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

Well it was another big day for Nica. She had a great nights sleep last night after they disconnected her IV on a trial basis. She woke up closer to her regular time and it looks like she actually be getting back to her normal sleep schedule. She got to play with Anne and sit with Grandma Joyce for the fist time today. She still has some minor seepage from her back but 2 doctors have assured us that it is normal but that they’ll continue to keep an eye on it. I’m still amazed that they’ve never put a bandage over back. It goes against everything you hear about large wounds. That Dermabond must be really great stuff.

Today Nica wanted to try eating in her wheelchair again. We tried it yesterday, and as soon as we put her in it she started crying and saying “Owey, owey, it burns, it burns. So her suggested that for today we could give her one of her Tylenol with Codine doses, wait 40 minutes and then try to put her back in her wheelchair. We hadn’t given her any Codine today but she wanted to eat in her chair so we figured we’d give it one more try. She went in it fine and started wheeling herself around her room. Anne really wanted to go to they play room down the hall and since Nica was tolerating her chair we decided to make an outing of it. It was Nica first real foray out of her room and she kept wanting to push herself to the play room but she still had the shunt in her dominant left hand. After about an hour of play it was time to head back. We noticed that some blood had collected in the shunt tubing as a result of her using the hand so much. We told her Nurse, it was Cathy today, about the redness, swelling, and blood. She tried to flush the lines clear but they were clogged. Cathy removed the shunt and called the doctor who said since she was drinking and doing so well that she didn’t need a new shunt or any more IV. That made Nica’s day as she got her good hand back.

For dinner Nica had some chicken nuggets and a big bowl of mashed potatoes. She fed herself the entire bowl of potatoes and did it using a regular cheap plastic spoon. Her wrist are still curling in a bit when she uses her hands a lot but Dr Rodriguez says that everything will continue to improve. Especially once she begins her PT. After his rounds this morning Dr Rodriguez said he would contact the rehab team and get her to TGH hopefully early this week.

The entire staff at All Children’s has been amazing. They’ve all really taken to Nica. She’s been in such a good mood. She wants to have tea parties with every one. She has all her stuff animals and friends plus we’ve been listening to a lot of Disney songs and soundtracks. The nurses have started calling our room the fun room and they often come in in groups just to hang out for minute and meet Nica while one them takes her vitals. What a great experience it’s turned out to be all around. It makes nervous about moving to TGH where we’ll be spending a lot more time. I hope they live up to the same standards as ACH. I guess we’ll find out soon. It’s gonna be even tougher considering that Tammy and Anne have had to go back home for the week for work and school. I’ll have my mom with me until Nica is transferred and then she’ll be leaving to go stay with Tammy to hopefully help alleviate some the stress and anxiety I know she’s going through.

Oh I almost forgot. Nica fell asleep during her meal and while holding a piece of buttered bread. She would not let that thing go for anything. We tried a few times to get it away from her but should refused to let go, even in her sleep. Needless to say, it required a photo.
Cooking With Nica-video

What a crazy day. Some many people came to visit. The doctor said to get Nica up and moving as much as possible and I think we did that. Miss Megan was the first to arrive with puppies and balloons.  Then came Grandma Kathy and Grandpa Joe, Grandpa and Tutu with fun toys, Aunt Pat with Celena and Sonya and some cards and balloons, and we rounded out the night with Mr. Dave, Ms. Laura, and the Paisley girls.  Boy were we all tired!  The dr came in this morning and said everything is looking great and to keep up the good work.  He still expects to discharge Nica early this week.  We are keeping an eye on the incision area because there has been some slight bleeding, probably due to all the movement yesterday.  The nurse said they would try to give her some Tylenol with Codine today to see if it makes sitting in her wheelchair less uncomfortable.  We remain hopeful that her pain will subside soon so she can sit and walk too.  Please pray for Ray as he begins his all daddy all the time time with Nica. Anne and I are coming home today and Grandma Joyce will hang out here until Nica moves to Tampa General Pediatric Rehab and then she will join us at home.  Feel free to call and check up on any one of us or just come visit :0)

Nica_2-days_post-op-video

We saw the doctor this morning and he gave us a thumbs up to move about the room!  Nica has been out of bed most of the day enjoying being held by Mommy and Grandma Kathy and getting a pedicure from Anne.  She is doing really well but is still hesitant to sit on her own in her wheelchair.  The doctor said we will probably transfer over to Tampa General to start physical therapy on Monday or Tuesday.  We are having a nice visit with Grandpa Joe and Grandma Kathy and Ms. Megan.  The girls are very excited to have familiar faces around again and are hugging on the cute stuffed puppies and balloons that Ms. Megan brought them.  We excitedly await the arrival of Grandpa and Tutu from Melbourne and all the smiles they will bring.  Please keep praying for a speedy recovery and smooth transition to Tampa General.  God Bless…Tammy

Nica is continuing to do well. She got a bed side bath today and her hair washed. Both of which weer desperately needed. Today was also the day Anne gave Nica a get well gift. She picked out an animated flying duck. The propeller has LEDs in it and spells out get well soon and plays “You are my Sunshine” It’s really cute. We also got a our first good look at her incision. It’s bigger than we had originally expected but the scar should be fairly subdued. By the time she grows up I reckon it she be barely noticeable. I told Tammy she needs a tattoo of a zipper fob at one end of it.

For any one who has changed Nica’s diaper, put on her pants, or worked with her for PT I imagine one picture will come as a surprise. Her scissoring was getting so bad that her legs were difficult to spread and had in fact begun to chafe against her diaper elastic. Now, she can really relax without even trying. It’s helping her bottom to heal and cleaning her for a diaper change is hurting her less and less. Her legs are so loose it’s amazing. Her hands too are showing increased functionality. Miss Heather, her OT, was right sooner than she expected. She’s not going to need her supinator strap any more. That’s especially true when you stop and realize that they put her IV and it’s support on her “good” hand. So everything she does is OT. She’s crossing mid-line more easily and readily even with the awkwardness of the IV.

We never made into the wheelchair today. She’s still been protective of her back and hesitant to move a lot and be held for long. As a result, Daddy is the only one who’s gotten to hold so far. We got to snuggle on the couch for about 45 min while we watched Rio. That was when I realized her diaper had twisted and she peed all down my front. Mind you I had just gotten out of the shower right before I picked her up. That was her first voiding following the catheter removal. At least we now that’s working OK.  After cleaning both of us up we tried letting Mommy hold her but Nica asked if she could just lay instead. She’s been really sleepy most of the day and she’s managed a small nap in the early evening. I’m hoping she and I both have a more restful night.

We’re still waiting on the order to come through for the PT to come visit. They’re being cautious about too much stretching of the wound area. We can certainly appreciate that. We haven’t been told what to expect tomorrow from the doctors that are treating her so we’re just going to wing it. We do have some visitors coming tomorrow, Grandma Kathy and Grandpa Joe, Grandpa and Tutu, and Miss Megan are all planning to stop by throughout the day.

May you all have a good night and check back tomorrow. Various Bat times, same bat channel.

Ray

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