Tim Schmanski's blog

Tori's first night in the CMU turned out to be a long one for not only her but for Maria as well... Tori basically was in pain and crying all night and all of her medications seemed to have zero effect on her. The multiple doses of Valium and Tranxene didn't touch her at all very early this morning either. Tori's stomach and overall mid section was tensed up and painful for her for most of the day. She was agitated and had more Myoclonic Jerks throughout the day as well. Tori was up for 18 hours straight before we had to use Hydromorphone which is a cousin of Morphine without the nauseating side effects. It finally did the trick and Tori slept for a good 5-6 hours this afternoon. When she woke up the discomfort in her mid section seemed diminished so it hopefully the antibiotics are finally taking effect.

Tori's late night feed yesterday caused her much of her discomfort so all feedings are stopped again until the E coli bacteria is gone.

Tori has been relatively calm throughout the night and we are about to give her some more Valium and Hydromorphone to ensure we all sleep tonight. Both Maria and I will be staying in Tori's room as well. Tori's Myoclonus still does have us a bit concerned and we are going to meet with the Therapist tomorrow morning to discuss additional Baclofen and a few other drugs I have researched on the internet today. We believe Tori would have been totally calm, comfortable, aware and awake tonight if she didn't have the Myoclonic Jerks...

Maria and I met Samuel and Kaylene's parents tonight in the hospital cafeteria. Samuel is a two year old near drowning patient who is in the NTU and Kaylene is a 6 year old near drowning patient who is still in the PICU. Both families have been in the hospital for 7-12 days and it was nice to share some of our experiences with each other. There are similarities and differences in each of our cases but we are all hoping and praying for the best.

Hello again,

Tori has made another move within the PCMC. She was relocated today to the CMU (Childrens Medical Unit) on the 3rd floor. This unit is a step up from the PICU and we hope to stabilize Tori during the next 7-14 days. Our main goals are to eliminate the E coli bacteria in her blood, get the minor Pneumonia corrected in her right lung and to get her digestive tract totally functioning normally again. If we can just get those three items done without ANY other backward steps, Tori could finally be in a 'stable' condition. Then we can focus on the Physical and Occupational Therapy at either the NTU or the Health South Hospital.

Tori's sleeping habits throughout the past few days remained intact today. I only had to give her Benadryl and Valium last night to keep her calm, relaxed and comfortable. Today, just as yesterday, she would open her eyes occasionally for about 10-15 minutes then close them again to sleep. We are quite sure the E coli is causing her severe stomach pain so we are giving as much pain medicine as we can to combat it. Nothing too strong, mainly Tylenol, Benedryl and Valium as needed. We also began a very slow feed today of Pedialyte through the NG Tube in Tori's nose. We stopped the feed late this evening to see how Tori will digest it and we are hoping for the best.

At times today when Tori was awake, she exhibited some agitation and as well as some mild cases of Myoclonus episodes. There would usually be one 1, 2 or 3 Myoclonic Jerks per episode and they weren't nearly as extreme as they have been in the past. We have found that if we try and talk Tori through them and keep her as relaxed as possible she can sometimes make it through without any facial grimmaces or observed pain at all. Keeping the vicious circle of agitation, anxiety and Myoclonus under control is the key goal here. Again, she never got even close to how bad this was in past episodes... Tori's legs appear to be the least affected by the Myoclonic jerks which is another great sign. They mainly effect her arms and torso at this point which do not appear to be as painful as her legs were. So either Tori is too tired and sick to really respond to the Myoclonus episodes at all or all of the medication to prevent them is having some postitive effects. We are of course greatly hoping for the latter to be true... We shall see.

Good evening,

It was determined early this morning that the bacteria in Tori's blood stream is E coli. She more than likely was infected when she aspirated after vomiting which caused stomach or small intestine content to enter her lungs. As I mentioned in yesterdays update, two Antibiotics have been given to combat the E coli and they will be continued to be given for 10 days. Blood samples will be drawn each morning to check for the presence of E coli. The antibiotics are expected to clear the E coli up within 3-4 days.

Tori's temperature remained in the normal 37 degrees Celsius range all day today which is a good sign. She is obviously using all of her energy to fight off the E coli because she is resting and sleeping quite a bit. She will only open her eyes for 10-15 minutes before returning to sleep for a few more hours.

During the last few days since the E coli infection, Tori has not been getting enough fluids so she was very dehydrated. We have been pumping fluids into her as fast as we can today and she is looking much better tonight. Her input and output of fluids is pretty much back to normal again.

A CAT Scan taken at 4:00am this morning has narrowed Tori's digestive issues down to an inflamed Duodenum. She has recieved medication to help with this issue and the fluid coming from her stomach then out of her G-Tube is no longer dark green or black colored as it was yesterday. The fluid is a much more normal looking light green. Based on this improvement Tori will begin getting feeds again later tonight and she is in dire need of them. Her weight has dropped to around 100lbs...

As I reported in my Afternoon update it has been a hectic day for Tori as well as for Maria and I...

The blood culture taken from Tori this morning shows a definite but undetermined type of 'bug' in Tori's system. The blood culture data is showing the 'bug' or Virus more than likely came from her stomach so now the surgical team will have to evaluate her and see if there are G-Tube issues or anything else. The other possible source could be her PIC line so it is being removed tonight. She was given two different Antibiotics tonight to combat the virus. Cultures taken on her lungs have not shown any other viral growth but her lower right lung is quite inflamed according to the X-Rays taken today. Tori has had a high temperature all day and it has been around 39 degrees Celsius. She has been lethargic and sleeping almost the entire day as well and I'm sure she is just feeling horrible...

More X-Rays are being taken as I am typing this to determine if Tor has an intestinal blockage as well... The fluid coming from her stomach is a dark green or black in color and it certainly isn't normal. Yet another issue they are now trying to figure out and she is NOT being feed anymore at this moment.

I'm truly sorry but today there really isn't much positive news to report unfortunately... It has been another frustrating day to say the least and both Maria and I will be staying at the hospital tonight. I guess the only good news for the day is that her vitals stayed consistent and low throughout the day. Her Heart Rate and Breathing Rate stayed low and relaxed. We will see what tonight brings us since she basically slept all day today.

Please hope and pray for Tori to have better days to come and to get her through this difficult stage in her recovery.

Thanks,

-Tim and Maria

Tori's morning was somewhat rough today as she vomited again at 5:00am or so... This time she definitely aspirated into her lungs so they checked her back into the PICU coincidently into room 8, which was her very first room in the PICU. The PICU doctors and nurses have explained to us that patients coming back into the PICU is quite common but it is just frustrating none the less...

Tori's feeds are still not digesting and even though they are going through the NG Tube she had installed on Saturday. X-Rays have shown the NG Tube is indeed inserted into her intestine so it is correctly bypassing her stomach. The main goal now is to determine why her feeds aren't staying down as well as they should be. She is having proper bowel movements so from that perspective everything seems to be working fine. The Morphine she was given earlier seems to have majorly disrupted her system and now we just need to get it functioning normally again.

She did sleep pretty well last night from 11:00pm until 5:00am after she had her Valium. She is currently sleeping as well without the use of any sleep inducing drug. We did witness one other positive sign today when Tori became agitated. She actually calmed herself down on her own without intervention. We are certainly hoping to see this more often as it makes life much easier not only for her, but for us as well.

Thanks again,

-Tim

Hello everyone,

Tori slept in a bit today after her 5:00am dose of Valium. The ended up sleeping quite soundly until 11:00am or so and I was also able to get some sleep from 5:00am until 8:00am. When she awoke we decided to finally get her into her custom wheelchair and take her for a ride!! Maria and Whitney arrived at 12:00pm or so to find her already seat belted in and ready to go. So we gave her the hospital tour and took her outside for a little fresh air as well. She was in the chair for about 70 minutes total and did a good 30 minutes of touring. She really seemed to enjoy it even with her somewhat drowsy state.

Tori remained awake for the most part of the day after her tour. She had several more friends visit including Kenzie, Angel, Courtney, Bree and Chelsy. The list of drugs I broke down in yesterdays update will more than likely be tweaked again because Tori is in too drowsy of a state for our liking. The last weening dose of Haldol was given to Tori this morning so hopefully her alertness and awareness will improve over the next couple of days. We haven't really seen her bright eyed, smiling and laughing for about a week now and we miss it greatly as everyone can imagine... Tweaking the drug dosages is also a very fine line because we do not want to see her in pain either...

That is all for todays short update. Maria will be spending the night with Tori and we are planning to initiate the Valium far earlier than last night. Hopefully it will be just as effective as this mornings dose.

Thanks!

-Tim

Tori did indeed graduate to the NTU yesterday evening as Guy posted earlier and she also decided to stay up all night to celebrate which is why I'm so late with this update... She remained in a low, agitated state basically from 10:00pm until 5:00am this morning. Low agitation refer to a heart rate of 115 to 125 beats per second and breathing rate between 25 to 35 breaths per minute. She has gone much higher than those figures during some of her Thalamic Storms but last night she just had just enough to prevent her from sleeping. Her normal sleep rates are a heart rate 80 to 100 or lower and a breath rate of 15 to 25 or lower. At 5:00am we decided to give Valium a try and it worked great!! Tori totally relaxed and is still sleeping at this moment and it's almost 9:00am on Sunday.

Since I'm a day late on this report I will back track a bit. On Saturday I spoke with the Lead PICU doctor in depth about Tori's next steps. We decided to take a radically different approach by eliminating the drugs Haldol and Morphine totally. Tori has been growing somewhat immune to the effects of Haldol just like she did with Ativan so we are going to stop using them. The Morphine is just very bad for Tori to use... We were also just working with too many drugs to know which ones were having which effect on Tori... So we upped the doses on Propanolol and Baclofen and are continuing to use Valproate and Clondine. We added Tranxene to the mix to replace the drugs we removed. The Tranxene will also be given at steady intervals throughout the day to hopefully prevent some of Tori's Thalamic Storms beforehand. Now we will wait and see how she reacts today and it is my goal to keep her up all day so Maria can sleep tonight!! Tylenol and Benedryl are basic drugs which can be given as needed for pain or as a sleep aid.

Tori had a very relaxed and sleep filled day today. She did have to have a couple of half doses of Morphine at 3:00am and 7:00am but the agitation, Myoclonus and Clonus episodes seem to be diminishing. She woke up for about a half an hour at 8:00am and after that she slept in a deep and very comfortable state. She was placed in her practice wheelchair again for about an hour at 1:00pm and then had a sponge bath and shampoo afterward followed by more sleep. Seeing all of the sleep was very good today because she did it on her own for the most part. We are sure she needed some catching up to do over the last few days... She was awake again tonight without agitation before I left at 9:30pm. Tori just looks and feels alot better than she has over the last few days so hopefully the medications are taking effect here.

Tori had also begun feeding again through a continuous mode and is now recieving the missing drugs again as well. She held down her feeds today since she had NO Morphine!! We still haven't moved to the NTU so we'll hope for it again tomorrow.

Sorry for the late report tonight as I went to take a quick nap with Brendan and Whitney and now it's 5:00am on Saturday...

Thank you again everyone and please include a special prayer for Tori's room mate Brady who passed away today. May you rest in peace Brady.

-Tim

Hello everyone,

Before focusing on the negative aspects of Tori's day I wanted to accentuate the positive activity Tori has displayed over the last several hours tonight. The last Morphine injection was given to her early this morning so the effects are finally wearing off. She was alert, awake and bright eyed for 45-60 minutes tonight around 8:00pm or so. This is very good to see again as it's been a few days since we have seen this behavior. She is now sleeping very comfortably with only Benadryl in her system. We are going to resist giving her anything stronger as much as we possibly can tonight.

The previous part of the day was unfortunately not as pleasant again... The blood and throat cultures that were taken very early this morning as well as the chest x-ray have thankfully turned up negative for any issues. Tori did however vomit a couple more times again today though they were not nearly as extreme as yesterdays. Tori's main issue at this moment is that she cannot digest any of the feeds they are giving her. When she begins to get agitated and starts to vomit they have to suction out all of the feed she has recieved through her G-Tube. The other real bad part of this equation is that NONE of the drugs taken via her stomach are going into Tori's system... They have now switched over most of the drugs back to go into her PIC line but there are several drugs she is taking that cannot be administered in that fashion. We also believe that the Morphine itself is causing her nausea and vomiting because none of that occurred before she started taking it. So we are now extremely motivated to keep her off the Morphine!! Tori is also losing more weight because of the missed feedings so this just has to be corrected as soon as possible.

We primarily used Haldol today to fight her Myoclonus and Clonus episodes. I think the Botox in her calfs and the extra Baclofen is beginning to work because the episodes were very minor compared to the last few days. But then again the Morphine may have affected that as well... Perhaps tomorrow will be a better indicator.

Upon returning to Tori's room after my morning update, the physical therapist team was performing the standard routine on Tori. They also decided to give Tori Botox injections in her calf muscles on each leg. The Botox will moderately paralyze her calf muscles which are causing the majority of Tori's pain during Myoclonus and Clonus episodes. The Botox takes 24-36 hours before it is effective and lasts for 3 months. Our big problem for today was the very painful aftermath of the 3 injections Tori recieved in each of her calf muscles. The doctors used an EMG to locate the exact position in each muscle to place the Botox. The needles went well into Tori's muscles during the placement. Tori obviously became very agitated shortly after the shots and she started having severe Clonus episodes not only in her legs but in her arms and torso. We immediately gave her the typical dose of Haldol to ease her pain, calm her and to put her to sleep. Today it unfortunately had NO effect on Tori... We then gave her an additional dose of Baclofen which worked well at 2:00am episode early this morning. It also had NO effect... By this time two hours had passed and we were left no choice but to use Morphine to totally knock Tori out. It was very frustrating to all of us working with her today including the doctors and nurses. Tori will be very challenging to us all as she gets through this over the next few days or maybe even weeks...

Tori then slept until about 5:00pm or so before she started having more severe Clonus episodes. This time she became so upset she vomited her feed everywhere and choked somewhat as well during the process. The nurse had to use a syringe to extract the feed she was given from Tori's G-Tube. We cleaned her up and changed her bedding and she grew more and more agitated. Her heart rate spiked, her breathing escalated and now her temperature began rising. She was at 37 degrees Celsius for days and now she was at 38.9 degrees... We ended up having to quickly repeat the Haldol then Morphine cycle we used earlier to knock her out again. The doctors now believe she Aspirated the vomit into her lungs which has now altered her breathing and given her a fever. Blood and throat cultures have been taken as well as a chest x-ray to try and determine the issue. Maria is staying at the hospital tonight and is awaiting the results just as I will be at home.