So Sunday turned out to be very busy. We did our therapy and started in on lunch when the first of many visitors arrived. Uncle Greg, Aunt Abby, Sam, and Peter were the first to arrive. They were soon followed by Allison Reynolds and her friend Erin, and Dave and Tracy Zielinski. It was a lot of fun to play with everyone. Anne and Nica got to open some presents, and Nica sat in the playhouse for a bit. She loved it and asks all the time to go back in. Nica asked what was Sam and Peter doing. I told her that they were playing video games and she asked if she could play. So Nica got to mess with an XBOX controller for a while and had a great time. Before we knew it, it was time for everyone to start heading home. We had a great time and enjoyed seeing friends and family. Monday it’s back to work to show off for Mommy and Anne, we hope.
Taking it easy.
So today was fairly casual. We started with a light PT session doing some sit to stand and tried some more walking today, but Nica just wasn’t feeling it. Anne joined us in therapy today, having woken up early at the Ronald McDonald House(RMH) so she could come see her sister. Therapy was over by 9 or maybe 9:30 and the rest of the day was ours except for medicine times and seeing the doctor. Doctor Kornburg checked in early to look at Nica’s back. He’s not happy with how it looks but said that it can take 2 to 3 days of antibiotics in this case Keflex and Bacitracin, to see any improvement. One thing is for sure, she doesn’t want you going near it. This morning it was very sensitive and painful. Some Codine took care of the problem until about 4:30 tonight, when she expressed some discomfort during a diaper change. right now it’s really red and a bit puffy along the edges of the incision. Using the cream has helped the scab to start to come away and you can get a good look at her back. Hopefully it will start to feel better tomorrow.
We got a nice surprise today when we heard the sounds of air hockey being played down the hall. That meant the Child Life Center was open and we could go where all the good toys are. Anne and Nica played with the dollhouse together, as well as the play kitchen and super market check out. Nica ate some lunch in there before it closed at 1pm and by then it was nap time.
Mommy, sissy, and Miss Megan went foraging for food while I stayed with Nica for her nap. it was the first nap she got to take since we arrived at TGH and she made it count for about 2 1/2 hours. Nica woke up crying for Mommy who was just around the corner and came to hold Nica for a bit. That was when she also got her second does of codine and other meds before going to the family room for some more play time. After a while, ever one was getting hungry and we opted to go to the hospital cafeteria rather than Tammy and Anne going to eat at RMH so that we could all have more time together. Before we knew it, our day was over. It was time for Nica’s evening round of meds and bed time was quickly approaching for both girls. It’s nice knowing the Mommy and Anne are just across the street and will be back in the morning.
Tomorrow brings with it a short OT session followed by lots of visitors. So, we’d better get out rest.
Tour de Nica
Another amazing day with the team at TGH CMC. Nica got to go on her first bike ride, well trike ride actually but what a mile stone. She didn’t actually push the pedals all the but she did get a few pushes in there. the simple fact that she kept her feet on the pedals so well is amazing. Before, the scissoring was so bad you could barely get her on a bike let alone leave her there for so long. I had to post a video for this one. It’s a bit long, almost 10 minutes, but I am just so proud that I couldn’t edit it down any further. Not all of her dialog was audible but I tried to keep all that was. You could see the fun on her face. Even when that sessions was over all she wanted to do was get back on that trike, all day long. She did some more walking as well and this time I got some steps on video. She would’ve done better at walking but that came after the riding and she was distracted.
Following PT came OT. That went well as usual. She slid some more rings across the pole. She still wants to turn her wrist the wrong way when she grabs them though. Next came some piano playing and a diaper leak that paused OT. A quick change back in the room and it was back to work. She did really well with a shapes puzzle, only having trouble placing the diamond and the pentagon. Now it was time for crayons. She practiced drawing straight lines, down and up, and then circles.
One of the neurosurgeons did stop by during OT and looked at Nica’s back. He was a little concerned about the continued drainage and changing appeance. Nica was concerned that he kept poking and squeezing her incision and she made sure everyone was aware of it. He took some photos and sent them to Dr Storrs, who performed the operation. He decided to err on the side of caution and start her on some strong antibiotics that targets the skin as well as an antibiotic cream and bandages. She is showing more redness on her back and some slight puffiness as well. Her temp is also slightly elevated, 99.3 I think. If after a few days of meds she’s not looking better then they may have to go ahead and stitch her up a bit rather than risk her back reopening.
She actually took a 30 minute nap today before her afternoon PT. Afternoon was a little easier than morning PT. It mostly consisted of sit to stand exercises while reading a Dora musical adventure book and pushing its buttons. We rounded the work day out with a little more walking.
Rather than finishing her nap Nica and I, well mostly Nica, felt it was important to spend some quality time with the big dollhouse in the playroom. There are only 2 dolls, a blonde little girl that she calls Rapunzel and the girls dad who has been recast in the role of Flynn Rider. The lack of a chameleon in the playroom forced us to cast a brachiosaurus for the role of Pascal. All characters had a grand time taking baths and climbing stairs. Unfortunately, one too many falls on Flynn’s part required Nica to take him over to the Black & Decker work bench for some medical attention that involved a drill press, hammer, wood chisel, pipe wrench, miter box, and a chop saw. Needless to say, with such outstanding medical attention Flynn return to doll house where it is believed he is still recovering. The playroom doesn’t open again until Monday so he should fine.
The highlight of our day was visiting with Anne and Grandma. Unfortunately, Mommy got stuck working late and she won’t be here until in the morning. Grandma and Anne are staying in the Ronald McDonald house across from the hospital. This one is even nicer looking than the west house at ACH. This one also has SleepNumber beds but I was told that these will actually hold air. Lets hope so. When Mommy gets here in the morning Grandma is going to finally get to go to her house for the first time since before the operation. It’s just in time, too. Pappa is getting a cold and really misses seeing Grandma.
On the weekends therapy is relaxed a bit, it still starts early but the sessions are shorter. We can’t really go anywhere tomorrow, as Dr Kornburg wants to keep an eye on Nica’s back. He’s on call this weekend and will hanging around the hospital. Between that and atibiotics 4 times a day now on top of her other meds there’s not much point in trying to escape for any length of time. Still just having Mommy and Anne here all weekend will be more than enough.
Nica-1st-Bike-Ride-video Nica-walks-1-13-12 video
Nica-1st-Bike-Ride different format Nica-walks-1-13-12 different format
Hitting our stride.
Well I must say, the staff here really is great. I slept in a bed for the first time in 8 days and I feel a little better. We got to do some actual walking this morning in a Snugseat walker. It was amazing to see her take steps without scissoring. We also got a visit from the therapy dogs, Blake a yellow lab, Blaze a retired greyhound, and Chick-let a chihuahua. Chick-let was wearing a navy dress with white polka dots, and a rhinestone belt with a big bejeweled pink heart buckle. It was very nice to make so many new furry friends. We then got to work with the OT today, Kim I think. She just kept commenting how beautiful Nica is. She was also impressed by her abilities and her personality. We did some block staking, ring sliding, and some bead threading. Kim suspects Nica has a bright future as a bead threader.
Next it was time for PT. That started with some stretching by putting foam shapes in the water and putting them up on a mirror. Katie, the PT then decided she wanted to see how Nica did in a walker. Josh the rehab assistant, got the walker and set it up for Nica. We went down the hall a little bit and back. Then it was time to get ready for our family meeting.
Family meetings are scheduled every Thursday, but generally only happen around admission time unless there’s something that needs to be discussed with the team. That took about an 30 minutes and started with ogling over Nica, Nica asking for and getting her own ID badge, and then getting a retractable lead to put it on. Next we set our short term goals for therapy and penciled in the 2-6 week stay. The duration of our stay will depend largely on how well Nica is responding to therapy.
Housekeeping got Nica a get well card and a purple pinwheel flower. Someone else gave her a Lion King quilt. I’m not sure who it was because it was dropped off while we were in the meeting. Bonnie, our nurse practitioner, went to the store and bought us the diapers Nica needed since the hospital doesn’t stock diapers larger the a size 4. She also bought Nica a Ni Hao Kai Lan outfit and a little polka dot outfit with a big bow on it. They’re both really cute. For me she decided to get a six pack of Coke and some Doritos. I thought it was a very sweet gesture on her part and I was sure to thank her. Bonnie is also a dangerous woman. Every time I meet with her she gives me various chocolates like Almond Joys and Butterfingers.
Our afternoon consisted of a PB&J lunch we barely ate, a nap we never actually took, and more PT. I got to show Katie Nica’s last gait trainer video so that she could see where Nica used to be, ability wise. She was pleased to see the mobility Nica had developed in spite of the spasticity. Once afternoon therapy was over Nica got a surprise visit from Grandpa Joe. It was great to have some company and Nica loved playing with Grandpa. He stayed through dinner and bath time and beyond. Nica didn’t want to see him go. She had so much fun sitting with Grandpa and playing dolls and farm animals.
By the end of the day Nica was just tired. But we weren’t quite done. Dr Kornburg stopped by and took a look and Nica and asked how things were going. He took a look at her wound because it’s still leaking a bit. she leaves stripes every time she lays down. He went ahead and order a dry bandage be put on and he said he was going to see if one of the neurosurgeons could look at it tomorrow. He’s not worried about it too much since there’s no puss or blood leakage, just some yellowish drainage. I’m assured the drainage is normal but it’s been a week and we’re still seeing it. Dr Kornburg just wants some affirmation from a neurosurgeon that everything is still OK.
Nica-PT-Day-01 video
Doing Better.
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
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
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!
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!
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
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
