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Sunday, July 10th - Day 21

Submitted by Tim Schmanski on Sun, 2005-07-10 22:24.

I cannot believe it but today marks Tori's third week of staying in the PICU (Pediatric Intensive Care Unit) at Primary Childrens Hospital. I can distinctly remember speaking with several families during our first couple of days there who had already been in the PICU for three or four weeks and I thought to myself 'That is unimaginable?!? How in the world are they handling it so well?!?' Now here we are and Tori and the rest of us are probably the most senior 'veterans' of the PICU. Unfortunately, and most definitely, it is NOT a label or title that is wanted by anyone... We have met so many wonderful, loving and caring people during our stay in the PICU and we have also seen, experienced and learned so much about life and the challenges it presents. To put it very bluntly, there are many children who do not make it out of the PICU... I honestly wish that everyone could spend ONE DAY in the PICU to realize how fortunate they are. I truly believe the experience of just being there for that day would be life altering for everyone.

Unfortunately for us, Tori's day was not nearly as pleasant as yesterday. She had a continuous fever throughout the day and it reached a temperature of 39 degrees Celsius or 102 degrees Fahrenheit. The air conditioning has also been very poor in Tori's current room and the temperatures hovered close to 80 degrees or more inside. We have been battling this for a couple of days now and we are demanding that it will be fixed tonight or we are moving rooms!! Tori also had her respirator removed very early in the morning so her breathing was already very hard when we arrived today and her blood oxygen level ws low as well. Tori was sweating badly and it was very evident she was uncomfortable and restless throughout the day as well. No smiles to speak of today... Only an anguished face and tears... She continues to have a lot of mucus in her lungs and she either coughs it out or gets it sucked out and she likes neither of those options. Tori also seems to realize that there is painful area in her neck where the Trach is. She now has the power in her arms to swing them up to her neck and at times she has actually hit and knocked off the ventilator... This is something new that we must be very aware of and watch for.

The doctors are now trying to figure out what is responsible for her temperature rises. They are doing blood samples as well as mucus and stool samples to try and identify any 'bugs' she may have. There is also the possibility that the fevers are the onset of 'Thalamic(?) Storms'. Thalamic Storms can occur in patients with neurological injuries and they typically are comprised of fevers, shaking and the arching or locking of major muscle groups. They usually happen within two to six weeks of the injury, they are normally temporary and they CAN be treated with drugs. Keppra can also hide the symptoms of Thalamic Storms and since we are now set at 0% Keppra perhaps some new symptoms will appear. Tori will be re-evaluated tomorrow and all of the test results will be in hand as well. Let's all hope and pray for the best here as we are entering new territory in Tori's recovery.

I will close tonight on a positive note though because when Guy and I finally left at about 8:30pm tonight, Tori was MUCH MORE relaxed and comfortable!! She was connected to the ventilator, breathing very nicely, had a normal tempurature and she was fully awake, aware and calm. Hopefully she will get a full night of rest and relaxation and be ready to go again in a positive direction tomorrow!!

I've done alot of reading lately and I have received plenty of advice that there will be GOOD DAYS and BAD DAYS regarding any neurological recovery. This is to be expected and it should not be a surprise to anyone. I just want to clarify this to all of you monitoring this site and please realize that there is a long, long and unknown road ahead for Tori.

Thank you again everyone,

-Tim

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As a regular visitor to PCMC

Submitted by Trudy Peterson on Mon, 2005-07-11 15:28.

As a regular visitor to PCMC I saw many cars with Pray 4 Tori on the windows, so I decided to visit the website. I would like to share a few feelings with you. I too am a veteran to the PICU. The love of our life, Ryker, has spent most of his life in the PICU. Ryker is 16 months old. He was born at 2 lbs and now weighs 16. He has Down Syndrome which brought with it many complications including a Pacemaker, Trach and 15 surgeries. The past 16 months have been the most challenging time of my life. At first, I remember asking God why were we going through this. Did we do something wrong, are we being punished, why..why..why? Now I ask, why are we being blessed so much? Through this trial, we have been overwhelmed with the love and support we have received. As you probably know, there are so many good people out there who are willing to give in so many ways! The PICU is our second family and I am so thankful for those who have dedicated their life to serving others. I too have witnessed death and much sorrow during this time. I always tell others if they are feeling low, visit the hospital, sit in the waiting room, or walk the the PICU halls because you will always find someone worse off than you and your problems will then seem small and insignificant.
It is comforting to know the promised that we are not given more than we can handle. Sometimes we question it, but I KNOW it is true. I wouldn't trade the past 16 months for anything even though we have much more to face. I have never felt the Spirit more in my life. I know that when Ryker is hooked up to millions of machines and not awake, that he is being rocked and comforted in someone elses arms. I can feel it. It hurts more than anything to watch your child suffer, but I know there is a reason. I feel he selected this trial as a way to help others. I know he has helped our family and at times we feel inadequate to be his parents. You cannot be by Ryker and not feel something special. From reading your website and the comments there, I know your daughter has the same special abilities. Through this experience, she has probably helped and strengthed more people than you will ever know. Trials bring a new outlook to life. As with anything, you have two choices- Accept it and make the best of it or don't accept it and know you will never be at peace. My prayers are with your family. Life will never be the same...there will be many ups and many downs, take it one day at time. Rely on others. They are hurting too and by serving you, it will help bring them the comfort they need as well as the help you deserve. During those times when you feel empty inside, notice the many opportunities placed before you that help bring that warm feeling back into your hearts. This is what I found when I read the many inserts from your website. My heart is once again full of joy as I see so much love and support others have to offer. How true they saying is, "I didn't say it would be easy, only worth it." All my love, Trudy

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Thank you so much Trudy

Submitted by Tim Schmanski on Tue, 2005-07-12 00:20.

Trudy,

I greatly appreciate your beautifully articulated posting and I totally agree and relate with the observations of your experience. I promise that I will also heed and take your advice to heart. I am expecting that I will have to revisit your post numerous times as obstacles and challenges begin to mount during our journey. Thank you so much again and I wish you, Ryker and your entire family the very best!!

Sincerely,
-Tim

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We appreciate the daily updates

Submitted by Julie Pittman on Mon, 2005-07-11 12:03.

Tim:

I am sure you have heard this from others, but I want to let you know how important the updates are to me. I look for them daily. I have friends and co-workers that ask about Tori and I have directed them to the site, as well as informed them from your updates. I have read and looked over every inch of the website. I greatly appreciate yours and everyone's efforts to keep the lines of communication open.
We are so happy to hear about Tori's successes and improvements. And, yes we realize there will be backward steps with forward steps and an unknown road ahead.
I have printed out one of Tori's pictures and posted it in my office. Everyone comments how beautiful she is. The photo has been a great way to ask others to add Tori to their prayers.
We think about all of you daily. Matt asked me to pass on his support as well, he's not hooked up on-line yet at his new job.

Love to you all, from Minnesota,

Julie Pittman

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