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Our 4 month old babyboy has been put on hospice care.
We don’t know how much time we have left with our sweet James so I will be out of work until further notice and Josh will be working a lot less than he normally would, plus going to school. We want to spend as much time our sweet boy as we possibly can.
My son James was 8 weeks old when this all started. He was born at 32 weeks of gestation. At just 7 weeks old, he was admitted to the John Hopkins PICU, hospitalized, to get treatment for a brain infection along with hydrocephalus which was caused by the infection within the brain. Hydrocephalus is a build-up of fluid in the ventricles within the brain. James has had a brain procedure to place two shunts into his brain, one to each ventricle to drain the fluid, which should help relieve the pressure off the brain and relieve some of the pain he has been feeling. Along with the fluid build-up, they found an infection in James’ brain as well. The MRI showed other multiple abscesses throughout his brain which indicated an infection. The infection they found is rare and very serious, especially in the brain of a premature baby. Today we found out the exact bacteria that it is and he will be getting antibiotics through an IV for the next 4 weeks or so to treat the infection. We are hoping that the antibiotics alone will treat (and hopefully get rid of) the other abscesses throughout his brain, as they are smaller than the two main large ones that are currently being drained from the ventricles. Only time will tell how well the antibiotics will work towards the other abscesses but we’re hoping for a good outcome for our little man. James will have to undergo multiple surgeries due to his condition. He has had a second brain procedure done already to replace one of the shunts because one was not working as effectively as we’d hoped. We are going to have to be very patient during this whole process and it has been very hard to see our baby go through all of this. He has been fighting ever since he was brought into this world and I know he’ll keep fighting. He is so loved and I believe he can get through anything that comes his way. Thank you all for your kind thoughts and prayers for our sweet boy. Please continue to keep James in your thoughts and prayers as our precious boy still has many surgeries ahead of him and a lot of hospital living. This is something that is known to be extremely rare, so I can’t even begin to try to understand why it’s happening to my sweet boy. We’re hoping and praying for good news in the days to come. I know my boy is going to be strong through all of this and keep fighting Patience is key but I know our boys got this.. he’s our little warrior.
- We will have to stay at Johns Hopkins Hospital for quite awhile with our babyboy.. at least for another 4 weeks because he has to be put on long term IV antibiotics for the infection in his brain that will hopefully work. Along with having to stay here to possibly have more surgeries on his brain. This is something we’re going to have to take one day at a time. We appreciate any help anyone is willing to give, even if it’s just keeping our sweet boy in your thoughts and prayers. Thank you so much in advance to everyone supporting us in this tough, long journey. My family and I are so appreciative of you all.
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