that day. Courtney your mommy will not stop fighting for you, if it kills me, you will get what you need!!! #CourtneyStrong….!!
AHAKellie, November 4, 2020 3:38pm EST
I know that this must be so hard for you, and I'm sorry. Caring for Courtney must have so many highs and lows, and you have to make sure you take care of yourself in all of this, too. Our community is here for you, and we also have resources that may help:
- Stroke Family Warmline:1-888-4-STROKE or 1-888-478-7653 Monday-Friday: 8AM-5PM CST
Please know that you are not alone. We are all supporting you and Courtney!