Elias continues to have emecis issues. He has had overnight episodes the last several nights, and when we arrived at the pediatric specialty clinic for our genetics appointment yesterday, he had a large episode. We also suctioned yellow secretions out of his trach, which is a potential sign of infection. Since we were there, they tried to get his pulmonologist to come up to see him, but she was unable. We ended up going to see his pediatrician in the afternoon. Elias' day was less than wonderful and ours was spent running from appointment to appointment to pharmacy.
His genetics appointment was fine for Elias, until the end when they tried to draw blood for more testing. They made several attempts and were unsuccessful. All we had to show for our efforts were Elias and his band-aid covered feet and ankles. Unfortunately, we will have to go to a lab and attempt this again in the very near future. As for the outcome of the pending genetics test we were anticipating, we are working on a separate update for that because it gets a little in-depth. We will say it is nothing horrible, it just requires more than a simple explanation. We are actually still doing a little research to piece everything together for everyone to understand. It is interesting, and just like a good novel has twist and turns that leave you wanting more. In our case, and for the benefit of our extended family, needing more. Look for that later tonight or tomorrow.
The genetics appointment took several hours and was a little longer than we expected, so we had little time before our appointment at home with the Infant and Toddlers representatives to go over and sign our Individual Family Service Plan. We had a limited window to finish with that as we had to get Elias to the Pediatrician. They were good about pushing through everything as we told them up front about our time crunch. We were practically pushing the Infants and Toddlers folks out the door, but it was imperative we get Elias seen.
His pediatrician is still learning Elias and was a little uncertain on how he wanted to approach this issue. One thing we knew is that this emecis issue is getting a little out of hand and needs attention. We ultimately decided to put him on the Prednisolone, which is a steroid, again. This is the second course in a month for Elias so we limited it to three days. He also gave him Augmentin, which is an antibiotic mixture. We are hoping it is a bacterial issue causing the emecis problems, but if it still is not clearing up after these medicine courses are complete, we may need to consider alternative measures. This was not exactly expanded upon, but more aggressive nebulizing treatments were mentioned. While Elias was there he was due for 3 vaccines, so of course Elias got stuck 3 more times. He was not very happy about that. So it was not the kind of day we had envisioned for Elias, and one I'm sure he could do without.
Today, Elias had his first home physical therapy session, and despite feeling a little on the down side he did rather well. He has slept off and on most of the day. Poor little guy is tired and not feeling all that well. We are not seeing much improvement yet, and he did have emecis overnight. His secretion volume is still high and very thick. We have pulled a few mucus plugs today, which are always scary because they can completely occlude Elias airway. Thankfully, we are able to break them up and suction them out of the trach. Hopefully, now that the medicines have been in his system for 24 hours, we will begin to see some improvement. One can certainly hope.