United Brachial Plexus Network, Inc.

Haven't been on here in a while...Hope everyone is doing well. I heard back from TCH last week....After all this time of Kyle doing so well in his recovery, we will now be heading for surgery in February. He will be having the mod quad Feb. 12th. I have so many questions I don't know where to start. I have read Francine's site numerous times over the years, so I am familiar with the whole process. But can anyone explain exactly how to go about getting free air line tickets. What about a hotel room? After the surgery will I need one or can we stay in Kyle's room with him? Kyle will be 4 yrs old next week....will I need a stroller and car seat for him for after the surgery? I will be flying by myself so I'm trying to get away with bringing just the bare essentials. I have many more questions, but I'll start with those for now. Any help would be appreciated. I'm not sure I'm ready for all of this. Best wishes to all of those going in for surgery this week. Maia you will be in our thoughts and prayers. Take care.
Karrie McDermott & Kyle

Francine's site is really great for info. She has all of the phone numbers to airlines posted, along with the programs. After the surgery one of the parents had to be in the room. My husband and I went down together so we decided to keep our room the entire stay so we could get away for a while if we needed to. The new rooms are really nice (I never saw the old ones), there's a private bathroom and plenty of room. I found the room chilly you may want to bring a blanket.I'm not sure about the car seat at all. Hope this helps some.
Cindy

Louise hit the nail on the head with the umbrella stroller, backpack and hip purse. And while there is plenty of room to stay at the hospital and not keep your room it is iffy about not keeping a room for the dates in the hospital.

If cencus is high you may end up in the "recovery" (pacu) for a while. Also, you would have to take everything to the hospital with you and drag it around into recovery and such. SInce you are going alone you will obviously need to take some stuff with you as it is. And you will need to make arrangements for meals until he is ready to leave the room with you. You are able to take them with you to go eat in the cafeteria (or the other food places) once they are up to being around (normally by the next day for the little ones, not sure about a 4 year old as the older ones seem to take it a little harder than the babies).

Start the process of getting tickets now, there is usually a lot of faxing or mailing back and forth. It is well worth the effort if you need assistance with the tickets. We didn't use this for the first two but really needed it with the last one.

The mod quad is an "easy" surgery in comparison to the primary. You will be there for the day of surgery, get splinted the next day and then sometime the next morning you will demonstrate that you can remove the splint and put it back on, change bandages. If you will be filling the prescriptions at the hospital (there are not really any other places if you aren't renting a car) tell the nurse first thing the morning of discharge and then hunt them down to let them know when the Dr. has been around and written the orders. We ended up being there late the afternoon of discharge because of this process.

We have always stayed at the Crowne and gotten a fridge and m/wave in the room. There is a restaraunt inside and they try to accomodate the kids nicely, but the choices are somewhat limited. We never had a problem crossing the street (and it was even easier now that the rooms have been moved over the west tower) but even so you only have to walk down about a block, cross over and then come back up. The best rate going on right now is the Best Western and the Holiday Inn. While you have to cross another street it is not difficult.

Take shirts that are larger than normal wear. Sorry this has been so long. Feel free to email me if you want to ask more. I know this is frightening but you will see such improvement after the recovery starts.

Best of luck

christy, Kim & katie

Hi Karrie! All the advice you have received here seems to be heading you in the right direction. I just wanted to add one thing that helped us. We have always stayed at the Crowne Plaza. They have a closet called the "Bell Closet" right behind the Bell Stand. (Bell as in "Bell Boy.") We checked out of the hotel the morning of surgery and asked to keep our suitcases in the Bell Closet so we didnt have to drag them around the holding room and recovery room etc... Then once we were settled in the hospital room we took care of the suitcases. Joey got discharged the day after the surgery so we actually ended up going back to the Crowne Plaza for that night so it would have been even easier to have just left our bags there... The nurses seemed suprised that he was being discharged the day after surgery but honestly he was fine and ready to get out of there and it gives us a change to get a good night sleep in the hotel without all the through the night type hospital disruptions. Either way I wanted to let you know about the Bell closet option for your suitcases. We typically took the Express Shuttle from the airport to the hotel. Its a van that goes from the airport to various hotels. Its about half and then some the cost of a taxi although a taxi is more convenient. Try to relax and take it one day at a time. It will be here and over with before you know it. Take care and God bless. love, Joann