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Archive for July, 2010

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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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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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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Ally had a slightly better day!  We still have a long way to go (to clear the junk in her lungs and upper airways and keep it gone) and also for the fevers (mostly 99-101) and fatigue to go away.  Used less o2 today and some periods none at all.  She was a little more alert and desats were less severe (some 50s, but mostly 70-90s if I moved fast enough) during treatments.  Still a long way to go, but I’ll take any improvement we can get and still pray we can handle it at home.

Not sure exactly what is causing all of this, but using tobi nebs in case her pseudomonas is flaring up and it will also fight some other gram negative bacteria.  Also using xopenex and pulmazyme and rotating tylenol and motrin every 4 hours. Might need to do an oral antibiotic too?  I left a message with the pulmonologist but I didn’t hear back about anything I should be doing more.  I might call again tomorrow to double check if he thinks I’m on the right route.  I told them clearly that I wasn’t ready to bring her in to the hospital, although I know she should really be there in case things got worse.  She’s also not stable enough to go in for tests.  If we go, we will be admitted and then probably be trapped there for a week or longer. Long story about why I am trying to handle this at home (mostly emotional reasons).  I might share at some point, but not sure others would “get it” or might judge my thoughts/actions.  I know I am doing what is right for us at this point.

Off to do another treatment soon (every 2-4 hours). No nurse today, but RN Lucy will be here Wednesday and Thursday during the daytime.  Can’t wait till we have more than 2-4 days of nursing coverage each week.  Ally is approved for 14 hours a day/7 days a week and respite, but we won’t settle for crappy nursing and would rather have limited, EXCELLENT care for Ally.  Maybe by August/September two of our nurses will be coming back to us and I’ll be in heaven.  In the meantime, I appreciate GREATLY all that Megan and Lucy are able to do, and Maribel once in awhile.

Thank you again for the messages, prayers and well wishes (even if you haven’t written but are thinking of us).  I strongly believe it helps.

A few have asked again if they can help in any way.  Prayers and well wishes are MOST important. The older girls are mostly taken care off with my mom and Billy’s help (plus Melissa gets to go to Florida at the end of the week with my sister Sandi’s family).  Simple meals have been a huge blessing in the past, and are always welcome since I don’t cook (and sometimes forget to eat much) during and shortly after Ally’s illnesses, but no one should ever feel obligated.  I only mention it, since amazing friends ask and it does help. I pray I can return the favor or pay it all forward one day.

Thanks again for your prayers and support!!!

Tina, Ally and Krajewski Family

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7-5-10 Quick update

Very quick update from facebook –

Thanks sooooooo much for the prayers for Ally!!! The good news is that she hasn’t gotten worse, but bad news is that she is still using some oxygen and lots and lots of rough treatments. Luckily we had a nurse 8-5:30 today, but no one again until Wednesday since one of our RNs is sick. Still praying to handle this all at home.

Ally has such a strong will and it is amazing what she fights through.  I will keep doing all I can for her, as long as she keeps fighting.  The happy, healthy times are why we do it all.  She is truly an angel here on earth teaching me and hopefully lots of others lessons about life, courage, faith, love, friendship…. and sooooo much more.  Thank you God for blessing me with this angel and of course for Kristyn, Melissa, my family, and all my friends.

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Prayers needed for my Ally. She has been doing well, but 4 am Saturday morning started having lots of trouble (congestion, coughing and now fever). Planning on keeping her home and continuing with lots and lots of treatments. She is really worn out. I love my girl.

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