Tim Schmanski's blog

Hello again,

Tori and Maria finally enjoyed an awesome night of sleep during Thursday night!! :-) She was given her medications at the normal 10:00pm time and went to sleep shortly afterward. She also slept in until 11:00am this morning just before her PT session. She keep almost the exact same sleep and wake cycle for two days straight now and hopefully this will be a continuing trend.

Enrique and Cheryl arrived at 11:00am and had Tori sitting and standing once again. They even moved her legs today in a walking fashion. Tori sat in a normal chair and held her head and neck in the correct position. They released her totally for 3-5 seconds while Tori maintained her balance.

Tori had more batches of whipped cream and Belgian chocolate once again today as well as some strawberry sauce. I thought the chile verde burrito might be pushing it a little so I held back ;-) We are now trying to get her more comfortable with a spoon in her mouth by attempting to get her to close her mouth on it. We weren't too successful today with this practice but we are expecting it to improve. Getting Tori to suck through a straw is another challenge we would like to attack.

Tori was thankfully in good spirits again today. She also had some visitors including Grandpa and Grandma Schmanski, little brother Brendan and Mark and Julie. Consistent doses of ibuprofen for her SMA Syndrome related stomach pains were given throughout the day.

The bad news of the day is that tomorrow morning we have another appointment at the radiology department at the PCMC... Her GJ-Tube has a new problem as it has been pulled out of the exterior of her stomach about 4 inches. The round, inflatable disk was pulled right through the stoma or hole in her stomach. So it is now on the outside instead of the inside where it belongs. Peter believes he can place it back where it belongs and secure it in a much better fashion. The x-rays this evening show that the J-Tube is still in the small intestine so that is good news. Peter will have to verify tomorrow whether it is still in a good enough position. Maria believes the GJ-Tube pulled out during her PT session but we aren't exactly sure. She will be wearing a spandex bandage around her waist for protection moving forward. So the ambulance will be at the HSH at 9:00am once again for her 10:00am appointment!!

That's it for tonight and Tori is sleeping soundly as I am completing this update :-)

Thank you all and until tomorrow,

-Tim

Hello everyone,

Tori and I both enjoyed an awesome night of sleep during Wednesday night!! :-) She was given her medications at 10:30pm along with a Valium and she slept throughout the night. Even repositionings and changings didn't wake her. She slept until 8:00am and stayed up for another hour before continuing to sleep until 11:00am.

At that point Rhonda and Cheryl came in to do some OT and PT work on Tori. They did a complete range of motion analysis on Tori's limbs and joints and recorded all of the measurements. Then they sat her up for some time and did several standing positions as well. Tori did not like standing at first but calmed herself down and handled it well afterward.

Tori had almost a full cup of chocolate flavored whipped cream in the early afternoon. I also gave her salisbury steak brown sauce, Belgian chocolate and a green apple sucker. She also knows when you are eating in the room as well and will focus and track you, or the plate very closely :-) We are doing everything we can to get the weight back on her and her feeds are currently at 50ml per hour and being moved up another 10ml per hour every 12 hours. We are taking a slower approach on this because her SMA Syndrome is very painful at this point and we don't want to rush the feeds on her... Her TPN is also being delivered at 80ml per hour though her PIC Line.

Tori was much more comfortable, awake and aware today and it is evident she feels better. We had to give her ibuprofen for her SMA Syndrome related stomach pains throughout the day. She will reposition her hands onto her stomach no matter where you originally put them due to the pain. She also intently watched the entire movie 'Cheaper by the Dozen' this afternoon. In fact, she would become upset if you paused the movie when she got a changing.

Tori also has a new neighbor in the room next to hers. His name is Casey Orr and we met his parents tonight. Casey also suffered a TBI and you can read about him at his BLOG http://www.southernutahdaily.com/. Please offer him and his family your support and prayers as we are.

Thank you once again,

-Tim

Hi there,

Tori made the trip south from the PCMC to her 'temporary home' at the HSH around 4:00pm today. She is settled in nicely after her bath tonight and is looking like she is ready to sleep. Her sleep during Tuesday night was unsettled as her stomach was causing her discomfort and pain.

We still do not know exactly what Tori's issue was but we are going to continue through her 14 day dosage of Levaquin just in case. Her chest x-rays today did show some streaks of cloudiness but nothing to indicate she has a pneumonia of any kind. She might have had a viral condition or bronchitis and those are our only guesses at this point. This whole episode reminds me of our time in the UVRMC ICU because nothing was really positively identified in that case either... Tori's vital statistics are all back to normal though so that is a positive sign and trend to continue.

Tori had her foot splints re-sized prior to leaving the PCMC so she will be able to wear them more consistently once again. Tori is back on her feeds and TPN at this point and for good reasons. I'm NOT very happy to report that at her weigh in tonight she came in at 88.6lbs... We believe her SMA Syndrome is now causing her even more discomfort because she weighs even less than before and when her J-Tube feeds are on she is often agitated. We absolutely must have a good string of positive weeks to get her weight corrected and we are going to be forced to try feeding her through the G-Tube prior to having the additional weight on her.

While at the PCMC I rode the elevator with a woman who looked worn and stated she was very ready to return home with her daughter. When I asked her how long she has been at the PCMC she said "5 days". Needless to say that she was quite stunned when I told her about Tori's length of stay but she thanked me afterward as it caused her to reset her perspectives and count her blessings.

I'd like to also thank all of the PCMC staff for the outstanding support and care provided during Tori's short stay. It is greatly appreciated and you are all incredible!! :-)

That is the short report for tonight.

Thank you,

-Tim

Good evening all,

All of the Halloween activities must have tired Tori out Monday night because she slept very comfortably during the entire night. The technicians and nurses were quick to suction when ever she coughed as well.

Tori continued to sleep late into the morning with her heart rate in the low 90's and her blood oxygen level hovering around 95%. She was so relaxed that at one point she concerned her nurse and I as we watched her respiratory rate go from 10, 8, 7... all the way to 0!! Then she would breath and take it back to 10 again. Seeing 0 on there still just doesn't feel right... But she was definitely relaxed!!

Tori's blood cultures are still negative and the sputum or phlegm sample that I mentioned was positive for a bacteria yesterday was actually positive for a high white blood cell count and NOT necessarily a bacteria of some kind... We still don't know what her infection is or if it is bronchitis. Again, we'll just keep her on the antibiotic Levaquin until we know more.

Tori got to go visit the radiology guy's (Peter, Darin, Paul and Ron) again today for another GJ-Tube placement. They all really do like Tori alot and we are now wondering if they 'sabotage' her tubes so they can see her again ;-) I'm very much kidding on that one... They placed a new 20 gauge french G-Tube, 10 gauge french J-Tube unit into Tori. The placement took about 30 minutes this time with no sedation. We NEED this one to stay in place and NOT get plugged for at least a couple of weeks which would give us the time to get some weight on Tori. I know there will be many prayers out there for Tori's new GJ-Tube to stay working - thank you all in advance!! :-)

Sherrie and Lisa came in today and gave Tori some great stretching on her arms and legs. They hadn't seen Tori in a while and were impressed with her range and her overall progress. Tomorrow they are going to sit and stand her up to see how she does. They were the ones who did this initially on Tori many, many days ago so they are eager to see how well she does.

If all goes well tomorrow Tori will be moved back to the HSH. Stay tuned...

Thanks everyone!!

-Tim

Happy Halloween everyone!!

Tori didn't really care too much for CNA Sande's purple hair and hat this evening... She liked her much better when the costume was removed :-)

Tori ended up sleeping solidly until about 11:00pm Sunday and after that she was sporatic the remainder of the evening. Tori's phlegm is very, very thick at the moment and she does NOT like to swallow it at all after coughing so she has to be sucitoned with the 'yonker' through her mouth frequently. Tori also gave Maria a little Halloween scare during the night after the repiratory technicians and nurses finished working on her. Maria didn't really watch what they were doing so later on during the evening she wondered why Tori was so quiet. When she got up to check on Tori she had a FULL oxygen mask on that completely covered her face!! They had to place it on her because her blood oxygen level wasn't maintaining very well. It came back to the normal 95% or so after a while with the mask on.

Tori's blood cultures are still negative and I also called the HSH and the blood cultures we took there Friday night were also still negative. The sputum or phlegm sample however has turned up positive for a bacteria of some kind... We will keep her on the anitbiotic Levaquin until we know more.

Tori also had yet another GJ-Tube plugging incident and this time BOTH the G and J Tubes plugged simultaneously!! When they took her down to radiology again to check it they found that the two tubes had intertwined around each other inside of her stomach and bascially kinked and plugged themselves... Tomorrow we may just upgrade her GJ-Tube once again to a 22 french gauge G-Tube portion and a 10 french gauge J-Tube portion. The bigger tubes should be much less prone to plugging. The nurses are doing everything right when using the existing tubes but they still tend to plug too easily. Again, at some point we are expecting to just have a G-Tube but until then we need the J-Tube working as well. Tori is still getting her feeds and TPN at this point.

Tori is very relaxed tonight and looking great with absolutely no agitation. She just recieved her 10:00pm medications and she 'appears' ready to go to sleep. She has been awake for the entire day so I'm sure hoping she is tired tonight.

Thanks again all and good night,

-Tim

Hello everyone and thanks for the early morning update Guy.

I spoke way too soon last night when I stated Tori was sleeping because she merely rested her eyes for 10 minutes or so... Tori has indeed broken all of her previous records for staying continuously awake. She went 51 hours straight this time... We have no idea how to explain it of course and she wasn't even agitated during the last 12 hours or so she was up. She could just barley hold one or two eye lids slightly open while her heart rate maintained 120-130 betas per second.

We opted to take Tori to the PCMC last night based on the following symptoms and situations. Tori's heart rate was still in the 140-160 range as it had been for about 36 hours straight. That amounts to an extreme amount of 'exercise' for a large amount of time. Tori's temperature spiked once in the afternoon but that is of course a symptom an infection of some type. Tori's CBC blood test came back with a 21 score on her white blood cell counts. 10 is normal so her body is reacting and fighting something. Tori's phlegm from her lungs also became much thicker and yellow. On top of all of those symptoms, Tori's G-Tube portion became plugged... Not the J-Tube portion this time but the G-Tube portion which is used to administer all of her medications and to down drain her stomach contents to prevent vomiting... Time to go to the PCMC again!!

After a quick and uneventful ambulance ride there we ended up spending another 3 hours or so waiting in the Emergency Room (ER) waiting to get into a Childrens Medical Unit (CMU) Room. I shouldn't complain too much because last time we were in the ER it took about 6 hours to complete this process... We made it into the CMU room just after 4:00am and by the time we interfaced with doctors and nurses it was past 5:00am before Maria and I went to sleep. Unfortunately, Tori decided to stay awake in her new surroundings for a while longer... Maria and I woke around 7:30am and were told of Tori's schedule for the day. We went down for chest and abdomen x-rays at 11:00am and immediately afterward we were able to get her G-Tube unplugged with a strong, metal wire. We even kept one for ourselves for next time :-) As long as the plug is within 6" of the input adapter we are fine to unplug it. After we unplugged the G-Tube we immediately down drained her stomach and to our delight there was very, very minimal output!! We were so fearful that she was building up and would begin vomiting... But she didn't and handled the closed stomach time surprisingly well. We then brought her back up to her room and put a whole liter of Barium in her over the next 2 hours. Then we proceeded back to radiology as they did a digestive analysis. No final word on the result yet but the performing physician mentioned there was nothing out of the ordinary that he could see.

Tori, or Supergirl, finally and truly fell asleep at 1:00pm just before we headed down to radiology. This time her heart rate went into the mid 80's so she was definitely sleeping. She remained that way for the rest of the afternoon and is continuing tonight. Maria is staying with her and confirmed she is still asleep, hopefully until at least mid morning tomorrow.

At this point we still have NO idea on whether the infection is in her blood or in her lungs. We have taken all of the necessary cultures and are waiting for any growth in them. She is being given the general purpose antibiotic Levaquin at this point. She also has her feeds going and her TPN as well so we are hoping to loose no ground on that front.

One last note, when we arrived at Tori's room in the CMU the nurses had our 'chair bed' made with the sheets pulled back and plenty of pillows!! They were looking out for us so well they even had towels in the bathroom already!! If there would have been mints on our 'chair bed' I don't think we would ever leave!! ;-) hehe - Thank you so much CMU nurses for making us feel very welcome once again!!

And thank you to everyone else for your continued support and we are hoping to return to the HSH within a few days. It's now bed time for me!! :-)

-Tim

------------------

Guy's early update:

Sunday, October 30th - Day 133 Partial Update (Morning)

With the daylight saving time change, Tori is pushing to 48 hours of up-time.

Provided Tori's Complete Blood Count (CBC) test results last night, Tim decided to move her to PCMC. Her white blood cell count was really high which typically indicates high physical and emotional stress accompanied with infection fighting.

Sophie and I were watching the most humorous French movie when the phone rang around midnight. It was Tim trying to get hold of Maria. He kindly asked that we get in the car and provide wake-up service to her. Calling him back 4 minutes later as we were crossing state street, he said that he finally got through to Maria via Whitney's cell phone.

Poor Maria had to force herself awake and drive up to HSH so she could accompany Tim and Tori to Primary.

Tim called and told his father this morning around 10am that Tori was apparently more comfortable. They decided to give her antibiotics to help her fight the potential infection.

With less than 2 hours of sleep from themselves, Tim and Maria are wrestling for room on the one coach in Tori's room.

I am certain that Tim will update you later on during the day on Tori's condition.

Take care,
-Guy

Hi there,

Tori has finally went to sleep after being up for about 36 hours straight... She didn't sleep at all for Maria Friday night and just barely went to sleep at 9:00pm tonight. It was a very long night and has been a very long day as well. Tori has been very, very agitated lately and we cannot figure out exactly why...

Maria tried multiple Valium doses and Dilaudid Friday night to no avail. Tori is very tense and rigid and her rate has been running between 140-160 betas per minute virtually all day today. All of her other vital signs are great but she did have a slight fever this afternoon. We are unsure if it was just related to her hours of agitation or not and her temperature was high for a very short time. We have taken numerous phlegm and blood samples today and have started her on an antibiotic as a precaution. We sure hope and pray there is no infection and we have been extremely careful around her new PIC Line. Gloves and masks only and it has been wrapped and cleaned each day. The site doesn't appear infected at all so hopefully we are still safe.

Now we are just waiting for the various culture results to come back. We also started giving Propanolol to Tori again which slows her heart rate. Last week we had to remove it because her heart rate dropped into the 50-60 beats per minute range. From one extreme to the other I guess... Tori also slightly vomited a couple of times today but the amounts were very small and we were in the room when it occurred. We do NOT believe she aspirated. She is still having stomach troubles even when we are clamping her stomach drain for no more than a half an hour after giving her medications. Her feeds and TPN are continuing and have not been altered.

I sure hope she continues to sleep tonight. She is totally exhausted again and will probably end up sleeping for a day to recover just as she has in the past. She did have OT, PT and ST today and did pretty well considering how tired she was. They basically did stretching only and she had various flavors of suckers as well.

I've been researching the agitation aspects of Tori's new behavior and in many cases it is an expected phase of the TBI recovery cycle. As patients start to become more aware of their environment and perhaps situation they may become agitated and have great anxiety which is understandable. They may also exhibit violent tendencies. It is also important to watch for signs of depression and treat it accordingly during this phase. We shall see what all of this means for Tori.

Thanks again everyone and let's pray that Tori has a calm and restful time tonight and tomorrow.

-Tim

Hi again,

Tori and I both slept great last night!! :-) Tori didn't wake up until 10:30am when Maria arrived. Miracles also DO happen as her J-Tube stayed in place for a whole day!! ;-) The TPN administration is continuing ahead so we are hoping within a week to have finally have some weight on Tori.

Tori ended up having full OT, PT and ST therapy sessions which was nice to see once again. She was stretched greatly, sat up and stood up today and did surprisingly well based on what she has been through over the last week or so. She had some pudding and suckers today just prior to her becoming tired of having therapy... She was agitated at times today and had a nap form 3:00pm until 3:45pm. We are hoping she will sleep well again tonight for Maria.

All of the nurses have been extremely cautious in giving her medications through her GJ-Tube and no one really wants to be the next to plug the tube... We are also having all of them wear gloves when working with Tori because of the PIC Line and our great desire to avoid any infection.

Kourtney and Michelle visited Tori today and Guy and Sophie are with Maria right now. That is the very short, quick and early update for today!!

Thanks!!

-Tim

Hello everyone,

Tori had a long, long Wednesday night and didn't really fall asleep until 5:30am or so... Maria and I also didn't really sleep until then either. Tori's stomach seemed to be hurting her greatly and not even motrin and valium could help her.

Since she fell asleep so late she actually kept sleeping during the ambulance ride to the PCMC and through the J-Tube repositioning as well. The radiologists ended up just unplugging the J-Tube already inside of Tori by using a thin wire. Then all they had to do is reposition it back into the small intestine and past the blockage caused by Tori's SMA Syndrome. Peter moved the J-Tube even farther than he did yesterday. He also mentioned that if the J-Tube could even stay in place for a week Tori's stomach acids would act on it and make it much stiffer and less prone to slip back out of the small intestine. We also discussed other alternatives because we can't just keep coming back to the PCMC several times each week for this... One major solution would be to perform an intestinal bypass surgery which would eliminate the SMA Syndrome by routing completely around it. I spoke with the GI surgeon on this one again today and we are just not that ready to jump into something this drastic. So we went with the next best option which was adding a new PIC Line into Tori's right arm. The PIC Line runs from her arm all the way to her heart. We will provide Tori a steady stream of TPN through this line hoping it will help her gain weight quickly. It will run in conjunction with the feeds moving through her J-Tube as well. The major risk with a PIC Line of course is infection and Tori has several of those before... But we have to take the risk at this point because it is just vital to help Tori gain weight!! If the J-Tube happens to slip again we will just add an NJ-Tube through her nose as a fix since we can place that immediately at the HSH. Next week we are also planning on placing minimal amounts of feed into Tori's G-Tube as well as her J-Tube. This is to try and acclimate her stomach to food once again. ALL medications will be given through Tori's G-Tube as well so the risk of blocking her J-Tube with medications is eliminated.

Tori finally awoke at 2:00pm today when we arrived back at the HSH. She obviously felt much better and we agave her a nice, hot bath prior to the Halloween party activities they had here tonight. Maria even dressed Tori up as a pink bunny complete with the ears attached to her head!! :-) Whitney and Brendan arrived as Scobby Doo's Thelma and Anakin Skywalker respectively. They had a great time with all of the fun activities going on tonight.

Tori began sleeping very soundly at 9:30pm or so and now it is my turn. Hopefully she will get a solid night of rest and be prepared for more intense therapy tomorrow.

Thank you all once again for your continued love, prayer and support,

-Tim

Hello,

Tori slept all night and I reset her low alarm to 65 beats per minute and it never went off. At one point Tori 'yelled' at me loudly twice and after I scrambled to get my glasses on to see her she was just wide eyed and staring at me. I'm quite confident she was just trying to get my attention as I slept in the other bed beside her.

We both woke up around 7:30am and took off in the ambulance headed toward the PCMC for our 9:00am, new GJ-Tube placement. Upon our arrival Darin, the radiology technician, informed me that he was misinformed on the new GJ-Tube and that the J-Tube portion of it was only a 6 french gauge which is quite small. So Peter, the radiologist sometimes referred to as 'MacGyver' due to his custom tube creations, disassembled the new GJ-Tube and placed in it a new 8 french gauge G-Tube. A 10 french gauge would have been optimal but they didn't have one in stock... It took about an hour to build the new GJ-Tube and about 15 minutes to place it and afterward we headed back to the HSH. Tori did have to be sedated for that procedure.

Now the bad news which no one will believe... We immediately started her feeds upon returning to the HSH and Tori's stomach was definitely upset as it normally is after a new GJ-Tube placement. Again, the placement is rough on her with all of the tube poking and moving that happens during that time. Tori ended up vomiting slightly and had some dry heaves because we were keeping her stomach very drained. We managed this fine until exactly 7:45pm when we noticed feed in her bilious output once again... Yes, we believe the J-Tube portion has slipped out once again and this is about the 3rd time it has almost immediately slipped out after the initial procedure. So I called the PCMC tonight and told them that Tori WILL be the first person seen tomorrow morning... So 9:00am it is once again... The whole continued GJ-Tube fiasco has really frustrated us and it is beyond getting old... Unfortunately, until her stomach can handle food on it's own it is about our only option :-( We will see you again tomorrow Darin and Peter!!

Tori had an ST session after we arrived back at the HSH when she was still feeling well. Cheryl was giving Tori half a spoonful bites of chocolate mousse pie!! Tori would diligently chew, position and swallow the pie. So the bites and chewing is coming along nicely so if we can just get her stomach in working order we will be set. I also fed her some more Belgian chocolate tonight to help ease her pain and calm her down. We all know chocolate is great for that purpose!! :-)

Once again, please pray for and hope for the best tomorrow.

Thank you all,

-Tim