Tim Schmanski's blog

Hello all,

Well, unfortunately Tori will have one more night at the PCMC... But everything is in place for her to return home tomorrow.

Tori had her PIC Line removed this morning and her feeding was done completely through the J-Tube portion of her GJ-Tube today. This was done as a test to make sure she can handle the feeds fine through the J-Tube portion as well. The plan for home is to feed her through the G-Tube during the day and through the J-Tube at night as a precaution in case Tori vomits and aspirates the feed. We'll try it for a while but eventually wean her to 100% G-Tube feedings again.

Tori was at 100ml per hour on in her G-Tube before we made the switch to her J-Tube where we started at 60ml per hour and will leave the hospital tomorrow at 80ml per hour. Tori's digestive system is also working very well once again.

Tori's chest xrays are showing that she slightly aspirates and we believe this occurs at night when she is sleeping in such a sound state that she forgets to swallow. She coughed quite a bit last night and had to be suctioned at times.

Tori had a good demeanor and spirit all day today and we can hardly wait until tomorrow when we finally get home once again.

Thank you so much for your prayers and support,

-Tim

Good evening,

And hopefully the last update from the PCMC... Tori is still here but all signs are pointing to us leaving tomorrow.

She is now getting 100ml per hour of feed through the G-Tube portion of her new GJ-Tube. Yes, this afternoon we decided just to place the GJ-Tube which will give us options in the future should she not be able to hold anything in her stomach. The J-Tube will basically be unused at this time. The placement went wonderfully and it was complete within 10 minutes. A record placement time for Tori!! :-)

Tori is scheduled for her PIC Line removal tomorrow morning and we have also asked to have blood tests done on her once it is removed. We want to be sure she hasn't caught any infections through her PIC Line so we had the blood tests ordered.

Other than that she is doing well tonight and is sleeping soundly already. She woke up last night for Maria from 2:00am until 4:00am and I am hoping not to have the same experience tonight.

Thank you all and we are ALMOST home!! :-)

-Tim

Thanks,

-Tim

Hello there,

Well, Tori is still at the PCMC... We can't seem to make enough progress to get her and us out of there. Tori had a much better day than yesterday though.

She woke up early this morning but took a mid to late morning nap to compensate. She is now back to 80ml per hour of feed and she is also getting 10ml per hour of fluid only through her PIC Line. Once she hits and maintains 90ml per hour of feed we can remove the PIC Line and we want that to be TOMORROW!! Please...

Tori will get another KUB and Chest xray tomorrow morning. They have also been trying to talk Maria and I into placing the GJ-Tube instead. This would be a precautionary move so that we have one more path to feed her should she not be able to handle anything in her stomach. I really hate to put Tori through another J-Tube placing though... Especially since she was taking G-Tube feeding just fine for 4 months prior to this episode. We'll decide on this in the morning.

Tori had a zanaflex this morning and tylenol and motrin the rest of the day. Maria also gave her a nice sponge bath and hair washing. Tori was calm and relaxed for most of today. Her blood oxygen levels sometimes get to 88% or so while she is deeply sleeping and taking 0-10 breaths per minute. At those times we have given her a little oxygen boosts.

That is all for tonight and we are hoping for the BEST LUCK tomorrow!!

Thanks,

-Tim

Good evening,

Tori slept well for Maria Monday night but there was some fun Tuesday morning... Tori became quite agitated and during that phase they tried to give her daily medications. Tori ended up vomiting all of them up plus the feed she had in her stomach at the time... It was quite the mess from what I understand. I have since explained to the medical staff here not to give her medications during episodes like this. We will give her xanax, zanaflex or other calming medications first before we give all of the rest.

We don't know how much she may have aspirated or if she aspirated at all. We now have to watch her temperature closely and hopefully, just hopefully she will not get sick while we are here... We vitals sats are all very good tonight at least and she is sleeping calmly.

Tori had another KUB scan today and everything is still healed. There are no issues to be found in her digestive system. She was at 90ml per hour before the vomiting incident so they lower her back to 60ml per hour. We will push getting the levels back up because it wasn't the level that caused the vomiting.

Since there are no more lipids or TPN being administered we are pushing to have her PIC Line removed tomorrow. We had planned on doing that today but it was a somewhat rough day for Tori so we held off. Again, hoping for better news to give tomorrow.

Thank you all and good night from the PCMC,

-Tim

Hello again,

Tori slept well most of the night Sunday but woke up at 5:00am which is a little too early... She stayed up for a few hours then started her late morning nap.

Her morning KUB scan still showed that absolutely no pneumatosis remains and her chest xrays were improved over the previous ones. Her is breathing is much smoother now as well and there is only minimal 'chunkiness' at times which Tori now coughs out nicely.

We know Tori is healing because she is much more awake and aware which is bad news for the hospital staff... She is now becoming agitated whenever they are in the room and even when Maria or I leave the room. Today I was out of her room at the nurses desk speaking to them and we looked over and Tori had her head and neck popped up just watching to make sure I didn't go anywhere. Tori needed a few doses of xanax today along with the steady doses of tylenol and motrin.

The good news of the day is she is now getting 80ml per hour of feed!! We anticipate being at our goal of 110ml per hour tomorrow but will probably remain one more night. She is also getting pepcid to help get her digestive tract working consistently again. I haven't heard any of that 'empty stomach growling' now for a couple of days.

Her TPN and lipids have been reduced greatly and once the current doses run out Tori will be through with them. So tomorrow we should have a PIC Line removal as well. We are all very, very ready to get Tori home once more!! :-)

Thank you for all of the support and prayers,

Tim, Maria, Tori, Whitney and Brendan

Good evening,

Another good night of sleep for Maria and Tori and a nice relaxing Sunday as well. Tori napped on and off all day but was in good spirits once again. She had some very minor agitation this afternoon and that was it.

There were plenty of visitors today including Mark, Marilyn and Kenzie followed by Lorrie, Judy , Dave, Grandma Wilkins and the triplets. Todd, Laurie and all of the boys also stopped by this evening. Tori woke up just enough for each visit but she wasn't too interactive and went right back to napping after they left.

She is now up to 60ml per hour of feed and is holding strong. Her TPN and lipids have also been decreased accordingly. Tomorrow Tori will get another KUB scan and chest xray to see how things are looking. If all goes well tomorrow she should be at or near 100ml per hour. At that point we need to stop the TPN and lipids and remove the PIC Line in her arm. This PIC Line has held up very well which is nice considering all of Tori's past difficulties with them...

That is all for tonight. Thank you!!

-Tim

Hi there,

Tori and I both slept pretty well Friday night and she had a very good day Saturday as well. We only had to give her motrin and tylenol and her demeanor was good all day. Perhaps the remeron is having the affects it should already. Tori is definitely feeling better anyway.

We gave her Friday night off as far as feedings go so today we bumped her from 10 to 20 to 30ml per hour. Tomorrow we will continue to inch it up as long as she tolerates each incremental step. If everything continues to advance positively we won't have to place a GJ-Tube and can stick with the new G-Tube that is already in place.

Mike, Linda and Chelsea also paid a visit today and we woke Tori up from her napping so they could page through the latest issues of 'Teen People' and 'Seventeen' magazines with her. It was a good visit and Tori enjoys seeing some fresh faces now and then.

Thanks again,

-Tim

Hello there,

Maria and Tori's Thursday night went better than the night before because Tori is finally coughing strong enough on her own to clear her lungs. A chest xray was also completed today and there is some very slight cloudiness but we don't believe she aspirated any of her feeds. It's more likely that her lungs are flattened out after laying in bed for this extended period of time. She doesn't have a temperature and her sats are great - heart rate, respiratory rate and blood oxygen level.

We did stop her feeds however and will delay starting them again until tomorrow just as a precaution. Tori did get her new G-Tube placed so that is done for the moment. If Tori cannot handle her feedings straight through the G-Tube we may have to consider placing another GJ-Tube to expedite the process of getting her digestive system going once again. We'll see how the feeding goes Saturday and make that determination on Sunday after they get a 24 french GJ-Tube in house.

Grandma Harris returned home yesterday and Maria, Whitney, Brendan and I spent much of the afternoon and early evening at the PCMC with Tori. I also took Whitney and Brendan over to the Jewish Community Center across the street for some swimming.

That is all for now. Thank you all.

-Tim

Hello again,

Tori and I had an inconsistent night of sleep Wednesday night primarily because Tori had some phlegm and the top of her lungs and wouldn't cough to clear it... She gurgled and wheezed all night and constantly woke herself up in the process.

She was also very sleepy all day today and that was probably a result of re-introducing the remeron this morning. Remeron will cause drowsiness especially when it is new to your body. We usually gave Tori her dose just before bedtime which helped Tori sleep and we will now have them alter the time they are giving it while at the PCMC.

Tori's Jevity feeding was bumped up to 20ml per hour today and once again she handled it without any issues. Tomorrow we will try for 40ml per hour. In addition, Tori is off the antibiotics and all of her C-Dif tests and blood tests have turned up negative for any bacteria.

Tori also had a GJ-Tube incident today.... The GJ-Tube was actually completely pulled out of the stoma or hole that leads to her stomach during a changing.... We needed to remove this at some point but this wasn't the fashion we had in mind. To top it off, she had a large 24 french GJ-Tube because the smaller ones plug too easily. The largest one available at the PCMC was an 18 french and they couldn't find any in the 24 french size even after scouring every hospital within 100 miles... Luckily we happen to have a spare one at home :-) They will install it tomorrow morning and remove the temporary 22 french from the LDS Hospital that they placed this afternoon. The main issue is that her stoma will close off fairly quickly so we need to get the same sized G-Tube in as quickly as possible.

In closing tonight we would like to congratulate Allison for making the top 8 on FoxTV's 'So you think you can dance?'!!! Way to go Alli!! :-)

Thank you,

-Tim

Good evening,

There is alot of progress to update everyone on tonight. First off, Maria and Tori both slept well Tuesday night and Tori had the KUB scan on her abdomen early this morning.

Before the results reached us later in the morning Maria did another review of Tori's medications and much to our surprise one was left off!! Again... This time it was the antidepressant remeron which Tori has been on for some time. In addition, it is NOT a medication that is supposed to be stopped cold without weaning... We are frustrated once again because we actually gave the physicians here the complete, daily medication sheet that we use at home each and every day. All of her medications and delivery times are clearly indicated on it and we just don't understand how any can be missed in that fashion... I guess this represents yet another situation where we must double and triple check everything being done with Tori. We now believe that much if not all of Tori's agitation, bad demeanor and mood swings can be attributed to the fact remeron was removed from her system.

Another interesting note is that just after the missing remeron was discovered and brought to everyone's attention, the physical therapy physicians stopped by and mentioned they thought that Tori needs an antidepressant!! Of course everyone in hall was laughing at the 'new' suggestion :-) I'm happy to report that Tori received her first dose of remeron tonight.

The results of Tori's KUB scan showed again the very slight case of pneumatosis intestinalis in Tori's colon... But after speaking with the gastric physicians we decided to begin small feedings through her G-Tube anyway. So Tori is being fed once again!! It is only 10ml per hour of liquid Jevity but she has handled it well since noon today. The goal is to get her back to the 110ml per hour she was getting at home before our visit at the PCMC. So we will increase her Jevity feeds ever so carefully. The physicians also found some case studies that indicated J-Tubes may lead to more pneumatosis than standard G-Tubes. Tori has had a GJ-Tube in place for a long time even though the J-Tube portion hasn't been used for many months. It was plugged and we didn't bother changing it because all of her feeds and medications were given through her G-Tube. We will now remove the J-Tube of course...