Tim Schmanski's blog

Hello,

Tori had a good night of sleep Monday evening and was calm for the majority of the day Tuesday. We are now leveraging zanaflex more to relax her muscles and it seems to keep her consistently calmer and less agitated.

Tori also had another baclofen pump increase so she is now at 1080 micrograms per day. Since we are at the PCMC we are asking for 40 microgram increases every other day. We are also going to start getting her some OT and OT sessions. She will have her next KUB scan on Wednesday and we'll see if more progress is being made.

That is all for today.

Thank you all,

-Tim

Good evening,

Tori and Maria had an inconsistent night of sleep Sunday evening and early Monday morning. Tori required xanax and zanflex during the night to help her rest.

The KUB scan taken this morning could have been better as well since the pneumatosis intestinalis is still present in her colon... We have now been advised that it may be a long haul before that small section clears up and again, no feedings until it has disappeared. And that is the bad news for the day :-(

Maria spent most of Monday at the PCMC until I arrived in the afternoon. Guy made a stop in SLC so he also stopped in for dinner and a visit tonight and will be spending the night at our home Orem.

Maria and I will now spend alternating days at the PCMC until this whole episode is over. It is definitely harder being here now after having experienced Tori's presence at home for 4 months... We are greatly looking forward to getting her home once more.

Thank you all,

-Tim

Hi everyone,

Tori and Maria spent Sunday together and it was a little rougher for Tori compared against previous days. She required multiple doses of motrin, tylenol, xanax and zanaflex to keep her as calm as possible throughout the day.

They also had several visitors including Toni and Gary who drove up from Delta and Todd and Laurie who drove down from Ogden. Tori also had another baclofen pump adjustment so she is now at 1000 micrograms per day. Even with that amount the tone or stiffness in her arms is still very evident... Other than all of that it was a relatively slow day as we wait for tomorrows KUB scan.

Thanks,

-Tim

Hello all,

Tori slept well once again during Friday night and had a relaxed Saturday with little agitation. Maria, Grandma Harris and the kids arrived in the afternoon and they were all happy to see her once again. Erick stopped by as well and brought some food as usual. Thanks again Erick!!

Tori had her KUB scan late in the morning and the results still show slight signs of pneumatosis intestinalis unfortunately... I spoke with Dr. Stone who is a gastric physician and at this point it would make no sense to try and push the feedings since the main risk is a possible perforation of Tori's colon which would cause intestinal contents to spill into her body. Major surgery would follow if that were to happen. So we will continue to wait of course until the healing is 100%. Once we are at 100% healed, we will probably introduce feedings into Tori's G-Tube and J-Tube since it is still in place and was unplugged by the Specials Radiology team early in our visit. We are still concerned about getting her digestive system working again after alll of this waiting... Patience, perseverance and prayers.

Tori will continue getting TPN and lipids injected into her blood for nourishment. Some good news is that she hasn't lost much weight at all and weighed in at 106.6lbs today. If we can keep her weight up we can avoid any of the dreaded SMA Syndrome we have had in the past. We definitely do NOT want to battle that again... Her antibiotics, zosyn and gentamyacin, will now also run 10 to 14 day courses. Since Tori is getting so much 'liquid' based content she is peeing up a storm and has to be checked just about hourly.

Maria is spending Saturday night with Tori while I get to go home and sleep in my own bed!! YES!! :-) Sleeping on that hospital 'bed\chair' for six nights straight hasn't been very good for sleeping or for my back...

Hello again,

Tori has established a pattern over the last few days of requiring only doses of motrin and tylenol to get her through the day and a xanax to help her get sleeping into the night. She was very calm and relaxed during the day Friday and had occasional naps as well.

Grandpa and Grandma Schmanski paid a visit in the early evening and Tori was in a very good mood at that time. They are leaving town for several weeks and were saying goodbye to Tori for a little while.

Maria and Whitney also made it back from a long week of dance competition and I heard the team did very well and had alot of fun. Maria, Whitney and Brendan will be heading up to see Tori on Saturday.

Tori will get her KUB on Saturday as well and we are greatly hoping and praying that she is fully healed. We shall see. If she is not, we wait some more unfortunately.

Thank you all,

-Tim

Good evening,

Tori was much calmer than yesterday and required only motrin and tylenol for almost the entire day. I had to give her a xanax though to get her to begin sleeping tonight. She also slept very well during Wednesday evening and early Thursday morning.

Tori had her KUB or abdominal scan this morning and it showed that the large majority of the pneumatosis intestinalis is gone but there is still one small segment of her colon that is not quite healed... It is unfortunate but we are not going to risk feeding her through her stomach until the healing is 100% complete. So that means we will have another KUB scan done this Saturday and hopefully, very hopefully, the healing will be complete and we can begin the feedings. So Tori and I are here for a few more days at the least.

Tori and I had a few visitors today that included Tammy, Reed and Parker Hodson (http://www.prayingforparker.com/) and in the evening Alan. It was nice to have a little company today and Tori also enjoyed the movie 'Aquamarine' that Tammy and Reed gave to her. Thank you.

Tomorrow Maria and Whitney will be driving home from Las Vegas where another successful dance competition took place. I'll provide the details when I have them.

Thank you for your thoughts and prayers,

-Tim

Hello again,

Tori was more relaxed today while being awake which was much nicer than yesterday's behavior. She slept well during Tuesday night as well.

Tomorrow she will have another KUB which will determine whether we can begin feeding her once again. I've also been giving her plenty of ice chips to suck on during the day.

Other than that it was a slow day today at the PCMC.

Thank you all and until tomorrow,

-Tim

Hey there,

Tori is recovering nicely and her rest, relax and heal mode ended somewhat today as she was very wide awake and aware. This caused her to be much more agitated than the previous few days because she really knows where she is at now... She also didn't sleep that great during Monday night so that may have attributed to some of the agitation.

Xanax, motrin, zanaflex and even valium had to be administered throughout the day. Her agitation levels went up and down all day as Grandpa and Grandma Schmanski along with Brendan came to visit. TJ, Lorrie and the triplets also stopped by. Erick stopped by during the evening with some dinner which was MUCH better than the cafeteria food lately... :-) Thanks Erick!!

Since we have to wait out the 7 day course of the antibiotics the plan is to give her another KUB or abdominal scan Thursday morning. If the pneumatosis intestinalis is completely gone we will begin slight feedings into her stomach once more. If it is not gone, we will need to wait some more... Let's all hope and pray that it will be GONE.

We will have to left her on a feeds plus TPN diet for a while as her digestive system turns on again. Hopefully we will not have any of the previous issues we have had with Tori's digestive system.

Thanks once again,

-Tim

Hello again,

I was a little worried given all of the sleep Tori had on Sunday but she slept great during Sunday night and early Monday morning. She is definitely in the rest and heal mode that takes over when she is ill.

Today was another slow and restful day. Tori had to have her PIC Line replaced with a double lumen line today... I chose this rather than having more IV lines placed since she goes through them every couple of days. It is easy to replace an existing PIC Line and the procedure took about 15 minutes. But they did have to sedate her again with verset.

They also held off on another abdominal scan today. We will run Tori through the 7 days of antibiotics and scan again tomorrow. The scans will determine when we try feeding her again through her G-Tube. Positive response to the feedings will help us get out of here faster but we all know how sensitive Tori's digestive system is especially when it is 'out of whack'...

Thank you all,

-Tim

Hello,

Tori had a very relaxed Sunday and slept on and off for the entire day. I arrived in SLC after my trip at 10:00am or so and Maria, Whitney, Brendan and my parents were waiting all at the PCMC. Tori was just resting and healing.

Her Sunday abdominal scan showed additional improvement which is the continued direction we want. She is getting TPN and lipids through her PIC Line and is still getting the antibiotics zosyn and gentamyacin. They would like her to now stay long enough to test her stomach with Jevity and water which should occur in a few days. Getting her off the antibiotics and removing the PIC Line would also need to be completed.

Tori is still exhibiting some pain and discomfort at times but that can probably be attributed to the 'empty stomach' feeling that we all have once in a while. Again, she probably still has a few more days before any feeding can begin.

Maria and Whitney left for Las Vegas and I'm not really looking forward to an exciting week of fun at the PCMC... :-(

Thanks again for your thoughts and support,

-Tim