January 12, 2021
December 22, 2020
December 17, 2020
December 15, 2020
As with the last 5 hospitalizations, Azer has been putting on weight again, despite still having stomach pain and no appetite. He has been eating a very small amount at night, and just his G-tube feeds overnight and throughout the morning. The doctors said that the reason he gains weight whenever he's on IV's is because his body isn't working so hard to fight the infection in his lungs. They changed one of his IV antibiotics to a different one to better treat his MSSA. They are avoiding the antibiotic that gave him joint pain last time.
His main pulmonologist has been working hard trying to figure this all out. She feels like the Infectious Disease doctors might be correct in believing that the MSSA he's been culturing is just overgrowing rapidly whenever the IV antibiotics are stopped. The ID doctors feel like treating it long term might be a good idea. Their plan is to treat it orally over several months. His pulmonologist is trying everything first before we have to resort to the port, as putting in a port will limit his opportunities to be athletic and play baseball. Treating the staph over a long period of time could potentially give other bacteria a chance to grow.
The culture from clinic only showed MSSA, but the one they ran from after he was admitted showed possible NTM (non-tuberculosis mycobacterium). It takes weeks to identify what strain of this bacteria might be growing.
The plan is to go home on long term oral antibiotics. If he ends up getting sick yet again, he will be needing a port, and will be treated with IV antibiotics. If he needs to be treated for the NTM, it will depend on what strain he is growing. Some strains can be treated with oral and inhaled antibiotics, others with strong IVs and can take over a year to combat.
The bone age scan came back, and it shows that Azer's growth plates are almost fused. His Endocrinologist said that he needs to stop his growth hormone injections, as he isn't expected to grow much more, and won't benefit from them at this point. It is a little disappointing that he won't be much taller than he is now.
This has all taken a toll on us, both mentally and emotionally. We are all weary from this long year of constant hospitalizations and the worry of needing long term IVs. The good news is he should be home in time for Christmas.
December 7, 2020
December 2, 2020
November 21, 2020
November 10, 2020
It's been about 4 weeks since Azer's surgery. He has been throwing up pretty much with each meal. The GI team said he should make sure everything he eats is basically moist or wet and that he should try to chew longer and take smaller bites.
He has lost 7 lbs since getting discharged from the hospital. His weight loss is due to him not being able to eat as much as he usually does. He also had a braces adjustment where they are correcting for a cross bite, and the elastics are causing a lot of pain, even weeks later. Azer is already off of one of his stomach motility medications. Today they want him to stop one of the antacids he's been taking for a few years. They said the goal is to stop taking most of his GI medications.
About a week ago, Azer started having an increased cough and was coughing up darker mucus, pretty much all day. After increasing treatments, he started to feel a little better. His PFTs were pretty much at his baseline today, and a little higher than when he got discharged from the hospital. The doctor said his lungs sound pretty clear except for a few crackles. They wonder if most of it is draining from his sinuses and think a visit to see ENT might be helpful. In the meantime, they want him to use an anti-inflammation nasal spray before his nasal rinses.