Inpatient #3

Kaleb has been admitted to the hospital three times in the past four months. I've always felt so "lucky" that Kaleb has been relatively healthy compared to other Trisomy or T9 kiddos. Unfortunately, Kaleb's medical conditions are just harder to understand I guess. He has really been testing the doctors at the hospital and his own specialists. It's odd to see doctors scratch their heads and literally tell you, "I don't know". Doctors are supposed to know everything, right? Right!

Here's a look at Kaleb's hospitalizations...
Taken to ER for swelling in both of his legs and high fever (104ish).
Labs were completed and it was found that Kaleb was severely anemic and had inflammation in his soft tissues
A bacterial infection was found however could not be located or determined which bacteria
The source of Kaleb's bleeding (anemic...losing blood from somewhere) could not be located.
Inpatient for 6 days
During this time it was found that Kaleb's bone marrow was not making enough red blood cells to keep up with the "blood loss"
Kaleb received his first blood transfusion

Taken to pediatrician for 5ish days of vomiting and diarrhea and told to go to ER
Went to ER, labs were done and found that Kaleb was severely dehydrated
Kaleb had lost around a pound and a half
Kaleb was inpatient for 5 days
CBC came back normal, no anemia or other blood concerns

Taken to ER due to fever, swollen legs, and red-hot areas on legs
Labs were done and Kaleb was found to be anemic again
Kaleb's white blood cells, hemaglobin, hematocrit, and platelets were also ALL LOW (weird!!!)
Kaleb was moved after a day to hemtology/oncology floor due to concerns of Leukemia
Kaleb's bone marrow is not functioning properly again
WBC's don't look right
Bone marrow aspiration and biopsy completed, does not appear to be Leukemia
Doctors are completely stumped however promised me to continue care and find an answer

After these hospital stays I'm worn out, confused, sad, worried, and hopeful that an answer will be found. Kaleb's blood counts are all over the place on a day to day basis. When his blood counts go up or down every day, they go up by a lot or down by a lot. No in between. We will be following up with Kaleb's hematologist (an amazing man!) monthly, and will continue to get results from the biopsy, aspiration, and blood work throughout the next couple of months. Kaleb has stumped all of his doctors along with the pathologists that are trying to come up with results. These are the people that should know the answers, this makes me feel like I have even less control because how can I help my baby if they can't even help him?

I'm looking forward to some answers and ways to treat whatever is going on. For now Kaleb has an unknown blood disorder and I'm hoping that it's not something that can really hurt him or that needs to be treated immediately, like most blood disorders.

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