Rough Weekend for Elias!

Friday was a long day at the hospital. Elias had IVIG and a renal ultrasound. Both routine follow-ups. Now that flu, RSV, and cold season is behind us Dr Mehta, his BMT doctor is wanting to see if we can go longer between infusions, at least through the summer. We will know next month after they do a trough on his IGG level if we can do this. His renal ultrasound was a routine check to evaluate his kidney reflux. We will likely hear something back with a report next week. With each IVIG they always check his blood counts and do a renal panel mostly to check hydration, but it also provides some other valuable information as well. This time GI was particularly interested in BUN which measures the nitrogen in the kidneys. That level provides function information basically. As we updated last week, Elias’ is pretty elevated, probably from one of the medications he had been on. We added 100mL water flush each day in addition to 120mL of pedialyte. His BUN came down from 25 to 23. the high accepted normal is 17. Not happy with the minimal reduction we have increased the pedialyte to 200mL per day. Elias is now getting an extra 300mL of fluid per day in addition to his feeds. The water we can spread through the day by flushing his G-Tube. The pedialyte has to be pushed through the pump because of the large amount. This sadly means more time on the feeding pump which he much be contained in his playpen for and less time out playing and developing. It is also getting difficult to coordinate with his therapy time as the newest med, feed, & fluid schedule has very little shifting room. Hopefully the pedialyte will not be around for very long.

Elias has been having a rough weekend. Again with all the changes and other factors that potentially influence his health day to day we are having a difficult time pinpointing the real issue. IVIG sometimes can give intense headaches as a side effect and we are thinking that was also something he was battling. Times like this we wish he could tell us what is bothering him. We have had to suction him a great deal more than usual and last night the vent was very uncomfortable to him, suggesting there might be some respiratory issue brewing. There has been some improvement today, but he is obviously not on his “A” game. We will continue to hope that he follows this upward trend.

We got a call last week confirming all the participants in the “operating room party” for Elias. We should be getting a date soon on when all that will be, likely next month sometime. This week is likely to be slammed with things going on. In addition to the 6 already scheduled appointments we are expecting at least 2-3 more before the week is out. We also are chasing reports down that are needed to be turned in for Elias’ IEP meeting which is next Tuesday. Lots of time on the phone! We also have an exit assessment and some transition meetings that have to be scheduled in the next 2 weeks before Elias turns three. Even though we have tried to be pro-active on much of this stuff, the way many of these systems work force things into a last minute priority event. It is crazy how back-logged some of these processes are. Thanks for checking in and we will update when we can this week.