[10-30-08] Mom's comments

Austin was feeling sick when I arrived this morning. He tried to drink ensure and it didn't stay down. He has been getting Benyadril and Adavan (sorry if I spell them wrong) to help with the nausea. Around 12:20 they started his chemo. He slept off and on for almost three hours and then started shaking violently. He was freezing. I went and got him two hot blankets, but that didn't help. I asked the nurse to come right away. Soon after it became worse and as I was getting ready to yell for a nurse (my hand was reaching for the handle) - she came in.

The nurse had to check his blood pressure and temperature because they are concerned that his blood pressure has been going too low. Finally two nurses came in with four more hot blankets and IV medications - Demerol and adavin to stop the shakes. One of his doctors just came in and checked up on Austin, then she ordered Compazine (another anti nausea medication) for Austin. He has already had all the Benedryl and Adavan allowable in a certain time frame. Because of all the shaking his temp. is 103.6. To tell the truth, he was shaking so hard (he said he was freezing) I almost climbed into the bed with him and held him!

The medication has worked and the chills and shaking have ceased - Thank God!

On a side note...many of the nurses and aides have admired the chemo quilt that Liz's mom made for Austin. I am happy that I can be one of his support team and although the circumstances are not the best, what an awesome opportunity to spend quality time with my son.

Yesterday Austin told me he was bored and he laughed when I offered to get him his DS or a book. Austin said that it was the first time that I didn't respond with... "Then clean your room" or some other chore. I told him that this is the first time in his life that he has my undivided attention for two months and I am at his beck and call.

I hope Austin will feel better soon so that he can write his perceptions of this event. His chemo today is administered for over a four hour time period and he has about 20 minutes left.

As I finish up now, Austin is asleep again and gently snoring with a few occasional grunts.

Mom - cont. 5:30pm

Austin's temp reached 103.7 and is starting to come down; however, it looks pretty certain that he will be going upstairs to ICU for the night. The possibilities are these: 1. He has some sort of infection/bacteria in his line and they will have to remove it, use veins for IVs for a day or so then put in a PIC line...which is like a port but it enters at the inside bend of the elbow and goes to his chest. They use exray when they place the line. 2. He is just having chemo induced fever or 3. he has some sort of other infection. They did a blood culture last night and again around 3:45 today. It takes 24 hours to get culture results back (they also did one Sunday night).

I will be allowed to stay with him until tonight. It is hard to watch Austin feel so bad. His symptoms are: Fever - which has been pretty continuous since Sunday night but varies in severity, today being the worse. Neck pain - this seems to be a result of the fever but could also be a sign of infection. Headaches - again fever related. Backaches - no comment has been made about that but Austin addressed that in previous posts. Nausea/vomiting, today is really the first time since admittance that there has been actual vomiting (to my knowledge). Fast/heavy breathing, I know that could be caused by pain due to my personal experience. Dry mouth/thirst, no comment. Severe chills/shaking which the nurses call "rigors". Sweating, due to fever. Basically, Austin feels awful.

I asked the nurse and he says that it is obvious that Austin has some sort of infection and that it is pretty certain he will be going to ICU for a day or two. Once they find the source of infection, then can treat it. Meanwhile, they have giving stronger broad spectrum antibiodics, pushing fluids via IV and watching him very closely. In ICU there are more monitoring machines and they can watch him even closer - but the draw back in ICU is the germs that are up there from other patients. I will address that more later when I learn more about it.

to be continued.


6:30pm

BP 113/46 temp 40.6c = +105 degrees adding oxygen to assist breathing

They have taken blood gasses because of Austin's rapid breathing
The move to ICU is almost certain until they can find where the infection is.
The "germ" thing in ICU is during transportation, but Austin will have his HEPA mask on to protect him. He is sleeping - all the meds are sedating him.

6:50 BP 104/40 temp 39.6c (after drinking cold water). Ice packs on neck and head. Oxygen saturation 95 w/assistance - taking off assistance and will recheck in 10 min.
Gave Adavan (which contains some tylanol which also helps with fever). Austin is drinking a lot of water.

6:58pm Oxygen saturation 88 temp 39.0c 102.2 White cell count is down to .4
Back on oxygen support. Austin will be going to ICU. When Austin lays flat his breathing is more labored so it is better for his head and chest to be elevated - but not a huge difference. Central line - tunneled (his port) will be pulled in about 15 minutes. They will put a central line in at ICU, probably in his neck. All labs are consistant with an infection. IV being started at 7:06pm. Austin is now Neutropenic (ok I can't spell). This means he must be in "isolation". I must say I am impresseed. He has had a doctor stay on the ward to monitor him, his nurse stayed past his shift and right now he has 6 nurses and 2 doctors in the room (the ICU team is here).