12/9/24

12/8/24

Last summer

Thank you all for your support and prayers . We were traveling out of state for an epilepsy conference for our son in California we are from Indiana . We were admitted to hospital for hypothermia and increased seizures and some breathing difficulties. Turned out he has pseudomonas pneumonia and increased seizures . He has spent a total of 24 days at the hospital. 13 days at one hospital CHOC and was discharged hoping to make a flight home. Unfortunately he had to be readmitted to another hospital CHLA within 7 hrs for hypothermia . Now being treated for infection and respiratory issues . He is having to wear his bipap constantly now . He is on IV antibiotics and respiratory treatments every 4 hours . They are saying if and when we can fly home he will need to wear bipap for flight and oxygen .We have had to reschedule our flights six times so far . At this point I do not know when he will be able to make it home . We haven't worked in over 4 weeks since we are stuck out of town in hospital. Funds will go for monthly bills and expenses since we do not know when we will make it back home .Our son Asaiah is eight has epilepsy LGS spastic quadraplegic Cerebral Pasly he is total care . He loves to be cuddled and held loves Mickey and Elmo . Thanks for your time . If unable to donate we will take prayers for him also for a speedy recovery .Update12/6/24 our sons body temperature dropped again to 91.2 and he is still on the bipap bair hugger and iv antibiotics unsure when we can discharge to get a flight home doesn't look like anytime soon. update 12/7/24 He has currently been hospitalized 18 days unsure if and when we will be able to fly home .Update 12/7/24 his temperature still tends to drop continues on bipap bair hugger off and on and increased respiratory treatments . Unfortunately, the cords and tubes surrounding our son are too short to reach the recliner chair to hold him on my lap , necessitating improvisation to hold him by climbing into his bed to provide comfort . He has transitioned from his home bipap to the hospital's bipap and has been fitted with a new mask. Today, his seizure activity increased, requiring administration of Ativan IV. He experienced discomfort during suctioning by the respiratory therapist since he coughed prompting administration of Tylenol to alleviate his discomfort. We are eagerly awaiting his speedy recovery, but the timeline for his return home remains uncertain. 12/8/24 out son is now on the hospital bipap they are going to do imaging CT scan of the head and possible scope to see if anything else is going on they are missing . He was able to keep his temperature up for past 24 hrs but requires 2 heavy blankets and sheet . 12/9/24 our son is now having pain nasal pathway has a obstruction waiting ENT consult in am . Imaging supposed to be done also . He didn't tolerate sitting up on my lap at a 45 degree angle in bed . His seizures are now increased again requiring emergency IV medicine and Tylenol for pain he remains on IV antibiotics .12-9 24 updat ENT consulted nose inflamed irritated painful remains on 24/7 bipap . Rescue seizure medicine given . Didnt tolerate sitting up in bed only 45 minutes today . Discharge date remains uncertain at this time not sure when we can fly back home . Thankyou for the continued prayers .12/14/24 Update on Asaiah he isn't going to be his baseline for a while . He might be able to go home with bipap 24/7 it seems he needs some added respiratory support . This is an option we are looking into . At least to get to Indiana to get his own doctors and care team . Then his pulmonologist can sprint him down off the bipap . He has been hospitalized too long over 24 days will be at least a month before he has a chance to discharge to make it home . 12/14/24 update Asaiah did well sprinting off bipap for 2 hrs but he has to go back on it for rest of the day . He sat up in a chair on mommy's lap and took a short nap . He remains on bipap 24/7 except for sprinting periods of 2 hours twice a day . Remains on IV antibiotics every 4 hour respiratory treatments. Thanks for continued prayers and support. 12/15/24 update he is tolerating sprinting off bipap for 2 hours twice a day then back on it for 20 hours a day . He had to be stuck for another IV again . This make seven since he was at this hospital not including the other hospital. He seems more agitated today requiring pain medication. 12-18 update still hospitalized Well Asaiah threw a curve ball . Now since he is better medically they are now dealing with increased secretions , seizures and pain . So our hope is we will make it home for Christmas but unsure at this time . Asaiah knows when he is ready to discharge . So after an emergency medicine today hoping he can rest so far he hasn't . We will keep you all posted . The massager helps soothe him and helps with pain . He loves anything that vibrates also ocean sounds . .Thank you for your continues prayers and support we hope he can make it back home to Indiana for Christmas and to his doctors and care team . We have been away from home for 35 days. 12-2024 we discharged took non stop direct flight home he had to get extra loading dose of seizure medicine from the hospital prior to flight rt increase in seizures . He wore his bipap in flighf has a few seizures but finally made it to Indianapolis airport at 7 am . We went to get our vehicle out of paylot and didn't start . So we had it jumped few times wouldn't stay running. I waited in airport while Michael waited for tow truck to get it towed . After 3 hours I called Uber To go home with Asaiah and all our luggage . We are hoping Asaiah can continue to recover at home and not have to go back to hospital . Keep prayers coming he can recover at home .