Here is what we experienced during and after our daughters VSD surgery in Toronto at Sick Kids Hospital. I just want to make a note that this was our experience and may not necessarily be yours. I know that I have some readers that may find themselves having a similar surgery at the same hospital, so this is mainly for you and your little ones.
First, the surgeons and the surgical teams are great at their jobs. That said, we found that some do not have great bed side manner. Meaning you may not feel warm and fuzzy throughout the process. What you may feel is that they are there to get the job done, done well and done quickly. We felt that it was more of a production line or revolving door of patients who are in need. We do understand that Sick Kids is a place that is very much in demand and sought after in order to help many kids that are in need and they do their best to help as many as possible. It's just that this quick turn around leaves little time for pleasantries. Those of you who stayed in London, might not experience that same love from the staff at Sick Kids. However, again they are great at getting the job done, which is the most important part.
Hazel was in the Cardiac Critical Care Unit for Day 1 and Day 2 after surgery where she had one-on-one care from excellent nurses. Again, no warm and fuzzy feeling from them, but they did their jobs well and made sure Hazel was stable post op. When we saw her for the first time she was really drugged up and out of it. She had a central line in her neck, an IV in her foot, ventilation tube in her mouth, a feeding tube in her nose, two drainage tubes in her chest, plus the big scar. All of this the nurse will go over with you in the Pre-Op apt a couple of days before.
On Day 3 and Day 4, Hazel then went into a private room on the floor. Here is where things got more difficult. The care is no longer one-to-one, so we could never leave Hazel's side. One of us had to be there always, which got tricky because there really is only room for one parent to sleep on the couch (they will pull a cot in for you for the second parent if you want). We were staying at the Ronald McDonald House which is about a 5-7 minute walk from the hospital in downtown TO. Not really safe to walk alone at night. Matt had to walk me back and we would have to make sure the nurses watched Hazel while we were gone. RMH is in a good location and very affordable ($15 per night). I hear they book up fast so we got lucky and were able to stay there. I might have a back up plan just in case. The Delta Chelsea is close by and offers rates for Sick Kids, also there is Super 8, I believe.
Physically, Hazel was still in a lot of pain. Here is where you really have to advocate for your child. You know them best and the nurses are pretty good about listening to your needs. Since Hazel was on Morphine and Tylenol for her pain, she experienced trouble with her bowels. The nurses put her on PEG, a stool softener. She was also on Lasiks to help her eliminate fluids, which babies can retain after being on bypass and having surgery. She did need a blood transfusion in the operation which is very common for this type of surgery.
At discharge on Day 5 from the hospital, Hazel was on Tylenol for pain, Advil for the infusion around her heart (also normal after surgery and it corrected itself in about a week), PEG, and Lasiks. Once home, Hazel appeared to be more uncomfortable. She was crying non-stop and was inconsolable at times. Bringing her to the pediatrician and calling London, we figured out that Sick Kids did not give her the appropriate dosage of Tylenol or Advil. Also, we were given morphine to help her as well. It helped a little bit but still she was in a lot of pain. A trip to the ER in Windsor, were she had x-rays done, showed that she DID NOT have blockage in her bowels and therefore the PEG was having the adverse affect on her, causing her great discomfort. For us, this pain was the worst of it. We didn't expect her to be like this at home so it was a shock. Come to find out that Sick Kids may have told us to keep giving her the PEG just because sometime kids with Down Syndrome have problems with their bowels. Fair enough, but Hazel is not one of those kids. We may have avoided some undue pain for our daughter had they simply asked us if she was one of those kids or not.
So here is where I caution you, especially if your child has Down Syndrome. ALL kids with Down Syndrome are NOT the same and I feel that the medical profession sometimes thinks that they are (I believe that this probably happens with all children, even those who do not have T21). If I could go back and do it again I would ask tons of questions. Why should my daughter take this? Could you be generalizing because she has T 21? Just beware, you know your child the best and don't assume the nurses and doctors know that your child needs something just based on them having T 21.
Just to be clear I am in no way saying that Sick Kids can't and won't get the job done well. We are very thankful for the work they did to help Hazel and will be forever grateful for helping put her heart issue behind us. I am saying that taking the team approach to healing seemed to work the best. Their suggestions, based on your knowledge is a great strategy to helping your little one heal. Don't forget to ask questions!!! If there are any questions I can answer, leave a comment on the blog or e-mail me and I will try to answer with the knowledge we gained from our own experiences.
Hazel has never been better and the surgery helped her so much with feeding, breathing and general comfort. She is much more relaxed and happy since the hole has been fixed. The scar healed fast and really didn't cause her too much pain. However, she has had a hard time sleeping for long periods of time at night since we have been home. She is like newborn again. Sleeping for a few hours and waking to eat or with sore tummy. Not sure if this is normal behaviour after a surgery, but it has proven to be challenging for all of us. I thought we were done with the newborn stage!!!
Hopefully this information is helpful to anyone who may find themselves in a similar situation as our family. Good luck to anyone who may have to undergo such a surgery, or who knows a loved one who will. The procedure is straight forward and Sick Kids does it right!!!
