Nica's SDR Journel Our families journey through Nica's rhizotomy surgery and recovery

Nica was able to have a yummy pancake with peanut butter and syrup, a few bites of bacon, and a chocolate milk for a late lunch! She ate it with record speed. She’s been catnapping all day but has had a lot of awake time today and is enjoying being able to move a little more and especially being held by mommy and daddy. Thanks to everyone for the love and prayers that you’ve been sending. We couldn’t have picked a more wonderful bunch of friends and family We love you all!
The girls were so happy to see Uncle Pastor Tim. Anne was such a silly willy during his visit lol. Nica just kept listening to the banter and smiling (makes me smile too to see her smiling). We are just sooo amazed at her progress already. Her ankles are loose and pliable and her hands are nearly fully functional with wide finger extensions (Ms. Heather her OT would be so proud!) She’s transferring objects from hand to hand and I can’t express how easy diaper changes are now that there is hardly any leg scissoring! I just sent Anne and Daddy out for some much needed Daddy/Daughter time and Grandma Joyce is having another tea party with Nica so I think I’m going to catch up on my book or some sleep now. Stay tuned for more pictures when Ray returns!

I haven’t gotten up so much in one night since Nica was a newborn. She’s still begging to get out of bed, but after 2 days of asking, this morning she finally got to have her tea party. The Nurse Practitioner came by and showed us little exercises we can do with Nica’s legs.

Dr. Rodriguez just left and order the catheter removed. She doesn’t have to lay flat any more and they’re going to get Nica out of bed and moving. It’ll be the first time we’ve held her since before the surgery. They’re also wanting to try her in her wheel chair today. Dr. Rodriguez said that because of all of her fluid loss during the surgery sitting up could give her a headache.

Doing the exercises is amazing. I’m not sure I’ve ever seen her legs move so easily. She’s able to move them on her own and she has some normal feeling as well. There seems to be some hypersensitivity in her feet but that will pass. They’ve put her on Valium to control the muscle spasms that are common for the first few days.

She is allowed to have visitors. Just let us know if you plan on stopping by.

Ray

I think it goes without saying that it’s been a crazy day. However, overall it’s gone very well. She has had some discomfort. She has complained a couple of times now that her back is itchy. She has a what looks like a six inch incision in her lower back. It was glued shut and there’s no bandage. She has begged to get out of the bed so that mommy or daddy can hold her. Unfortunately, the doctor has so far said that she needs to lay in bed as flat as possible for maybe 2 days. This is not making Nica very happy and I’m sure all the floor nurses and several patients have heard her protests. The attending resident finally came in and said that we can roll her on her side very carefully for short periods. That helped out quite a bit. I really believe that the biggest problem of the evening is that the hospitals streaming movie service keeps going down and every time it does it turns off Finding Nemo. This was immediately followed by loud screaming. After the 3rd time I resorted to my back up plan. I pulled out the portable movie player and set it on her food tray.  That helped her to relax enough to go back to sleep. She is resting now with her Nemo, Ariel, Rapunzel, Pal Violet, Miss Megan blanky, and lion blanky. The nurses said that they should be in about every 4 hours throughout the night. Everytime they touch her she wakes up so it could make for another long night. Still the worst we hope is over and we should all sleep better tonight except for Anne who is experiencing a lot of anxiety. She is having a hard time understanding why Daddy and Sissy have to sleep in the hospital. She commented earlier that we’ve all been hear long enough and it’s time to go home. Nica too is beginning to ask to go home and sleep in her castle bed. Please continue to pray that they can both feel more at ease. In the meantime Anne is passing the time by playing in every playground and play room she can find at the Ronald McDonald House and All Children’s Hospital. It’s a tough job but she said she is up to the task. So many play areas, so little time.

Nica is still on clear liquids and the staff seems amazed at the amount of apple juice she has gone through. We’ve always said she was a heavy drinker. Besides she hasn’t eaten in 26 hours. She’s got to fill up on something.

I think that’s it for me tonight. A special thanks to Dave and Tracy Zielinski, and my mom. Without their help, support, and company today would not have been as smooth or as pleasant as it turned out to be. Uncle Pastor Tim is coming to visit tomorrow and that I’m sure will brighten both girls’ day. More tomorrow.

Nica's first Night

ray

She’s settled into her permanent room. The procedure went well enough that the Neurosurgeon decided to skip ICU and go straight to a regular room. Also, he felt that morphine wouldn’t be necessary. So she’s on Tylenol 3 and regular Tylenol. She woke up briefly Tammy told her she was in the hospital and she said “they’re gonna help me walk?” and then she went back sleep. She’s sleeping still. She went to recovery (PECU) at around noon. She has a private room with 2 TVs a small sleeper couch and a sleeper chair. Looks like she’s gonna be out for a while.

We just spoke with the surgeon. They are closing her up now. The procedure went well. No excessive bleeding or complications. They did find an excessive amount of abnormal nodes (nerve roots). She’ll be going to recovery soon and we’ll be allowed to go see her when she is awake enough to know that we are not there. She’ll have a catheter for 2 days then they’ll take it out and start in on some minor rehab before transferring her to Tampa General.

We were sitting in the staging area for a while. We got to meet a lot of doctors and nurses as well as the Child Life Specialist. The CLS had a puppet and some play Dr toys and used them to explain to Nica what was going to happen. The puppet’s name was Hannah and Nica didn’t want to give her back. For those of you that know Dave Zielinski, you may find it anecdotal that the guy in charge of hooking up Nica’s nerves and checking all of her wiring is also named Dave. Before she went back they gave her some medicine to help her relax. Nica said “it’s pink, it is? It’s yummy.” 10 minutes later it was so funny watching her become intoxicated. That was some serious happy juice. She was spacing out and I love you. We couldn’t help but laugh. ‘I love you, man’ now has a new meaning for Tammy and I. It was kinda of like watching an old hippie movie. A few minutes later she was all but asleep and it was time to go to the “Hugs n’ Kisses’ hallway to say our good buys. They let Ariel go back to the ER with her so Nica’s in good hands. They even put a hospital ID band on Ariel in case she gets lost again. Apparently Ariel wasn’t done riding around in the Security shuttle this morning. She stayed in the van for some more car riding while the rest of us checked in at the Surgery registration desk. The security guy brought her in about 45 minutes later.

The OR called a little bit ago to tell us that they had started in on her and everything was going well. The surgery was scheduled to last 165 minutes. So now we wait. Stay tuned.

Ray

All settled in at the Ronald McDonald House. We have to have Nica checked into surgery by 7am. Not sure how the night’s gonna go. The girls are restless and away from their routine. they’re having a hard time going to sleep. I’m thinking we’re all gonna have a hard time sleeping tonight. I’m gonna finish my dinner and try to turn in myself.

Ray

Nica had her pre-op physical today and she was cleared for surgery. Let the adventure begin. The final surgery date is January 5th as the assisting neurosurgeon is unavailable on the 4th.

Nica has a bit of a cough and the Doctor is worried about the risk of contracting Viral Pneumonia while under anesthesia. The end result is that the surgery has been rescheduled for January 4th. …and the emotional roller-coaster continues.

Surgery is scheduled for 12-15-11. Hopefully there will be room at the Ronald McDonald house and we’ll be able to check in on the 14th. She’ll be at All Children’s for about a week and then be transferred to TGH for 3 weeks of inpatient therapy at their Pediatric Rehab center. We still don’t know where she will be doing her outpatient PT.