In A Week Today….

William’s MRI is in a week from today and I don’t really know how to prepare for it. We knew what to expect for his other appointments after his initial appointment so we could plan accordingly. Once we received the letter in the mail with his next appointment date we would just adjust our schedules to make it work.  We packed sippy cups, snacks, new books, toys, his stuffies and favorite blanket. For those follow up appointments William didn’t need to be sedated, we were able to keep him entertained so he would lay still for the 45 minutes to an hour Ultrasound and other tests.

We haven’t had to do it alone. Throughout these appointments William’s nurse, Angela has been a huge support. Angela is the nurse who does all of William’s check-up prior to Ultrasound including weight, height, blood pressure etc. She works specifically in pediatric cardiology and has been at all of William’s appointments. When the Ultrasound tech at William’s second appointment said they were going to sedate him, I was upset. It was so hard on him the first time. But Angela spoke up and said we aren’t going to do this today, William will do just fine. I remember having the same Ultrasound tech at his second appointment and her saying right away that they were going to sedate him. I felt so upset and was thinking how hard that was on him the first time. Williamhen spoke up and said no we aren’t going to need to do this today, William will do just fine. I don’t know if I would have been able to say that on that day. She sat at the end of the bed with me and sang nursery rhymes and helped me with William for the full hour. An hour is a long time to try to keep a child still and entertain him. Angela and I took turns and laughed about our bad singing, it made the time go fast. I know she has truly been a blessing in our life and journey especially on this day as Regan was not able to come. She has truly been a blessing. We had two other appointments before August 7th that went just as smoothly. The MRI will be different, she won’t be there. It will be different nurses and technicians. The MRI department has phoned to confirm his appointment and to remind us of the following; William will be put under, no eating after midnight the night prior, no clear fluids after 6am day of, be at the hospital by 7am and his appointment is at 8am. His MRI will take around an hour and 15min. We will then wait in recovery until he is awake. The new nurse suggested that we go and come back in an hour but I know I won’t be able to do that. I’ve been thinking about what’s the best way to ensure William isn’t too hungry in the morning because as soon as he wakes up he wants to eat. Do we keep him up late? Do we not put him down for a nap the day before and early to bed so he can have juice at 6am? Do we try to wake him at 11pm and then get him to eat and put him back to bed? We are leaning towards keeping him up later. I think part of me is anxious as the MRI just makes it all that much more real. I am glad we can get in next week and don’t have to wait longer because then we will be able to find out when his surgery is and can plan for that. We will have new tractors packed (thank goodness we have access to an endless supply of those), duckie, puppy, big duckie, books and tractor videos on the IPAD. Other than that we just need to do whatever we need to keep him happy without eating or drinking until they put him under. Afterwards he can pick where he wants to go to eat!

Below is a picture that the cardiologist drew for us. These are the areas they will focus on with the MRI so that the surgeons can get all the images they need.IMG_0846[2]

 

 

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Reflecting on August 7th

This morning I was thinking of William’s upcoming MRI on December 1st, and it triggered a lot for me in regards to what the last few years have been like for as us as a family. I guess up until now we were all hoping that William wouldn’t need open heart surgery, his hole would maybe close and that there was nothing else wrong with his heart. I remember how hard it was to hear at his appointment on August 7th,2015 that we will need to move forward and he will need open heart surgery. William not only has a hole in his heart but he also has a pulmonary vein draining oxygenated blood from his lungs into the wrong chamber of his heart. His heart has one chamber that is enlarged. I sat there holding my two year old with waterfall-like tears running down my eyes and not being able to understand anything else everyone was saying. It was like I was in a dream. I knew Regan, my husband was asking all the right questions but I couldn’t hear what they were saying, nothing was registering. I had thoughts running through my head of was there anything else I could have done while I was pregnant, is this my fault, why is this happening etc. After we left there I knew that none of our appointments going froward were going to be like these past few. They were no longer going to be check-ups and that each appointment would only get harder. My mom had been watching Carly for the day so Regan and I decided that we would stay in Saskatoon and take the kids to the new park by the river. We all just needed to have some fun after the long day at the hospital. Now all we can do is wait and prepare for his MRI. The unknown is hard.

William’s First Appointment

October 16th, 2013 was William’s first appointment at Royal University Hospital in Saskatoon. It’s hard to believe that he wasn’t even a year old at the time.  Regan and I received a letter in the mail a couple weeks prior to the appointment with the time and place. With these appointments you just make them work as you don’t know when you will get in again.

We had no idea what to expect or what would be done at the appointment. Looking back I wish we would have asked some questions. William’s first appointment was very scary for him, and very upsetting for us. They weighed and measured him and took his blood pressure, all standard medical checks.  When that was completed they performed an ECG- Electrocardiogram, during which he needed to lay still for 5-10 minutes. When they started to apply the electrodes with the adhesive pads William started crying. The nurse told us that he needed to stay still and asked if he had a soother or a bottle – but at the time he was only nursing. So I climbed up on the bed beside him and nursed him while the other pads were applied.

After they got the reading that they wanted they had to remove the 12+ pads from his body. Of course William didn’t like this and was crying again.  At this point I thought our appointment was done, but I was wrong. William was then sent for an ultrasound of his heart, lungs and chest which required that he stay still for an hour!  He was already scared and upset. The Ultrasound Tech told us that we would need to use nasal drops to sedate him so that he would lay still for them to get the images they needed. We had no other choice because we were not prepared in advance for this appointment.  After the ultrasound was done, we had to wake William up every hour for the next 24 hours every time he fell asleep, so he wouldn’t go into a very deep sleep until the nasal drops were fully out of his system.  It was a long night.  William threw up a couple times that night and I spent a worried night lying on the floor of the room.

In hindsight if we had known ahead of time what was going to happen at his appointment we would have done things differently. We would have brought his sippy cup, favorite blankie, stuffie, and some snacks.

At the appointment we found out that William has a medium sized hole in the center wall of the upper chambers of his heart (Atrial Septal Defect) and that they wanted to keep an eye on the direction that some of his pulmonary veins were pumping blood to his heart. Because William was so healthy and active they said that they would monitor him with appointments every 6 months.

William- 10 months old
William- 10 months old