I sit here and remember the events surrounding Thanksgiving last year. My three-year old son Jude was very sick last year. When we ate the Thanksgiving feast at my parent’s house, he was in the bedroom sick, while the rest of us were at the table. He got progressively worse after Thanksgiving.
Let me give you a little background. Jude had no history of major illness and no known allergies. He had an uncomplicated delivery and was a healthy birth weight. In fact you can read his birth story here. The family did not have any health insurance, so the story to come gets extra stressful due to that point.
Jude got sick around 11-15-15. He was running a temperature of 100-101 for about three days, and then his temperature returned to normal. Then, he got a head cold for about four days with no fever. Jude was eating and drinking normally during this time.
The next five days, Jude slowly lost his appetite. He would throw up once or twice a day. He was still eating some and drinking a normal amount. On Saturday, November 28th, things worsened. Jude became weak and feeble. He was given sips of water and small pieces of candy to increase his blood sugar. He seemed to perk up with an increase in activity and normal amount of talking. However, he still did not want to eat solid food and would vomit if he tried. The fluids would stay down though. He continued with the increase in activity into the evening and slept normally.
Sunday, November 29th, he was back to being weak and seemed slightly worse. Undivided attention was given to help him eat or drink, but now he was unable to keep food or water down. Around noon, we started to give him a teaspoon of Pedialyte every ten minutes in an attempt to keep him hydrated. After a few hours, we changed the dose to a tablespoon every ten minutes. It seemed we were making progress, and about 6 p.m., he asked to go to the bathroom. When we moved him to the bathroom, he vomited up about three cups of fluid. Our progress was undone! It was time to take him to the ER.
We took Jude to our local hospital about 7 p.m. on Sunday evening. Jude was given an IV of saline for dehydration, and he had blood drawn for tests. The blood test showed that Jude had a very low platelet count, and he was referred to a pediatric hematologist to rule out any underlying cause to his abnormal blood work. Las Vegas was the nearest place with a pediatric hematologist on the hospital staff.
My husband and his mom drove Jude to the children’s hospital in Las Vegas about 3 in the morning on Monday, November 30th. Later that day, Jude was transferred to the pediatric ICU (PICU). Jude’s vitals were not doing well. His heart rate and blood pressure were low. His oxygen saturation was also low. He looked very pale and responded very little, even to needles.
In the PICU, many different ideas of what the cause of the low platelet count were given, including cancer and blood disorders. We were also told it could be consistent with him eating poison.
My dear friend and I drove down to Las Vegas on Monday evening to relieve my husband and his mother. We will call this friend Jean, so she can remain anonymous. This friend is beyond amazing and left her own family to be with me in my time of need!
While we were in the PICU, we realized that our friends the Stines were in the PICU as well! Their two month old Knox had stopped breathing suddenly. You can read more of their story on Fox News.
Knowing that others were there with me through this ordeal helped! The Stine family was praying for Jude, and I was praying for Knox and for them.
In our first room at the PICU, Jude had a CT scan, chest film, 2 EKG, an EEG, multiple blood tests, and he received lots of IV fluids.
In the picture, he has goopy hair from the EEG. This picture brings tears to my eyes! I was so happy to be able to hold him! He was more stable than when we brought him, but he had so far to come!
Okay, a little comic relief 🙂 There was an older lady that did the EKGs. I don’t recall her real name, but we nicknamed her Cruella de Vil. She had black and grey hair just like Cruella, and she spoke with a French accent. She was also extremely rough, especially for working in a pediatric hospital. She did Jude’s first EKG, and he didn’t care to respond. The second EKG, he hated it and squirmed and screamed. This momma was thrilled to see the spark of life and energy!
I slept in the chair in the picture, and my friend slept on the couch like thing that they had. The doctors and nurses came in every hour or less to check on Jude and shine lights in his eyes. They also had to come in when his monitors would beep alerting them to his bad vital signs. In other words, not much sleep was to be had!
Jude’s vitals did improve with the IV fluids, and he actually started eating. We were ecstatic to provide him chicken, french fries, and ketchup!
Because of his improvements, we were moved down to the pediatrics floor. The doctors continued to question and question again what was happening or had happened to Jude. They continually asked us if he was dropped on his head or fed poison. I did NOT appreciate the implication that I intentionally did this to my child! I was running on fumes, and I was telling the doctors and nurses anything and everything that I could remember. I was brought to tears by one of the attending physicians in what felt like an interrogation lasting about 45 minutes. After the female attending physician left, I asked the kind male nurse, “Was she accusing me of something?” His response was, “I can see why you thought that, but she was just trying to get to the bottom of things.”
About an hour went by, and the accusatory doctor came back. I assume that the nurse told her what I had said. She said that she didn’t mean to imply that I had done anything, but she was “professionally dissatisfied” with my son’s case.
A while later, a resident doctor came to sell us on having an MRI for Jude. My friend and I were confused. We had moved out of the PICU. Jude’s vitals were improving. What were they looking for with the MRI? They didn’t really give us a sure answer, but I latched onto the possibility of viral encephalitis and conceded to have the procedure.
We had the anesthesiologist pop in our room and ask why my son was being put under anesthesia for an MRI. He wanted to make sure that we knew the risks. We did know.
This MRI was the first time Jude was away from a parent during his hospital stay. We had to drop him off and say goodbye while they sedated him. We waited for what felt like forever, ate our Ronald McDonald sack lunches, (side note: I really have never like McDonalds, but the Ronald McDonald Charities really do some great things.) and prayed.
Jude came back from the MRI delirious and slurring his words. We finally figured out he was asking for more chicken, french fries, and ketchup. He had to fast for the MRI, so he was hungry! Hunger is always a good sign!
Soon the doctors came in to give us the results of the MRI. They found a large blood clot in the sagittal sinus of Jude’s brain! They started administering blood thinners and warned us that we would have to give him blood thinner shots at home. The good news was that Jude’s brain had sustained NO damage. Also, the blood clot explained the strange blood test results and stopped the doctors from accusing us of child abuse. They didn’t know how he got the blood clot or when. They definitely didn’t know how someone could intentionally cause it! As annoying as the accusatory doctor was, she was the reason we found the answer to what was happening!
Because of the seriousness of his diagnosis, we were moved back to the PICU for close monitoring. We were in a different room in the PICU than before, and this time we were in the room right next to the Stine family. They had many tear filled visitors, but they also stood around baby Knox and sang worship songs. I know that some of the staff found it annoying, but it truly touched my heart.
In the new PICU room, Jude had to be held down to redo his IV. This is so hard for a mom to do! I held him down and looked away with tears in my eyes.
The accommodations were not as nice for visitors, and Jean slept on the floor in the PICU while giving me the couch bed.
Some of the highlights while we were in this room is that one of the doctors came in and asked me if Jude has been throwing up for a month! Ummmm, read the chart! That’s not what happened!
Jude was one of the most stable in the PICU, so we moved again down to the pediatrics floor. Doctors still came constantly in and out of our room. At one point, Jude was watching a movie on the couch. He was totally into the movie, and a doctor walked in to check on him. She could not get him to look away from the movie, and she became worried that he wasn’t okay. She proceeded to yell in his face to get his attention. It scared my friend Jean to tears. He was fine.
A body ultrasound was ordered to make sure he didn’t have any clots in his legs or arms. He was feeling feisty, and he would not hold still. They had to give him something to settle him down 😦
We also got a visit from a dear friend. She brought coffee and helpful medical knowledge. She was going through nursing school, so she taught me how to put the leads on Jude’s chest. Jude would often pull them off, and the alarms would sound. The nurses had a higher patient load on the pediatrics floor, so we did a lot of care ourselves. We mastered taking Jude to the bathroom with his IV cart and also how to redo the leads on his chest.
It was time for Joan to leave, and a second friend, who we will call Patsy, came to take her place. Yes, I have amazing friends! Since she was coming from our home town, she brought changes of clothes, money, and an air mattress for her to sleep on.
The next day, my husband was finally able to come back to the hospital. On top of that, Patsy and I were blessed with an amazing opportunity to get a full night’s sleep! My husband stayed with our son, and Patsy and I sneaked away to a free stay at an empty house in Las Vegas for a night away. I got a shower without worrying that an important specialist would finally come to talk to me the moment I went into the bathroom. On top of that, they didn’t have showers in the PICU rooms. They did have a community shower in the family room. It was still private and all, but all I could think of was athlete’s foot! I never took a shower while in the PICU.
While Patsy and I were away, my husband learned how to give my son blood thinner injections. He would require injections twice a day for 3 months.
Jude still was dealing with a lack of appetite, but he was getting more ambitious. My husband and son got to take a little walk around with the IV cart in tow. Jude ended up throwing up from the increased activity. 😦
Hubby left and Patsy stayed with me. Jude gradually regained some energy but nothing compared to his usual vigor. A mom with a very sick kid gets strangely excited when they have enough energy to be naughty. One of the nights, Jude decided he didn’t want to sleep in the ridiculous crib with bars all around him. He wanted to sleep on the couch with mommy. This of course was against hospital policy, for safety reasons. Jude then screamed for hours saying, “I want out. I want to sleep on the couch, please!” He really did say please every time!
Since Jude was improving, Patsy encouraged me to leave the room and take a walk. It has been so long since I had left! I got lost in the halls, and it took me two times around the circle to find our room. I actually went into the wrong room once!
The next day the IV was removed, and Jude was beginning to eat more. It was not nearly enough in mommy’s opinion. I learned to give Jude the shots he would need, down to drawing the meds, cleaning the spot, and administering.
Miracle of all miracles, we were finally approved for medical insurance on the last day! Oh my goodness! So many tears were shed from this worry! At least once a day someone would come and ask how I was going to pay the bill. I would just cry and tell them to call my husband! God had it all in hand though! We were extremely relieved to have the insurance pay for the $150,000 bill from our stay!
It was finally time to be discharged. I’m pretty sure that the hospital staff was very annoyed by me! I made them add a decimal to the discharge papers! The papers said that he would receive 13 mg of the blood thinner, when I knew that the dosage was .13 mg. That’s a huge difference! I’m just saying!
As we were getting packed up, sweet friends arrived to see us, and they were able to help us with all our stuff down to the car.
Our eight days in the hospital were finally over! Patsy drove us home in her car. It was so wonderful to be back home, but this momma was terrified of him relapsing. I still had a very sick boy on my hands. He was still throwing up once a day for about a week after we got home. We struggled with the blood thinner injections twice a day, but my little man was a super hero!
I couldn’t have gone through all of this without the strength from Jesus and the love and support of all my friends!
One sweet friend set up a Meal Train!
Several friends had fundraisers and sent money!
Friends and family had food delivered to the hospital!
My sweetest friends sacrificed their time and well-being to help me! Jean brought home a sickness to her family, and they were sick for weeks. That’s sacrifice!
Another dear friend and her quilting group made pin cushion owls to raise money for us!
This was the beginning of our story, our first hospital stay. There was another hospital stay and many more procedures to follow. This story is long enough though! Rest assure, Jude is much better currently. Hope is real! Jesus is real! I wrote this story with the desire to share some hope and also to possibly find someone else who has gone through an experience with a child as young as ours with CVST (see title). I have yet to find one! Please share my story, so that I can encourage someone else who may be going through the same struggle.
To date, we are still not aware of the cause of Jude’s CVST.