Being a parent is one of the most precious blessings life can give you. I am fortunate to have two beautiful children, Addison and Michael Jr, whom I love above all else in this world. The challenges that come with parenthood do not come with a manual and life sometimes throws obstacles at you to which you cannot fully prepare for. That was the case January 1 of this year. My son Michael was admitted to Hasbro Childrens Hospital and has remained there since. It was the beginning of a long road that we are still on the path to finding answers and solutions to. As a result, I have spent almost all of this month at the hospital with Michael and have been unable to work. I don’t know where this journey ends and when things will go back to normal but I have faith they will. In the meantime, my family is in a tough situation, certainly emotionally, but also, financially, in terms of loss of income combined with large uncovered deductibles and co-insurance that falls on us to cover. Any help would be immensely appreciated.
Michael Walter Sikora, Jr. is a 4 month old baby who was born with a blood disorder. He has Severe Hemophilia A, meaning he has less than 1% clotting factor in his body. Michael needs to have daily factor 8 infusions (which is $600 per dose) With this disorder comes a lot of complications, such as spontaneous bleeds. This can happen in joints, or muscles, and very rarely into the brain. On December 31, 2017, Michael was very irritable and had a fever. I brought him to the pediatrician who ruled out an ear infection or a pneumonia and even a urinary tract infection. She said it’s probably a virus and to keep an eye on his fever for another 24 hours. That night, Michael became increasingly irritable and his fever wasn’t coming down with Tylenol . (Michael can’t take Motrin because of his Hemophilia) I went with my gut and brought him to the ER at Hasbro Children’s hospital. After several blood tests and X-rays, we still didn’t have answers. Michael was deteriorating in the emergency room. He was no longer irritable, instead he became lethargic and hard to arouse. When he opened his eyes, he could only look to the left, clueing a doctor to a possible problem in his brain. The doctor sent him for a stat CT scan. When hearing the results from the CT scan, I felt like the world stopped turning and life stood still. “Michael has sustained a left sided brain hemorrhage and we need to move quickly”. Now it’s about 6am on New Year’s Day. We were moved to a critical care room in the ER and multiple doctors and surgeons from multiple specialties ran in. Michael Sr. And i were signing consents to treat while tears streamed down our faces. Will he make it through this? Will we lose our son? Will he have neurological deficits? We had so many unanswered questions.
About an hour later we were transferred from the ER to the PICU where the neurosurgery team came and inserted an EVD (external ventricular drain). He was intubated and sedated. The pressure inside his head was a lot higher than it should be and there was a build up of blood. He was extubated that night. The drain slowly drained all of the extra blood and fluid out. This stayed in for about 2.5 weeks.
Meanwhile, he was constantly getting poked and prodded for blood work and his factor 8 infusions, so they decided to put in a central line which could last longer than a regular peripheral IV. He went to surgery and had a line placed in his neck called an “IJ”. (Internal jugular central line). This gave Michael more peace and less pain because the repeated needle sticks were no longer necessary.
Before they took the drain out, we went for a repeat CT scan to make sure everything was drained as it should and we are on our way to recovery. If not, there was chatter about Michael needing a shunt which would stay in forever. The first good news we had in weeks, the blood was significantly drained and he seems to be reabsorbing fluid on his own. This was the first time I felt as if I could breathe again.
We were transferred to the 5th floor out of the picu. Michael was doing exceedingly well! He went back to the OR one more time to have his IJ central line changed to a Broviac which would make infusions of his medicine at home a lot easier!
Michael was happy, smiling, and even teething through this whole process. He is such a strong, brave little man.
We were ready to go home and he started having small, quick seizures. The neurologists said this could Happen from all the blood that was on his brain, and also part of the brains healing process. He was put on a low dose of anti seizure medication and we were sent home.
After 24 days we were so happy to Home! We set up visiting nurse services once a week to come check on us and michaels progress. We had all of our supplies and medications needed so that I could care for Michael in our own home.
24 hours after being home, Michael started having very frequent seizures that were lasting longer every time. I called the hematology team and they said to bring him through the ER and they will have neuro see us right away. Michael Sr and I were so scared and worried. Is this another bleed?? We just got home yesterday!
A few hours after being in the ER, Michael had yet again another ct scan. No bleed, thank god! But, ventricles in his brain are enlarged, even bigger than his last ct scan. Why??? How can this just happen?? We were admitted back to the PICU, it’s like we never left.
They are giving Michael a bigger dose of anti seizure medication twice a day to stop him from seizing. They are monitoring in the icu all weekend and We are going for an MRI on Monday. If his ventricles are larger, then he will need a shunt placed on Tuesday. If the ventricles are stable, then there will be no intervention at this time. Any procedure that Michael has requires one extra step because of the Hemophilia aspect. His levels need to be over a certain percent so that he won’t have a bleed.
My daughter, Addison, has been such a trooper through all of this. I have slept at the hospital 24 out of 27 nights to stay with Michael. Michael sr has been trying to maintain somewhat of a “normal” life for Addison at home. We had a 5th birthday party planned for her on Sunday. She couldn’t wait! Unfortunately, we had to cancel because of Michael being in the hospital. Surprisingly, she understood and said that’s okay. She is so wonderful. We promised to make it up to her when Michael is better
We can’t thank everyone enough who have helped us through all of this. From their kind words to helping with our puppy...for a hand to hold in the hospital, for people bringing us food and taking Addison. We are so grateful for each and every one of you ❤️❤️❤️