Hospital Experiences & At Home Tips

Hospital Experiences & Advice (Specifically for Vanderbilt but could be helpful otherwise) – sorry these are in no particular order, I’m just typing as I think of them:

• Yoga Mats – at the last minute we decided to throw our thick foam yoga mats in the car and we are sooooo glad we did.  In the PICU we had to sleep on sleep chairs and that extra layer of cushion was wonderful
• Surgery lasted around 3.5 hours, plus another hour while they got him set up in recovery before we could see him.
• I expected the first time we saw him after surgery to be that shocking “what have they done to my baby?” feeling, but he really looked very much like himself at that point.  His eyes were still open, face about the same size/shape as normal and he had a gauze helmet on. 
• Our time in recovery was apparently longer than typical only because they had wait for a bed to open up in the PICU.  We were in recovery for around 3 hours before we moved up to the PICU.
• At Vanderbilt in the PICU there are three pods and each pod has something like 12 rooms.  You don’t get a choice in the pods, but keep your fingers crossed for the yellow pod…it is the only one that has restrooms inside the room.
• The nurses in the PICU are assigned 2 rooms each and are on 12 hour shifts.  There is a window between the two rooms where the nurse sits and can see into each room.  We were led to believe that we wouldn’t be involved in his care at all while we were in the PICU – that the nurses would handle all feeding, diaper changes, etc.  That wasn’t the case for us.  If you read through my post from when we were in the hospital, you’ll see that sometimes we were kind of on our own.  We didn’t mind doing any of that, we just had no idea what we were allowed to do and what we would always be responsible for.  Since Collin was in a carseat and hooked up to all kinds of IVs and monitors, it was difficult to change his diaper.  One person couldn’t do it alone.  If a nurse wasn’t available we had to do it but we tried to always wait for the nurse because it was scary to pick him up out of the seat and try to avoid making any alarms go off.  I would recommend having a very honest conversation with each nurse at the beginning of their shift to make sure your expectations match with theirs.  You can’t ask too many questions. 
• You can have food in the PICU rooms – they just want you to keep it behind the hospital bed in the family area.
• There is a good size closet that can hold your bags.  The nurses really do not come into the back of the room at all so that whole area is for you.
• Only 3 people can be back in the PICU room at one time.  Every time anyone comes in and out they have to buzz the desk and tell which patient they are coming to see and they will check to make sure there aren’t too many in the room.
• Overnights…this can be the hard part…only 2 adults are allowed to stay between 9pm and 7am (and it must be the same 2 adults all night).  There is one sleep chair per room.  There is also a very uncomfortable rocking chair in each room.  They have 12 sleep rooms which are basically hotel rooms.  You tell the person at the reception desk if you want to be on the list for a sleep room.  If you get a sleep room your nurse will let you know by 9pm each night (the sleep rooms are only available 9pm-7am).  The sleep rooms are given out in a specific order…those families with the most critical patients first, then it’s based on how far away you live, then it’s first come first served.  We were in the PICU 3 nights and never got a room.  We were finally told on the last night that based on where we live (40 minutes away) we were 18^th on the waiting list, and that’s after the 12 rooms were full.  So we never had a chance.  Not complaining about that at all because there were certainly families who needed a room more than us.  We just wished that we understood it better so we could have planned better and not hoped for a room each night.  There is a community sleep room that has 8 sleep chairs.  The TV goes off at 9pm and some of the lights are turned off, but it is still very bright in the room.  There is no privacy at all.  If you sleep there you could be sleeping within a couple of feet of strangers.  Of course everyone is there for the same reason and there were never any problems, but it took a little getting used to.  Also neither of us snore so we aren’t used to trying to sleep through someone else snoring.  We both have a white noise app on our phones so we took headphones and turned on the white noise.  My husband would go to the community room at 9pm and I would stay with Collin then switch out with him around 1am.  It worked OK, but definitely wasn’t the most comfortable.  Looking back we would have reserved a hotel room close by.  We actually did that our last night when we had moved up to the regular floor because we needed to get some good solid hours of sleep.
• Speaking of white noise – we have a sound machine that Collin uses for naps at his sitter’s house and it was wonderful to have both in the PICU and on the regular floor.  There are so many noises outside your room that it’s hard to get any rest.  The sound machine blocked out a lot of it.  The nurses didn’t mind us having it as loud as we wanted it.
• We had a few of Collin’s favorite toys but he wasn’t really interested in playing as long as his eyes were closed.  He does have a taggy blanket that he enjoyed fiddling with but there wasn’t much we could do to occupy his time.  Once one of his eyes opened we brought in pictures of him and his brother before surgery and he enjoyed looking at those.
• Sitting in that carseat 24/7 made him so hot.  Collin has always been a cold-natured child but he would overheat very easily in the PICU.  He would fuss so we thought he was cold and put a blanket on him, then his fever would spike because he got too hot.  Especially the first 24 hours when the gauze was still wrapped around his head and holding in the heat we had to make sure he didn’t have any blankets or toys covering him to make him hotter. 
• While in PICU they gave him morphine and Tylenol with codeine around the clock.  He stayed pretty out of it most of the time but it was easy to see when the medicine had worn off and he was starting to feel the pain.
• We were in the PICU for 3 days and a regular room for 1 day.  We had been told 6-7 days total in the hospital so we were shocked when we were told first thing on the 4^th day that we would be going home.  More below about being at home…
• All of the pictures and talking to other families who have gone through it can’t prepare you for how hard the first 30-40 hours will be.  You feel completely helpless watching your little one swell and swell until his eyes close.  You know he is in pain because you constantly watch his heart rate rise on the monitor.  Your nurse may be tied up with another, more critical, patient when it’s time for your child’s pain medicine and he may have to wait an extra 30 minutes or so.  He may or may not want to eat – Collin ate great until his eyes swelled shut then wouldn’t take an ounce of liquid for over 24 hours.  For a child who normally drank 30+ oz of formula a day plus solid food that was hard for us to handle.  You get very little sleep, and what sleep you do get is interrupted and restless.  BUT…you get through it.  Once the swelling hits its peak, every hour after that you will see improvement.  The nurses will take out the drain from his incision and begin to remove some of the lines he is connected to.  Once his eyes are open and the drain is out you will move up to a regular room and finally be able to hold him.  There is no better feeling than holding your child for the first time after an ordeal like that. 
• I don’t have a lot of advice about the regular room because we were there only about 18 hours.  We were able to get him out of the carseat and clean him off (you can’t imagine how gross he was after surgery then being stuck in a carseat for 3 days…).  He was able to sit up in his bed and play or eat.  He was still pretty groggy and had trouble holding his head up for long periods of time.  They didn’t give him morphine on the floor but he still got the Tylenol/codeine regularly. 
• If you aren’t familiar with the Vanderbilt area, there are tons of restaurants close by.  The food court in the children’s hospital has a decent selection – the food court in the main hospital is better but more crowded.  There is also an Au Bon Pain (kind of like a Panera) on the hospital grounds.  Right across the street from the hospital is Pizza Perfect (delish pizza and subs!) and a kabob place.  The kabobs are pretty fantastic too.  A few blocks down is Hillsboro Village and quite a few restaurants to choose from there. 

Once you go home:

• In some ways this was scarier than the hospital stay for us.  The first week or so we literally had to be within arms reach at all times.  If he was standing (he had just begun to take a couple of steps prior to the surgery), we had to have a hand on him.  We learned right away that he needed a pillow behind him if he was sitting up because he would fall backwards very easily, at least for the first week.  Dr Kelly told us the biggest concern would be hitting the sides or top of his head – the back should be pretty safe. 
• They sent us home with a prescription for the Tylenol/codeine but told us only to give it to him if regular Tylenol didn’t work.  I think we may have given him a couple of doses at first, then regular Tylenol for a few days.  After that he didn’t need anything.  He also had an antibiotic to take for I think 10 days after we got home.
• There was surgical tape over his incision for a little over two weeks.  Some of the pieces fell off (and he pulled some off) but Dr Kelly told us we were allowed to take it off around 15 days after surgery.  Once the tape came off and we could clean some of the dried blood he looked so much better.  He is still swollen almost 5 weeks later, but I think most of that is gone.  It is so weird to see him with a different forehead than he had before.  He looks a lot more like his older brother now.  I can’t wait to see what he looks like when his hair is all grown out and all the swelling is gone.
• After the first full week home we were able to relax a little bit and not stay so on top of him.  And by relax I mean instead of being within arms reach we were like 5 feet away…we still never left him in a room by himself unless he was sleeping or strapped into his high chair. 
• We were told he could go back to daycare 2 weeks after surgery if we felt comfortable but we didn’t.  He only went back last Tuesday, which was almost 4 weeks after surgery. 
• The biggest change for us at home is that he can’t sleep on his belly.  Dr Kelly said he needs to be on his back for 6-8 weeks after surgery.  Since Collin is a belly sleeper, he told us to put him in his carseat to sleep.  We did that for the first few nights but quickly realized it would be challenging to take the carseat out and put it back in every time we needed to go somewhere.  A friend of mine let me borrow her Nap Nanny.  Not sure if you’ve ever heard of them, but they are intended for infants.  It has worked perfectly for what we need.  He is comfortable in it and only has a strap across his lap instead of the 5 point harness from his carseat.  He is around 26 lbs and still has room to move around in it.  It will be interesting to see if he can go back to sleeping normally after being strapped in for so long!
• After 2-4 weeks of constant one-on-one attention, you can expect your little one to be pretty fussy when he goes back to daycare or to a more normal schedule.  Our sitter told us Collin cried a lot the first couple of days but he got used to it fairly quickly.  We don’t think he was in pain or anything…we just think he was used to being the center of attention and with a few other children at his daycare he wasn’t anymore. 
• Edited 6/8 - I just remembered something else.  Be sure you have enough clothing that either snap or button or have a wide neck.  We probably ruined some by stretching them out but it's not easy to pull regular clothes over the head with all the swelling.
• We’re almost 5 weeks post surgery and he is healing so well.  Truthfully if you didn’t see his incision and didn’t know he had surgery you wouldn’t suspect anything.  He is eating great, playing hard and sleeping well (other than the normal problems with teething!). 

That’s all I can think of for now.  Please feel free to email me (jhgreer@me.com) if you can think of anything I didn’t cover.  I hope some of my ramblings will help better prepare you for what is to come!