Care for Dylan
Donation protected
As many of you know, on Sunday evening my nephew, Dylan, had to undergo emergency surgery. Here's what happened (the full long story)...
Amanda and Dylan came for a visit in the end of June. We had made plans for Dylan to stay for a few weeks this summer so that we could spend some good quality time with him. Amanda left for Michigan and Dylan came down with (what we thought was) a cold or allergies. We treated it with Mucinex and a Neti pot. He was feeling better when I left for San Angelo, TX on July 10. When I returned on July 18, I found him with feet that had were swollen 2-3 times his normal size and a rash that covered his feet and went about halfway up both of his legs. His hand was also beginning to swell. My husband said this was new and had just started that day or late the day before. The moment I got home from the airport, we jumped in the car and went to the ER. We spent the night in the ER and he was discharged around 6 am with a diagnosis of Henoch-Schönlein purpura (HSP). The treatment was to hydrate and take ibuprofen every 6 hours. Within 24 hours the swelling had significantly decreased.
Fast forward to Saturday... Dylan now had swelling in his forehead that felt like fluid. The information we were given about HSP said that facial swelling may occur. Amanda called the hospital to see if we should bring him back. She was told that this was most likely a symptom of the HSP and not to worry. We decided that it was a definite trip to the ER if the swelling was still there in the morning. Dylan woke up on Sunday with his eyes almost swollen shut. The fluid in his forehead had moved down to his eyes. He also had a lump on his forehead. The doctors said that the swelling in the eyes was typical of HSP but the lump on his forehead was puzzling. They did an ultrasound and said that it was fluid filled. They were ready to discharge us but Dylan started talking to the doctor about his headache. She decided that she wanted a CAT scan before discharging. The CAT scan showed fluid in the brain. They called Children's Hospital of Pennsylvania for transport and let us know that he needed to be taken there to be admitted. Neurosurgery was waiting for us when we arrived. They let us know that he had a sinus infection that had broken through the bone and infiltrated his brain. They said they could not wait until the next day to do the surgery and he needed to have it immediately. They did an MRI and another CAT scan. He then went straight into surgery. The neursurgeon made an incision from ear to ear over the top of his head, opened his skull from the area of his forehead, and removed as much of the infection as they could. The infection ate holes in his bone. They performed a craniotomy to remove tissue and used it to reconstruct the damaged bone as much as possible. Once the neuro team was done, the ENT doctor cleared out his sinuses around the nasal cavity and cheeks. The doctors said if this had been caught about 12 hours later, the results would have been catastrophic. He was put in the PICU after surgery.
All of this happened with NO INSURANCE! We are working on getting something in place that will hopefully retroactively pay for this event. In the meantime, we are hoping to raise funds to pay the premiums for that insurance, off set lost wages for his parents who are both off of work to be by his side, and pay for any other out of pocket costs that occur in relation to this horrific event. Once Dylan is discharged, he will need to receive 6 weeks of IV antibiotic therapy and will need to stay near his medical teams until each of them has cleared him. That means that he will be staying in NJ for a while. His mom will be staying with him which means she will continue to be on unpaid time off. If you are able to donate, please do. Please help to make this stressful situation a little less stressful. If you cannot donate, please share Dylan's story anyway.
Dylan is doing better than anticipated. He was moved out of the PICU and onto the surgical floor this afternoon. He is able to get up and walk with assistance and sit in a chair. The swelling in his eyes has reduced and he can open one of his eyes now. He is talkative and funny. He's still not out of the woods but he is definitely making progress. There is a 50% chance that he will need 1-2 more surgeries but we'll cross that bridge if/when we come to it.
Amanda and Dylan came for a visit in the end of June. We had made plans for Dylan to stay for a few weeks this summer so that we could spend some good quality time with him. Amanda left for Michigan and Dylan came down with (what we thought was) a cold or allergies. We treated it with Mucinex and a Neti pot. He was feeling better when I left for San Angelo, TX on July 10. When I returned on July 18, I found him with feet that had were swollen 2-3 times his normal size and a rash that covered his feet and went about halfway up both of his legs. His hand was also beginning to swell. My husband said this was new and had just started that day or late the day before. The moment I got home from the airport, we jumped in the car and went to the ER. We spent the night in the ER and he was discharged around 6 am with a diagnosis of Henoch-Schönlein purpura (HSP). The treatment was to hydrate and take ibuprofen every 6 hours. Within 24 hours the swelling had significantly decreased.
Fast forward to Saturday... Dylan now had swelling in his forehead that felt like fluid. The information we were given about HSP said that facial swelling may occur. Amanda called the hospital to see if we should bring him back. She was told that this was most likely a symptom of the HSP and not to worry. We decided that it was a definite trip to the ER if the swelling was still there in the morning. Dylan woke up on Sunday with his eyes almost swollen shut. The fluid in his forehead had moved down to his eyes. He also had a lump on his forehead. The doctors said that the swelling in the eyes was typical of HSP but the lump on his forehead was puzzling. They did an ultrasound and said that it was fluid filled. They were ready to discharge us but Dylan started talking to the doctor about his headache. She decided that she wanted a CAT scan before discharging. The CAT scan showed fluid in the brain. They called Children's Hospital of Pennsylvania for transport and let us know that he needed to be taken there to be admitted. Neurosurgery was waiting for us when we arrived. They let us know that he had a sinus infection that had broken through the bone and infiltrated his brain. They said they could not wait until the next day to do the surgery and he needed to have it immediately. They did an MRI and another CAT scan. He then went straight into surgery. The neursurgeon made an incision from ear to ear over the top of his head, opened his skull from the area of his forehead, and removed as much of the infection as they could. The infection ate holes in his bone. They performed a craniotomy to remove tissue and used it to reconstruct the damaged bone as much as possible. Once the neuro team was done, the ENT doctor cleared out his sinuses around the nasal cavity and cheeks. The doctors said if this had been caught about 12 hours later, the results would have been catastrophic. He was put in the PICU after surgery.
All of this happened with NO INSURANCE! We are working on getting something in place that will hopefully retroactively pay for this event. In the meantime, we are hoping to raise funds to pay the premiums for that insurance, off set lost wages for his parents who are both off of work to be by his side, and pay for any other out of pocket costs that occur in relation to this horrific event. Once Dylan is discharged, he will need to receive 6 weeks of IV antibiotic therapy and will need to stay near his medical teams until each of them has cleared him. That means that he will be staying in NJ for a while. His mom will be staying with him which means she will continue to be on unpaid time off. If you are able to donate, please do. Please help to make this stressful situation a little less stressful. If you cannot donate, please share Dylan's story anyway.
Dylan is doing better than anticipated. He was moved out of the PICU and onto the surgical floor this afternoon. He is able to get up and walk with assistance and sit in a chair. The swelling in his eyes has reduced and he can open one of his eyes now. He is talkative and funny. He's still not out of the woods but he is definitely making progress. There is a 50% chance that he will need 1-2 more surgeries but we'll cross that bridge if/when we come to it.
Organizer and beneficiary
Melissa Montana Knox
Organizer
Springfield Township, NJ
Amanda Kohlhoff
Beneficiary