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Archive for June, 2009

Unfortunately Ally had a very difficult treatment Friday and is intubated (has a breathing tube).  We had to hit the code for assistance since she had a huge mucus plug and was not able to breathe at all and then her heart rate started to go down to the 60s.  They were able to ambu bag her up and intubate quickly. We are doing q2 treatments of IPV, coughing and suctioning and getting lots of thick plugs up.  We are also dealing with some fevers.  I am staying optimistic about clearing her lungs, getting rid of this bug and then being able to take the tube out and go back to our normal routine.  Prayers, prayers and more prayers for Ally and for things to go smoothly here at the hospital.  Also prayers to anyone else sick out there.

 

I would like to provide an update on concerns about exposure to H1N1 infection. The hospital has not 100% confirmed it as H1NI, but has confirmed influenza A, which is related to H1N1.  Based on the time of year and how sick Ally and I both got, this is most likely H1N1. After discussing with Dr. Schroth and physicians caring for Ally, it is unlikely that Ally was contagious at the Families of SMA conference as she got sick 2 days after we left the conference.  Also Melissa had a cold and most likely did not have H1N1 infection based on her symptoms.  I may have had the H1N1 infection and got sick on Saturday.  Based on what is known about H1N1 infection, I may have been contagious starting on Friday.  However, I felt well on Friday and had no idea I would be sick on Saturday.  When I started to feel sick on Saturday, I stayed in my hotel room away from the conference activities and we left the following day.  People who sat within 6 feet of me starting on Friday may have been exposed.  The recommendations per Dr. Schroth after consulting with the Center for Disease Control and the Ohio Dept of Health is that exposed individuals should look for symptoms of fever, sore throat, aches and pain, and not feeling well.  If these symptoms occur, please talk with your doctor ASAP to consider treatment.  The incubation period for H1N1 is 1 to 7 days.  Please see www.fsma.org for additional information.

 

Thanks again for everyone’s prayers and support.

Tina, Ally, Billy and Family

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Just wanted to write a quick update to let others know that Ally is doing okay right now.  We are doing breathing treatments every three hours and not getting much mucus out.  She is on very little to no oxygen through her bi-pap.  She is pretty alert watching cartoons with only a little napping here and there.

 

Her bloodwork came back yesterday with very low white blood cell count, so we have stopped her hydroxyurea for now (since that can be a side-effect).  Then a little while ago, we got some very disturbing news.  She has the H1N1 (swine flu) virus.  The hospital has tried to assure me that the media has made a bigger deal out of this than needed and it is overall no more severe than the regular seasonal flu, but of course it is still VERY scary and dangerous for a child like Ally.  Not sure how long symptoms will last and how severe it will get for her.  She started Tamiflu.

 

I am additionally VERY concerned since we were just at the Families of SMA conference (I notified them and they have sent out an email).  Most likely, this is what I came down with on Saturday and possibly Melissa had it.  As I mentioned before, we thought Melissa came down with a cold, but I got pretty sick.  I am just praying VERY hard that no one else comes down with this from being exposed to anyone in our family.  I would have never knowingly exposed anyone to any bug and I’m feeling sick to my stomach about it.  I just wanted to be sure to let others know in case they have any signs of illness so they can get tested if needed.  Big signs are fever, coughing, cold flashes, possibly diarrhea…  There’s lots more info on the Centers for Disease Control website.

 

I am trying to stay positive and of course my faith is in God.

I am praying hard for Ally and all others.

 

Future updates will most likely just be on her website at www.AngelAlly.com

Be sure to sign up on it if you want an email when I update.

 

Thanks again for everyone’s support.  It means the world to us!

Tina, Ally, Billy and Family

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I am sooooooo sad and very, Very, VERY frustrated to write that Ally is back in the hospital at Childrens Memorial.  We admitted her about 8 pm Tues night since she has most likely a very TERRIBLE cold that has affected her lungs quickly and turned to pneumonia.  I haven’t even had a chance to write about about the ALL the wonderful things she and our family have been up to since we got out of here June 8th (school, church, my b-day, MDA Lock-Up,  International Families of SMA Conference in Cincinnati….) and here we are in PICU Room 30.  I do not regret doing any of our outings as they are all an important part of the life we have chosen for Ally and she was doing very well until Monday.

It started with a cold in our immediate family.  Melissa got a cold that was manageable in a non-sma child.  Then, I started to feel crappy Saturday afternoon at the Families of SMA conference so kept myself in the hotel room away from others Saturday evening and barely said goodbye to other families on Sunday for fear I would spread germs.  Billy did his best to help with the older girls and with Ally’s treatments but being in a small hotel room and over 6 hour drive home in our van didn’t help manners at all.  This cold was SUPER tough on me and had me hacking coughing, sleeping tons, cold/hot flashes starting Saturday night and just began winding down Mon/Tues (luckily I had some help from Billy and 2 great home nurses Lucy and Rosalyn).

I really have not regained the mental strength to be here again.  Although Ally pulls through like a trooper, hospital stays really stink for her and all of us.  I was determined that we would handle this illness at home when she started having some trouble, but when desats start going into the 50s (out of 100 for oxygen) and I’m bleeding in lots of oxygen into the bi-pap/cough assist and IPV, doing coughing practically non-stop, fevers almost to 102, I have to admit that we need hospital help.  I just don’t understand why Ally’s left lung collapses so quickly.  We still hear some air movement, but the xray was junky on both sides. 

So we are here again, hopefully for only a short stay.  We are doing treatments every 2 hours, using only a little o2 with higher bi-pap settings, general antibiotics until we see if she has a clear infection….  Things are going smoothly thanks to some great staff and Ally’s plan of care.  She was only in the ER a short time, they got blood and a line on the first draw and we have a regular room even though the PICU is filling up quickly!

I’ll update Ally’s website (http://AngelAlly.com) when I can and possibly email.
In the meantime, we appreciate your prayers and well wishes.

Tina, Ally and Family

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6-12-09 Ally at MDA Bootwalk in Franklin ParkSorry again about the delay in updates.  It’s been so busy, as usual.  But the REALLY good news is Ally is HOME and doing WONDERFUL!!!!

Ally came home from the hospital on Monday, June 8th at 11 AM after 6 days at Childrens Memorial with a cold bug that turned into pneumonia, and some teething complications.  It is amazing that we got out of there so early on a Monday.  A special thanks to Dr. Epting, Dr. Melissa Brennan, APN Shamik Shah , and hospital staff for making this miracle happen so early in the day.  Ally had a good Saturday and Sunday, and was really ready to be home in her own bed (me too!).  Unfortunately, “I” had a really rough night on Sunday in the hospital.  There was some major difficulty with the night respiratory manager with scheduling.  While I was trying to sort this all out and advocate for a therpist that knows Ally and our routine well, there was a code in the picu with a child I knew. This was very difficult for me to handle emotionally, but nothing at all compared to what the child and parents went through.  Luckily, everything turned out okay with the child.  Billy came back to the hospital for emotional support and I later supported the family in the best way I knew how.  These life and death situations hit a bit too close to home, and are very scary, but I try to remember that God is in control and each of us will go to heaven when it is our time.  In the meantime, we must cherish every moment we have with our loved ones.

My mom picked Ally and I up from the hospital on Monday, so that Billy could work.  I got to take a shower, unpack a tiny bit, and off to Ally’s school to train her new teachers and therapists on her Dynavox EyeMax Computer (otherwise it would have been in September).  I would not have done this if Ally was having trouble, but she was very stable and we used her bi-pap breathing machine to give her some extra support.  After the training, Ally had a breathing treatment at home, I ate for the first time, napped, and woke up for another breathing treatment before Ally’s bedtime.  It was nice sleeping at home, but unfortunately most of the week I dreamt that we were in the hospital still waking up talking in my sleep.  It is getting better though.

Tuesday, Ally and I mostly relaxed and did a couple of extra breathing treatments.  Ally’s homebound teacher, Ms. Candy, came and had some fun with her at 3 pm.  I’m very lucky that my sister Sandi took Melissa to have lots of fun at her house for the week.  I miss her greatly, but she is having a TON of fun and I’m catching up on my energy.  Kristyn had school and Billy went to work.  My amazing Mom made me a great lunch and dinner for our family.  I often forget to eat and was really too emotionally drained to cook.  I am so grateful to have such a great family and supportive friends – thanks everyone!

Wednesday we had our SUPER Nurse Maribel. Ally had a great, real bath.  She also did Music Therapy and School at home.  I tried to catch up with bills, cleaning, medical calls, computer stuff….  During home school, Ally did a wonderful job using her Dynavox computer with her eyes.

6-10-09 Ally 2

6-10-09 Dynavox with Ms Candy 1

6-10-09 Dynavox with Ms Candy 3

Thursday was a nice day.  We had Nurse Maribel again to take the best care of Ally.  Kristyn (my almost 13 year old) and I had a Mommy/Daughter Day.  We ran some errands, got our hair cut, shopped for sandals, and went to the lovely dentist office.  That last part was no fun at all, but part of my goal of taking better care of myself.  Kristyn will also be getting braces in the near future.

Friday was a busy, busy day.  Ally is pretty much back to her baseline, so we forged ahead.  We had another great nurse from Childrens’ NICU, Kate.  She is a friend of Maribels and has been with us about 2 months.  Ally had art therapy, 45 minute nap, and then speech.  She created an incredible finger painting with Joan.  Then she did well with her Dynavox computer during speech.  Check out the videos on the right side of her webpage, or on You Tube… http://www.youtube.com/results?search_type=&search_query=tina61775&aq=f

6-12-09 Fingerpainting 4

 

6-12-09 Fingerpainting 8

 

6-12-09 Dynavox with Chris SLP

After Speech, we headed out to the Franklin Park Fire Department to do a 2nd Kick Off for the MDA Boot Walk.  Three different shifts will be going out and we are trying to meet and thank all three shifts this year.  This is our third year visiting different fire stations.  I brought brownies and Ally seemed to really enjoy being out of the house.  After the fire department, we met my mother-in-law and sister-in-law for Mexican lunch.  Ally did wonderful the entire time without needing bi-pap at all.  She is one strong cookie and I’m amazed at how quick she bounced back with such aggressive treatments.  I’m so thankful to our wonderful team of home nurses and the hospital staff at Childrens.  I am hoping that some of Ally’s plan of care will start to carry forward to the other SMA families (every child is different, but it could be used as a reference with Dr. Schroth’s neuro-muscular protocol) .  I did ask the families’ permission to share names as many of you offer well wishes and prayers.  Mariah Osborne is in Room 210, and is 10 months old with type 1 SMA.  Feel free to send her FREE e-cards thru the Childrens website http://childrensmemorial.org/ecard/default.aspx .  Her parents could really use the support.  The second family has Emily Rios who is 17 months old and diagnosed with Type 2.  She is home and the family is settling into a routine.  We look forward to all the girls meeting soon.

Thanks again for everyone’s well wishes and support.

Hope you enjoy the new pictures and videos!

*I am also adding some “good” hospital pics to the last blog post.  Some really cute ones of Melissa too.*

Tina, Ally and Family

6-12-09 Ally at MDA Bootwalk in Franklin Park  2

6-12-09 Ally at MDA Bootwalk in Franklin Park  4

 

6-12-09 Ally at MDA Bootwalk in Franklin Park  6

6-12-09 Ally at MDA Bootwalk in Franklin Park  8

6-12-09 Ally at MDA Bootwalk in Franklin Park 9

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6-5-09 29 lbs 41 inches hospital

6-5-09 29 lbs 41 inches hospital

 

 

 

 

Sorry for the delay in updates (last one done Thurs).  As most of you know, it can get crazy busy at the hospital, even when things are overall going well.  Plus, the wireless internet connection is horrid and one of the biggest things I wish could be improved to make it easier for parents to communicate easily with loved ones.  That’s actually a compliment to the hospital, since I am still very happy with the TEAMWORK going on between me and ALL hospital staff to get Ally home soon.  I’ll try to make this a “quick” update, but I want to warn everyone I have quite a bit of excitement to share and I may sound a little hokey with my spiritual beliefs and since I’m running a little low on sleep.Since admission, Ally has made steady progress in us clearing her left lung of mucus (and popping it back open if it was collapsed) and improving her breathing.  I’m a little shocked we aren’t home already, but she has now had TONS and TONS of thin, clear secretions (saliva/snot) that we have been suctioning out of her almost 24/7.  It seemed to turn into a never-ending river causing her some havoc, but her overall doing well, if we stayed on top of it with treatments and regular and deep suctioning.  Yesterday, we even debated on trying a low dose of robinul to dry/slow down the secretions, but worry some about her drying up too much and Ally getting mucus plugs that can cause her to stop breathing. 

It seemed very odd that the secretions kept coming and coming.  Ally did test positive for parainfluenza Type 3, which is the cause of the common cold.  So although she is on antibiotics in case she has any bacterial infections, this “cold” just needs to run it’s course.  Remember, a simple cold in Ally easily turns into a pneumonia and her collapsed left lung.  She was making improvements, but for some reason slower than I expected.  I’ve now come to the conclusion that there was some reason that Ally and I needed to be in the hospital. I strongly believe that God makes everything happen for a reason.  Maybe part of the reason was for my “big mouth” of advocating to help improve conditions in the Emergency Room for chronic children (it’s dangerous for kids to spend 5 1/2 hours down there if it can be avoided at all), or maybe God wanted to connect me with a special SMA family that has spent most of their winter and spring here. 

There are two “new” SMA families in the Chicago area that have been hospitalized the majority of the beginning of winter until now.  A couple of therapists outside the hospital and a mutual church friend tried to connect us, but for some reason it never happened until recently (one yesterday).  April 25th, I visited the first family in the hospital who has a precious sweatheart who is about 17 months old and a weaker type 2 or stronger type 1 SMA kiddo.  A church friend was the third person who told them about Ally and the family emailed and called me.  I came to the hospital and shared my knowledge of SMA, possible starting settings for breathing equipment and what we do to keep Ally mostly healthy, happy and home.  We’ve emailed a ton since April and I’m happy to say this little girl went home about 1-2 weeks ago.  Today I will be going to their church and fundraiser.  We also hope to keep in close contact and have the girls become close friends in the near future.  Mom asked to visit Ally (and meet her for the first time this weekend), but ended up having to cancel due to other duties.  I know she will meet Ally and the girls will play soon.

It was even more difficult to connect with the second family who has a Type 1 SMA daughter who is 10 months old (but lives 10 minutes from our house).  I learned a little about her from the Birth to 3 program who does home therapy.  A social worker and our speech pathologist asked a couple of months ago if they could share my phone number.  I was excited to help in any way possible, or at least be there for support, but the family never called (not sure if they received our number or what happened).  I knew from a mutual therapist outside the hospital that the little girl was having a very difficult battle with SMA and was still in the hospital.  Unfortunately (and for some good reasons), there are HIPPA rules against medical staff talking to families about other families.  Even though I gave permission and practically begged the hospital to let the other family share info about Ally beating the odds and being 3 with SMA 1 and us being here in the PICU with them, they were not allowed.  I don’t completely understand this, since Madison WI hospital often connects families with each other for support.  But rules are rules and I didn’t want anyone to get into trouble with the medical laws for saying “If you are interested in meeting a SMA Type 1, 3 year old and her mommy – they are willing and in Room 226, or I can share her 1/2 sheet of personal information and website her mom created, or call Families of SMA and they can put you in touch with other families if you’d like.  If you’d rather not talk to anyone, we understand.”  This was not allowed and the Parent Wise Program that connects families with similar diagnosis’s told me I was not a good person to volunteer to talk to other families since Ally is in the middle of treatment (she will always be unless she goes to heaven) and kinda admitted that maybe I wasn’t a good person for Parent Wise because of my reputation of being very vocal about good and bad/difficult times in the hospital.  I tried to convince them again on Friday that SMA families really needed support from each other, and the program is not meeting its goals, and can they at least share that we were here, but no luck.  So, I believe maybe we stayed a little longer so God could intervene. 

Saturday afternoon, for some unknown reason, I decided to go to the reception desk outside the PICU to look at their collection of DVDs.  I thought maybe Ally could try 2 new ones (even though I have her whole collection of 100+ in a binder at the bottom of her bed).  While slowly looking though their huge collection, an older lady and two teenagers came to the reception desk and said they were here to see ******.  I couldn’t believe my ears.  I hesitantly had to ask if she was the grandma of ****** and if she had SMA (since I knew the name from our mutual therapist).  She sadly responded yes and that things were not going well.  I didn’t want to be pushy or overstep, but told her about Ally and offered to talk to the family, only if they wanted.  She was VERY interested, so I took Ally’s 1/2 sheet with pictures, info and website out of my pocket and gave it to her for the parents.  She asked for another sheet for herelf.  I had been caring these around all week if some chance I ran into the family and now here they were.  What are the chances of this happening naturally without devine intervention?  Dad then came out, and then mom.  We were asked to move into the waiting room and talked for about 2 hours with them taking over 2 pages of notes on things I was sharing.  I told them I didn’t want to give them any false hope, and every child is different, but if they wanted to try more things to get the breathing tube out, I would be there for them.  I could share what sma protocol I use as a starting point, but every child is different.  I also told them about Dr. Schroth and later gave them tons of SMA documentation from Madison and Families of SMA.  I also told them that if they felt it was time for their daughter to be in heaven, then I was there for a listening ear if they wanted it.  I told them several times that Childrens is a WONDERFUL hospital and the BEST place for Ally.  It has very dedicated, caring docs and medical staff, but docs may have different philosophies of quality of life and how to treat SMA.  Only the parents can decide what is best for their child and they should be presented with all choices and proven sma protocol as a possible starting point.  I’m so happy that this family has some renewed hope and documentation and me, since they seem very interested in all of it, but just needed to be connected and I really think God made that possible last night.  Maybe, in some strange way, that is why Ally had a more severe “cold/pneumonia” that required us to come to Childrens.

Okay, I am going to stop rambling.  I had about 3 hours sleep, I think?  since there was so much excitement. 
Off to take a shower, Billy will bring me clothes, and off to the church and fundraiser for the first little SMA girl I mentioned.
Maybe her parents will let me share a pic and her name.  I will ask permission first.

Back to Ally – quickly (sorry, this was a LONG update, but hopefully uplifting to all of you).  She had lots of secretions yesterday and lower oxygen sats in the 90s (out of 100).  She got WAY better in the evening and overnight (maybe since our mission at Childrens was initiated).  We have a tentative plan for weening to home settings/treatments today.  We are also planning a possible early ESCAPE to home in the morning or early afternoon Monday.
I also want to be able to bring Ally’s computer (and maybe her-we’ll see) to computer training from 2-2:45 at her new school (IF all works out).  She is doing WELL, so it may be possible.  The training is  being done by the Dynavox rep to introduce many therapists (Speech, Teacher, Assistive Tech, ?PT, ?OT) to Ally’s computer so they can work effectively with her in the summer and the beginning of the next school year.  If we have to cancel, it is okay, but probably won’t be able to do it again until September.
(Stock School and Rebecca – I will let you know in the morning  if we need to cancel, or if needed, feel free to call my cell 773-981-7211).

Off to shower.  Thanks for everyone’s prayers, well wishes and support.
Maybe our next update will be from home.
Tina, Ally and Family

PS – If you would like to send Ally a FREE card at Childrens, she is in room 226 and the website is
http://childrensmemorial.org/ecard/default.aspx

 

— Tina Krajewski Pampered Chef & Discovery Toys Consultant 773-283-7211 or 773-981-7211 tina61775@gmail.com Visit my “KITCHEN STORE” 24 hours a day, 7 days a week for new recipes, to browse our product line, or place orders at http://www.pamperedchef.biz/tina617 & my “EDUCATIONAL TOY STORE” with on-line catalog at http://www.discoverytoysinc.com ; ) **Please be sure to visit my daughter Allyson’s personalized websites** 1) http://AngelAlly.com (for updates, pics, videos and more) 2) http://www.caringbridge.org/visit/allysonkrajewski (Old journal website) 3) http://picasaweb.google.com/tina61775 (see our pics of Ally and family) Allyson was born 2/2/06 and has SMA Type 1

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Ally May 2009THANK YOU sooooo much for all the supportive emails, posts on our website and prayers!!!  Sorry I can’t respond to each, but please know they mean the world to me and our family.

 

Things are going well at the hospital and Ally is improving quickly with LOTS of TEAMWORK!  I am very happy and I’m praying to be home by maybe Saturday or Sunday.

 

We are still doing treatments every 2 hours — pretty much 1 hour of treatment, one hour break and restart the shaking up the mucus with her chest vest, coughing with her Cough Assist machine, suctioning, IPV (which is a nebulizer that shoots burst of saline/air/meds into Ally’s lungs to break things up), tons more coughing and she is in postural drainage position (head lower than her butt to encourage the secretions to come up) 24 hours a day since she tolerates it with her GJ feeding tube.  This is VERY intense and tiring for Ally and all involved, but it gets her well quickly and back home where she belongs.  We’d rather be very intense for 3-7 days and get Ally healthy, happy and home quickly than stay here for a month, or struggle at home.

6-3-09 hospital bi-pap 1

6-3-09 hospital bi-pap 1

6-3-09 hospital bi-pap 2

6-3-09 hospital bi-pap 2

We made one big mistake the first night.  I did not insist on deep suctioning to get the mucus in Ally’s lungs out and quite a bit built up (even know she seemed to be doing fine with us using a little sucker).  During the first respiratory treatment on Wednesday morning, Loretta (our absolute favorite Respiratory Therapist) did deep suctioning, extra IPV… and got TONS of mucus plugs out.  This caused Ally’s oxygen saturations to drop into the 20s (goal is 100) and her to have major trouble breathing for a short time – but this is what can happen while getting it all out.  After the first treatment, things got easier on Ally and we just continue to clear her airway every other hour.  The chest x-rays are remarkably better already.  Loretta even worked a 16 hour shift to help Ally out (7am-11pm).  Then we had another friend Trish overnight.  We had 2 new nurses (Vera and Rene), but they did WONDERFUL with Ally.  Things are going smoothly with the doctor team too since they all agree with the “Ally PICU Plan of Care” that we created together and have in their computer system. I highly encourage other families of chronic kids to create one of these for when your child needs to be hospitalized.  It includes room set-up, weight/height, medicines, machine settings, detailed breathing treatment plan, feeding/nutrition details, past intubation details, possible team of nurses and respiratory therapists, numbers and emails of doctors involved with Ally’s care, goals that need to be met to get Ally home and continue care from there….

 

So as I said, we hope to have Ally better and home by this weekend.  On Monday, we are doing more training with her Dynavox computer and I highly think we will still be able to do this with all her new therapists and teacher at Stock School. We will need to be even more cautious of germs as we venture out of our bubble, but I don’t regret any things we have done with Ally this spring.  Unfortunately children get colds/bugs and for Ally this often can mean a collapsed lung.  As she gets older she is getting better at handling and having less illnesses, but hospitalizations (since I need some help) will sometimes occur.  I am just VERY grateful for the teamwork that we have established at Children’s Memorial.  It is truly a GREAT hospital that continues to grow in their care for Ally and SMA children.

 

Hope you enjoy the new pictures (on her site or at the bottom of my email).  There is also a link at the side of her website http://AngelAlly.com to a new you-tube video of Ally driving her loaner powerchair on Monday.  She did amazing driving for over an hour and proved she is completely ready for her own.  The paperwork has begun and it will be submitted to the state.  My guess is 3-6 months, or longer, and Ally will be driving her own wheels. 

 

Okay, time to eat.  I am eating lots of fruit, stepped out for a walk with Billy (while Loretta was with Ally), and slept 3 hours the first night and 4 hours last night.  This sounds crazy, but that all is very good for me.  Thanks to Service Decorating for being accommodating to Billy’s work schedule.  Also thanks to Auntie Janice and my mom for helping with the older girls.  We don’t need any extra help with them now, but thanks for the offers.  We will let you know if things change. 

 

Thanks again for everyone’s prayers and support.

It really helps during these more difficult times.

 

Have a great day!

Tina, Ally and Family

5-28-09 school

5-28-09 school

5-29-09 Franklin Park FD MDA Bootwalk

5-29-09 Franklin Park FD MDA Bootwalk

5-29-09 Franklin Park FD MDA Bootwalk

5-29-09 Franklin Park FD MDA Bootwalk

 

5-29-09 Franklin Park FD MDA Bootwalk

5-29-09 Franklin Park FD MDA Bootwalk

5-30-09 Ally and Melissa

5-30-09 Ally and Melissa

5-30-09 Ally and Melissa 2

5-30-09 Ally and Melissa 2

5-30-09 Ally and Melissa 3

5-30-09 Ally and Melissa 3

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 Just a quick update and request for prayers.  Ally is in the hospital at Childrens Memorial in Chicago (picu room 226). 

Ally had a fever between 100-102 off and on for three days (gone now) and extra nasal secretions, starting to turn light yellow.  She was overall still doing well with occasional desats and extra bi-pap/treatments at home.  However, Tuesday morning she started to need tons of o2 during treatments (dropping into the 60s for o2), so we brought her in for cultures, x-ray, and at least one day of help at the hospital.

 

Ally’s left lung is whited out on the xray. She seems to have a little trouble and then boom it’s down.  There is still some air movement, but she definitely needs antibiotics and aggressive breathing treatments (every 2 hours).  She has mostly been on room air thru her bi-pap and oxygen needed during treatments with her cough assist and IPV machine.  We are now bleeding a little in thru her bi-pap breathing machine, but hopefully this won’t last long.  We also had to up her settings on her bi-pap (20/7).

Things are going pretty smoothly at the hospital, well at least up in the PICU (Pediatric Intensive Care Unit).  We spent 5 1/2 hours in the ER (in a tiny exam room) after calling 3 hours before that we were coming in, three pokes with no blood and then they got an IV line using an ultra sound to guide them, and they talked about intubation when Ally is no where near there. But once they were able to get a room up here, things have improved greatly.  A special thanks to Shamik and Michelle for a smooth admission upstairs.  We also have a night nurse and respiratory therapist familiar with Ally, which helps a ton.  Ally’s PICU plan of care makes all the difference too.

I am praying hard that this will be a short hospital stay (less than a week) with Ally getting the right IV antibiotics, aggressive treatments and coming home very soon.  The summer is almost here and this is the time we can usually enjoy being outside and doing fun things.  Of course, when we do this, we are also exposed to germs in the real world.  Not sure what exactly caused this illness, but a tiny bug becomes something big for Ally.  She does not have the flu or RSV, and we’ll see if anything else comes back from their tests. Even a tiny cold can become pneumonia for Ally so it could have been anywhere (school, home from family/friends, or anywhere).  I’m glad we caught it early and hope for the best and easiest stay for Ally.

 

Thanks again for everyone’s support, well wishes and prayers.

Tina

-- 
Tina Krajewski
Pampered Chef & Discovery Toys Consultant
773-283-7211 or 773-981-7211
 tina61775@gmail.com 

Visit my "KITCHEN STORE" 24 hours a day, 7 days a week for new recipes,
to browse our product line, or place orders at www.pamperedchef.biz/tina617
& my "EDUCATIONAL TOY STORE" with on-line catalog at 
http://www.discoverytoysinc.com  ; )

**Please be sure to visit my daughter Allyson's personalized websites**
1) http://AngelAlly.com for updates, pics, videos and more)
2) www.caringbridge.org/visit/allysonkrajewski (Old journal website)
3) http://picasaweb.google.com/tina61775 (see our pics of Ally and family)

Allyson was born 2/2/06 and has SMA Type 1

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