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Hi friends, a few people have asked if they could directly donate, I attached my Venmo (the last part of my phone number is 1147) if that option aligns with you better. Thank you again so much. It truly takes a village!
Update 2/2: Talon is off IV nutrition and feeding tube. He had a full day on Breastmilk and one solid feed. His vomiting seems to be at bay with the new reflux medicine. So hopefully he weight will begin to reflect that. His skin is responding to dermatology’s treatment. His stomach is still an issue along with his bowel. So we take the next steps to see how to help him. It seemed like his pain was much lower than days past, which puts my mom heart at ease. For now we wait, watch, and hope the little guys holds onto some weight!
Update 1/31: Talon started IV nutrition. The Dr.’s wanted to do an NG but after his ph study came back they decided to change his reflux medicine to a PPI since it shows he has severe GERD. His study showed over 100 episodes in 24 hrs. We will go the next few days on IV nutrition intervention, along with as much Breastmilk that he can tolerate to hopefully get his weight in a gaining momentum. If his tolerance for the Breastmilk is low, GI recommends adding a thickener (think cornstarch). If the less invasive interventions do not work then they want to drop an ND line (this is not something we can go home on) for what could be a couple weeks. This is all happening while we wait for his full genome testing to come back sometime this week.
Update 1/29: Today we start back at square one, but with a novel of more data. Allergy is officially ruled out. Bio genetics is running every genetic test under the sun, we should have results within two weeks. Talon is officially switched back to Breastmilk. Today we observe him and decide if we change his reflux medicine. Talon is continuing to loss weight, so we are creeping closer to having to cross the uncomfortable bridge of an NG tube. Talon was in the most pain I’ve witnessed when he had a ph line, so I’m advocating to take every step before placing an NG tube. However, we are getting to a point where his safety is going to depend on it.
Update: 1/26. Talon had his procedure and ph line placed. His lower GI looks good, but waiting for biopsy to return. Being referred to neuro, having derm circle back, and an NG tub is going to be placed potentially this week to help with growth.
Update 1/23: Talon has been officially diagnosed as mildly malnourished. He lost 60 grams from just yesterday, since 12/25 he has lost 6% of his body weight. He was admitted with a weight of 6.58kg and has dropped to 6.39 kg.They have increased his calories per ounce. But in doing so his input is only getting potentially 60% of his daily caloric needs to grow. Not accounting for the chronic vomiting.
Hoping we find a positive direction soon. But for now we sit and observe until his procedure on Monday.
Hi friends, my youngest, Talon, 7 months old, is currently in the hospital with faltering growth (Talon has not gained weight since he was 4 months old), chronic vomiting, and 3 different skin issues (2 of which have resolved with the help of the dermatology team). We have been in the hospital for 9 days and have undergone a few procedures, diet changes, and labs. Nothing is leading to answers. Talon’s weight is remaining to drop slowly or plateau at the lower weight.
I'm extending my online reach to help financially as the hospital stay has been substantially longer than expected and currently has no discharge date, leaving David and me with no income and having burnt up all our leave from past appointments, hospital stays we have already undergone the past month trying to get answers, and the maternity/paternity leave when having Talon. Unfortunately since David and I are postal employees, we do not meet the criteria for the state or federal paid family leave act. The post office is a gray area to both fields, not state but not fully federal. The only financial resource we have is the leave we earn and after that receive leave without pay.
Talon’s next procedure is on Monday, 1/26, to scope and collect more biopsies while placing a pH line to hopefully guide us to a diagnosis and treatment plan. Until then, we will be staying in the hospital for observation, more imaging and labs.
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