The weeks and days leading up to our daughters surgery was exceptionally draining on us as parents mostly because of the unknown. I found that I had so many questions that were not necessarily appropriate for the doctor, but were burning none-the-less. This section will hopefully answer many of those questions (and if it doesn't, please e-mail and ask kcahayes@yahoo.com this is exactly why I wanted to do this website):

*The Day of Check-in:

For us it was a highly emotional day so many fears (I will tell you that for Abbys second surgery it was much, much better in terms of anxiety) The only thing that Abby had to have done was to give blood and take an x-ray. The rest of the time was spent occupying our daughter and trying to occupy ourselves with thoughts of something more pleasant. Shriners has a good deal of recreational activities for children. I remember Abby was having fun playing with everything. I had brought so many of her toys to keep her busy, but she was much more interested in what the hospital had to offer. My suggestion bring a few favorites only (the room gets too cluttered otherwise!).

One parent gets to stay overnight with the child. We found this the most stressful part of the day having to separate the night before her surgery was not ideal for us at all. The nurses are pretty strict about this rule. So dont have an expectation that you will be able to all stay together (there are several places to stay in the area refer to that section of this website).

The night before surgery you will give your child a bath with the hospitals soap (I believe it is an anitbacterial soap know that it stings the eyes) and s/he will not be allowed to eat past midnight. This means it is a good idea to not have anything to eat or drink yourself in the morning in front of your child out of sight is out of mind for most kids.

The morning of surgery someone will come from the OR to escort you and your child down to the 3^rd floor (you usually are staying on the 7^th floor of the hospital) There you will be taken into the OR "holding" area where you sit and wait to meet the anethesiologist. During this time they have a dvd player and tons of movies to keep your child occupied. While waiting your child will also be given a medicine that will make him/her very sleepy. They usually wait 10 to 15 minutes after the medicine is given and then they come to take your child to the OR. Unfortunately you do not get to go into the actual OR. The person that comes to take your child will carry them to the OR and you can follow behind to the door of the OR if necessary, but that is it. Abby did not even cry the 1^st time she was taken away (I thought for sure she would be screaming, but thank goodness she did not. The second surgery was the same way, but she did cry a little this time). From what I understand, they put them under relatively soon after they take them away so there is not much time for them to know what is going on. The IV is not started until after s/he is asleep. Once your child is taken you go to a waiting room on the 7th floor. The waiting room has a bathroom, chairs, t.v. and magazines. There is a phone located there as well with the OR phone number listed directly above it in big print. They tell you that if you have to know what is going on and need an update you can call that number and they will help you. They are excellent about this. They usually come and give you a report every hour regardless of if you call in to them or not. Be prepared though the surgery does not start the minute your child goes into the OR. There can be a long preparation time before the surgery starts (I believe Abby had 45 minutes to an hour before her actual procedure started).

I am sure each childs reaction to the surgical process is different based on his/her individual needs and the surgical procedure itself. I can only talk from my experience and include those experiences that others share with me. For Abby, she did not have to be on a ventilator so she was waking up pretty soon after surgery. She was of course exceptionally tired and not fully aware of her surroundings. There really was no real communication between us that day because she really was "out of it". The most difficult part is that as a mom I wanted to pick her up to comfort her, but was unable to because of doctors orders.

The day of surgery was the most difficult for us as parents because the entire care of your child is turned over to the nurses and doctors and there is not much you can do. I found it necessary to be with her at all times, but I did learn the hard way that even though I wanted her to know that mom was there, it made it worse. I found that standing next to her and stroking her hair or singing only made her want me to pick her up and make it better both of which I could not do. After a long hard look at what was happening I finally realized I was better serving Abby if I sat in a chair in the room, but out of sight and sound. This was so painful for me, but truly was the best thing for her once I put some distance between us she was much calmer. The nurses told me that this is a very common experience.

I feel the need to mention that my daughter had an allergic reaction to morphine. I am not sure what makes the determination as to what pain medicine they choose to use - I can only assume that morphine is pretty common. For the first several hours after surgery Abby was constantly pulling at the oxygen in her nose and trying to rub her nose. The nurse continued to give more morphine in an attempt to relieve our daughter of her pain and even gave her medication to ease anxiety, but as the day turned into night it only became worse. The night nurse told us that a side effect of morphine is an extremely itchy nose, but she also picked up on the fact that her eyes were beginning to puff and turn red. She called the doctor and let them know she thought she was having an allergic reaction and was switched to another pain medication which made all the difference in the world. Watching our daughter go through all that discomfort was terrible and if we had only been more informed about possible side effects we could have said something sooner. I tell you this not to scare anyone as I am sure that this is not the norm but I dont think you can ever be too informed when it comes to your child. Remember, no one cares more for your child than you do I advise everyone to write down the times that medications are due and what medications are to be given. You then will be able to speak up if there is a problem. Knowing when medications are due also helped me as a parent feel more in control. I could interpret her signs of pain and need for meds because I knew what she had been given and when.

The next morning Abby was still pretty sleepy and unaware of her surroundings. In the morning they do rounds (it is a separate set of doctors that take care of your child when in Temple than when back at Shriners) and make the plan for your child. We were pleased that later that morning she was transferred back to Shriners into the step down unit called the PACU. There you are in a room with several other children. This room has its own set of nurses to give more direct attention to each patient versus the regular hospital rooms that are attended to by nurses at the main nurses station. Again, the mom OR dad is allowed to stay bedside with the child 24 hours a day they provide you with a recliner chair at the bedside. If the PACU is filled to capacity, space is pretty cramped and it can be noisy, but Abby was so tired it really did not make much difference.

They finally heard bowel sounds in the afternoon and she was quick to eat Jello, crackers, and juice. The nurses like to start them off with very light food in the beginning. The rest of that day and night were spent in the PACU and with me holding her (they have a bed or crib for your child to sleep in of course, but I found Abby was most comfortable with me holding her). She still had IV lines and her tubes in place and were giving her medicine to her through IV. They were regularly giving her pain medication. During the time she was in the PACU they would try to get her to do as much exhaling or blowing as possible. They had bubbles and party blowers to try and accomplish this. Sometimes she would do it a little, sometimes she would not. One other medication she was receiving during this time was a breathing treatment called a nebulizer. This is a hand-held device that is hooked up to the oxygen supply in the wall that blows a steam-like substance (but is not hot) that contains medicine to breathe. You have to hold it in front of your childs nose and mouth so the "steam" is inhaled. They last about 10 minutes and are done every several hours.

Abby only had to be in the PACU for one day which I believe to be the norm. After that she was transferred back to a regular room. Over the course of the next several days Abby became more and more herself and began to follow a regular sleeping routine in that she woke in the morning, had a late morning nap and then a late afternoon nap. She still was being held almost all of the time. The doctors encouraged us to get her up and move her around (we thought we had to wait for a physical therapist to come and do this with her for the first time, but we were wrong). We had waited several days before attempting to let her get up and walk as we had been told that after spine surgery a childs balance may be off; however, there was no medical reason for us to have waited so long. The tubes were still in place which made it a little more difficult to get up and move. The first time we had Abby stand she cried and cried and did not want to take any steps this surprised us because we had been under the impression that many children are getting up and moving with no real problems. We did find that slowly but surely Abby started self initiating more and more time up and around. The true turning point was once the tubes were removed. It was like a switch had been flipped. Once the tubes came out she started walking a lot more.

The tubes stayed in place for several days. The doctors and nurses would check the fluid levels daily to determine if the tubes were ready to come out. The overall hospitalization was 7 days and the tubes came out on day 5. The tubes were taken out at bedside. The stitches are snipped around the tubes and then they are pulled out. Obviously some pain was involved, but the nurses give pain medication before the procedure and it is all over with pretty quickly. Abby felt so much better once they were out. We were given the option of leaving on day 6 or waiting an additional day and we opted to wait one more day before leaving to make sure her wounds were healing properly. The bandages were not changed until the tubes were removed. Five days was a long time to have the same bandages. They had become pretty soiled between drainage and food spillage, but they dont want to change them before that time in order to prevent contamination of the wounds. Once the tubes came out we were changing her dressings 2 times a day. A sterile gauze went over the wound, a spongy pad went on top to cushion the area, and a stretchy shirt went over it all to hold things in place. The whole time Abby was hospitalized she was given sponge baths.

Once Abby left the PACU (which was on day 3), medications began to be given by mouth. Both anitbiotics and pain medications were given this way. Unfortunately not all medications have the same schedule some were 6 hours apart, others were 4 hours apart. I made sure I kept a good written schedule of what was due when. I was able to time her routines better as a result. The nurses are pretty good about grouping whatever medications they can together. Regardless, your child will have to be woken up throughout the night for vital signs and medication. Surprisingly, Abby seemed to adjust to this quite well.

A day or two before Abby left the hospital, she had to go back to Temple to have a MRI taken to look at the position of things in her back. She also had another series of x-rays taken.

Other children are welcome to come visit your child while s/he is in the hospital (just not in the ICU). The most activity Abby participated in while she was in the hospital was when her cousin came to visit. Somehow all of the encouraging in the world from her parents did not motivate her nearly the same as her six year old cousin who just had to show up!