Day 562 - Culture Results 🧫, Terrible 😳 GI Office Staff, & Emergency 🆘 Trach Change

Friday, July 15th, 2022

Last night we made it home just in time to suction James. Dad ran back out to grab the antibotic that was called in to the pharmacy while Mom started on nightly trach care. James' sputum culture 🧫 came back positive for the following...

-Moderate Growth Klebsiella oxytoca

-Moderate Growth Stenotrophomonas maltophilia

-Also: Heavy Growth Mixed endogenous microbiota present

These strains are gram-negative, rod-shaped bacterium. James is colonized with Klebsiella, this means that every time he gets a sputum culture this bacteria will be there. We don't necessarily need to treat this bacteria with an antibiotic. However "Steno Malto" is pretty serious and resistant to a lot of antibiotics. It is bacterial species associated with mold. It's an uncommon bacterium and human infection is difficult to treat. 

Mom had scheduled an afternoon appointment with Lapcorp to also get checked for mold infection. While she was out she had to stop by the GI office to see what the hold up was regarding transferring medical records. The two offices sit literally 6 feet from each other but could not communicate. The "new" GI office we were planning to transfer to might have the worst office staff on the planet. One of the girls was absolutely so rude over the phone that Mom decided in that moment that we would not be transferring. Too many red flags! 🚩🚩🚩 Not to mention Google reviews were very telling. Incompetency of not being able to transfer medical records is one thing, but the insolent tone that was taken with a brand new patient was absolutely ridiculous. So while at LabCorp waiting, Mom reached out to every local trach mom she knew and asked them for a GI referral. These moms responded instantly with new names of doctors and the experiences they had. What an amazing network of medical mamas! It's absolutely priceless. 

When Mom got home Dad let her know that James was not doing well. He was having retractions, his respiratory rate was high, and his heart rate was high. We made a call out to the on-call pediatrician. It was almost 8pm. While we waited for the call back James went to sleep and his work of breathing improved, but his heart rate was still high. 

Of course the on-call doctor suggested for us to come to the ER (pretty standard protocol when a parent mentions a high respiratory rate and lung retractions). Mom asked what they would do in the ER for just an increased heart rate. She said they would do some deep suctioning and then asked if there was a nurse at the house that could do some suctioning. Really? 🤦🏻‍♀️ No, we got rid of our nurses because they were a risk to his safety. So no. 😂 There's nothing a nurse could do that we can't do. However we understand that not all parents are very involved. It's hard to believe but it's very true. 🤯

Our main concern was that we just wanted to confirm with the nurse that the reaction was not the antibiotic, Bactrim, so we could continue giving it. Dad was convinced that James was responding to the antibiotic. The doctor was very confident that it was not the antibiotic and said that he would have shown symptoms of a reaction within 1 hour of taking it not 12 hours later. She said that the work of breathing was just the viral infection. She said that if we decided to go to the emergency room that we should call the pediatrician's office back so that way they could give them a heads up we were on the way. We believe that we are able to make good judgment calls when it comes to taking a trip to the ER. Since James is only symptom was a high heart rate we decided to let him continuous sleeping and just watch him closely. 

Just in case Mom did an open suction with a catheter to clear out any secretions that may have been stuck. This is when we disconnect James from the ventilator and his trach is open. Mom puts a single catheter down his trach and suctions. Normally we use an inline suction called a ballard where he does not have to be disconnected but you don't have the ability to move it around. We also did an emergency trach change even though we had just done one 2 days before, which is normally once a week. We did not see anything that would cause alarm, we were just making sure there was not a mucus plug. 

Since we would be keeping a very close eye on him Mom decided it would be best if she continued sleeping downstairs even though this would be a night she would normally get a break. 

P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com