Home SWEET Home!

Sorry for the delayed update — Ally IS HOME!!!!!  We broke free from the hospital Wednesday afternoon and are super, super happy to be home together as a family.  I promise to post some pics soon of my beautiful girl.  We welcome healthy visitors and invites to have some summer fun with family and friends.

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7-27-10 — 1 am Home is in sight…

Ally continues to do VERY well with new trach.  Goal is still to go home on Wednesday 7/28 after our home nurses are trained on our vent and observe her breathing treatment.  Billy and I did our official “24 hour stay” this weekend to prove we can handle all of Ally’s care.  We also celebrated our 13 year wedding anniversary on Sunday.  Thanks for all your continued prayers and support. Pics still coming soon.

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7-22-10 1 am — Small hospital update

Ally continues to do VERY well with her new trach and she has done well with pressure support trials, leading to a trach collar trial soon. While in the hospital we decided to have a surgery this past Tuesday to release her tendons in her ankles. She did AWESOME! Still dealing with quite a bit of hospital stress, but I must focus on the positive changes in Ally and the goal of going home around 7-28.

There are also tons of POSITIVE things about this hospital stay and a TON of wonderful caring people who go over and beyond for Ally. Just wish I didn’t have bumps mostly due to personality conflicts and some staff not truly understand what it means to have a child with a chronic condition. I am determined to find a way to stay positive and remind myself that this was the best choice for Ally. Thank you to all those at the hospital and our family and friends for your support and prayers.

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7-18-10 3 am Update on Ally’s hospital stay

Sorry it has been so long since I posted.  I know many of you might have been worried.  Thank you for your emails, cards, phone calls and most importantly prayers.

Ally is doing SUPER, SUPER well with her new trach, but I have been dealing with a lot of extra stress when working with hospital management and their orders of how much I can be involved in Ally’s care and treatments as she transitioned from her ET breathing tube, to a new trach, then the sensitivity of it for 5 days until it was changed out, and now what “official” training process I MUST follow before being allowed to 100% care for my OWN child and as quickly as possible leave this hospital.  Things are getting resolved but not without lots of tears and unneeded stress.

What’s most important though, is Ally is doing AWESOME!!!!!  This new phase of her and our life is a bit scary, but also exciting and I know 100% we made the right decision to trach her now.  I’ll try to share more details and pics soon, but I better get some rest.

Thanks again for your prayers and support,

Tina, Ally and Family

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7-12-10 11pm — Doing GREAT after trach surgery

Sorry for the delay….. Ally is doing AWESOME!!!!!!!! Trach surgery went very well and she was in the OR from 4-6 pm. First full treatment was done at 8 pm including her cough assist, IPV and vest with inline suctioning. She is really clear, so next treatment will be at midnight with ME doing part of it with one of our favorite RTs, Steve. Woooohooo! Ally seems to be happy and is watching her new Veggie Tale movie from Child Life.

I’ll update more and share pics soon. Ally is beautiful with her trach and we are soooooooooooo happy she will never have to have a mask over her face again.

Thanks a MILLION for all the prayers, well wishes and support!!!!!!
God IS GREAT and we are also lucky to have sooooooooooooo many angels looking after Ally and our family!

Hugs from Tina, Ally, and the Krajewski Family

PS – She is really enjoying the FREE cyber cards thru Childrens’ website. FREE cards can be sent to Ally’s room using the link Order a free Children’s Expressions greeting card . Ally is in Room #217

PSS – Our goal is to be home in 10-15 days (once me, Billy and my mom complete a shortened version of trach training). The usual time frame is 30+ days, but we already have so much knowledge and helpful experience from all of Ally’s previous non-invasive respiratory care.

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7-12-10 2 pm — Ally getting a trach TODAY ; )

Ally is scheduled for her trach surgery at 4-4:30 TODAY!!!  I still need to type out details why our family is choosing to trach Ally proactively (even though she is not bi-pap dependent and actually got over this illness quickly – once intubated).  We would have been going home this week and is over her pneumonia, BUT a trach has MANY, MANY positives that will enrich Ally’s life and keep her out of the hospital.  We are not choosing  a trach because she is weaker, or closer to heaven.  She only uses her bi-pap breathing machine to sleep, for a break, or full time when sick.  We pray this will be the same for the ventilator.  Some of the pros are:  almost all illnesses will be able to be handled at home, no more masks or breakdown on Ally’s face, she will most likely gain movement and strength since she won’t be using all of her energy to breath, she will be more stable and healthier, she may be able to be more active with school and fun activities, it will be easier to staff nursing and train others to care for her…..  There are some cons too, but we are positive this is the BEST for Ally. Please keep her and our family in your prayers and HAPPY thoughts as we make this positive transition.  Thank you again for your friendships and support!!!!

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Ally GREAT day — decided on a trach ; )

Ally had a WONDERFUL Day at the hospital.  She is currently intubated (with a breathing tube), but it has allowed us to be SUPER aggressive and safe with her treatments to clear her lungs.  Settings are super low and NO oxygen needed.  We would be able to extubate soon, but have decided that we are going to trach her pro-actively to avoid so many hospitalizations.  More details to come…

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Ally additional updates from 7/8 and 7/9

From an email I sent to family and friends……. to make it easier to share here…..

This email is to share Ally’s hospital updates (in case you didn’t know she is at Childrens )  I added some to yesterdays blog to share the lasted news with family and friends…

I don’t forward all updates, so if you want to stay up to date on progress, you can sign up on her website to get an email when something new is posted.  There is a link to get automatic email updates in the upper right corner of her website – www.angelally.com

Be sure to notice in this email that FREE cards can be sent to Ally’s room using the link Order a free Children’s Expressions greeting card and there are links if you’d like to send her a tiny gift for her courage. Ally is in Room #217.

7-9-10 9 am update — Ally had a little bit of a rougher night.  Her carbon dioxide levels have begun to go down, but she is now having some regular desats into the 30s during treatments (and even a 12 out of 100) for oxygen.  She comes back up quickly, but 5 times, her heart rate has also begin to drop from 140s to 90-100, which is not good and scary since her heart rate has rarely ever dropped during treatments.  Between treatments, she is resting well and barely using any o2 at all (25% and room air is 21%). Heart rate is also good between treatment (about 140s which is amazing for an illness, but the drops are scarier than it raising). We haven’t done morning rounds yet, but we are now most likely planning a pro-active intubation to give her some rest during these treatments.  Positive note — Carbon dioxide levels seem to be coming down and staying down.  They are at 57-60 (with a goal of 35-45).  So, next time you hear from me, she will most likely be intubated and we will be waiting for her to regain her energy and for the virus and fevers to pass.  Ally will most likely be okay within a week or two, but this is part of living with SMA with a weaker type 1 kiddo.  It’s probably a simple cold that has become a pneumonia again (still waiting on test results to know for sure).Ally is a trooper and angel through this all though!   She is fighting hard so that we can have those happy times again. Mommy has needed to take two stress bills in the last 24 hours, but all will be okay in the end.  God is in control and Ally has many angels at her side too.

7-9-10 2 pm update – Ally was intubated at around 11:30 am this morning since her energy was almost completely gone and her body was REALLY beginning to struggle and crash.  We did it pro-actively and it went SUPER smoothly with amazing teamwork amongst the Children’s Memorial staff.  We decided to lightly pull a very loose tooth before intubation, so it wouldn’t fall out and be aspirated.  This is Ally’s second time the tooth fairy will be visiting her and I’m excited to show her what she might bring.  She deserves more than $$ for this one.  Ally should be waking up soon from the sedation drugs they had to use.

7-9-10 11 pm – Ally had an overall good afternoon and evening after get intubated (temporary breathing tube).  She is much more rested and can tolerate her treatments better.  Unfortunately, she has still had some desats while coughing and suctioning through the ET tube, but this is because the junk is breaking up and causing mucus plugs.  She recovers very quickly with the help of amazing respiratory therapists and nurses.  We are very fortunate for all the excellent staff who are working with Ally and me this hospital stay.  This afternoon, after being intubated, Ally went to Interventional Radiology and got a PICC line and her tummy GJ tube changed.  She was a trooper.

Alright, I am off to nap on my chair/couch at the bottom of Ally’s bed.  I am very, very behind on sleep and just took an ambien to maybe sleep soundly for a few hours.  Luckily I can do this since we have an excellent nurse and RT helping Ally tonight.

Thanks again for your prayers, friendships and continued support.

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7-8-10 10 pm — Ally hospital update

Ally has had a crazy day at the hospital.  We admitted her Thursday morning at 1 am since we needed help with treatments and serious desats due to lots of junk in her lungs (probably a cold turning into pneumonia). She is tolerating her breathing treatments (every two hours) well enough without life threatening desats, but her co2 levels have been horrid.  Normal is 35-60 and she has ranged from 60s-103.  She is currently too weak to pass off the carbon dioxide her body is making and since she has needed oxygen for about 6 days, it makes the problem worse. Normally these dangerous co2 levels would mean she has to absolutely be intubated, but I’m not ready to do it since she is not having regular desats and is barely on any o2 now.  Dr. Lestrud, her regular pulmonologist and also a PICU attending is working very well as a team with me and other staff members to make decisions and he nicely respects my input as a parent.  We are holdin off intubation for now, but the next 12 hours or so will either lead us to inserting a breathing tube, or her finally turning the corner.  The good news is that she is on barely any oxygen, except for treatments and that the junk is finally breaking up and coming out.  We need her body to get rid of the posionous carbon dioxide though, or she will crash bad soon.  She also has fevers again, ranging from 100-102*F, so we need to get rid of those too.

On a positive note, things are going very well at the hospital as we coordinate Ally’s care.  EVERYONE is truly working as a team, with me as an equal part of that team.  A HUGE thank you to Lora for working hard today to create a team/schedule of nurses for Ally for the upcoming days here.  The respiratory department is also coordinating therapists that know Ally best.  This means the world to me, Ally and our family.  It is sooooooooooooo stressful being in the hospital, but it goes much more smoothly when working with strong team members who already know Ally and me.  I pray that it will continue to go well and that we aren’t here too long.  My guess is minimum of a week, but it may be longer depending on which direction Ally goes.

Thank you for your prayers and well wishes.  Your messages help brighten my day, even though I am unable to respond to each.  If you’d like to create a FREE e-card for Ally, please go to Order a free Children’s Expressions greeting card. I read each card to Ally and decorate the room with them.  There are also links if someone wanted to send Ally a tiny get well gift or balloon order online for in-room delivery or to speak to the Gift Shop, call 773.880.4601.  Most important is just your prayers.

Here are a few pics of Ally doing her breathing treatment and enjoying music therapy today at the hospital.  I’ll also try to post some from June too.

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7-7-10 11 pm — Off to hospital with Ally : (

Off to the hospital with Ally within the hour.  She did slimly better most of the day until about 6 pm and now is using too much supplemental o2 and needing treatment every 2 hours on the dot.  I think she will turn the corner within a few days, but need some help from our friends at Childrens.  I’ll update when I can.  Thanks again for all the prayers.

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