10-24-12 Busy, FUN October (PICTURES)

I need to write more about some of our FUN October Times, for now I’d like to share some of our AMAZING pics before time gets away from me!  Some events these include are Kristyn’s Lane Tech Homecoming, playdates, Movie outing, Windy City Roller Derby (thanks to Nurse Josie, the league and our nursing agency Continuum), Pumpkin Farm at Sonny Acres…..

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Pictures with captions can also be seen by clicking on our Picasa Album…

2012-10 October

Let us know what you think of the pics by writing a comment or sending an email!  We LOVE hearing from friends and family!

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10-7-12 Ally update from home, pics and SPECIAL VIDEO from Chicago Razorbacks Jr. Pee Wee Cheer Team

10-7-12 Mia visiting with Ally

Ally is home and doing well.  We are handling pain management (I think mostly from her cast surgery) with Lortab (hydrocodone with tylenol) at a half dose and its working well.  I was lucky to have nursing help on Friday (12 hours) and Saturday (6 hours).  Billy, Kristyn, and I even went out to lunch at Panera (an old favorite of mine) and then to a movie alone (The House at the End of the Block) and it was really nice to do something normal.  The movie was quite suspenseful and I recommend it.  We are tight on funds after being in the hospital, but it was worthwhile, quality time.

Need to share a few last photos from the hospital and then an AMAZING, heartwarming video from the Chicago Razorbacks Jr. Pee Wee Cheer Team.  It means sooooo much to have sooooo many friends and family caring for Ally and our family.

VIDEO —

More Pics before we left the hospital and once we got home (Click on the pics to see the captions and for them to get bigger)

10-7-12 Mia visiting with Ally

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HOME SWEET HOME!!!

We are home and settled.  Ally had her bedtime treatment, got her pain meds and is asleep in her own comfy bed.

I will be going to MY comfy bed soon.

Will share more pics soon.

Thanks again for everyone’s prayers, well wishes, support….. It worked!

 

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Thursday 10-4 1:30pm hospital update (planning for discharge, mostly likely 7 pm today)

 Overall Ally is doing better with pain using just tylenol with codeine, so we will tentatively discharge at around 7 pm when Billy gets off work and down here, plus that gives us extra time to be sure pain is for sure under control.  They are preparing the discharge papers just in case, but can post pone them IF anything changes.

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Thursday 10-4 10:30 am update from hospital

Ally is still dealing with some pain and it was bad at 7 am, but we switched from IV morphine to tylenol with codeine.  We are going to see if we can handle that throughout the day and maybe discharge and go home this evening.  If she needs one more day, I’m okay with that too.  I’m still LOVING the new medical director of the PICU, Dr. Harris. Still inconsistency with RNs and RTs though.  We do have an RT we had 1/2 a shift this stay, but he only peaked in post surgery, so I trained him this morning on Ally’s treatments.  I could just do them myself, but I really want to let others help and in turn, it might help other children with SMA.  I will continue to advocate for change and consistency for ALL our kiddos.

Praying hard pain is under control and we are HOME SOON!

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10-3-12 — 8:30pm Ally update from hospital (ups and downs)

Just wanted to do a quick update to share some ups and downs at the hospital for Ally and our family.  As I posted yesterday, the surgery went well (although it was longer than expected).  Unfortunately, Ally is experiencing quite a bit of post-surgery pain (probably from a combination of the placement of her IV Vortex Port and the releases in her left foot).  We’ve had quite a bit of tears last night and today.  We are now managing her pain with a combo of Tylenol, Motrin, and a little morphine as needed.  She has also had some occasional vomiting.  Ally did begin her pamidronate infusions last night and is in the middle of the 2nd one now (each being 4 hours), which will help build her bone density.  The vomiting could be from a combination of the pamidronate and morphine, so we are now using a med called zofran to help settle her tummy.  The other downside to this hospital stay, which I mentioned in a previous post is inconsistency in staff taking care of her.  In 2.5 days, we have had about 6-7 nurses and 6-7 different respiratory therapists taking close care of her.  Overall, the staff is GREAT, but it is hard for a 6 year old (and her family/me)  to have sooooooo many different people learning her specific care and coming and going from this room (plus all the docs and therapists).  I continue to express this concern to the management and maybe it will get better.  I’m happy the director of  all three intensive care units stopped by to see us today.  I do understand some of the difficulty with new staff, Ally not having been here in awhile and the larger unit, but I still feel there are ways to have more consistency.  Again, the staff are GREAT, skilled and caring, but its just hard to work with sooooooo many different people in a short amount of time.

On to some POSITIVES…

Ally has been able to have some “school” while at the hospital! Miss Melanie (who was also one of our home/summer school teachers) had fun lessons with Ally Tuesday and Wednesday and will come back again on Thursday.  She has lots of energy, is very caring, is an exemplary teacher, is working on Ally’s specific IEP goals, and we truly LOVE her!!!!

Ally reading a book with Ms. Melanie – Home-Hospital Bound Teacher we LOVE!

Ally reading a book with Ms. Melanie – Home-Hospital Bound Teacher we LOVE! (she wasn’t sleeping, she blinked)

Ally using her switch and handsplint to interact with Ms. Melanie

EXTRAORDINARY, personalized gift Bear from the Chicago RAZORBACK Cheer and Football Teams for Ally

EXTRAORDINARY, personalized gift Bear from the Chicago RAZORBACK Cheer and Football Teams for Ally

EXTRAORDINARY, personalized gift Bear from the Chicago RAZORBACK Cheer and Football Teams for Ally

Ally’s port, while it is accessed with the needle for her infusions (otherwise you will just see her regular chest)

Training to access a Port – feeling for it between my finger

Training to access a Port – what a port looks like under someone’s chest – demo

10-3-12 Ally after a refreshing bath – 1 day post up

Ally and Kristyn 10-3-12

10-3-12 Ally after a refreshing bath – 1 day post up

Yesterday, Ally got a few gifts from Auntie Tammy and Grandma Carol (thanks so much).  Today, she got a SUPER, SUPER special SURPRISE gift from the Chicago Razorback Cheer/Football Teams.  It’s a personalized bear with a special t-shirt dedicated to Ally.

I also got to do my IV port training today.  This is not always done for parents at the hospitals since only the Vascular Access Team does it here and at home, home nurse mostly do it, but I like to be completely knowledgeable of all of Ally’s cares and need to know best practices in order to prevent infections.

Ally had a bath later in the day which seemed to make her feel much better.  She is the happiest I have seen her since surgery.  Hopefully we can ease off a little on her pain meds.  If not, Ally might not get to go home tomorrow, Thursday.  I want to be sure she is truly ready and we can manage things at home.

Kristyn came for a visit tonight with Billy.  Ally likes seeing her sisters.  Unfortunately, siblings under 12 are no longer able to visit the intensive care units for precautionary measures.  I know Melissa has had fun cheering with her team the last two nights.  Thanks to Auntie Tammy (and family) and Grandma Carol for helping with the older girls.

I’ll update again tomorrow, hopefully from home, but if Ally needs another day, I will understand.

Thanks again for everyone’s prayers and well wishes!!!!

Tina and the Krajewski Family

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10-2-12 8 pm — Ally did GREAT in surgery, but took longer than expected

Ally got back from surgery at about 6:30 (after 4 hours).  The IV port was quite a bit harder to place than usual, but she did GREAT in surgery and is doing well!!!  She also went up in her trach cuff size to a 5.0 peds cuffed bivona.  She had some releases in her left foot and is sporting a new pink cast.  It was a bit stressful that her surgery went soooooo long, but the results are good.  Check out some new hospital pics of Ally… (If you click on the photos they will get bigger and have captions)

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10-2-12 11:30am — Gift Shop and Ally update/ Room Views

For those that were wondering, the gift shop at Lurie Childrens is NOT set up online yet, but they can do orders over the phone and send to room. At this time, they are no longer doing FREE cards (which we loved reading to Ally). If anyone wants to send her a pic or message on facebook, I will show her them on her ipad.

Gift Shop is open M-F 8am-8pm 312-227-3400
Allyson Krajewski – Room 1626

Please do not feel obligated to get Ally anything. Your prayers and well wishes are most important.

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Ally overall had a good night and has had a GREAT morning (waking up at 4am and taking a nap now).  We had a new nurse and new RT last night, but the nurse was wonderful.  I trained another RT on Ally’s treatment last night and another this morning, so I’ve needed to teach 3 Respiratory Therapists on Ally’s unique treatments and signs so far.  I’m hoping that the same ones come back, or ones who already know Ally well.  It’s just hard having new nurses and new RTs every shift and today is only day 2.   We are lucky to have two nurses during the day (spliting a shift) today that have had Ally MANY past hospital stays and this rests my mind some.  I continue to express this concern to the hospital that we (Ally and I) need consistency with care and to see the same faces who know Ally’s unique qualities as best as possible.

Another GREAT note, there is a new doc who is  head of the picu, Dr. Leah Harris, and she seems phenomenal!!!  She has a ton of knowledge of SMA and seems very up to date on current practices (including using higher setting for cough assist).  She even took some time during rounds today to talk about SMA with the team.  She is a very positive addition to Lurie Childrens 🙂

Surgery will be about 1-1:30 starting with her foot release, then her port for IV access, and her broncoscopy.

I will update when I can 🙂

Thanks again for your prayers and well wishes!!!

PS — Here are some pics of Ally’s room at the new hospital and our view of downtown Chicago.  If you click on the photos they will get bigger and have a description.

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10-1-12 — 9:40pm Ally Hospital Admission Update and 11:30 pm update

Ally is finally all settled in her PICU Room 1626 at Lurie Children’s Hospital in downtown Chicago. We got here at 2 pm and I’m just sitting down finishing my one meal of the day after organizing her things and educating the staff on her. Unfortunately we have already had 2 new nurses, a new resident doctor, a new attending doc and a new RT to Ally. They are all GREAT people, but its hard starting from scratch. I’m begging for consistency of a primary care team even if its all the same new people for a few days in a row. Ally already had a drop to 40s out of 100 for her oxygen sats when they started her breathing treatment and I demoed how she is used to things and coughed her back up quickly. This just shows how important it is for people to know Ally and her unique needs and signs. Tomorrow, surgery for her port (that will be used for bone infusions), foot release, and broncoscopy (checking her airway and trach) is scheduled for about 1:30pm.

Thanks in advance for your prayers and well wishes.
It means the world to us!

I am trying to find out information on the gift shop and online free cards, but haven’t found that yet (since a couple of people asked). I will post if I find it, but most important are prayers and positive vibes 🙂

11:30 pm update — Ugghhhhhh, just trained another RT on Ally’s bedtime breathing treatment. Overall, everyone who has stepped into our room in brand new (to Ally although we have seen 100s of staff here) and the RTs didn’t even show each other the treatment, they just think the next person can handle it or I will show them. I’m here for that, but miss our tried and true RNs and RTs that we have had over the years.  Something needs to be done on consistency of care. I cannot do this for 4 days and I hope we have some familiar faces tomorrow for the stressful day of surgery. Thanks sooooo much for everyone’s comments and prayers 🙂

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