Tim Schmanski's blog

Hello again,

Tori's sleep cycle appears to be mostly back to normal now. She awoke again for Maria around 3:00am Wednesday night but quickly went back to sleep after her repositioning. She then slept very soundly until 8:00am or so. Today she had an extreme amount of therapy and she seems exhausted from it. It's 9:00pm and she has already fallen asleep.

Tori is now getting 85 milliliters per hour of the new, Nestle Double Calorie, Nutren 2.0 Vanilla flavored feed!! We are hoping that it fattens her up twice as fast of course and I will wait for my great friend Guy to get back from France to have our own, personal Nutren 2.0 toast to celebrate!! :-)

Since Tori's pain is primarily due to her SMA Syndrome we have taking the appropriate measures to minimize her pain. There are several positions which help SMA Syndrome pain one of which is prone, or lying face down on a flat surface. We obviously cannot do this one quite yet so we are relying on the other positions which are either standing or keeping her upper torso in a vertical position. So today during her OT and PT she was either sitting upright in her bed or sitting in a normal chair. They bent her over again so her hands touched her toes numerous times to provide the complete, lower back stretch Tori needs. They also had Tori standing again during today's session!! Much more of that to occur moving forward!! After standing they had Tori reaching around a large exercise ball to hold it for several seconds at a time. Tori's arms and hands also went through the normal stretching routine and when they finished ALL of that they finally placed her in her wheelchair. She spent a good 1.5 hours in it today and Maria even took her outside once again. The painful winces and grimaces are definitely diminished when she is in a sitting, upper torso vertical position. She can now expect to be positioned in this fashion most of the time.

Tomorrow morning Tori will get her new GJ-Tube placed. We are greatly hoping that the new style of tubing they are going to use truly does work and stay in place... Tori's feeds will need to be shut off tonight at midnight in preparation for this procedure. Once the new GJ-Tube is placed the NJ-Tube in her nose can be removed again and her face will be cleared once again!!

Maria DID end up plugging Tori's button trach for about 1.5 hours today!! Tori did quite well so tomorrow we will try and go for additional time. The antibiotics are finished and the only reason Tori needs her foot IV is to replace all of the fluid she is losing in the Bilious output from her stomach. She is still putting out too much bile out of her stomach... Some of that can also be contributed to the SMS Syndrome.

I guess that is all for tonight. I will state that Tori in general is just looking much better now and her behaviors resemble those prior to 11 days ago when we arrived again at the PCMC. Tonya, Tori's technician today who has watched her numerous times, told me she saw clear response to instruction today for her first time. Tonya asked Tori to open her mouth so she could brush her teeth and Tori obliged and she obliged again when she asked Tori to close her mouth when she finished. It will be GREAT to get fully back to this type of therapy and rehabilitation once again!! :-)

Thank you all and good night!!

-Tim

Hello all,

Tori ended up sleeping very well again on Tuesday night and she woke up only a couple of times and quickly went back to sleep again. The nurses and technicians have been instructed to reposition her every 4 hours while she is sleeping rather than the normal every 2 hours. Tori also has a slight bed sore on her tailbone so she must be positioned on her sides most of the time.

Tori is currently getting 85 milliliters per hour of the Ross Jevity through her NJ-Tube into her small intestine. We will be switching her feeds to a high calorie version hopefully tomorrow. The CMU doctors, GI doctors and GI surgeons met today to concur on a diagnosis for Tori. After reviewing an additional Upper GI Series and the current symptoms and test results, it is determined that Tori has Superior Mesenteric Artery Syndrome which is also known as SMA Syndrome or SMA Obstruction. It is basically compression of the duodenum or first section of the small intestine against the aorta by the SMA which results in chronic, intermittent, or acute complete or partial duodenal obstruction. In the simplest terms, Tori doesn't have a enough fat in her body surrounding and protecting this area so everything is squeezed all together and spasming and blockage of the small intestine is the final result. We have been highly advised NOT to do the Nissen surgery at this point because the chances of failure are great with Tori's SMA Syndrome. We can investigate if it is needed later. For now, we have to get more feed into Tori so her weight and fat content can increase. If we can get her weight back to normal, it is presumed the SMA Syndrome will disappear. We believe it because at one point within a couple of weeks after the accident Tori's digestive system was working in a perfectly normal fashion. Food was given through her stomach and all was well. It was only after she lost excessive weight that the problems began...

Given that we have to get her feeds going at 120-150 milliliters per hour, we are going to remove the G-Tube once again and replace it with another GJ-Tube. This time, they are going to use a different type of GJ-Tube, one that can bend easier and supposedly, stay in place much better. I'll have to see it to believe it of course but we just have to do this!! The GI surgeon Earl has already spoken with the Radiologist Peter on the procedure and it will now take place on Friday. The GJ-Tube will be placed past the troubled area in her small intestine. We can also remove the NJ-Tube once this is completed.

Tori's still demonstrates some of the painful winces and grimaces as before since her feeds are going full ahead again. This can be attributed now to the SMA Syndrome. We are trying to work with different pain medications to help her. Motrin and Valium are typically used and today we tried Loretab which seemed to work as well. Again, the goal is to NOT knock her out all of the time but to keep her awake without the pain.

Tori's pneumonia is officially gone!! I think she will have just one more antibiotic dose tomorrow. The Phlegm from her lungs is saliva like in texture and she can maintain a 95%-100% blood oxygen level with room air. A test plugging of her trach button will occur tomorrow.

Tori had more of the aggressive and extended physical therapy today as she did over the past several days. We did more arms and hands combined with some back and shoulder massaging and stretching. We also had her sit up on the edge of the bed today. Tori can still align her head and neck and keep them in place. We bent her over so her hands touched her toes numerous times to completely stretch her lower back. Again, this should help with the SMA Syndrome as well. Tomorrow we will get her into her wheelchair once again.

Alright, that is it for tonight!! Thank you!!

-Tim

Good evening,

The clogged NJ-Tube I mentioned last night may have turned out to be a blessing after all!! Since it was clogged nothing could flow through it and Maria noticed some very positive behavior changes in Tori during this time. For one, Tori actually slept all night for Maria!! And that is a miracle in itself!! :-) In the morning, Tori's frequent, painful winces and grimaces all but disappeared!! Tori remained in this pleasant state until they placed her NJ-Tube again around noon today and even after that she was improved over previous days. Remember, we DO need her to eat so we have to have the NJ-Tube until she can hold down feeds in her stomach. And we will not attempt a stomach feed until the Nissen surgery is completed.

When they placed the new NJ-Tube today we asked them NOT to go all the way to the end of the small intestine as before. This is just another test to see if the discomfort is based on the placement of the NJ-Tube. Taking food directly into the small intestine is obviously NOT natural to your body and could cause issues. But we know Tori was handling the feeds fine through the NJ-Tube prior to coming the PCMC again. So our next test is to switch her feed back to what we were using at HSH but unfortunately they do not have the same brand here... So instead we are going way back to the Vanilla flavored Nestle Peptamen Junior brand she had in the PICU instead of the Ross Jevity brand she has been getting since she came to the CMU. Maybe Tori just likes the Vanilla better?!?! ;-) We don't really know if the feed type is the issue but we are willing to try ANYTHING to remove her pain!! And we ARE trying everything!! :-)

During the stomach x-rays today when they checked the placement on Tori's new NJ-Tube they used a Barium Meal to watch the entire process of Tori's digestive system. The results were very interesting and actually indicated some hardened stool deposits causing blockage in her large intestine. So Tori had to have an enema this afternoon which totally, and I mean totally, cleaned out her system... You could visually tell that she just felt MUCH better afterward. She was just calm, awake and aware while just taking everything in her surroundings in. Maybe, just maybe, we are finally making some progress with everything we are trying to do for Tori. Wouldn't that be great!?!? We can hardly wait until tomorrow to see how Tori does!!

With this positive progress and her pneumonia just about entirely gone, we are going to try and at least schedule the Nissen tomorrow. We shall see. The quicker we do it, the quicker we can begin to feed Tori in her stomach. Or at least try to anyway... We can feed Tori MUCH larger amounts of food into her stomach and we greatly need to be able to do this to fatten that girl up again!! :-) Again, getting that weight back on her will help eliminate the digestive issues as well. We believe the combination of ALL of the issues I've mentioned are causing the pain and discomfort for Tori.

Tori had the same type of aggressive and extended physical therapy today as she did yesterday. We are definitely making progress and we are focused on her arms and hands and the arching in her lower back. It is very possible that the lower back arching is also causing some of the digestive issues because it creates pressure on the small intestine and could cause the spasming we always see when placing a J-Tube. Again, or goal is to fix this as well and eliminate one more potential issue.

It seemed we had yet another NJ-Tube clog earlier tonight but luckily the hot water flush worked this time!! WHEW!! We will now ask and inform each shift nurse to very quickly flush after each medication is given. Tori doesn't particularly like that NJ-Tube placement procedure and neither do we... We need to avoid it if at all possible. Alright, Tori had her Melatonin and Benedryl at 8:30pm tonight and she was sleeping by 9:00pm!! It's time for me to get some rest now.

Thank you for all of your prayers and support!!

-Tim

Hi,

Tori continued to sleep very well during Sunday night. She woke up at 3:00am again and was only up for 45 minutes or so after we administered another Valium. She then slept until 9:00am and the real fun began.

We made a very sustained effort to provide physical therapy on Tori for much of the day. We all contributed in this effort. The various nurses Tori had, Sande the technician and the physical therapists themselves. We simply wanted to keep Tori's arms and hands loose today and not stiffened. We also massaged her arched back as much as possible. At one point there were about 4 of us working on her twisting her all over, massaging her arms and stretching her wrists. Tori must have thought she was in trouble or something but she actually handled it quite well. Once she gets a great therapeutic workout like that she seems to feel much, much better. We probably gave her a solid 2 hours worth of this type of therapy today. One of our goals was to try and totally eliminate her stiffened body parts as originators of pain. But she still exhibits grimacing and wincing though even with all of this help but it does seem diminished.

In fact, Tori was up all day and there seemed to be times where less pain was exhibited. But then there were a few times when it was very obvious. We tried to identify and tie anything to these cycles but nothing stood out... Tori had lung and stomach x-rays taken again today as requested and they both did NOT indicate any issues. We feel really bad for Tori because she seems to be continuously poked for blood samples to run many different tests. I can't even keep track of them all but I remember the Hepatic Function Panel which test the liver. All of Tori's test results so far have shown no issues... We also don't want the pain to just disappear without knowing what is causing it because we will be in the exact same position when it returns.

Tori's pneumonia appears to be almost completely gone according to the chest x-ray today and the fact she is on her last few days of antibiotics. Again, her blood cultures are still turning up negative for bacteria or growth as well. We are going to be tempted to plug her button trach again here within a few days to see how she handles it again. We can also probably start planning now for the Nissen Fundoplication.

Maria just informed me of the bad news of the day... Apparently Tori's NJ-Tube is now clogged and no medications or feed can be moved through it... They are trying some form of dissolver or acid now as a last ditch attempt to clear it again. If it doesn't work all of Tori's medications will be rewritten again to go through her G-Tube and into her stomach. Then they will have to place a new NJ-Tube once again... Isn't it time Tori catches a break of some sort here?!?! Talk about frustrating...

They did happen to get the Melatonin in Tori's system before the clog and she was given a Valium so hopefully Maria and Tori can still get a good night's sleep before tomorrows fun.

Thank you all once again,

Tim and Maria

Hey there,

Maria unfortunately ended up on the bad end of Tori's sleep cycle again... Tori sleep very erratically Saturday night and when she was up she displayed the same painful grimaces and arm stiffening behavior. Maria ended up having to order Dilaudid for Tori very early this morning which of course knocked her totally out until 1:00pm or so...

When I arrived at the PCMC we immediately gave Tori a hair washing while she was still somewhat under medication. Her arms can be moved very easily when she is in this condition so therapy was done on Tori as well. Tori's rehabilitation doctor Teresa was also summoned to examine Tori's extremely stiffened and twisted inward left arm and shoulder. She immediately began working Tori's shoulder blade to get her into a more natural and comfortable position and it really helped!! Tori was very relaxed afterward and without any medication she went into a deep sleep. We wondered if her shoulder and arm were the reasons for her pain but we discovered they were not when Tori woke up again. Even with her shoulder and arm relaxed the grimacing and wincing continues... She is fine when she has a Valium in her of course but we still must figure out what the issue is in her stomach. She generated alot of Bilious again today and it was dark green in color. The constant changing of the bile color and volume clearly indicate some form of stomach issue.

Tori's vitals again stayed great throughout the day. She maintained a 94-98% blood oxygen level at minimal oxygen level intake and there were a few times today when she was so relaxed it startled us. At one point I watched as her heart rate went from 85, which is really resting for her, all the way down to 68!! Her breathes per minute also dropped to 9 during this same time so I quickly called in a nurse. There was really NO issue, Tori was just very solidly resting. Since we watch Tori's vitals so closely it did give us a little scare though...

Tori's pneumonia seems to be steadily improving with each passing day. She continues to cough less and less and her Phlegm is the correct white and more saliva like texture as normal. It appears that Tori's strength is going to get her past yet another pneumonia!!

Without any of the GI team here we really didn't get any questions answered today in regards to Tori's stomach issues. We did test for Pancreatitis and the result was negative. Just one more thing ruled out I guess. Tomorrow I will request another stomach x-ray and perhaps an MRI on that same area. Someone, anyone, should eventually something amiss in that region...

Tori is sleeping very solidly as I am typing this without any medication so I'm probably benefiting again from Maria's previous long night with Tori. Sorry Maria... We are hoping to get more answers tomorrow when everyone has returned.

Thanks again and good night!!

-Tim

Hello everyone,

Since Tori slept very little for Maria and the nursing crew on Thursday night and she was up most of the day Friday I expected her to sleep alot during my shift Friday night and she didn't disappoint. Tori went to sleep at 10:30pm after receiving only her Benadryl and Melatonin 'cocktail' and slept very soundly until 3:00am when she woke herself coughing. We gave her a Valium to get her sleeping again around 4:00am and she slept fairly consistently until 12:30pm. Again, resting like this is very good for Tori and it allows her to heal in a quicker fashion.

Tori's vitals stayed great throughout the rest of the day and her oxygen intake was lowered to 30% which is barely above the 21% oxygen intake for standard room air. She maintained a 94-98% blood oxygen level while on this intake which is excellent!! The Phlegm removed from her lungs has now returned to the white and more saliva like texture as before. Again, a very good sign. She is now coughing much less and when she does she can generally clear herself and no additional suctioning is needed. So by all indications her pneumonia is residing. The Clindamycin, Zosyn and Vancomycin are doing the job against the Pseudomonas aeruginosa, Ecoli and Staphylococcus aureus bacterias. All of your prayers for Tori are also being answered!! Thank you all!!

Tori's blood cultures were thankfully negative once again!! Each day blood cultures are taken and many times per day I ask the CMU nurses or doctors to check the growth results. They simply check the results on the hospital computer system and they are probably tired of me inquiring but if a positive result appears, time is of essence. I'm hoping to never see that positive result again of course.

Tori remained awake during the rest of the afternoon and her vitals stayed steady and fine but she is definitely feeling pain somewhere in her body. She winces and grimaces periodically when the pain occurs and the doctors nor us can pinpoint where the pain is originating from... It appears to be in her stomach region. We tried stopping her feeds but it didn't seem to help. We noticed a slight bedsore on her lower back so we kept her on either her left or right side but it didn't help either. We, as well as the doctors, are at a loss on where the pain is occurring... It is very frustrating to say the least. We will be running some blood tests tomorrow to check Tori for Pancreatitis. Rather than using Dilaudid today to ease Tori's pain we tried Loretab instead. Dilaudid typically knocks Tori completely out but we were more interested to see if the pain actually went away while she was awake. The Loretab kept her awake but didn't seem to ease her pain unfortunately... Zofran was also given prior to remedy any nausea.

Tori's Bilious output for her stomach seems to also be diminishing and the light green color is much more like normal for her. She will remain on a continuous drain indefinitely.

To summarize, Tori's pneumonia battle is going very well and we are optimistic but Tori's discomfort and pain points are still unknown. Some of her behaviors are completely different than they were prior to Monday. For instance, the painful eye wince she demonstrates has not been seen before, the completely straight and stiffened arms have not been seen before, her very negative reaction to touch has not been seen before. We are dealing with new and puzzling behaviors now and we have no answers. Tori's advances during the two weeks prior to Monday are no where to be found... These health setbacks are extremely frustrating because this valuable time should be spent on therapy and rehabilitation and it's not being spent there... We are trying to continue with much of Tori's therapy related exercises but it is very, very difficult given her condition. We can only hope and pray for more answers tomorrow.

Thank you all,

-Tim

Hello all,

Tori and Maria ended up getting only a few hours sleep Thursday night as Tori seemed to be in much more pain and discomfort than previous nights. The fact that two crying babies were in the rooms on each side of her didn't help matters much either...

Tori was much more awake today with vitals showing a heart rate of 120-130 beats per minute and a 30-40 breathes per minute respiratory rate. Her blood oxygen level still maintains 90-100% with a 40% oxygen flow going through her breathing mask. We believe Tori is feeling much more pain today because she is much more aware. We had to give her steady doses of Motrin during the day and even some Valium at times. She is really uncomfortable and sweating profusely at this immediate time. That actually might be a good sign of her breaking her fever again. She has been getting them on and off throughout the day. You could tell Tori was just hurting badly all over today because she just cringed and stiffened her entire body on even the slightest touch. You could look her in the eyes just fine but touching was out of the question today...

Much of this is caused by the newly discovered positive lung culture growths of the Ecoli and Staphylococcus aureus bacterias. Yes, the ones we had hoped she did not get... The only good news is that the bacteria has not infiltrated Tori's blood system, it is purely in her lung cultures or basically her green and thick Phlegm. Tori is battling one heck of a pneumonia right now... I requested for more hope and prayers on Wednesday night and I am requesting again tonight. We are openly and honestly petrified by the thought of Tori getting another bacterial blood invasion... Tori just cannot afford to go that direction again.

Tori is now getting three of the best antibiotics to fight the bacteria in her lungs. Clindamycin for the Pseudomonas aeruginosa family of bacteria. Zosyn and Vancomycin for the Ecoli and Staphylococcus aureus bacterias. Vancomycin is often reserved as the "drug of last resort", used only after treatment with other antibiotics had failed. We are starting directly with it and praying it does the job.

Tori is getting minimal feeds through the new NJ-Tube running from her nose to the very end of her small intestine. Since she is generating an extreme amount of Bilious in her stomach and we have now opted to continuously drain her. We were clamping her stomach drain shut after administrating all of her medications into her stomach from the G-Tube. This is not an option anymore so all of Tori's medications have now been redirected either through her NJ-Tube or the IV in her foot.

I met with a GI doctor and GI surgeon today and we discussed the possibility of Tori's Nissen Fundoplication which again is a surgical procedure that prevents acid reflux or more pointedly vomiting. They both agreed it would be advantageous for Tori to prevent any further aspirations. Tori just can't have anymore pneumonia's if at all possible... The procedure can't be scheduled until Tori beats the current pneumonia she has. Once she does, there aren't any anesthesia delays needed as previously thought. So hopefully within 10-14 days the procedure can take place.

So it is Tori and I rooming together tonight!! Our main goal and focus for the next week will be getting her through another nasty pneumonia and I just know SHE CAN DO IT!!

Thank you all once again and good night,

-Tim

Good evening,

Tori slept all Wednesday night and for much of the day today. She was awake for brief periods of time throughout the day. Even when she is up, she is really calm and resting as her heart rate still maintains a range of 85-95 and her breathing rate stays steady between 15-25 breathes per minute. She isn't moving much at all as she is using all of her resources to battle the pneumonia. She did get occasional high temperatures today which were resolved by administering Motrin.

The blood cultures taken Monday night are still negative for any growths and the lung cultures were actually positive for the Pseudomonas aeruginosa family of bacteria. The specific bacteria is not identified yet but the antibiotic Clindamycin is supposed to counter any bacteria in the Pseudomonas aeruginosa family. Tori continues to cough up some very green and thick Phlegm and it is amazing how much her blood oxygen levels immediately recover after she rids herself of the phlegm.

After speaking with several CMU doctors and GI doctors today we decided to remove the GJ-Tube and replace it with a single G-Tube to Tori's stomach and run an NJ-Tube through Tori's nose into her small intestine. The NJ-Tube will be used for feeding and the G-Tube for medications and stomach venting and draining. Placing the NJ-Tube is far, far easier than a GJ-Tube and the radiologist completed it within 10 minutes. This time the NJ-Tube was ran completely through her entire small intestine and the x-ray looked like the tube was tied into a fisherman's knot because it ran and twisted all over the place. There must be 5 to 6 feet of tube inside of her and again, it is ran to the very end of the small intestine so HOPEFULLY it will not be coming back up any time soon...

We decided not to do the GJ-Tube placement today because the risk is too high that it will just move back up. We have made the decision for Tori to have a Nissen Fundoplication which a surgical procedure that prevents acid reflux or more pointedly vomiting. The GI surgeons agree with this decision because we just have to prevent any further aspirations because each time one occurs Tori is in great risk for a pneumonia. The surgery has no other real side effects and Tori will be able to start getting feeds through her G-Tube into her stomach because she can't vomit. We can be more aggressive with her feeds and fatten her up much quicker this way. The procedure has not been scheduled yet because apparently Tori cannot have any anesthesia due to her pneumonia. One surgeon believed a 6 week wait is needed but I'm getting additional opinions tomorrow. We don't really want to wait 6 weeks for this...

After the Nissen procedure and with any, any luck we will not even need to have a GJ-Tube anymore. Tori still must demonstrate she can process feeds in her stomach and hopefully it will happen. But we have to get there first to begin testing this. Anyway, Tori is now at least getting feeds again through the new NJ-Tube and we are so happy. Much of Tori's pain stems from the fact she has no food in her and we all know how painful that hungry feeling can eventually become when we don't eat...

Maria is spending the night with Tori tonight and I'm hoping they both sleep very well. Tomorrows goal is to speak with more GI surgeons and get the Nissen procedure scheduled. We would really, really like to do it within a few days so Tori does not have to be moved back to Health South again... We shall see.

Thank you everyone and until tomorrow,

-Tim and Maria

Hello again,

Well, our girl Tori ended up sleeping all night and for just about the entire day as anticipated. She has been solidly resting as well with a heart rate range of 85-95 and a breathing rate between 12-18 breathes per minute. Her high temperatures stopped around 11:00am this morning.

Her blood cultures taken Monday night are still negative for any growths but her lung cultures taken the same night have turned positive for the bacteria Pseudomonas aeruginosa. So Tori does have a pneumonia but her breathing and blood oxygen levels are still great. We pretty much knew something was in her lungs due to the green color and thickness of her Phlegm. So unfortunately, it appears Tori did aspirate her vomit after all... But thankfully, at least so far, we haven't had the extremely nasty Ecoli or Cocci bacteria that has caused Tori disastrous trouble in the past... The primary reason we gave Tori the strong Zosyn antibiotic immediately was to counter those two bacterias. Please hope and pray they do not appear and attack Tori's system once again. We have given Tori a new antibiotic Clindamycin to counter the Pseudomonas aeruginosa.

The cloudiness seen in the chest x-ray they took on Tori also identified the pneumonia in Tori's lungs. It also happened to point out another, totally unexpected issue which was later confirmed with a KUB x-ray of Tori's stomach. The GJ-Tube placed yesterday into Tori's small intestine has worked it's way back into Tori's stomach... Yes, it's true and unbelievable since Tori hasn't really even moved at all since that placing!! The CMU medical doctor Tom met with Peter from radiology to discuss the already unplaced GJ-Tube. Apparently, the external entry to Tori's stomach is in a very awkward position... The bend needed for the J-Tube to go directly into the stomach and straight into the small intestine is too sharp and cannot be accomplished. So a loop of the J-Tube is needed inside Tori's stomach to get the correct angle of entry into the small intestine. The loop in Tori's stomach is the issue here because the stomach naturally extends and contracts and this motion is basically pulling the J-Tube right back into the stomach. Soooo, I've requested a meeting with the GI doctor and GI surgeon tomorrow to discuss a 'real' fix to this issue. We obviously cannot have the J-Tube slippage occur over and over... An NJ-Tube through Tori's nose was mentioned as an alternative but that isn't a long term solution. We need this fixed now, the right way. Hopefully they will have alternatives to option 1 which is to go into surgery again, cut a new hole into Tori's stomach and sew up the old one... argh... We shall see.

Alright, Tori is still in a deep state of sleep so I'm going to try and go to sleep now as well in case she decides to wake up in the wee hours of the morning... It also appears we will be here for a few more days at the least.

Thank you for the continued prayers and support and believe me, we are trying to get out of the PCMC as fast as we can!!

-Tim

Hello everyone,

Since my last Update 4 (05:02am) early this morning we have made alot of progress. It did take us another hour to get Tori settled into her new room and finally administer the Dilaudid which didn't really effect her at all... Again, since she is so far into this episode she will eventually fall asleep for a day. I'm in her room now and her heart rate is still 140-150 beats per minute and she is up and looking at me. She has been up now for about 33 hours straight but her daily medications are going to be given here within the hour.

Tori had a rough night to say the least. It was soooo frustrating to just be by her side while she was soooo miserable... Since we couldn't give any of Tori's medications through her G-Tube as a precaution, we had to rewrite all of her medications to be delivered through an IV and that took some time. We then had to meet with 4 different doctors over a 4 hour time frame before we could actually give any medications. Then the ER nurses had to poke Tori 7-8 times to place the IV and get blood samples... ARGH!! Alright!! Spending that 6 hours in the ER just wasn't fun or right but now I am over it!!...

Since the Dilaudid given around 6:00am this morning didn't work so we decided to just let her stay up until we attempted to place the GJ-Tube once again. It is a actually a double lumen single tube so the original must be pulled out and a new one inserted. We were supposed to do the procedure this morning sometime so we waited, and waited, and waited some more because we wanted to give another double dose of Dilaudid just prior to the procedure so they would be successful. We finally got a commitment to do the procedure at 2:00pm today so we gave her the Dilaudid 15 minutes prior. Amazingly, it did NOT cause Superwoman Tori to sleep once again... But it did at least calm her enough though to go ahead with the new GJ-Tube placement.

The placement began at 2:15pm and I challenged the Radiologists to beat the record of a 10 minute placement. Darin, the radiology technician who has worked on Tori before, told Maria and I about all of the girls in Pray4Tori shirts he saw at the recent Jack Johnson concert. He told us he was unsuccessful in finding them again to introduce himself. Darin decided to play a Jack Johnson CD in the room through the entire procedure just for Tori who was supposed to be at that concert. They began by pulling out the old GJ-Tube which caused ALOT of built up bile in her stomach to come out all over the place. We had forgotten to vent the stomach contents Tori's G-Tube prior to coming in... After cleaning up a little, Peter the radiologist began to work the GJ-Tube into position. Maria and I watched in the back room and the process was very interesting. A consistent X-ray is taken while they are doing this and at certain points a dye is released from the placement wire to see where to lead it to next inside the small intestine. They repeatedly ran into blockage inside the small intestine which is caused by spasming around the small intestine. That spasming is primarily caused by Tori's low body weight. We simply need to fatten her up a bit to remedy this issue. Peter reached a point 30 centimeters into the small intestine and couldn't seem to get by the blockage. He then measured the old GJ-Tube and it stopped at 30 centimeters. He was determined to place the J portion of the new GJ-Tube beyond this and after 45 minutes he did it!! The new placing was at 45 centimeters inside the small intestine which is much better and hopefully it will stay put now!!

The awesome PCMC dentists also stopped by and they are making a new bite guard for Tori as well as a nice, retainer style version. You guys are great!! Thank you once again!!

Tori's blood and lung cultures taken this morning are still turning up negative for any bacteria growth so please hope and pray they continue to do so. Tori's phlegm has definitely changed since early yesterday. It was almost just like saliva in texture and white then but now it is much thicker and green in color. We'll see what the next couple of days brings us. Again, she is being given Zosyn anyway as a precaution.

Tori has now had her daily medications and some more Ibruprofen and she is looking a little more sleepy. She also is getting fed again through the J-Tube. We will recover here in the CMU at the PCMC for tonight at the least. Alright, once I get her sleeping it will be my turn and it appears Maria already has a head start on me :-)

Thanks again everyone and we're looking to put this behind us as fast as we can!! Back to rehabilitation and recovery Tori!!

-Tim and Maria