Picking up the pieces

This surgery was far harder on us than I think any of could anticipate.  I feel like on April 3rd our youngest child, and consequently our family, was shattered into a million pieces and we have spent the  6.5 weeks following it putting her, and ourselves, back together.   Finally, six and half weeks later, Reya finally started to act like herself again.

Happy Mother's Day

The 4 weeks at home after surgery before the vocal cord medialization were a challenge.  Essentially every day after coming home, Reya vomited.  Usually in the morning, sometimes more than once.  This was pretty stressful as we worked to figure out why.   At first we thought it was a stomach bug / upper respiratory thing, but after a week or so, it became pretty clear that this was not viral. We were feeding her about 700mLs (23oz) of pediasure formula each day, as recommended by the nutritionist.  We were sent home doing 3 daytime bolus feeds of 120mL (4oz) and one continuous overnight feed of 400mLs (12.5 oz).  By week two, we were pretty certain the vomiting was linked to this.  I attempted decreasing feeds, slowing feeds down, reflux meds, everything I could think of - and she still vomited every morning.  There were calls to the pediatrician, emails to Dr Friedman, emails to her nutritionist.  On the third week at home, Reya and I went back to school.  Each morning, I held my breath that she would not vomit at daycare because I was certain they'd send her home.  The rule is you can not bring them back until there is no vomit for 24hrs.  Reya would not make it 24 hours without vomiting and I desperately wanted to be back to work.  On the third day, she vomited in the hallway outside of her classroom.  I had to explain to my co-worker who witnessed the scene that it was not viral.  I think he was pretty amazed that I was able to recognize the noise, bend her over and not get a drop on either of us.  That day, I came clean to her teachers and explained why she was vomiting.  They were really understanding.  Fortunately, she only vomited in her classroom once and I was there with her to clean it up.  I kept praying the vomiting would get better but instead it got worse.  By the 4th week at home, she was vomiting up to 4 times in the morning.  On the Tuesday of that week, I changed her clothes twice before we left for school and then she vomited two more times in the car on the way to school.  It was so awful.     We had narrowed it down to the overnight feed, so I went against recommendations and decreased the overnight feed from 400mLs (12.5 oz) to 300mLs (10oz).  This helped her to only vomit once, which was better.  Then I heard from nutrition and she had us decrease the feed officially to 300mLs, adding in some cereal at night for calories and some heavy cream to one of the day time feeds for even more calories.  This helped, but the vomiting still continued.

Storytime with Daddy

Going back to school / work was so good for us, but stressful.  I was so happy to be back to teaching and back to my kids.  The first week I was back, I worked two half days so that we could both transition back.  The third day we went back full time.  The trickiest part of being back full time was the fact that she was 100% dependent on her feeding pump, which meant that we needed to run at least one feed during the day.  The first day, I ran a feed on the way to school, then planned to come down at lunch / naptime to hook her up before she slept.  It was a disaster.  Her teachers were not allowed to handle her while she was hooked up to the feed and she refused to go to sleep with me there.  I hooked her up, settled her, and left.  She started crying when I left, and while I was heating up my lunch, they called me to come back down.  When I got there she was asleep, but they insisted on changing her sheet that had a tiny bit of spit-up on it.  This of course woke her up and she refused to go back to sleep.  The teachers were busy with the other kids, who also were not sleeping.   I stayed with her for an hour, no sleep.  I lost my whole prep, missed my lunch and was 20 min late to my class.  It was so stressful.  That afternoon, we all discussed a new plan and worked out something that could work for everyone.  I would run down between my 2nd and 3rd periods to hook her up before they went out for their walk.  Then I would run down at 11:00 to unhook her.  This mostly worked with my schedule and it worked really well for them, other than the fact that she was not real happy to sit while her classmates at lunch since she was not hungry.

Waiting for vocal cord medialization

Finally, in mid-May, we got the call that had a big part in putting her back together.  Since she came home from the hospital, I had been calling and emailing Otolaryngology (ORL) non-stop.   We saw Dr Hseu 10 days after she was released from the hospital.  The next day we were given the date of May 23rd for her vocal cord procedure.  In our minds, this was not an acceptable date, as this procedure was the only possibility for Reya to be able to safely eat and drink again, which would make her happier and hopefully stop the vomiting.   So I called or emailed every other day asking for cancellations.  Finally, on a Thursday, we got the call - there was a cancellation for Tuesday!  This meant our schedule for the next few days would be rigorous and there would be more hurdles to jump -  ORL on Friday afternoon to scope her and make sure she was definitely a candidate.  Pre-op on Monday morning to be sure she was healthy enough.  She passed through both hurdles just fine, though I must say, it felt like they were extra thorough in the pre-op.  In our almost four years as a cardiac family, I've learned that other departments outside of cardiology do not mess around with cardiac patients.  We often get the royal treatment - no wait in the ER, earlier procedure times as they don't like to leave cardiac kids NPO (nothing per oral - no food) for too long, etc.  But it also means when you go in for a pre-op or consult in another department, it often takes a while bc they don't want to mess anything up.  On Monday, we came in at the same time as two other families.  We were the first to be taken back and the last to leave.  We were told an hour, it took two hours, making me later to work than I expected, but we were given the all clear.  That afternoon I got the call that it had been scheduled for 12:45.  An hour later, they called back to tell me they had pushed it back to 11:30.  I decided I could get a half day in, so I took Hope to school and worked a half day, while Chris took Reya in to the hospital.  Chris' parents would pick Hope up at school.

In pre-op holding with Dada

I left work a little before 11 and got there just in time to see her before they took her back.  The procedure itself went well.  She was in the OR for about 2 hours.  We ate lunch while we waited, then went up and checked out the new rooftop garden, and finally settled into the 3rd floor surgical suites waiting room.  It always feels weird to wait there.  Each time our kids have come out of heart surgery, this is where we have gotten the news on how it went.  We don't typically sit there all day, but we're always back there by the time the surgeon comes out.  Just as Dr Pigula, Dr Baird, and Dr Smithers (gtube),  Dr Hseu came out to tell us how it went.  She brought us pictures of her airway and vocal cords - which was pretty cool.  I will add them into this post later, if I remember.  She was able to inject it enough to just leave a small gap.  She said many normal people have this gap, so she suspected Reya would be able to handle solids and thickened liquids at the very least.   We were not allowed to try until the next day with the feeding team, so there was definitely some suspense.

Watching "Beast" on 8E

About a half hour later, we were ushered back to recovery.  She had just woken up and was NOT happy.  She seems to have a really rough time with anesthesia.  She could not settle and was screaming.  We did not feel that she was in any pain, but suspected she just had an anesthesia hangover.  Finally, the nurse brought over a DVD player and we were able to get Frozen going, which settled her down immediately.  Others in the PACU were clearly enjoying our movie as well - As "Let it Go" came on, you could hear various voices from the rest of the unit singing along...lol.    Once she calmed down, she inhaled a container of pureed bananas and a half an apple sauce.     Dr Hseu stopped by to check on her, and a cardiology fellow dropped by as well too to clear her to come upstairs.  Finally, we were on our way up to our room on 8 East - Cardiology is pretty possessive about their patients.  We got a window, which is really all that matters to me anymore.  We got up there around 3:30.  The next few hours were spent checking her in.  We put Beauty and the Beast on and went for a walk.  Our roommate arrived, which ironically was a family I had been communicating with over Facebook, whose daughter is the same age as Reya and had been in the cath lab.  Reya did not take a nap, but we were able to get her down at a reasonable time so we could grab some dinner and Chris could get home to relieve his parents. 

Hospital life is exhausting....

We had a pretty quiet night and were up bright and early the next morning.  We had a lot to accomplish before being discharged.  The beauty of being reasonably well and on the floor is that you can take field trips.  So instead of sneaking down for breakfast before Reya woke up or not eating at all because she was awake, I took her down with me.  She ate a pouch while I ate my breakfast.  When we got back upstairs, rounds came through, which was pretty quick since  we were on the cardiology floor and there was not much to talk about from a cardiac perspective.  We were waiting on the feeding team to come through and also nutrition.  The feeding team came through and evaluated her as safe to take solid food and honey thick liquids and sent us home with a thickener and a recipe on how to thicken liquids.  This was certainly improvement.  Then nutrition came by to help change her feeding plan to reflect the fact that she was able to take solids and thickened liquids.  We came up with a plan that she needed to take 22oz of milk a day to meet her goal.  Whatever she didn't take, we would run through her tube.  Finally, late morning, we were sent home.  I felt pretty frazzled going home, not knowing how it was going to go.  I was also frazzled that it was Wednesday and there were two more days in the work week.  I didn't have any days left, so I was going to have to take my just released from the hospital 22 month old back to daycare.  I was feeling a lot of uncertainty having just had a procedure that was not only new to us, but a relatively new procedure on kids. 

Happy to be home in her own bed

In the end, it was all ok.  There were only two days left in that week, and it became quickly apparent that Reya had a new-found appreciation for eating and drinking.  The vocal cord medialization injection had done it's job.  Within two weeks, Reya would be back where she had been pre-op, eating and drinking wise.

Hanging with the big kids in Mama's classroom before going to her swallow study

Sitting in Mama's chair at work

During that stay, a swallow study was scheduled for the following week.  I was so nervous for this study because she had always refused to cooperate in the past.  This study was so crucial to her diet and in turn, her quality of life.  Turns out, food wins.  When she was offered all of her favorite things, she gladly obliged.  Milk, ice cream, peanut butter and jelly, apple juice.  First we tried honey thick.  She passed.  Then nectar thick.  She passed.  Finally, the feeding specialist wanted to give regular thin liquids a go.  She passed!  They cleared us to step down to nectar thick for two weeks and then see how she did with thins.  I am happy to report she has happily been enjoying non-thickened liquids since early June.

Celebrating with ice cream in the new garden

Her beloved cup

As with always, having a child with high medical needs is a roller coaster.  Just when you think you've hit rock bottom, something happens to swing the pendulum in the other direction and things improve. The vocal cord medialization was just what we needed and came through just as we were about to break.   

The stress has been a lot on all of us, and the hardest thing of all is to try to maintain normalcy for Hope.  When we get stressed, Hope senses it and it sends her anxiety spiraling.    I try to my best to carve out time for her so she gets the much needed one on one time, but it is really hard.  Before Reya's surgery, things were going really well.  She was acting out less and less, eating well, sleeping well, being pleasant most of the time and feeling less of a need for control.  But since surgery, especially the last 6 weeks or so of school were pretty tough for her.  Lots of fighting in the morning, refusal to pick clothes, wouldn't let me do her hair, being difficult to put down, refusing naps, etc.  I've come to the conclusion that most of these behaviors are a reaction for her need to be in control.  Her clothes, her hair, even bedtime are all things that she can control, so when things start to get out of control, she turns to these behaviors to regain that control.  It is really challenging.   She has a lot of anxiety and worries about new situations.  She was worried about the end of the school year, she worries about Reya, etc.  She reacts well to one on one time, but also to just being held, or simply having a conversation about it, if we can figure out what is bothering her.  Overall, she is a pretty happy kid.

Look at me!

Kelly's lunch date

So what's next?  We are starting of the summer in the cath lab, but after that, it sounds like we will have a break from the hospital and from Drs in general.  I am planning a peaceful, restful summer with lots of time in Ocean City, but also some time at home.  I'm planning field trips for the kids and plenty of down time for all of us.  Chris and I will travel to Colorado for my 40th at the end of July.  Stay posted - I am going to try to stay on top of this for a change....

Fully recovered?