4-6-13 INCREDIBLE Day — MDA Muscle Walk and Nurse Meghan’s Wedding

We had an INCREDIBLE DAY!!!!! Ally continues to do well and we got to experience LOTS of fun today. It started with the MDA Muscle Walk at Soldier Field with Auntie Tammy’s Family where the Ally’s Angels Team raised $1016 with a HUGE thanks to family and friends!!!!! Unfortunately Billy had to work, but he was then able to join us for Nurse Meghan’s wedding ceremony!!!! Resting and enjoying some Bije’s Pizza now!!! Be sure to check out all the pictures…

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4-5-13 Ally doing GREAT at home!!! MDA Muscle Walk tomorrow!

Ally has been doing GREAT since we got home!!!!! No more fevers, back to regular treatments without oxygen, slept the night, and had a real shower on her shower-table today!!!! I guess she has had her “tune-up.” We will let her lead the way, but this means we should be able to attend the MDA Muscle Walk tomorrow morning and the wedding ceremony of Ally’s home nurse, Meghan. Soooo excited!! We will let Ally lead us though and be sure that we don’t push her too much.

We are only $6 away from $1000 in Angel Ally’s Team fundraising for the MDA Walk. Can you help us meet that goal and surpass it?
Donations can be done at http://www2.mda.org/site/TR/Walk/55-637-ChicagoDistrict?pg=team&fr_id=4394&team_id=14985

Thanks soooooo much to those that have donated and also for all that prayed or send positive vibes for Ally to get better. We are so grateful to have such a wonderful support system of friends and family!!!

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4-4-13 — 3pm HOME, SWEET, HOME!

HOME!!!! SWEET!!!! HOME!!!!  Need a nap!  Glad Billy took off early to pick us up and is here to help!

Ally is over all doing well but still has had some temps of 100. Some blood work came back odd today after five days of nothing growing but they still released us since she is doing well enough to take care of at home. We redid the blood work and they will let me know if we need to do any other meds at home. So glad to be  HOME!!!!

 

 

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4-3-13 Ally hospital update — 9 pm

Ally was good most of the day again.  We moved to treatments every 6 hours and added back in the vest (which helps to break things loose in her chest).  She needed a little motrin after the morning treatment, fine with afternoon treatment at 2 pm and then spiked a 100 degree fever and 150s heartrate (normal around 110-120s) at 5pm.  We are now giving motrin and tylenol again every 3 hours since she’s stayed in the 140s  for heartrate overall and 99s for temp, but o2 sats and lungs have been great. So plan is still to go home tomorrow as long as the fever doesn’t get higher than 100 and no other complications. She is doing her long breathing treatment with PJ now and will get another at 2 am.  SOOOOOOOOO happy to have him again tonight (and RT Jo 2 days in a row).  We also have our nurses from Sunday tonight and the lead nurse has had Ally several times before.  I’m soooooooooooo excited and thrilled to have some consistency for Ally (and me and the medical staff)!!!!!

Please say a prayer that things stay stable enough to go home tomorrow.  Plan is that my mom might pick us up with her boyfriend around 2:30 pm with our van (so Billy can work a full shift) and then our home Nurse DeeDee will meet us at home and work till 8pm and again Friday day.

Keeping my fingers and toes crossed, but Ally WILL lead us.

Thanks again for everyone’s support and prayers!!!

 

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4-2-13 Ally hospital update — 10 pm

After some trouble in the morning, most of Ally’s day went well.  She napped well with low, almost normal heartrate and so we took a break from giving her motrin and tylenol.  Unfortunately at the end of her 3:30/4 treatment, she had some big desats to the 70s (out of 100) for oxygen  again and high heartrate of 160s for a few hours.  We had to use quite a bit of oxygen to get her breathing well and keep her oxygen up.  Then after an additional nebulizer/IPV treatment, tylenol AND motrin, she stabalized again.  I must have jinks things by talking about going home sooner than later.

Ally has done well since then (knock on wood) and just finished her 8/9 pm breathing treatment.  We are lucky to have a GREAT respiratory therapist that knows Ally well from the past and he is on tonight and tomorrow.  Hopefully we will have the same day therapist too.  For nursing, we have additional NEW nurses to Ally, but there are two of them (since one is learning) and they are very nice.  Just still hoping for as much consistency as possible, so I can rest as much as possible and things are as stable, consistent and less scary for Ally (and me).

Not sure of the time frame when we will be going home.  Every time I think it might be the next day, she has bigger breathing complications and even some fevers of 100 one point today.  We did some additional labs, but those haven’t come back yet.  We are down to treatment every 4 hours, but that is still 6 times a day and lots of monitoring.  I want to be closer to our baseline of 2-3 treatments a day before going home and make sure nothing more is developing. Praying, maybe Thursday, but Ally will lead the way.  It could maybe even be Wednesday night, but again Ally will lead the way.  At home we only have day nursing during M-F, so I don’t want to go home and get behind on things.  This is her first sick hospitalization since her trach (almost 3 years ago) and I want to make sure we are doing the best we can to get her over this illness safely.

Thanks again for the prayers and well wishes!!!

PS — Don’t forget about our MDA Muscle Walk that is in 4 days.  We are only $94 away from our team goal of $1000.  The link to donate is  http://www2.mda.org/site/TR/Walk/55-637-ChicagoDistrict?pg=team&fr_id=4394&team_id=14985   THANK YOU AGAIN!!!!

 

 

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4-2-13 Ally hospital updates — 7 am ROUGH treatment

I know several people are not on facebook and are interested in updates on Ally, so I’ll try to update a little throughout the day here too…

7am Ally update — Ally had an okay night with a little oxygen during her treatments and I slept off and on for several hours.  Unfortunately, at the “end” of her 5:30 am treatment, she had desats into the 60s and now has some thicker tan secretions.  Treatment turned into 1.5 hours long including a trach change and huge poop explosion.  She is resting comfortably in the mid/upper 90s now.  I’m a bit frustrated that we have another new nurse this shift since I had high hopes of yesterday’s returning since she was working again.  We will also have another new RT since the others we had this hospital stay are not working.  Inconsistency in people coming in and out of our room (even though staff are nice and skilled) is soooooo hard on me and Ally.  I wish with all my heart that this would get better, but it’s something I have to advocate for almost every hospital stay. 😦  Praying for a smooth day and that this illness is not getting worse!

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4-1-13 — 9 pm — Ally hospital update

Ally did okay most of the day at the hospital, until this evening at around 8 pm.  Throughout the day, we did breathing treatments and tylenol or motrin EVERY three hours on the dot.  If you went past this, she got irritable with a higher heartrate, but only low grade fevers.  She did have some attitude for our respiratory therapist, but he did GREAT with her just using a little oxygen if needed.  We even got her tummy tube changed in interventional radiology since she has a GJ tube.

Ally had one small vomit in the AM with suctioning and then a HUGE vomit around 8 pm after only being given 10mls of medicine.  We are just finishing her breathing treatment with a combo of me and a therapist who is working really well with Ally, but she did require quite a bit of oxygen during the treatment.  Glad to have lots of good help with nurses, respiratory therapists and docs today!!!!

All labs have come back normal so far, so this is probably just a bug that needs to run its course.  These setbacks mean we will not be going home on Tuesday, but maybe Wednesday, if she turns the corner and we can handle things at home.  We usually do only 2-3 breathing treatments at home and are currently doing 8 throughout the day and night.  It will get better though.

Thanks again for the prayers and support!!!  Don’t forget to go to my previous posts to possibly donate to the MDA Muscle Walk which is in 5 days.  Thank you again 🙂

 

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4-1-13 Ally admitted to Lurie Childrens Hospital for illness Easter evening

Just wanted to post a really quick update that Ally was admitted to the hospital Easter night 3-31-13 at around 9 pm.  She had fevers since Friday till Sunday ranging from 99-104 (even with rotating tylenol and motrin every 3 hrs), vomiting and loose stools off and on for 2 days, and wasn’t showing signs of getting better.  Originally, we were going to just take her into the ER to do labs to get the right antibiotics (if needed) and make sure she didn’t have a port infection, but I decided it would be best to admit her and get a little extra help fighting this illness aggressively.

Ally is now in the PICU Room 1639.  She is getting extra fluids and started an IV antibiotic.  Her lungs are partially whited out, meaning something is going on.  We are waiting for results on labs, but RSV is clear, and the others take some time to grow.  We are still rotating tylenol/motrin and doing breathing treatments every 3 hours.

We had a GREAT first night with nurses, but hope to have much better care in the respiratory department moving forward.  I slept less than 2 hours, as I did Ally’s breathing treatments myself, which is okay, but I hope to get some help while we are here.  Looking forward to a more positive day/night today.  Hopefully we will only be here a couple days and then back home.

Thanks in advance for the prayers and well wishes.   I will update when I can, but mostly will post on facebook.

Tina

PS – Before being admitted we were able to do Easter baskets in the morning and I baked a ham for the rest of the family.  Below is our March album on picasa with some of our outings, St. Pat’s and Easter celebrations, Grandma Carol’s birthday, MDA shamrock visits and our new puppy-Cody….

Click on the album link to see ALL of our March Fun: https://plus.google.com/photos/106238761607932251156/albums/5852554277908947153

PSS – Don’t forget we are doing two fundraiser walks and our first one, the MDA Muscle Walk is THIS Saturday, April 6th.  Please consider making a small donation.  Each $5, $10 or more, REALLY does make a difference.  Go to http://www2.mda.org/site/TR/Walk/55-637-ChicagoDistrict?pg=team&fr_id=4394&team_id=14985.  Thanks in advance for your help and to those who have donated already!!!!

 

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