Hanging by a thread...

That is seriously how I feel right now....that we are just hanging by a thread.

Perhaps I should start by warning you all that this is LONG. Okay not LONG but insanely LONG. We have been here for 9 hours and holy what a day. You may want to make yourself comfortable, perhaps get some tea because this is one rocky ride.

Lets rewind to yesterday....

We arrived at the shared clinics at the IWK for our follow up with the cleft palate team. This team includes a feeding team (headed by the nurse that I didn't really get on with), a plastic surgeon, an ENT and a pediatrician to name a few.

Things started off alright...mostly measurements and background about how things have been since Ben was discharged. His weight was up by a few grams...nothing enough to be excited about but at least he didn't lose. The nurse was bordering on rude. I tried my best to hold it together but lack of sleep, lack of eating and feeling rather attacked I lost it. I was crying I was so angry. While Dr. Hilliard and every other health care person involved in Ben's care has asked me the same questions this was really the first time I felt I and my parenting was being attacked. It was like she was insinuating that I wasn't feeding him...or feeding him correctly. My husband jumped to my defense but she really wasn't listening to anyone but herself.

As the morning progressed my frustration only increased. The Doctor from plastics came and talked with us from the plastic surgery point of view. Not much had changed really. His main concern was that Ben wasn't putting on weight like he should be. He actually went above and beyond and explained that babies who are born with Pierre Robin often seem to have a set back (like what we are experiencing now) around the 4-6 week mark. We are at that point now so this could be what is contributing to the poor weight gain. He could not however, explain why this is. While this does seem to explain where Ben is now it has some serious implications. Due to the fact Ben isn't putting on weight his overall growth will inevitably slow. This means his jaw will not grow as quickly as it could and will simply prolong the breathing issues. Prolonging the breathing issues will continue to complicate feeding since Ben has to work harder to eat and burns more calories than he gets in many cases. This vicious circle means that his palate surgery won't be able to happen as soon as it could because of poor growth. In other words he was supporting the insertion of an NG tube. While I was frustrated, I know this is the best solution. The pediatrician came in and said her bit but it was basically what the plastics guy had just gone through anyway. The next discussion was around admission and inserting an NG tube. While I wanted to stay and have things start moving right then and there, the pediatric medical unit was full. Arrangements for a direct admission were made for the following day (today) at 10:00am. I should make it known that I explained my rather unique situation, in the hopes that the nurse would have half a heart (and brain!) and help me work something out. My husband is going back to the UK next week, my family goes to Barbados next week. Leaving me with a sick infant and 2 other kids to care for. My concern is not about being home, but what to do should Ben need to be readmitted. The nurse was rude stating my other children could be anywhere around let alone room in. While I didn't expect them to room in with Ben I did think perhaps we could find some solution to what may happen. I should have expected this response when it was like pulling teeth for her to make sure arrangements could be made for Ashley to stay with me. I became quite upset, understandably, wanting to know what I was to do with the other kids should Ben need more care. She told me to stop worrying, to calm down and basically get over it....Can you tell I don't care for this woman!!!!!

The nurse started in again about me "calming down and stop crying" before ushering my husband, Harrison and I out the door to the ENT department. This was actually the most relaxing and overall best part of the whole visit. The ENT guys seem great. They were informative without being pushy or rude. The explanation of why Pierre Robin children get more fluid build up and have more infections was covered as were the overview of tube insertion surgery. No big deal. SOooooooo we head back to the clinic.

After returning the nurse decided to have one more go at me before we left for the day. She wanted to see Ben feed. While the breast milk was heating was when she, in my opinion, crossed a line. She told me in an attempt to save my husband and I money and added financial stress during this time, my husband should return to the UK and stay there for at least 6 months!!! To be honest not much registered after that....I was FURIOUS!!!! I then tried to get her to listen again...it still didn't work. She didn't listen to how Ben was feeding, what medications he was on, what his schedule was like, what his doctors in the valley said or anything really. As my husband pointed out I think she just likes the sound of her own voice. She followed by saying "Ben isn't a sick baby, throw your guilt out the window and be happy he isn't dying...I mean it isn't like he has cancer." and walked out!!!!!!!!!!!!!!!!!!!!! ARGH!!!!!!!! Sooo the opposite of being helpful.

The nurse came back to watch Ben feed and was very snotty and down right rude. "Oh look he does suck on the bottle" "Oh he did take his feed in under 40 minutes" "He seems to be breathing okay." I felt like screaming no Sh*t Sherlock at her but realized that wouldn't get me anywhere.

I was never so glad to leave an appointment in all my life and knowing we were coming back to be admitted made me feel sick!

Fast forward to today...

We are readmitted to the Pediatric medical unit. We arrived at 10am. Once the admitting paperwork was completed we headed up to the 7th floor of the IWK children's site.

Things stared off pretty slowly. The nurse came in, eventually, and did the nursing admission database with me. She took me for a tour of the unit. She did some basic vitals on Ben and left us too it.

A resident pediatric doctor came in and took a complete history. He also did a basic assessment of Ben and left.

The nurse brought a breast pump and my husband hunted down a pump kit for me. I called the pharmacy back home to get the dosage of Ben's medication that I forgot to bring with us and my husband and I had lunch.

Ben feed and slept as usual. Genetics came in to see us and went over the results that came back before Christmas in more depth. After they left my husband and I were wondering what was taking so long for someone to come insert a stupid NG tube!

I eventually flagged down our nurse who informed me they were waiting on the anesthesiologist before putting the tube in. I thought this was strange since the anesthesiologist wasn't present when he had the NG tube put in the NICU.

A social worker came to help us iron out any needs we may have to make our stay more comfortable. Since the nurse from yesterday hadn't found Ashley a cot, I asked if she could get him back in Ronald MacDonald house. She did. She was also able to provide us with some phone card to call home to the kids and our family that is away.

While she was here the consultant from plastics came in. He explained to us that the anesthesiologist felt Ben should be in the OR to have the NG tube placed. He also came to explain that when this is the case that the child is often looking at having mandibular distraction osteogenesis surgery in the near future. From this point on all the conversations became about surgery. Basically the distraction is a surgical procedure to lengthen the jaw and stabilizes the airway. I will explain the procedure in more depth another time. The plastics doctor continued on the he and his associate from ENT Dr Hong would be back to see us.

They came back a little later and went over more specifics regarding the procedure and the benefits of Ben having it done and having it done sooner rather than later. To see if Ben is a surgical candidate we need to have a CT scan done and a 3d mandibular reconstruction done as well as a bronchoscopy. Both will need to be done under sedation, so they will try to be arranged for the same day. That will be happening sometime next week.

Dr Hong came back a bit later with a nurse and put the NG tube in. They decided that having him in the OR was overkill since he tolerated the procedure well while in the NICU. Other than absolutely HATING the thing...Ben is doing well with it.

The next pain in the bum is that the feeding schedule has him doing what he was at home! The dietetics department have him on 3 oz every 3 hours by bottle! He is taking and has been taking that at home. They are only going to top up to 3 oz when he can't meet the 3oz per hour feeding schedule! It seems pointless for him to have that tube!

Right now I am trying to have all the information sink in to make scenes. It isn't really working.

It looks like we will be here a while....It looks like Ben will be having his first surgery soon...and he will be going through loads of tests.

I am not sure my nerves will take much more!