Tim Schmanski's blog

Hello,

Tori's recent sleeping patterns have concerned us somewhat. She fell asleep Monday afternoon at 5:00pm and really didn't wake up for an extended period of time until 4:00pm today... Her heart rate Monday night also dropped to 48 beats per minute at one point but hovered around 55-65 beats per minute most of the time. This is real unusual for Tori and we haven't witnessed this at anytime during the 128 days since the accident. All of her other vital statistics remain great!! She has not had a fever at all either. She is just downright sleepy and lethargic. We are now presuming it is related somehow to her NOT getting any feeds since basically last Thursday night. She just has NO energy at this point... Again, the IV is providing her the essential nutrients but that approach is only good for a week at most and we are at day 5... We have now removed Tori's propanolol medication since it is designed to reduce the heart rate and we surely don't need that right now.

We are still on for the new GJ-Tube tomorrow at 9:00am so we will be leaving the HSH for the PCMC at 8:00am. The correct GJ-Tube IS at the PCMC so we should be ready to go upon arrival.

Since Tori was energy-less today her therapies were not very interactive... ST didn't happen because we couldn't wake her up and OT and PT consisted of some great stretching since she was totally relaxed and sleeping as well.

Tori did wake up and visit with Maria, Todd, Alan and I around 4:00pm today and she remained awake until 8:00pm or so. While she was awake her heart rate was in her normal 110-120 beats per minute range so that was good to see. I'm watching her sleeping now and her heart rate is between 80-95 beats per minute which is her normal, sleeping soundly range. I've set the monitor's low alarm for 75 and I hope it doesn't go off tonight...

While Tori was awake I treated her to some of the Belgian chocolate that Alan brought back from Europe and boy did Tori love it!! :-) I would crumple up some tiny chocolate crumbs and place them on her tongue and she was working it to the back of her mouth to swallow faster than we have ever seen her!! I had to stop after a while because I thought too much would make her sick and she showed her displeasure by grimacing at that decision... I think we need to satisfy Tori's chocolate cravings to the maximum because it will be a great weight enhancing activity :-)

Alright everyone, please pray for and wish for all of the luck possible on Tori's procedure tomorrow!!

Thanks,

-Tim

Hi,

Tori thankfully slept Sunday night!! So both of us recovered a little bit. It would take Tori a few minutes to fall back asleep after a repositioning or changing but for the most part she rested quite well.

I called the PCMC first thing this morning and told them the sooner we get a new GJ-Tube the better because Tori is NOT getting any feed since her current J-Tube is plugged. She is only getting fluids and nutrients through her IV at this time. We the new GJ-Tube finally arrived at the PCMC it turned out to be the wrong one... It was a 18 french gauge tube and Tori needs a bigger 20 french gauge tube. The larger tube will work much better since more can go through and it won't plug as easily. So a new GJ-Tube was ordered and it will be here tomorrow but since Peter is busy in a conference all day tomorrow the procedure unfortunately won't happen until Wednesday morning at 9:00am. So we will wait some more...

The great news is that Tori seems to be feeling back to normal and is aware, alert and active just as she was before the vomiting episode. She participated in OT, PT and ST today and did very well!! While she was sitting in bed the therapists and Maria were asking her to kick with either her left or right leg and Tori would respond accordingly with a nice kick!! She also wiggled her toes on command. Those feats may seem minimal but they definitely aren't - they are monumental and show that Tori's ability to understand is indeed intact!! Tori will also relax her muscles when she is asked which is another positive sign. Tori also had some more whipped cream today but she was ready for a nap during that ST session and didn't want to participate much.

Tori took a very, very sound nap this afternoon from 5:00pm until now so hopefully she will sleep some more for Maria tonight. The nap was so sound that Maria was able to clip all of Tori's finger and toe nails and she placed Tori's hand splints on as well. When Tori is awake that is typically a challenge. That is the early and short update for tonight!!

Thank you all,

-Tim

Hi there,

Tori decided not to sleep at all on Saturday night and I took care of her for the night while Maria tried to sleep and recover from Tori not sleeping for her the previous night... She probably slept this morning from 6:00am to 10:00am is all and she is watching me type in this update right now. She does appear to be on the verge of finally sleeping though. I can only hope because I'm on the verge myself...

Tori's current demeanor and behavior are mostly normal meaning she doesn't appear to be sick at this time. She was not lethargic and was quite alert and awake all day. Her vitals are still doing great and she hasn't had another high temperature. All of her cultures are also still negative. Her stomach is now handling the medications we are giving quite well and we leave her stomach clamped for 20-30 minutes after administering them. When we reopen the drain very, very little bilious is drained.

Tori also didn't get any PT, OT or ST once again today since she was sleeping during the morning when they all came. We didn't really want to wake her at that point. Maria and I gave Tori a well deserved bath this afternoon just prior to Whitney, Brendan, Guy, Sophie and Grandpa and Grandma Schmanski's arrival. Tori enjoyed it of course and was fully relaxed for the visiting afterward. When everyone left several hours later Maria let Tori watch National Treasure and she completed the entire movie.

Maria did give Tori some tasting of whipped cream and sucker's late in the afternoon and Tori surprised her with one of her actions. Tori seemed to really enjoy the Raspberry Lemonade sucker and after she had a few tastes on her tongue she decided to clamp down with her teeth and bite the sucker in half the next time it came in!! She was very kind afterward to let Maria fish out the pieces without biting her hand... ;-)

Tomorrow we will call the PCMC and make sure Tori's new weighted GJ-Tube has arrived before scheduling to take her up there. That is the only type of tube that seems to stay in place the best on Tori and on Friday they didn't have one in stock... They were expecting to have that type of GJ-Tube on Friday so in theory it should be there tomorrow. We shall see...

Thanks again everyone!!

-Tim

Hello again,

Tori's Friday night didn't get much better after the initial episode of vomiting around 10:00pm... We immediately and repeatedly suctioned out her stomach afterward to make sure there wouldn't be anymore bilious buildup which she could vomit again. She did however try and vomit many times throughout the night but she only produced minor amounts of bilious output. We believe she has a stomach virus of some sort but we are only guessing at this point. The combination of a stomach virus and the 3 hours or so of poking and moving wires inside of her stomach and small intestine were not a good combination and we probably shouldn't have tried putting the medications into her stomach...

But as of right now, we have no other choice but to give her some of her medications through her stomach because the J-Tube portion of the GJ-Tube is plugged once again... Since we can't get back into the PCMC for another one until Monday or Tuesday we are just going to have to make due. We had to place another IV in Tori's hand and we are placing some of her medications through it now but there are also some that aren't available via an IV. For those we are placing them into Tori's stomach through the G-Tube and clamping it afterward for only 15-20 minutes which should allow the medications to soak into her bloodstream through her stomach. We immediately turn the G-Tube to down drain after the time period is up. This has worked now for two sets of medications given to Tori today. Now we need it to work for a few more...

Since Tori's J-Tube is plugged once again she is also NOT getting any of her high calorie feed... She is getting an IV based solution as a replacement but it doesn't have near the calories and only provides her the necessary nutrients. We weighed Tori again today and she is at 93.4lbs so it is vital that we get her feeds going again as fast as possible.

Tori didn't get any PT, OT or ST today since she was feeling miserable for most of the day. She had a temperature at 5:00am in the morning but hasn't had one since. We also took x-rays to investigate whether she aspirated her vomit once again and the x-ray is currently clear. So we are unsure at this point if she has another infection in her lungs and we decided to give her one more day before initiating antibiotics if needs be. She did feel and look a little better this afternoon but you can definitely tell she is very uncomfortable with anything in her stomach. Her vitals statistics are all within normal ranges as well.

None of her numerous cultures have returned positive for bacteria so we are still alright at this point. We will of course be closely watching her over the next couple of days and be hoping and praying for positive progress.

I'll close by mentioning some positive progress I had with Tori today. When she was feeling a little better today I worked with her by having her open her mouth and stick her tongue out at me and she CAN do it for me anytime I ask her to!! This goes along nicely with her opening her mouth on command. I also demonstrated to her how to move her pinky finger and she complied several times by moving the pinky finger on her left hand!! She also gave Maria a slight smile today when she asked if Tori wanted a milkshake for lunch!! So even when Tori is sick and feeling very badly she is still TRYING!! She is so strong and determined and we love her soooo much!! It hurts us greatly to see her in discomfort and pain... But we won't stop fighting for her and we know she will never quit as well - KEEP FIGHTING TORI!!

Thanks again and good night everyone,

-Tim & Maria

Hey all,

Tori's morning consisted of sleeping in today even though she did sleep well during Thursday night. When she coughs during the night she can typically swallow the phlegm after a while but I was still getting up at times during the night to help her by suctioning through her mouth. Tori slept in until 10:00am and the PT and OT team arrived around 11:00am.

They started by having Tori sit up but she was still seemed very drowsy and wasn't participating very much. The next step was to try and put her in a standing position which did successfully wake her up!! After a few standing efforts they bent her over her legs in a sitting position to stretch her back.

Our real fun for the day began at 1:00pm when we noticed feed inside Tori's stomach down drain tube and we all know by now what that means... :-( Yes, the GJ-Tube placed yesterday had already slipped up and out of her small intestine and into her stomach. We immediately stopped the feeds and made sure her stomach was completely drained. We wanted to get this corrected before the weekend so we packed Tori up for another ambulance ride to the PCMC (Primary Children's Medical Center) in Salt Lake City. The Radiologist Team was not very excited to see us again and the feeling was mutual... So we began yet another GJ-Tube placement at 3:30pm and Maria and I assisted. Tori was in good spirits at the beginning and since the procedure yesterday only took 15 minutes or so we told the ambulance drivers to sit tight. After almost 3 HOURS of trying to place it this time we finally got it!! It was very frustrating to all of us and especially to Peter who was the doctor performing the procedure. Tori's SMA Syndrome had created a solid blockage in her small intestine and we tried everything to try and get the GJ-Tube past it. Peter eventually modified a standard GJ-Tube by inserting an thinner NJ-Tube inside of it. He was just about ready to quit before he successfully passed the tube through the blockage. Unfortunately, this will only be a temporary fix and we will return for another GJ-Tube on Monday or Tuesday of next week... ARGH!!!!....

By the time we finally made it back to the HSH it was 7:00pm... Since this modified solution uses a thinner tube GREAT care must be used to not plug it. So rather than give a couple of the thicker medications through the J-Tube portion of the tube we put them into the larger G-Tube portion which goes into her stomach and we clamped the down drain afterward to keep the medications inside her stomach for at least 30 minutes. Tori's bilious output from her stomach has been almost non-existent lately so we thought this might actually be a good idea. It wasn't... Tori vomited around 30 minutes after the clamping... There was no feed in it, it was purely the medications and bilious output.

Maria is now watching her very closely and all forms of cultures will need to be taken again. Tori seemed very lethargic and sleepy today and we were somewhat concerned with her behavior anyway. She also had Marilyn, Kenzie, Kourtney and Angel visit today and Tori didn't respond to them as she normally does... I'm not sure if there is much more to state at this time but I'm heading back up to the HSH now.

Thanks again everyone and let's all pray for better progress tonight and tomorrow,

-Tim

Good evening,

Tori's day was largely centered around her ambulance ride to the PCMC for her new GJ-Tube. The placement went very well once again but they really don't want to see Tori anymore if they don't have to... This is probably the 6th or 7th GJ-Tube she has had placed... She left the HSH at 11:00am and returned there after 3:00pm so much of the day was travelling, waiting for the procedure and finally doing the procedure.

Tori did get some OT and PT therapy in prior to her leaving in the morning. Cheryl tricked Maria into leaving the room to get her something and while she was gone Cheryl placed Tori stomach first over a GIANT rubber exercise ball. Needless to say Tori didn't appreciate it one bit and was very upset and vocal throughout the 20 minutes spent on top of the ball... It basically bent and stretched Tori's back in a direction it hasn't been for 123 days and it hurt greatly I'm sure. She also had her arms stretched out in front of her and Tori had to try and keep her head up. It was definitely one of the most challenging exercises or positions she has had and I'm sure she is not going to like seeing that ball again... Next time should be even more interesting.

Tori didn't have ST today because she was pretty upset after she returned from the PCMC. We did give Tori a long and hot bath tonight and she just soaked it up very nicely. I'm sure the hot water felt great on her sore muscles. She needed a valium tonight to get her calmed down to a restful level for sleeping and she finally crashed at 11:00pm.

Maria and I did treat her to some ice cream and whipped cream in the late afternoon and she definitely still likes that. Dr. VickRoy and I also discussed the removal of a couple more medications and the addition of some others that will stimulate her neurologically. I've done some extensive research on the medications and we will try and decide exactly which ones to try tomorrow or early next week. It's always a little scary introducing newer medications but some of these are needed to help Tori progress. They are much more aggressive in Europe concerning which medications are given and I am trying to model Tori's medications after some of their approaches overseas. We shall see.

That's it for tonight and thank you!!

-Tim

Hi everyone,

Tori needed her valium a bit earlier than usual last night as she was still wound up a little after her day of strenuous therapy. She ended up falling asleep afterward at 9:30pm and slept in to 9:00am this morning. The ibuprofen will now be given on a schedule at 10:00am and 2:00pm during the day.

Tori had some more intense OT and PT sessions today. She had the normal stretching routine completed on her arms and legs and they actually sat her on top of a bolster pillow today. She straddled it while it sat on the floor and it requires Tori to use more of her hips to balance herself. Tori continues to do very well in holding her head in a normal position when standing or sitting up.

Tori's afternoon OT session consisted of even more stretching and some German chocolate cake!! :-) Tori was given a small bite of frosting and cake on the end of her tongue and front of her lip. She maneuvered it from there into her mouth and actually used a chewing motion with her jaw prior to swallowing it. Cheryl would then ask her a couple more times to swallow and Tori would do it on command!! Then on to the next bite which Tori would very willingly open her mouth for!! After the first bite Tori also just stared at the cake on the plate. I asked Cheryl to move it around in front of her quickly to see if Tori could track it. Tori tracked it with ease even though Cheryl was moving it around her in a quick fashion. Her reflexes are improving!! The ST Staci tried pudding later in the day and Tori has a little more trouble getting it into a position to swallow but she eventually gets it. The cake was more 'sticky' and easy to move. Now if we could just get Tori to eat a whole piece of cake each day I'm sure her weight would increase quickly... ;-)

Tori could also pick her spelled out name on a piece of paper today when other names were presented as well. We are still trying to get a consistent 'yes\no' response from her. But she will definitely point with her eyes as to what she wants. If she doesn't want any more tastes or something like that she will just close her mouth tight and not open it. It's time to stop when she does this.

The downer note of the day is that Tori will be heading up to the PCMC for a 12:00pm GJ-Tube replacement tomorrow... Yes, the various fixes we have tried to plug the pin head sized hole in her tube have all failed after what we thought was early success. Hopefully Tori will be back at the HSH safely by tomorrow afternoon or evening. Yet another GJ-Tube and ambulance ride...

Thanks everyone for the continued prayers and support - it is all working!!

-Tim

Hello,

Once again Tori had another great night of sleep!! I believe she will have one again tonight because she had an abundance of PT, OT and ST therapy today. Tori is now completing at least 3 hours of therapy each day. It truly does take ALOT out of her by the end of the afternoon. We had to give her an early valium early tonight along with several ibuprofen doses throughout the day. The therapists indicate she will be extremely sore each afternoon and night after her sessions.

Tori is now officially OUT of isolation!! No more yellow grab for us!! :-) Maria said this morning they gave Tori a bath complete with an intense scrubbing. They also removed everything, and I mean everything from her room and totally cleaned and sanitized it. It took about 3 hours to complete this process so Tori spent quite a bit of time in her chair today waiting to get back into her room.

Tori did more sitting on her own during OT therapy today and she improved once again. While Tori is sitting on her own she will eventually begin shaking as her muscles are trying to hold her in position. She fatigues very easily because she just hasn't used those muscles in that fashion for almost 4 months... Tori also had some more suckers and whipped cream today during her ST session. Getting her to suck from a straw will be coming up shortly. I also gave her taste of clam chowder and a little diet coke this evening :-) I'm sure she really wanted my sandwich but we're not quite ready for that yet.

We are now debating whether or not to take Tori's button trach out so soon. One of the factors is still in regards to Tori's weight. We still need at least 5-10lbs added on her and her health should improve even more when we accomplish that. Also, with HBOT sessions occurring in the very near future it might be nice to have that access point in case of an emergency. If we keep the trach plugged as much as we possibly can the risk of infection is still greatly reduced. More details to follow.

Thanks everyone and that is the short update for Tuesday.

-Tim

Good evening,

Tori's slept all Sunday night until 9:00am this morning. When she coughs on her own she sometimes cannot clear all of the phlegm through her swallowing so a little bit of suctioning down her throat is needed. The respiratory technicians will also come into her room twice during the night to suction through her trach to get her to cough and clear her lungs.

Tori was set in standing position during today's OT therapy session. She held it for about 1 minute before needed a well deserved rest. She also gave Tori some whipped cream which went over very well!! The whipped cream would be placed on the end of Tori's tongue to see if the could eventually move it all the way through her mouth and finally swallow it. She did it time and time again!! We know Tori can easily swallow if the content is in the back of her throat in the correct position to do so. It is the upper movement inside her mouth which we need to improve and this exercise serves exactly that purpose.

Maria placed alot of Tori's pictures and some of her friends as well on the cupboards across from her bed. Tori stares at and studies them frequently. She also watched some TV earlier tonight and her attention span is large enough where she can watch a complete, hour long show. Maria and Tori watched CSI tonight.

If yesterdays culture from Tori's nose is negative tomorrow we will be OFF isolation or what I was referring to earlier as quarantine. We will then remove Tori from the room for a few hours while they completely clean and sterilize the room. When we return we will be free of the lovely yellow GARB!! :-) It will also make it much, much easier for Tori's visitors.

Today's meeting with a local HBOT provider also went very well and we will start Tori's treatments as soon as possible. I will provide further details as Tori's schedule is solidified.

Thanks again everyone for your support!!

-Tim

Good evening,

Tori's sleep cycles are now right were they are supposed to be. She slept all night and woke up this morning around 8:00am which works well for all of us!! :-) She also slept with her trach completely plugged and handled it wonderfully. She did so well on fact that we removed her nasal cannula this morning which provided minimal oxygen while she was plugged. She was breathing pure, room air all day and her blood oxygen levels stayed between 94%-98%. Very good Tori!! We will seriously be looking at removing the trach this week if she maintains those levels for a few more days.

Today in Tori's PT session we worked on sitting at the side of the bed. We held her up as she tried to balance and at one point we released her and she completely held herself up for about 8 seconds straight!! The other drill we worked on was having her raise her head and tilt her neck back. Then we would have her lower her chin and head. We are simulating a 'yes' head movement. Tori was doing it all on her own at our command!! She is trying so hard and we did NOT help one bit in getting her to either lift her head up and back or lower her chin and head down. It truly takes alot out of her doing the exercises so we have to wait in between movements for her to rest. We also simulated 'no' head movements by letting her focus on an object in front of her which we would then move form side to side. She does very well with that motion and is always doing it while lying in bed and scanning the room.

We gave Tori another bath tonight and she is sleeping soundly at this time. We are hoping NOT to be under quarantine tomorrow as well. We shall see...

Thank you all and until tomorrow.

-Tim