1-17-13 HOME!!!!!! but a bit “off”

All of Ally’s labs came back good and she had a good Wednesday night at the hospital, so we got to come home today as planned.  HOME SWEET HOME!!!!

Unfortunately, right as we were getting ready to leave the hospital, I first got in a BIG argument with the valet guy while I needed to park and load Ally and her things up in our handicap van.  Then, Ally threw up 2 times.  Her tummy is really upset and she has off and on been fussy.  She slept peacefully the ride home and then threw up again soon after getting home.  She also had a low grade temp of about 100 this evening, but it is back down.  These are very common side effects of her pamidronate infusions (for the first couple of rounds and then usually go away).  I’m not sure if it will last a day or much more.  It just makes me a little nervous since the symptoms didn’t start till we were discharged and they are the same signs of the flu. We are rotating tylenol and motrin, and also giving zofran to help her tummy.  Plus, we slowed her feeds. I’m really, really hoping its just a reaction to her infusion (which she had some small issues last October after her first infusion).

Luckily, we had home nurse, Anna, who helped out a ton this evening with Ally from the second we pulled up home (4pm) till a little past Ally fell asleep.  She did two breathing treatments to hopefully clear Ally out in case she aspirated any vomit and got her all comfy in her bedroom.  This allowed me some time to slow down, catch up on some personal things, eat my first meal of the day, and try to prepare mentally for tomorrow’s school meeting.

Hopefully Ally will have a restful night, but I’ll be up here and there checking on her.  The school meeting is at 9 am and luckily we have  a great home nurse, Josie, to take care of Ally so I can attend.  Hoping we can begin to make some progress in getting Ally a great new school,  consistent home school  with therapies when she can’t attend and more…..  It will probably take more than one meeting, but I’m super lucky to have lawyers advocating for Ally with me!!!

I’m off to bed to rest a little.

Hope everyone has a good end of your week and a nice weekend!!!!

Tina

 

 

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1-16-13 Ally hospital updates

1-16-13 Chicago Princess with her new panda bear

1-16-13 Ally up bright and early

3:40 pm — Have had a smooth day so far (knock on wood). Billy brought Ally’s meds from home that started this afternoon, great day nurse and respiratory therapist, home-hospital school session with Miss Melanie, and Ally is ALL ready for surgery. She should be going in ANY minute. Will take around 2 hours, but maybe longer if they run into anatomy complications again. Praying hard for Ally, the surgery team and even my sanity during the wait.

CPS Hospital instruction with Ms. Melanie and Ally

5:40 pm — Ally is out of surgery!!!! It went well and only took about an hour.  She will be waking up slowly and then starting her pamidronate bone infusions.  Thank you very, very much for all the prayers and well wishes!

11 pm — Ally is having a good evening.  She has been more alert and happy to watch her cartoons.  We are happy to have the same night nurse as yesterday and will be doing a bed-bath in a little while.  Baths are often done in the evenings in the hospital when it is less busy.  Ally has a ton of iodine from surgery all over her chest, arms, neck, even face that needs to be washed well.  Ally’s nighttime breathing treatment is done and went well with a great therapist that was new to her.  She is back on her home feeds which she is tolerating fine.  Her pamidronate infusion just finished and we will do labs in the morning to make sure she does not have any side effects (such as low potassium, like last time).  We will also check labs again in two weeks.  Ally was uncomfortable at first, but is doing very well with just tylenol and motrin.  Still VERY hopeful that we will go home on Thursday 🙂

Ally’s new port site is below the lower washcloth (old site is above the cloth)

Ally’s new port site is below the lower washcloth (old site is above the cloth)

Added later — Here are xray pics of Ally’s port to help understand more how it works to allow for easier needle pokes for infusions and blood draws.  You can also see from these pics how much her spine is curving.  In the semi-near future she will need a spinal rod surgery to help straighten her spine to help save her from some pain and other health complications. The pamidronate bone infusions should help to strengthen her bones for when this surgery occurs and to hopefully prevent future fractures in her whole body.

xray to show Ally’s new port (see bell shape to the lower right and then tubing that goes up and around), also shows how Ally’s spine is curving

xray to show Ally’s new port (see bell shape to the lower right and then tubing that goes up and around), also shows how Ally’s spine is curving

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1-15-13 Settled in at the hospital – surgery on Wednesday

Ally and I are settled in at Lurie Childrens Hospital.  She is in PICU Room 1634.  If anyone needs to reach me by phone, cellphone reception is patchy with the TALL Chicago buildings downtown, so the hospital number is 312-227-1600 and then ask for our room 1634.

Luckily Ally’s home nurse Meghan helped us get down here and settled, so that Billy could work and then attend the wake of his AMAZING boss, Justin, who is now in heaven and  free from pancreatic and liver cancer.  He was one of the most caring men I have ever met and extra helpful to our family.  I’m sad I am unable to make his services.  My heart goes out to his wife and family.

We got down here at about 1 pm and Ally got settled into her bed around 3 pm. It is super busy here and we are going to stay to ourselves away from the other germs.  Ally is scheduled to have her port replaced tomorrow at about 4:30 pm. I’m guessing she might be later on the schedule since she was so complicated last time.  She had a line placed today by an ultrasound guided IV (to get continuous nutrition and pre-blood labs) and that took a lot of time due to her tricky veins.  After surgery, she will also get her pamidronate bone infusions through her new port.

Positives — Our admitting nurse has had Ally before, so that makes things easier.  We will have a new nurse on Wednesday and Thursday days (same one both days), but I’m VERY happy that Ally will have some consistency.  Our night nurse will be here hopefully all nights we are here too 🙂   They are trying more consistency with nurses and respiratory therapists since the last hospital stay was more difficult with lots of different people coming and going.  A HUGE thanks to the staff for trying to coordinate this, as it does relieve some stress.  Another nice surprise — When we arrived to the room there was a special panda bear and card from our friends the Terhost Family and some delicious chocolate for me.  Thanks a million!!!!

Billy will be here with us for surgery and all day tomorrow.  We hope to go home on Thursday, but it will all depend on Ally’s pain status after surgery and how the infusions go. Big school meeting is still scheduled for Friday morning.

I will update Ally’s blog when I can.  Thanks in advance for your prayers and positive vibes.  I’m for some reason more uneasy than usual.

10:30 PM Tuesday night update — And the frustrations begin 😦
Ally desated to 70 (out of 100) for oxygen during her bedtime breathing treatment and I just took over for the most part (with the nurse assisting too). Its too hard for an RT (respiratory therapist) who is passive to pick up her treatment and signs for one treatment and she won’t be back in since she is off the rest of the time we are here (neither will the daytime one I trained today). She did watch me though, so maybe she learned a little. Ally hasn’t been below high 80s in a long time and she is well. Then the hospital doesn’t have two of her meds and won’t let me give the extra ones I have in her bag since I don’t have the bottles (only syringes). One is liquid albuterol that they have had for years here and the other is the injectable form of robinul that we give by j-tube. The compound does not work well on her, but we are gonna try it.  I would just like everything at her baseline before and after surgery, not missing or different than her regular meds.  Hopefully when Billy brings her bottles in the morning, they will let me give it. UGGHHHH, just wish we were home.

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1-14-13 Busy week with surgery and school meeting

Ally will be admitted to the hospital on Tuesday for pre-surgery things. Surgery to replace her port (that has formed a covering over it stopping it from working properly) and pamidronate bone infusion on Wednesday. Hopefully discharge on Thursday since I have a big school meeting on Friday with our lawyers, school staff and their lawyer. Ally has only had about 20 hours of homebound school this whole year and we really want a safe school for her to attend some, plus they stopped her homebound school again due to how a form was filled out. Just want the best life possible for Ally.

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