Trying to hold it together

[Beckymk]

Right now that's another concern. I know someone will need to be with her 24/7 and I don't think I'll have much respite. Dh will be coming along, but as much as I love him, he is not an advocate and dislikes going against "the man." I.E. if she needs pain meds, he'll sit there and tell Paula to wait til the nurse comes and not go in search of one. He's said we won't need to keep track of the pain meds b/c it will be in her chart and the nurses will check.

Take care,
Marian

You and me both. Although with the pain meds, at least in the beginning, they might have her on a pump -- sorry forgot the technical name. It's just a matter of pressing a button, at least that was my understanding.

I'm going solo on this one for the hospital. My DH will be working all week, my mom will be with the boys -- so it will be me at the hospital. I really don't mind though at least during the surgery part...I already know I'm going to be witchy (or maybe that's just me right now since it's coming up soon & I'm trying to cram everything in -- although with *probably* PMS. ). I just know in my head I will do better alone.

I'm trying to figure out when the kids are up for visitors...I'm not sure if it's ever while they are in the hospital. It seems like such a very short time before you are released.

[smileyskl]

Katelyn was on the morphine pump for the first 3 days but she was also given a prescription type Motrin-Toradol or something like that and also antibiotics so you still have to watch. She was ready for some visitors at three days but she still slept a good bit on and off. We just made the visits short and she did fine. The time really does fly. My laptop was a lifesaver when she was sleeping. Everyone is different of course but thats how things were for us. Hang in there, it will be over before you know it.

Sharon

[Snoopy]

Right now that's another concern. I know someone will need to be with her 24/7 and I don't think I'll have much respite. Dh will be coming along, but as much as I love him, he is not an advocate and dislikes going against "the man." I.E. if she needs pain meds, he'll sit there and tell Paula to wait til the nurse comes and not go in search of one. He's said we won't need to keep track of the pain meds b/c it will be in her chart and the nurses will check.

So, I'm trying to rest as much as I can now b/c I think all I'll get is bathroom breaks. That is weighing on me.


I have seen the suggestions that you and others have made. I am adding things to my notebook as I go along. Hopefully, I'll remember to take it with me.

I think I will leave War and Peace home this time. I promised Paula that I would read the Lord of the Rings, so I'll be bringing some of those books along.

Husbands--we love them, but they can drive us crazy sometimes! You might be surprised. Once he sees his daughter in recovery, he might change his mind about waiting for a nurse to bring pain medsand also become more hands-on. I hope so because you CANNOT wait for the nurse to bring pain meds! You have to write down exactly what medication she is given, what time it was given, what it was for and also when she can have it again. For a little while after the IV meds are gone, you'll need to request pain meds as directed until you see how she tolerates the pain. You do not want the pain to get ahead of her.

My husband doesn't do well with medical stuff. But he was fantastic with Jamie in the hospital and at home. He wouldn't log roll her (I think he was afraid of hurting her), but he was always ready to get her drinks, adjust her pillow, etc. Every little bit helps.

Make sure you take bottled water and snacks with you to the hospital. As much as you won't want to leave, you need to get out of the hospital room. Go to the cafeteria or simply go outside for some fresh air. You'll need to keep your sanity.

Hang in there.

Mary Lou

[Snoopy]

I'm going solo on this one for the hospital. My DH will be working all week, my mom will be with the boys -- so it will be me at the hospital. I really don't mind though at least during the surgery part...I already know I'm going to be witchy. I just know in my head I will do better alone.

I'm trying to figure out when the kids are up for visitors...I'm not sure if it's ever while they are in the hospital. It seems like such a very short time before you are released.

I understand being at the hospital alone. My husband doesn't do well with hospital so I sent him to work the day of surgery. Bless his heart, he called me every hour to make sure Jamie and I were both okay. This was no easy task for him. He is a truck driver and doesn't have a cell phone, which meant he was searching constantly for a phone. My mom was with me the whole time and I appreciated it, but she drove me crazy! We both packed breakfast and lunch, but the smell of food made me sick to my stomach. Mom kept insisting that I eat. She was just as nervous as I was, and I just wanted to sit quietly, but she talked constantly. My sister-in-law stopped by unannounced and that was a blessing. She simply hugged me and sat with me. She got me something to settle my stomach.

As far as bringing the boys to visit, that would depend on how old they are. Are they able to deal with all the tubes? My dad brought my then 11 y.o. daughter, Tracy, to the hospital as soon as Jamie was in recovery. I needed to see her because I know she was worried about Jamie and I needed to make sure she was okay. My parents stayed with her while I was in recovery with Jamie. I'm glad Tracy was there, but I also was very upset about something that happened. My husband, mom, dad and Tracy were all waiting outside the Intermediate Unit and came rushing into Jamie's room before I got a chance to talk to them. Jamie did not look like herself and had tubes sticking out of her that we didn't expect. Both my husband and Tracy had to leave the room. I was torn--I needed to be with Jamie, but I needed to be with Jeff and Tracy. Although I reassured Tracy that Jamie was okay and it would be better tomorrow, she was still shook up. It tore my heart out to send her home with my parents.

Tracy came to the hospital every day. She was okay the day after surgery when Jamie was in a regular room and looked more like herself. Although the hospital stay is short, your other kids will need you. Jamie was in the hospital for six days and I only left the hospital twice. Both times was to go home and spend time with Tracy. She assured me it was okay that she stayed with her dad and my parents, but she really did need me too.

Mary Lou

[Pooka1]

I'm trying to figure out when the kids are up for visitors...I'm not sure if it's ever while they are in the hospital. It seems like such a very short time before you are released.

My daughter's twin waited with my husband and me through the surgery and was able to see her in the ICU afterwards. She visited every day her sister was in the hospital.

These visits were extremely important for both girls.

[Beckymk]

I will start a new thread regarding visitors. I feel like I have hijacked the OP's one. Sorry.

[pmsmom]

Marian--

I've been out of town for the last week and just read your news. I'm sorry fusion is necessary, and I'm glad your daughter reached skeletal maturity before it became so. I want to chime in that in my experience the moms and their children who go through fusion are so much stronger than they think. My 13 yo son was fused T2 to L4 3+ months ago and is recovering very well. And the wait for surgery is so long and anxious that once it happens, time seems to fly.

Also, Becky--my son had his surgery at Shriners in Philadelpia and the hospital, as far as I could tell (I have nothing to compare it to--first really big surgery in our family), was very well equipped to meet every need that came up (and they serve many many children with many many needs). I particularly appreciated the PICU, which was quiet and well staffed.

You all will do very well--you're here, you're doing your research, and you'll be as prepared as you can be. Remember, swelling (facial, ankle, and genital) is common with this surgery, so don't let it scare you.

Mary Ellen

Thanks, Mary Ellen. I had been keeping up with Sidney's surgery and recovery.

I'm glad he's doing so well.

Marian

[pmsmom]

I'm going solo on this one for the hospital. My DH will be working all week, my mom will be with the boys -- so it will be me at the hospital. I really don't mind though at least during the surgery part...I already know I'm going to be witchy (or maybe that's just me right now since it's coming up soon & I'm trying to cram everything in -- although with *probably* PMS. ). I just know in my head I will do better alone.

I will be thinking of you being solo.

Perhaps it would be better--I'm thinking I would take it out on dh if I felt he wasn't speaking up.