Displaying 21 - 30 of 40 entries.

Doing Better.

  • Posted on January 11, 2012 at 9:58 pm

Wow, what a day. We finished up our morning sessions and took our lunch break. We played in the play room for a little bit where they had a nice full taco bar. Unfortunately, Nica was to tired to stay happy long enough for either of us to enjoy it. She insisted on fish for lunch. Upon finally finding and getting it for her she refused to eat it. A few minutes later she said she was tired and wanted to go to bed for a little break. As soon as she got settled there came a knock at the door for her afternoon PT. Following that we both went back to the room for naps. She succeeded were I failed. When she woke up our new room was ready and we moved and she had dinner. The new room is much better. It has a full bath where I can wash Nica by myself. They brought me a bath chair similar to the one we use at home and she got a shower. She laughed and giggled and yelled “Yay, a  water bath!” over and over. Then she said “Grandma Kathy would be so proud of me.”

They originally tried for her PT at 8am today but came back at 10:30am instead. Tomorrow is looking a bit more reasonable for her at 9am. That gives her a chance to eat before work. So far the staff here has been really great. As usual Nica is winning them over with her zany antics and fun personality. On the flip side, they’ve all had a chance to hear how loud she came scream. We are both missing Mommy and Anne pretty bad. Anne got Nica a blanket after the surgery and I told Nica that Anne filled it up with hugs and kisses to be used later as needed. Nica then held that blanket for a good 10 min saying hugs and kisses sissy. she keeps going back to it every few minutes and she makes sure I get lots of turns to use the blanket, too. We cannot wait for this weekend we our family can be whole for couple of days. I really miss having all of my girls together with me. I didn’t think it would get this hard for me; especially not this early on. I guess we just need to find a routine and go through the motions in order to do what we came for. I know that in the end, it will be worth it, but that doesn’t make the now any easier. I’d better wrap it up. I seem to be keeping Nica awake. Goodnight.

People people everywhere

  • Posted on January 11, 2012 at 11:13 am

So we’ve seen an army of people already this morning. Several therapists, nurses and a few doctors. We’re currently working with PT and OT to determine her level performance post op so that we know where to begin.

Nica slept well with some tossing and turning reminiscent of pre op. However when we did our morning diaper change, she said she was scared when I started moving her. They tried reducing her pain meds last night and I think she was experiencing some pain. They gave her some meds and now she’s doing better. The doctor has also decided to try reducing her muscle relaxer in increments as well starting today. Looks like we’re moving. More later.

Still not good

  • Posted on January 10, 2012 at 10:38 pm

It’s 10:40 pm and they just brought her pain killer and her muscle relaxer 2 hours and 40 minutes late and they still haven’t brought me any diapers for her even though I asked about that at 8pm also. It’s a good thing I have some diapers in the diaper bag.

Culture shock!

  • Posted on January 10, 2012 at 10:08 pm

OK so, here’s what we left at ACH, a nice maybe 20 x 20′ room with a pull out couch, a pull out chair, a fridge, access to drinks and snacks for Nica 24/7, a safe, a large counter area with a sink and sprayer, a 40″ LCD TV with internet and video on demand loaded with kids movies and preschool channels,a second TV for non patients to watch, a full bath, a large bay window with a view, our own adjustable thermostat, a beautiful, spacious, open concept wing and hospital with amazing sound proofing, a fantastic staff, and the list goes on and on. What we have now is about 8′x 12′, with a small window with no view a really small bathroom with a triangular shower that is maybe 30″ on each side. I have enough room to stand still in it, not sure about showering. and I’m scared to leave my car here so my mom took it to my house and now I’m stranded here. they no longer let patients park for free in the garage and I can’t see paying for what our new doctor said could be 2 to 6 weeks depending on her progress. The attending nurse said it’s unusual for a rehab patient to be placed in the wing we are in. I have no bed. Instead, tonight I get to sleep on a pull out lounge chair. It’s not looking very comfortable. The nurse practitioner said they’ll try to move us tomorrow into a bigger room. I hope so.

On a fun note, we rode over in the biggest ambulance I’ve ever seen. Instead of being built on some kind of heavy duty truck chassis and converted, this thing was converted from a full size Freightliner sleeper cab semi. It had 4 doors up front to carry whomever and room for 2 gurneys in the back. Nica was a little apprehensive at first but like the rest of the ACH staff the transport team quickly had her calmed down and singing while watching A Bug’s Life.

They’re planning on doing her full PT eval in the morning in order to work up a case plan. Let’s hope for the best. Her reputation has preceded her and some nurses have stopped in just to see her and say hi. We went out roaming the halls looking for something fun to do but apparently children aren’t allowed to play after 5pm which is when they lock all the play rooms in the children’s medical center. Something about that seems odd to me. We will probably be able to check Nica out for a few hours on Saturdays and Sundays, but I have no car to go home and we’re not sure what we can do. We do have our MOSI passes and I don’t think it would be a bad drive from here so we’ll have to see. Dr Kornburg did say they occasionally take the kids to the Florida Aquarium and the kids museum for outings so we may get to do that.

I’m still feeling a little apprehensive of the place but some of the staff I’ve met seems nice. Some seem stand offish or unapproachable. I’m hoping we get more of the former. I’m trying to think of it as training to go to a second world country.

In short, so far I’m not impressed and it’s not very kid friendly. I will keep an open mind tomorrow and hope they change opinion for the better. I could continue my ranting but let’s start over in the morning.

Getting ready to move!

  • Posted on January 10, 2012 at 2:23 pm

I signed the consent to transport earlier. I thought I would be posting some more videos this morning but it looks like I need to get packed up to go to TGH. We have a bed assignment but we’re waiting on the hospital social worker to sign off and for everyone to decide which hospital is going to handle transport.

The in house PT and OT stopped by again today to actually work with Nica for a little bit. Their assessment was that Nica was doing great and that the only problem the rehab center was going to have was getting her to stop. Uncle Pastor Tim is on his way for a final ACH visit and Nica is excited to see him. We’ll keep you posted as more develops.

After rounds

  • Posted on January 9, 2012 at 9:11 am

So we saw the neurosurgeon, Dr Storrs, and lot of other people this morning. They’re in the process of contacting Dr Kornberg and his team to co-ordinate her transfer. She won’t be moved today, but maybe Tuesday or Wednesday. In the meantime the in house PT should be stopping by later today to do an evaluation.

Ray

End of Day Report 1-8-12

  • Posted on January 8, 2012 at 10:30 pm

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

 

 

 

 

 

 

Busy Day

  • Posted on January 8, 2012 at 2:23 pm

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)

Better everyday!

  • Posted on January 7, 2012 at 1:52 pm

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

End of Day

  • Posted on January 6, 2012 at 10:35 pm

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