Unfortunetly we are still updating the blog from the lovely city of Baltimore. The only good thing about this town in my opinion is the weather, but that's just me.
Sorry we haven't updated the blog lately but we have had a whirlwind Labor Day Weekend. Things seemed to be going well enough after we checked out of the hospital on Saturday, Robbie was absolutely ecstatic to leave this place and just loved being outside. To see him in his car seat and dancing to the music on the radio just lit us all up with joy. Sunday was even a good day but we could see signs of bad things coming. Robbie had really been struggling to take all his medications orally, usually taking a couple of them but eventually throwing them up and losing all his meds and food and drink. Then on Sunday afternoon, after a great morning down at the Baltimore Grand Prix, we couldn't keep anything in him and he started having tremors. With all the medicine he is on we have a weaning schedule that we have to follow because if we don't he will go through serious withdrawls and could cause some serious consequences if not done properly.
As we were trying to figure out why he was tremoring, we discovered that there was serious mix up in the amount of medicine we were giving him and what he was supposed to getting. We called the Pain Team here at Hopkins and found out that instead of him getting 2.5 mL of Valium three times a day, he was just getting 1.0 mL twice a day. That answered our concerns on if he was withdrawing and we came to the ER.
After eight hours in the ER, they finally were able to get an IV in him and get us back up to Room 660. You would like to think at some point that doctors and nurses would do a better job of listening to the Mom that hasn't left her son's side in seven weeks and maybe just listen to her. Saree told them that they wouldn't be able to get an IV in his arms or hands, but they tried five times. She told them to try the feet, because they had been wrapped up while he was in the traction and that those veins were better. Magically, when they finally tried the foot they got the IV in place, only took seven hours though.
We spent all day Monday getting Robbie caught back up on his Valium through the IV and making sure that he was rehydrated after all the puking. The IV quit working yesterday afternoon so it forced us to speed up the process of putting a NG Tube in so he can get his meds through that. We will go home with the tube in so we can at least give his Valium through that since it is awful tasting and a large amount. We also had to get some sutures removed this morning and we are so glad that we had that done here instead of with our pediatrician. Dr. Gearhart said it would be really simple for anyone to do, but it ended up with Robbie needing a sedative and it still didn't stop his screaming. We like our pediatrician but this might have been a little out of her comfort zone.
We are now just waiting on the Pain Team to finalize his weaning schedule and we will be out of here. Our next post on the blog should be from Mimi's house in New Jersey. Once we get discharged, we are cleaning the McDonald room as quickly as possible and taking our car out of Baltimore as fast as possible.
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