Update 4/30/16. Finally have confirmation so I may post. Daniel and the rest of the family are dealing with illnesses from black toxic mold Stachybotrys chartarum: The Toxic Indoor Mold. The family is staying in a motel until remidiation is totally complete and another air quality test perfomed to ensure it is safe to return.
Daniel and I will be staying in the hospital. Daniel is suffering the worse. He is down to 116 pounds cannit eat or drink. He is on IV nutrients. Still very very ill. The nihl is looking at Daniels case and as soon as they tell us we are going to Maryland as in patient to get Daniel better. We are looking to get out asap. Daniel refuses to go back the place. We all do. We will be trashing all belongings and starting over fresh as with the toxic mold is airborne so everything must go.
All of this could have been prevented if the tenants above us didnt have an illegal washing machine and management took care if it years ago when we first reported it. In the years they kept flooding our bathroom. This past November we noticed mold growing. Still nothing done until Infectious Diesease contacted the health dept on our behalf.
Daniels dad is out on family leave and not getting paid. He needs to be with the kids before and after school for the bus.
The infectious disease team is testing our whole family on Monday full work up to tie all our illnesses that we been suffering with since January when Daniel first got sick. Jessica and Matt asthma and Jrs. Hashimotos disease and swelled nodes.
Please keep our family in your prayers.
They removed a wedge of his lung and 3 nodes. He has a chest tube to help drain his lung and keep it inflated. He is on oxygen to help him breathe easier. This heartbreaking seeing my baby like this. I pray no other child has to go through what he has endured thd past 3 months. He is my hero! Please keep the prayers coming. A long road ahead.
Update 4/21/16. Today has been a very emotional and hard day. I am asking fir some major prayers for Daniel. Daniel is having major surgery tomorrow. OPEN WEDGE LUNG REMOVAL. They did everything they could to avoid this surgery but he js not getting better. This is the last option. Please pray and again at 12 tomorrow. Pray for the surgeon steady hands and he protects my baby.
Took my other two kids to the doctor today. Jessica has asthma. She is going to an allergist to determine if it is mold related. My son Christopher was diagnosed with Hashimotos Disease last month. Also could be from mold. Today he found a lump under his arm. Going to be tested. All of these could be result from the mold. Testing is being done to confirm. Daniel, Jessica and Christopher all became sick at the same time. It is no coincidence. We have all been dealing with health issues the past 3 months. My only son who stays most of the time at his girlfriends place is not sick at all. The rest of us are.
I am so pissed off right now. There is going to be major lawsuit going on. Daniel and my family do not deserve the total lack of responsibility that the management is giving us. Please pray for all of us.
very bad night last night. All the lights buzzers and announcements were for Daniel. I was so scared when they all came running in room. His heart rate dropped to 39's. They beleive it was the new antifungal mycafungal they added that dropped his heart rate. Its running 43 right now still very low but stable. Please keep Daniel Applegate in your prayers. I know I keep saying that but I beleive in prayer and God hears everyone. As of now they just want immediate family to visit.
Update 4/14/16. Daniel's igg levels at 0 again. He is getting an IVIG fusion this afternoon for 12 hours. Tomorrow the adult surgeons are performing the bronchial scope tomorrow to remove nodes in his lungs and chest around the heart. Also taking a piece if his lung out where the lesions are. It is scheduled for 830 am. So say a prayer at that time for Daniel and for the surgeons to get what they need this time and everything goes smoothly with no complications.
Update 4/11/16. Daniel has been admitted back in the hospital. His left lung a lot worse. He is having surgery. It is called a open lung biopsy. This is the surgery that will take a few hours they were trying the less evasive procedures first. Please keep Daniel in your prayers. He is going through so much that no little boy should have to.
The blood work they took this morning was sent to the Mayo Clinic. Looking at his T Cells. He has plenty but they want to make sure they are working properly. They know there is an underlying condition causing this. Just not sure what. Until they find out he will remain in the hospital. Could be 4 to 6 weeks for results. He needs to be here and watched closely. So please keep Daniel and our family in your prayers. Daniel is not happy about it. Since he is not eating good he will remain on IV.
Update 3/30/16 Daniel is back in the hospital. We were home for 10 days trying the oral anti viral meds. $579.14 down the drain. The meds did not help. He is worse then he was before the hamat. doctor said. He needs IV anti virals to kick the aspergilliosis fungus out if his lungs. His IGG levels are still very low. He will be getting a infusion tonight at 11pm. Please pray no reaction occurs. They will be administering over 12 hours and pre medicating him. Pic line is scheduled for Friday. So we are looking at next Weds to be released and start IV treatments and IVIG treatments at home. Please keep Daniel and the family in your prayers. Thank you for all the support.
3/20/16Update on Daniel. He has been home a few days now. Running a low grade temp, dizzy and nausea. But to be expected on the antifungal meds he is on.They are very strong. If his temp goes above 101 we are to return. So far it hasn't. Thank you for your prayers and support. It really means a lot to us.
Update 3/17/16. We are all exhausted. Daniel came home tonight. He will be having a home healthcare nurse every two weeks to administer his meds. Daniel was so depressed being in the hospital for just about two weeks. So we paid for all scripts totaling just over $1,100.00 so he could be treated at home. We still must go back and forth weekly to his hemat. doctor and every two weeks to the infectious and pulmonary doctors. He will be anti fungal meds for another 3 weeks.
In two weeks he will be starting his IVIG treatments 12 hours intravenously at home. He has no immunity at all. A simple cold is very dangerous for him. If he should get a fever above 101 we must go straight back to the hospital.
Daniel is on homebound the rest of the year. Please stay away if you are sick even a little sniffle. It could Daniel into the hospital with another infection.
I will up date more later.
Thank you for all you help and support. We really appreciate all of you.
This fund has been set up to help with medical and everyday expenses for our family. Daniel's dad was on unpaid family leave to be with him during this time. Daniel was in ICU at Robert Wood Johnson Childrens Hospital in critical care May 16 to May 22nd fighting this rare disease Evans Syndrome. This is the 4th time Daniel has been hospitalized for 8 or more days at a time. We have incurred alot of medical expenses for these stays. We never know when his counts will drop and will need to be admitted. This rare disease is so unpredictable. This last stay we almost lost Daniel to this disease and each relapse has just been getting more severe. The meds that used to work did not work this time and he had to have 9 blood tranfusions and chemotherapy to stabilize him. He is home but his RBC still continue to break down, we go weekly for treatments and counts. If his Retic goes up anymore he will have another 4 rounds of chemo. Please keep Daniel in your prayers and thank you all for your generous donations and support.