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Hello again,

Finally!! Tori decided to give herself, Maria and I a much needed GREAT night's sleep last night!! She also only had one dose of Hydromorphone and one dose of Valium at around 11:30pm Thursday evening. She then slept very comfortably and silently until about 8:30am this morning and we did too!! We are hoping for the same result tonight as Guy and Grandma Schmanski are taking a shift while Maria and I head home with Brendan and Whitney. We will hope and pray their night will be as nice as ours was and I prepped the nurses on 'Tori procedures' before we left tonight :-)

Tori's mid section doesn't seem to be causing her nearly as much pain and discomfort as the past few days and we initiated a slow 10 milligram per hour continuous feed around noon and Tori was still holding steady when we left the hospital at 9:00pm tonight. The Antibiotics still seem to be working on her E coli bacteria and on her Pnuemonia since her lungs are sounding much better as well. Tori also had an excellent physical therapy session this morning and her muscle Tone and Spasticity are holding up very well. The physical therapist team also upped her dosage of Baclofen to try and rid Tori of the minimal Myoclonic Jerks or newly diagnosed Dystonia. The physical therapists are unsure of which one it is at this point... Luckily, both conditions are treated with the same types of medications including Baclofen and Botox. Dystonia occurs generally with injuries to the Basal ganglia which is Tori's primary area of brain damage according to her MRI. Again, we believe Tori could be totally calm, comfortable, aware and awake if she didn't have either of them... I also found the following information on the internet concerning Dystonia:

In preparation of our annual Schmanski Reunion tomorrow, July 30, I printed some of my favorite photos from this website to take with us to share with others - a photo of Tori, Guy and "Ma" Schmanski at the car wash, Tim and Maria in France, Tim and Whitney at the car wash, and Tim at his laptop at the hospital. After reading Guy's very touching "Tori's Story", I was compelled to read Tori's story in it's entirety from Tim's blog. How strong she is and she has come so far. You are all so strong and I am so proud of you! Thank you, Guy, for the wonderful story. You are truly a gift to our family. If "Ma" Schmanski (Sandy) thinks you are good enough for this family, that's good enough for me. Consider yourself a nephew, if you accept it. All our love. Rest well all of you. God speed peace to you. LOVE YA TORI! Love, Auntie Jill and Uncle Donny

Hi All! Mornings seem to work better for me as I can get your latest update. Thank you again for your entires. I know it takes precious time that you have little to spare. I am praying today that Tori has a better day and gets some much needed rest - as well as you and Maria. Family reunion is tomorrow and I'm sure you know we will all be thinking of you! I know you will feel the hugs, kisses, thoughts and prayers from all of us. Love to Grandpa and Grandma Schmanski. All our love, Auntie Jill and Uncle Donny

Tori's first night in the CMU turned out to be a long one for not only her but for Maria as well... Tori basically was in pain and crying all night and all of her medications seemed to have zero effect on her. The multiple doses of Valium and Tranxene didn't touch her at all very early this morning either. Tori's stomach and overall mid section was tensed up and painful for her for most of the day. She was agitated and had more Myoclonic Jerks throughout the day as well. Tori was up for 18 hours straight before we had to use Hydromorphone which is a cousin of Morphine without the nauseating side effects. It finally did the trick and Tori slept for a good 5-6 hours this afternoon. When she woke up the discomfort in her mid section seemed diminished so it hopefully the antibiotics are finally taking effect.

Tori's late night feed yesterday caused her much of her discomfort so all feedings are stopped again until the E coli bacteria is gone.

Tori has been relatively calm throughout the night and we are about to give her some more Valium and Hydromorphone to ensure we all sleep tonight. Both Maria and I will be staying in Tori's room as well. Tori's Myoclonus still does have us a bit concerned and we are going to meet with the Therapist tomorrow morning to discuss additional Baclofen and a few other drugs I have researched on the internet today. We believe Tori would have been totally calm, comfortable, aware and awake tonight if she didn't have the Myoclonic Jerks...

Maria and I met Samuel and Kaylene's parents tonight in the hospital cafeteria. Samuel is a two year old near drowning patient who is in the NTU and Kaylene is a 6 year old near drowning patient who is still in the PICU. Both families have been in the hospital for 7-12 days and it was nice to share some of our experiences with each other. There are similarities and differences in each of our cases but we are all hoping and praying for the best.

Hi Maria and Tim Our Family wanted to let you know that we have been praying for Tori and we wish her the very best I hope that you and Tim are taking care of yourselfs also. Thank you so much for the web page so that we can fallow Tori's progess. that means a lot to us. we love you and GOD bless you and Tori. Love AUNT EMMA LOU

I was overcome yesterday by your events, feeling helpless. No words of consolation seemed to be appropriate. Having read Tim's last entry, it appears my prayers were addressed -- give Tori a peaceful and restful night, and her Mom and Dad too. Thank you for giving us daily news; we really do appreciate it. Stay strong and take care of yourselves - Tori really needs you. We will keep our thoughts and prayers focused on you - as always - today and every day. Hope this is a good day for all. Love, Auntie Jill and Uncle Donny

Hello again,

Tori has made another move within the PCMC. She was relocated today to the CMU (Childrens Medical Unit) on the 3rd floor. This unit is a step up from the PICU and we hope to stabilize Tori during the next 7-14 days. Our main goals are to eliminate the E coli bacteria in her blood, get the minor Pneumonia corrected in her right lung and to get her digestive tract totally functioning normally again. If we can just get those three items done without ANY other backward steps, Tori could finally be in a 'stable' condition. Then we can focus on the Physical and Occupational Therapy at either the NTU or the Health South Hospital.

Tori's sleeping habits throughout the past few days remained intact today. I only had to give her Benadryl and Valium last night to keep her calm, relaxed and comfortable. Today, just as yesterday, she would open her eyes occasionally for about 10-15 minutes then close them again to sleep. We are quite sure the E coli is causing her severe stomach pain so we are giving as much pain medicine as we can to combat it. Nothing too strong, mainly Tylenol, Benedryl and Valium as needed. We also began a very slow feed today of Pedialyte through the NG Tube in Tori's nose. We stopped the feed late this evening to see how Tori will digest it and we are hoping for the best.

At times today when Tori was awake, she exhibited some agitation and as well as some mild cases of Myoclonus episodes. There would usually be one 1, 2 or 3 Myoclonic Jerks per episode and they weren't nearly as extreme as they have been in the past. We have found that if we try and talk Tori through them and keep her as relaxed as possible she can sometimes make it through without any facial grimmaces or observed pain at all. Keeping the vicious circle of agitation, anxiety and Myoclonus under control is the key goal here. Again, she never got even close to how bad this was in past episodes... Tori's legs appear to be the least affected by the Myoclonic jerks which is another great sign. They mainly effect her arms and torso at this point which do not appear to be as painful as her legs were. So either Tori is too tired and sick to really respond to the Myoclonus episodes at all or all of the medication to prevent them is having some postitive effects. We are of course greatly hoping for the latter to be true... We shall see.

Tim & Maria, We know you are going through one of the worse things in life to see your child so ill. May you gain even more strength also to help her. It's difficult to read about her bad days and then it makes us happy to read of the improvements-especially with this latest infection. So we can only imagine what all your ups and downs do to you both. They know so much more about e-coli now, thank God. She has to get well-she's fighting too. Our prayers,love,and strength to you all. Aunt Shirley

Good evening,

It was determined early this morning that the bacteria in Tori's blood stream is E coli. She more than likely was infected when she aspirated after vomiting which caused stomach or small intestine content to enter her lungs. As I mentioned in yesterdays update, two Antibiotics have been given to combat the E coli and they will be continued to be given for 10 days. Blood samples will be drawn each morning to check for the presence of E coli. The antibiotics are expected to clear the E coli up within 3-4 days.

Tori's temperature remained in the normal 37 degrees Celsius range all day today which is a good sign. She is obviously using all of her energy to fight off the E coli because she is resting and sleeping quite a bit. She will only open her eyes for 10-15 minutes before returning to sleep for a few more hours.

During the last few days since the E coli infection, Tori has not been getting enough fluids so she was very dehydrated. We have been pumping fluids into her as fast as we can today and she is looking much better tonight. Her input and output of fluids is pretty much back to normal again.

A CAT Scan taken at 4:00am this morning has narrowed Tori's digestive issues down to an inflamed Duodenum. She has recieved medication to help with this issue and the fluid coming from her stomach then out of her G-Tube is no longer dark green or black colored as it was yesterday. The fluid is a much more normal looking light green. Based on this improvement Tori will begin getting feeds again later tonight and she is in dire need of them. Her weight has dropped to around 100lbs...

I am deeply grateful to all of you hard working girls for doing this for Tori. And look at Brendan - workin' just as hard as anyone! I just finished the wonderful car wash photos (Guy, if you are responsible thank you so much -- I felt like I was there with them!) You are doing so much for our family, I don't know how to thank you enough. Tori is going to be OK. My daily prayers ask that she have peaceful and restful days and nights, as well as Tim and Maria. Good night to all and God bless. All our love, Auntie Jill and Uncle Donny