I am completely overwhelmed with gratitude for your prayers and support. I'm so sorry I didn't see this earlier but I haven't been able to figure out how to get the pg.org app on my phone.
Coming home was actually difficult. Eli seems to have a severe reaction to whatever they serilize everything in the hospital so even the paper they lay him on in the OR causes a rash and his reaction seems to get worse with every procedure he has. In the past it was just a rash. No itch, no pain, no discomfort, etc. Back when he has his multi-day VEEG it got ichy and painful. This time was WAY worse. It hurt, burned, itched, etc. VERY BADLY. When they took out his IV he broke out on his wrist and was in pain when we left. He also was having problems sitting upright. So driving home was very hard. Luckily he slept for some of the time, but it took us 1 1/2 hours and he slept for about 50 minutes. Otherwise we would have turned around and went back and made them help us come up with a plan for physically getting him home. It was so bad (and I know this was bad but I don't feel like I had a choice) we took him out of the carseat the moment we hit our housing development. One of the biggest issues we have is his big brother not understanding that he cannot rough house yet. So yesterday he hit him in the neck by his incision and tripped him both of course which hurt and caused swelling. Not enough to be seen, but enough to cause enough pain he was willing to take his pain meds without incident (he HATES medicine and it's VERY difficult to get in him), so you know he was hurting. And because walking around is less painful than sitting he overdoes it and things become painful. We are taking him to the pedi today to hopefully get something for his rash (the itch part). They gave us Benadryl for which I told them it does NOTHING to help, but as always they didn't listen so we are going to get something to help. And hopefully get in with a good allergist that will help us pinpoint what is the cause so we can plan accordingly in the future.
The other thing that was frustrating coming home, (and because I cannot post this anywhere else as certain family will see so I'm posting it here where they won't) is that my house had way too many people in it. My uncle who was here and was suppose to help Dakota with his homework and bath him and Faith basically did the job of a 12 year old and did nothing so I had to do homework with Dakota and basically everything else after we got home. Also my parents were here. And while I love my parents and they have been a huge help in the past, they are just at an age where they need the same level of care as Dakota so it feels like I have 2 extra children. My dad can barely walk whether it's his legs or his breathing he cannot walk far. He also cannot get himself dressed so seriously having them them here just compounded everything. My uncle also made some very poor comments regarding our choices, feelings, and situations that happened not only in the hospital but Eli's reaction to the pain. Things like "he needs to toughen up, it can't hurt that bad". SERIOUSLY?!? Ugh anyway sorry, I needed to vent about that as I haven't been able to anywhere else.
Again thank you for your prayers and support. Now on to recovery.
Angela, glad to hear that Eli is up and about. Prayers for speedy healing.
As for your family, is it possible to send them home? It's just like after you have a baby, you need time to adjust and not take care of anyone else but your kids and yourself.
Visit his CaringBridge
Joseph stillborn 01/08/2007
...ssshhh FB and whole world secret
I agree with Janel. I'd try using some tact (first) -- such as "Thank you all so very much for being here to help out and support us through these past several days (weeks -- however long they have been parked in your living room.) You are all incredible blessings to us. Now we know you all need to get back home and to your own obligations, and we need to try to get settled on our own and within our own routine and give all the kids some sense of normalcy. Thank you again for coming! It is great that we have been able to count on you."
If that doesn't work: "Eli's doctors have recommended that we lower his stimuli -- including the number of people he's around at this time to just our immediate family. I hope you understand and know how grateful we are to have had you here. Thanks so much. Let me know if I can help with packing." (ok -- maybe leave off the last. LOL)
or.... "The doctors want Eli to be able to be naked at home to help the rash settle. He isn't comfortable doing so around all of you which I'm certain you understand. We appreciate all your help but for now, need to give Eli some space. I'll call you at home (daily / weekly) to let you know of his progress! Love ya!"
or -- "Hey - Thanks for the help. RIght now, we need to be alone as a family. I'll give you a call and let you know how things are going."
I didn't see this until today -- thinking of you and your family I hope sweet Eli has relief from the pain and rash ASAP and is on the road to recovery!
Evan 12/10/09 9lbs 5 and 1/4 oz 21.5"
Rory 12/2/11 10lbs 12oz and 23"
Just seeing this now! Hope Eli is ok.
Me - Kristi, 29
DD - Leia, July 5 2008
I luurrrrrve to lurk!