Long Day

Today was Ben's CT. It was a very long day, and honestly harder on him than it was on me.

Overnight we delayed all his feeds for 20-30 minutes so that his last feed would be around 6am. We also decided to push all the feeds via the NG tube to allow him to rest in preparation for the long day ahead of him.

At 8 am we were told that we may get to have the CT done early so to start getting Ben ready around 9:30. I dressed him in his Jonny shirt and started the NG pump with clear fluids he was allowed.

10am and nothing...we were still waiting.

11:30 Ashley called to let me know how he and Harrison were doing. I cut the call short since someone was at the door.

The resident for pediatrics was at the door with the nurse whom was less than amused. I couldn't quite grasp why she was here. She explained that (not unlike yesterday) there had been a "misunderstanding" between departments. The person booking the CT was under the impression that Ben would be allowed to be sedated and remain on his front, the radiologist however wanted Ben on his back meaning he would need to be sedated with a breathing tube, Dr. Hong wanted the CT done on his front with no sedation. Since there were not 1, not 2 but 3 different scenarios the resident wasn't sure what the actual plan was going to be. She was going to page Dr. Hong and reassess the situation in 45 minutes to an hour.

I spent the next 78 minutes calling Ashley and generally fuming over the situation. Poor Ben was originally here to gain weight. He had to this point spent over 6 hours with no food and no plan to resume feeds until someone could figure out what the heck was going to happen. Not exactly easy for him to put on weight when he can't take a feed. I mean with an anesthetic clearly he can't eat before hand but I thought all these little details (like IF he was going to be given an anaesthetic or not) should have been worked out in advance of his fast.

At shortly past one Ben's nurse returned to explain we could resume feeds and that the CT people were going to "try" the CT unsedated and with Ben on his front.

After half of a feed, we were called to the CT. Ben was swaddled and placed on his tummy in the CT machine, the little protective blanket wrapped around him so only his little head was visible. Normally parents aren't allowed in but somehow I talked my way in, and was given a very attractive protective apron. I stood on once side of the scanner, his nurse on the other. I wanted to stay close so he would know I was there and didn't leave him.

Ben was a super star. He only moved once during the whole scan and from what the techs said, they were pleased with the images.

Now the waiting game started to find out if Ben was a surgical candidate.

At 1522 Dr. Hong walked in. A small surgical instrument pack in his hand. He told me he reviewed the scan and that there was in fact enough bone mass in Ben's jaw to have the surgery!!! He showed me the device he and Dr. Belozy would be using in Ben's jaw. He also said that tomorrow he would assess Ben's upper airway in the ENT clinic and if that was okay, then the instruments would be ordered and the surgeons would start looking for some OR time over the next two to three weeks. Once a date is booked a multidisciplinary meeting will be held with Ashley and I to discuss the benefits and risks of the surgery in more detail.


This day may have been long, and frustrating, however it ended on the highest of high notes. Ben is a surgical candidate. In a few short weeks he will be able to breathe easily. At the moment it doesn't seem possible...I just hope I'm not dreaming.

READ THE SIGN!!!!!!!!!

It feels like I go over this daily...in fact I am sure I do. Last night we had a sign put up. I have been asked 4 times in 12 hours if he can go on his back. The answer for now is still no.

Yesterday was a strange day. Things seemed to happen quickly, yet at the same time it was like nothing was happening at all. The CT and bronchoscopy are hopefully being done today. Ben took his last feed via his NG tube and the kangaroo pump around 7:30am. He will need to be put under by the anesthetist and have a breathing tube placed.

The tricky part for the staff is that Ben has to be on his tummy and the tests and surgery need to be done on his back. This is why he needs to be put to sleep and have the breathing tube placed. Even the CT will have to be done in the OR. This complicates things further as so many staff need to be present for this to take place. At the moment Radiology, Pediatrics, ENT, Plastics, Respiratory, and anaesthesiology are all trying to coordinate their schedules with an available OR to get the test and procedure done. As of right now we hope he will be going later this afternoon, but we may have to resume the feeds and try for the tests tomorrow.

On a side note Ashley and I started our education/training with Ben's NG tube last evening. We were given a home tube feed package with information and ordering numbers. This morning I, along with his nurse, did a double check for placement. Then hooked up the pump, issued the feed, gave Ben his medications via the NG, flushed the line and taped the tube back so he won't pull it out. I felt very awkward doing it, but considering it was only my first time doing it solo and only the second time total, it didn't go that badly. I am sure by the time of discharge I will be able to do it in my sleep.

Weight Check

Last night was a good night for Ben. The pediatrician following us at the IWK, Dr. Szudec, along with the pediatric dietitian have Ben on a high calorie diet. Right now he is on breast milk fortified with a concentrated formula. The proportion has stayed the same as what Dr. Hilliard put us on a few days ago in the valley. 100mL of breast milk and 25mL of formula.

This is just short of 4 ounces. He gets this "4" ounces every 4 hours. They want him to try and take as much from the bottle as possible and just supplement with the NG tube.

• To give him a much needed rest, as soon as Ben starts to become sleepy and has no interest in continuing to be awake we don't push him and the rest is delivered via gavage. Overnight they are allowing him to sleep and giving the total feed via the NG tube with the use of a pump.

It seems to be working. For the second day Ben's weight has increased. From what the nurse was saying it was by quite a bit as well. This is a huge relief since he needs to put on weight and continue to gain before his surgery can be done. I wish the nurse had told me what he weighed; she simply told me "It isn't good for you to be fixated on numbers, you will drive yourself crazy." Very nice nurse, very good to Ben and she knows her stuff....still I will go behind her back and ask his nurse tonight what he weighed.

Fingers crossed this continues and Ben's weight at least gets back to his birth weight over the next few days.

NG tube....Number Two....

Ben decided he no longer wanted nor needed his NG tube. While the nurse was doing his vitals his little hand yanked the NG tube out in one movement.

One nurse (who was covering for our nurse) thought it was okay for me to put another NG tube in....despite not ever being shown how, or the fact he can't tolerate being on his back AND it took a doctor and a nurse to get it in yesterday. Needless to say I told her that until he could be on his back longer than 4 or 5 seconds without his sats dropping I was NOT comfortable doing it and would not do it. I also told her I needed to be shown properly how to measure the tube, place the tube, hold Ben and so on and so forth.

In the end the ENT doctor on call, and Anaesthetist and our normal nurse came. It took all three of them to get the new (longer) NG tube in.

I think the plan is to do total NG feeds until the weight comes up a bit. I am alright with this. He needs his strength and to gain some weight so we can get his airway sorted out.

This can and probably will change again. Only time will tell