Sunday 6-7-09 Ally doing well, hopefully home soon… 8 am

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