Jacob would love to wish one of the best nurses in the world a happy birthday...
HAPPY BIRTHDAY, NURSE HEIDI!!! J
WE ARE HOMMMMMMMEEEEEEEEE!
Jacob did exactly what we needed him to do last night, and let me tell you: this is the ONLY time we root for him to have a seizure! We were not able to give the Diastat (emergency seizure med) for a variety of reasons, and we now know that his seizure will stop by itself in approx. 16 minutes. Good to know, crappy to watch. That is really not THAT much longer than actually administering the Diastat, as it was starting to not be as effective on him from so much weekly use...
I was also able to review episodes from when I was sleeping on Monday night/Tuesday early A.M. and I could definitely confirm that we had captured some of his new activity on the EEG. It is in fact seizure activity, as well. I am so glad that I was able to review it, as I really was hesitant to leave before I KNEW 100% that they saw what we were seeing at home. Because this happened so quickly, my assumption that we would not be discharged today was wrong. I am very happy to have been wrong J
The mix of Phenobarb/Felbamate is still the "solution" of choice. However, we actually have a weaning schedule for the Phenobarb (!) In some cases, the Phenobarb causes the Felbamate to metabolize quicker, not allowing the Felbamate to rise to a desired level in the child's body. So, we might actually get off of the Phenobarb (!) and get better seizure control. We shall see... I forgot to mention when I originally posted this, that Jacob's Felbamate level is in the 50's and they like it to be about 200!!! This is good, as far as I can tell, because we have a long way to go yet before we give up on the Felbamate. Hopefully decreasing the Phenobarb will allow the Felbamate to work better J
We are also not going to administer the Diastat as quickly anymore. Dr. Gordon (Special Needs dr.) said that he knows it will be VERY difficult for me not to administer it, but to do the best that I can (this is not his idea.) We are to administer the Diastat after 15-20 minutes of his "normal" seizure activity if it is not stopping by itself. We are also to administer it after 5 minutes of constant tensing, called tonic seizures. He has never "held it" for 5 minutes. The third situation that we are to administer it in, which he also has never done, is if he has tonic clonic seizures where he would be jerking continuously for 5 minutes. (That is much like you would see in an older child/adult that falls to the ground and convulses during a seizure.) As much as I do not like to NOT give the Diastat immediately, it was not kicking in immediately anymore and hopefully this will wean his tolerance of it so when we DO use it, is more effective, we know his sats are unaffected, and we now know that he WILL come out of it by himself. So... we feel somewhat-mostly comfortable with the new orders.
Dr. Beste's NP came up yesterday and took a peek in Jacob's ears. She saw no blood... just wax now (yay!) She said that Dr. Beste wanted to come up and see Jacob, too. He was not able to make it last night and we paged his nurse this A.M. to let her know that we actually WOULD be leaving today. She paged Dr. Beste in the OR and he CAME RIGHT UP!!! I have got to say that this guy is ALWAYSSSSSSS there when we need him. He is a wonderful representation of the hospital (even though he is "technically" private practice.) He was our 1st dr. at CHW and he will certainly be in our lives for MANY years to come... and we couldn't be more grateful. (Oh, yeah~ he said the ears could absolutely wait until our Sept. 26th OR date to be sucked out again.)
We got to be under the careful supervision of Nurse Bri today! Our first two days, we had Nurse Rachel, and today, Nurse Bri. It was so wonderful to not have to even question anything or explain anything! Not that I mind that much, but as far as checking meds, feeds, little things that you do for your child that nobody thinks about, I didn't have to wonder about anything. When we got there on Monday, Nurse Danielle was in charge of the floor and she had most of our stuff all ready to go already so we got to bypass a lot of stuff upon admission. Nurse Heidi started in the PICU this week and somehow she was able to come up and visit us!!! We are just so lucky to have these girls, along with all of the other wonderful nurses that we get to see when we are there.
As usual, Dr. Gordon was a huge help in anything that I needed/wanted done. He loves to joke around with me and test my limits (!) He heard me telling Rachel yesterday that I only had 1 pair of underwear left and that I'd have to get more stuff if we stayed past today... So, today when I looked happy that we could "escape" the hospital, he calmly said: "You only have 1 pair of underwear left, remember?" During rounds I told him that he had better not tell everyone why we were going home so he told them all that I had some PERSONAL ISSUES and needed to leave!!! It is nice to be able to have a good relationship with Jacob's drs. Things can be so absolutely INTENSE at times and it is a nice balance to joke around a bit, too.
Well, I have a lot of unpacking to do. I always say that it doesn't matter if you are an inpatient for 1 day or 100 days, you always come home with SO MUCH STUFF!!!
Lots of love from Team Schultz
P.S.~ We are planning on doing the Briggs & Al's Run/Walk for CHW on SATURDAY, SEPTEMBER 20th. I haven't had time to get our run/walk site set up yet, but plz save the date if you would like to join us!!!
