Did you know that in order to get the full 7 bottles of Ensure in through a pump and into Mathew, it will be going from 6 am to midnight? That would be a drag planning a life around that. The TwoCal Ensure is too rich to go through the tube and if Mathew drinks 7 bottles/cans of that the rich sugar content will send his blood sugars scrambling for cover. So the idea is for him to drink at least 1 bottle of Ensure a day plus 2 of the TwoCal for the extra nutrients.

The pump was feeding the Ensure at a very slow rate today; it was starting at 15 ml/hour for the first couple of hours. Then, if Mathew tolerated it well it was going to be upped slowly every few hours until a happy medium is maintained. Since chemo is starting tomorrow and he has such a wretched time of it lately the feeding pump should give him a rest for a couple of days. Then, as I said earlier, we want to switch to the bolus feeding as that is easier to do at home.

It is important that Mathew continue to eat because the brain will eventually disconnect eating and feeling full which will make eating much harder later on. Another problem is that the mouth and throat forget how to swallow so physiotherapy is needed to teach those muscles how to work properly again and it isn’t always successful. It’s damned if you do and damned if you don’t.

Yesterday Mathew was in pain and coming out of recovery made him sleepy for most of the day; compounded by the shots of morphine. He didn`t budge from lying on his back until noon today. He tried rolling onto his side earlier in the day but it hurt his incision and stomach too much. By noon however I told him he had to get up and go to the bathroom again and once he got up once he realized it wasn`t as bad as he thought.

When he is being fed by the pump he has to be propped up to a 45 degree angle on the bed so nothing backs up into his throat, causing indigestion or even worse, slipping down the wrong pipe and into his lungs. Once he is fed by the syringe into the feeding tube then Mathew has to sit up straight for the procedure to work the best.

The tube has to be flushed before each feeding and after. Before a feeding 30 ml of water has to be pushed through and after a meal 60ml of water. This is to keep the tube clear. All liquids going through the tube should be a room temperature; if cold liquids go into his stomach it will cramp up and make him uncomfortable.

Yet a brand new book of terms and rules to live by. We already have a binder with various medical information and tests kept in compartments plus we keep a daily record of all liquids, meals and medication taken in. Now I`m getting a small book to keep details of his feeding schedule. Cripes, he sounds like he`s getting younger when in fact he`ll be 21 in 4 months!

The CT scan results yesterday were a huge relief for all of us. I am so grateful that all of this hard treatment Mathew is enduring is producing favourable results. It boosts the determination to get through it because you know it is working. It is my turn at home for the night and I`m going to sleep with no nightmares tonight! I`m exhausted and part of that is due to the subconscious stress of waiting for the CT scan to happen and wondering what kind of results would come back. Dread is such a downer and it sucks the energy right out of you. Once that weight is lifted then it takes a day or two to bounce back. Of course with the intravenous saline solution running through, plus Mathew drinking water AND the feeding pump there are many trips to the bathroom. In another month of so I am going to sleepwalk through the nights and not remember anything in the morning!

This morning the orderlies showed up right at 8 am to take Mathew back to intervention (as it is called) to recheck the feeding tube. It couldn`t be used until an xray showed the tube sitting in the right spot 24 hours after insertion. Well, those orderlies had him out the door before I even hopped out of the cot. I had to holler at them to wait long enough to throw my shoes on and grab my purse so I could run down the hall after them. I ended up sitting in the ultrasound waiting room and it was only after I got back to the room that Mathew pointed to my hair… to my horror bed-head had hair sticking out everywhere!

The Oncology floor is still trying to eradicate the C-Difficile bug by scrubbing everything down with bleach daily. The nurses aren’t allowed to have food outside of their designated lunch room as directed by the infectious control team. The two common bugs found in hospitals and in our ward, C-Difficile and MSRA, are extremely contagious. Imagine my discomfort then, while eating my dinner in the common tv lounge last night, only to discover three patients sitting with me while their rooms were being sterilized! One patient was receiving a blood transfusion beside me, another was suffering pain and using an oxygen tank on the couch beside me while the third huddled in a chair behind me. That begets the question…how often is the lounge scrubbed down? I know that the fabric chairs used in patients room were thrown out. A cot with a cloth mattress was disposed of as well. Perhaps a quarantine sign of sorts needs to be posted when C-Difficile patients converge in the common room. I ate in the tv room so the smell of my supper wouldn’t bother Mathew. In the future however, I am steering clear of that area and will eat in his room ~ yes, I am paranoid about bugs I can’t see that can make Mathew very, very ill.

It’s enough to make anyone a germaphobe!