Sorry it has been several days since I upated as I know some of you have been waiting patiently to know if Ally is better. Unfortunately the last couple of days have been quite the bumpy rollercoaster ride for Ally, and especially me. Ally began more fevers, that have spiked to 102, and stayed consistently at 99-101. This meant that we needed to poke her (only 2x though) to get an IV to be on stronger antibiotics. They are still mostly thinking this is viral, but she has grown a small amount of pseudomonus, strep pneumonia (different than strep throat) and the staph aurous has grown MRSA again. We are now treating the first two with ceftaz antibiotic and have left the MRSA alone since they don’t think it is causing all the trouble.
Unfortunately, depending on the shift of docs, hospitalists, nurse practicioners, nurse management and respiratory managers, things have been MUCH more stressful than needed. Not everyone remembers or seems to care that I am an equal part of the team caring for Ally. I know that everyone is trying to get Ally healthy and they have some great medical experience to help her, but ultimately I am in charge of making the final decisions that affect her life and I MUST advocate to have consistency in care. I won’t go into too much detail, but I will say I am grateful to nurse practioner Shamik, fellow Scott Wise and some others for taking the extra time to discuss Ally’s care with me in great detail and I am grateful to those that look at this from a family prespective of what it’s like to be in the hospital with a child that may one day die of respiratory failure.
Overall, the good/great is that Ally has remained more stable, not using any oxygen between treatments and she is in mostly good spirits tolerating her treatments and enjoying her movies, cards, music therapy…. One reason why Ally has stayed stable and is improving (finally) is that she has had mostly the same nurses and respiratory therapist caring for her. This is one of the most important thing when in the hospital, so I can get a little break and true help. It also makes it easier and less stressful for Ally. I have had to do a ton of the coordinating myself, but this is also improving. A HUGE thanks to RN director Kathie Seerup, RN mgr Lora Byrne, RT director Anne Pollito, RT manager Tracy and the nurses and therapists who understand why a consistent team is needed and have taken the extra steps to ensure the hospital staff do their best. I’d name all the EXTRAORDINARY, OUTSTANDING nurses and therpists who have been helping Ally and I, but I’m aftaid to forget someone. If reading this, YOU know who you are — Thank you for all your efforts and even friendship!!!!
Ally had a much, much better day on Wednesday and her left lung is finally opening up and secretions are getting better. Fevers are still there, but Ally is on IV antibiotics and stable. My “new” hope is to go home Friday, Saturday, or the latest Sunday afternoon. I could possibly handle this at home immediately, but I don’t want to be the person to cause Ally to have a setback. I need and greatly appreciate the hospital help in caring for Ally when she is this sick. We are going on Day 8 in the hospital and I couldn’t have kept up at home with this round the clock care. I am now, SICK again. I did make it to an immediate care center and do not have strep, but the doc did give me an antibiotic to be cautious. I’m also drinking lots of hot honey/lemon water, taking mucinex and lots of tylenol, motrin and throat lozengers. I have faith that Ally and I will both be better really soon. If this happens, I am VERY, VERY excited to be chaperoning on a field trip to Navy Pier’s Shakespeare theatre with Kristyn and the junior high on Monday.
If you haven’t checked out other blog/jounal entries, they can be seen on her website www.angelally.com The 2/15/10 entry includes some nice pictures of Ally and how we are doing at the hospital (she actually looks really good for someone with a severe illness). If you haven’t heard from me in awhile, you might check to see if I updated her this website and you can also sign up for automatic email alerts when I update on her site (right column, near the top).
In addition to pictures, in the 2-15-10 blog, is also something super COOL and informative. There is a link to Dr. Schroth’s, pulmonologist specializing in SMA, presentation with video and slides on Respiratory Care for kids with Neuromuscular Diseases. She presented it to a medical group at Nationwide Childrens in Columbus, OH. I HIGHLY recommend this to anyone in the the medical field and parents. Let me know if you view it. Respiratory Care Options For Children With Neuromuscular Weakness
Here’s another link with a short video about Dr. Schroth and Madison’s philosophy on caring for SMA children to give them the best quality of life possible. http://www.uwhealth.org/video/beyond-expectations-the-sophia-doebbert-story/26423 It includes an SMA Type 1 child over the age of 6, Sophia Doebert, and her family. No family should be told upon diagnosis of SMA to let your child go to heaven and that nothing can be done. Sophia’s mom once called me during an illness to help Ally out and I enjoy doing that for other families too. I have high hopes that Childrens will continue to grown in its care for SMA children and always present options for families to choose from. Please say a prayer for Emily Rios who is type 2 SMA, 2 years old, and is also in the hospital here at Childrens Memorial of Chicago. Also prayers for anyone suffering an illness right now.
We have absolutely wonderful friends and family praying for Ally. Once again, some of you have asked what you can do to help Ally or our family. Most important is your prayers and well wishes. My mom and Billy are taking care of Melissa and Kristyn, and they are doing pretty well and visiting every couple of days. If it snows, my mom is unable to drive the girls due to her spinal fusion healing, but so far she is doing wonderful handling them and feeding them. Something that can be difficult while in the hospital and soon after discharge is meals. I do not want my friends to ever feel obligated, but if you ever want to send a meal to the house during or after hospital stays, it is one the most helpful and kind things that can be done for our family. I also talked with the hospital social worker and she suggested that family and friends might be able to help with Meal giftcards for places around Childrens or our home. We can go there for a mini break or have them delivered to the hospital/home. We are unfortunately stuggling a little financially and it gets worse with Billy working less hours while Ally is in the hospital and then add gas, parking, and take out food, it gets super tough. Not sure the best way to work out meals, but I will try to make a list of places we tend to order from when in the hospital with numbers. Some that quickly come to mind are Nesh, Bougeois Pig Cafe, Starbucks, Dairy Queen, Pita Pit, Chiptole, Subway, McDonalds, Bacino Pizza, Thai Bowl, Pasta Bowl…. really anything. The social worker said some places may allow meals or meal cards to be purchased on the telephone with a credit card.
Again, prayers and well wishes is what is MOST IMPORTANT, but since some have asked, I will swallow some pride and give the meal idea, with the encouragement of our social worker.
Thanks again for your friendships, prayers and support.
Off to nap since it seems the Tylenol PM might be kicking in.
Tina, Ally and Family
PS – If you’d like to send Ally a FREE card, go to https://secure.childrensmemorial.org/ecard/default.aspx
She is in room 226 – Ally Krajewski. I read every card to her and they brighten our days!
Angel Ally Blog - SMA Type 1 
Still praying for her to recover from this infection and praying for all of you as well . Hope you are better soon as well.