Wednesday, September 14th - Day 87 Update

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