Little Patrick's Medical fund
First off we would like to say a HUGE Thank You to all who helped us be able to stay with our son at Seattle Children's Hospital. We are blessed with the love and support from friends, family, and co-workers.
If you are new to this page let me share with you our son's journey thus far.
It was late September and our son Patrick started complaining of shoulder pain. We tried pinpointing where exactly it hurt, but being that he just turned 5 years old he had a hard time explaining the pain.
Fast forward a week and the pain continued. I explained what was going on to his doctors office and they asked us to bring him in. No one could tell us why he was having pain and we chalked it up to growing pains.
Now we are into October and Patrick is waking up in the middle of the night screaming and crying saying his left hip is hurting. We try to move him and he screams more. By this time it is 4 in the morning and we take him to our local emergency department. They did blood work and an xray. The doctor came back in the room and stated "he has synovitis, give him some ibuprofen and lots of rest it should clear up in a week".
I asked the nurses to show me his lab results and I noticed his labs were not normal at all. I questioned this matter and was told they would go back to normal once the synovitis was gone.
For one week I monitored our son everyday and night and kept telling myself "he isn't getting better, this isn't synovitis something else is wrong". Then the fevers started coming everynight between 2 AM and 4 AM. The following week his doctors office ordered more blood tests, this time testing for Arthritis. Patrick stopped walking and had to be carried at this point.
I brought my son home and let him rest while I waited for the test results.
5 PM that night the doctors office calls....his labs were getting progressivly worse. I immediatly broke down and told them I was taking him to Seattle that night.
I remember my husband walking in and he already knew we were going because I had our suit case packed and by the door.
I don't remember much of the drive because all I could think was "get him to Seattle Children's they will save my baby". We took him to the emergency room at 9 PM at night. I handed them his latest labs and xrays and told them "please help us".
It only took 15 minutes for them to have us back in a room and hooked up to monitors. I knew this was the place we were meant to be. After multiple tests and an ultrasound of his hips, the doctor came in to tell us they wanted to do surgery right away.
Everything and everyone was moving quickly and it has become a blur now. Patrick was in surgery at 1:30 AM for possible "Septic Hip". They told us it would take about 30 to 40 minutes for the surgery.
They gave us a beeper and name badges and sent us to the surgery waiting room. I remember looking at my phone and realizing it was already almost 4 AM and he STILL wasn't out of surgery.
About five minutes later the doctor came out to tell us they found 71,000 WBC on his left hip and 3,200 WBC on his right hip. They told us they were going to put him on IV antibiotics and that we would be in the hospital for at least 10 days.
A million things rush through your mind when you're told your child is being admitted and that he is ill. We didn't know if the medication was going to work, how long we would actually be there, how our son was going to feel, our jobs, our animals, our home etc.
But truthfully, we didn't have much time to think about all of that because at that moment nothing mattered other than getting Patrick better.
The samples they took from his hips weren't growing bacteria or anything. Everytime he spiked a fever(105 F) they drew labs, which meant he was getting labs one to two times a day. The antibiotics weren't working and Patrick was getting worse. Now he had major swelling in his hands, knees, feet, and legs.
We had three groups of doctors working with us Rheumatology, Orthopedic, and Infectious Disease. Each group of doctors would come in to Patrick's room throughout the day and they would ask us the same questions over and over. At first we got irritated, but then we realized they are trying to fit the puzzle pieces together just like we are.
I remember one of the worst days there was when Patrick had multiple labs, an ECHO of his heart, and a CT all in one day. Patrick had to be held down by three people when he got the CT because he was scared and upset. All I could hear was my baby screaming and crying and there was nothing I could do.
Next, they did a sedated MRI of his lower extremities and aspirated fluid from his knees and ankles. After 5 days the Rheum doctors decided to take over his case and move us to their floor.
They had him on so many different medications it was hard to keep up so I got a note book and kept track of fevers, medications, and tests.
Each morning around 830 AM I would go out in the hallway and meet with all of his doctors and they would discuss his case and decide what route they wanted to try for the day.
On October 30th around 12:30 in the afternoon our son walked for the first time in a week with a walker! On October 31st Patrick was Diagnosed with SJIA System Juvenile Idopathic Arthritis. "Systemic juvenile idiopathic arthritis (sJIA) is one type of JIA. Between 10% and 15% of all children with JIA have sJIA."- Arthritis Foundation.
"In an autoinflammatory disease, such as sJIA, the immune system becomes active for reasons that are not clear. It then remains active and begins to attack healthy cells and tissues. This results in inflammation of the joints causing them to become red, swollen, painful or hot to the touch and more widespread inflammation of the body resulting in features such as fever and rash."- Arthritis Foundation.
They finally had a diagnosis for us and a treatment plan, but they wouldn't let us go home until his labs "normalized" I say it like that because his labs will never be normal.
We stayed at Children's Hosptial for almost two weeks. We thought once we left and had the treatment plan in place that things would go back to normal. We weren't being niave we were being hopeful.
Patrick did okay for the first two weeks. We (including his doctors) thought he was going into remission. Then it started over again. Patrick was having severe pains, his labs were going up again, and he spike a fever (we had been about two weeks fever free). After adjusting his medications and not seeing any improvment, the doctors decided that infusions every other week would be helpful.
That brings me to this past week, Patrick had his second infusion and third sedation. They did another MRI but this time of his head. I got a call on 12/23/16 from his Rheum doctor telling me "Patrick has arthritis in his jaw too".
Which explains his jaw pain and not being able to open his mouth very well. Plus, his speech has been affected.
If you're still reading this (which I hope you are) I wanted to get to the point of this GoFundme account.
We are literally traveling 2.5 hours atleast once a week to Seattle to get his infusions, his check up appointments, and other tests completed. My husband and I both work full time and sometimes my husband misses a day of work to come with us. Now, Patrick is being referred to another specialist at Seattle Children's to decide what they are going to do about his jaw.
Lately there is more money going out then coming in and it has been hard financially. It is not an easy thing to ask for financial help. It is not easy summing up three months into a couple paragraphs.
We also wanted to share his story in hopes of helping others whose children are going through the same thing. Patrick is on medication that prevents him from being at daycare right now and we literally have sanitation stations in our home so that no one gets him sick. Because a simple cold or flu could put him back in the hospital.
We ask this from you,
-Donate if you can
-Pray for our little boy
-Share his story
There is no cure for SJIA. We pray daily for a cure and for our son to go into remission.
Love to all and thank you for reading,
Pat, Chasia, and Little Patrick
