Trey was born on June 24, 2011 and was diagnosed with ALCAPA, a very rare congenital heart defect, on September 12, 2011. This is the story of our journey.
Please feel free to email me (Randi) if you have any questions or comments: treyheart@gmail.com
Please excuse any misspellings or grammatical mistakes. I'm usually writing from the hospital on my netbook while my mind is just running....

Tuesday, October 18, 2011

Day 6 (home) - Back Home

So as I said yesterday, we were back at Inova last night.  Yesterday was a really, really tough day.  He woke up throwing up at about 6:40 am.  Since he gets a feed set up at midnight and Valium at 1 am I just stay up.  David does the morning 6 am Methadone dose.  When Trey got sick it's not a spit up... it's a retching throw up, multiple times and it goes everywhere.  It's awful.  After Trey woke up we had to clean it up and by that time the other boys were awake.  David got the boys up, ready and gave them breakfast while I took care of Trey.  He was extremely whiny.  Whining turned into screaming and crying.  Not a normal cry, it was a somethings wrong cry.  His Valium had gone down .1 mL on Sunday and his Methadone went down .2 mL yesterday.  His behavior definitely seemed like withdrawal, he was inconsolable.  He had been like that one other time in the PICU and there was no calming him. He pretty much cried the entire morning and he missed 2 feedings because he wouldn't eat and I wasn't going to force food into a baby that was screaming his head off.  I called the cardiologist to let them know what was going on and as soon as I got a nurse... he calmed down and fell asleep.  The nurse told me to call her back when the home care nurse got there or if he woke up inconsolable again.

The nurse got to the house at about noon and I woke Trey up.  Of course, calm.  She even mentioned how good he was.  We talked about how he had been and she weighed up.  He lost 5.5 ounces.  We called the nurse at the cardiologist and they decided to have the nurse come every day this week except for Thursday, the day of our appointment, to monitor his weight.  They also switched his nighttime feed from an 8 hour feed to a 12 hour feed to reduce the rate of mL per hour going in through the tube.

Of course, as soon as the nurse left Trey started crying again.  I gave him his Valium and he calmed down a bit around 2:30.  At 3 I fed him through the tube and at about 4, still during his feed,  he started throwing up violently in his bouncy seat.  Thank goodness my neighbor works from home because I didn't have enough hands to keep him from choking on it, stopping the feed and trying to keep the dog out of the chocolate chip cookies I had been eating.  That's all we needed next was to have the dog OD on chocolate!  Jackie came over to help me and I called the cardiologist.  They told me to drive down to the emergency room at Inova.

It took forever to get to Inova in rush hour and I had to stop half way through to give Trey his Valium on the Washington DC Beltway... and I ran out.  Totally out!  I knew I was running low and the nurse had spoke to the cardiologist earlier about getting me another prescription shipped overnight to our house but I still had 2 more doses to give before 10 am!  Ugh.  We got to Inova and got into the ER pretty quickly.  Then we sat and sat.  They did a blood check and all levels were ok.  He was pooping and peeing so they figured it wasn't a blockage and he wasn't dehydrated.  The ER doctor spoke with the cardiologist on call at the hospital and they determined that it was probably GERD.  They were going to give him Prevacid but decided on Reglan.  I hadn't brought any of his medicine with us because I didn't think I could dispense our medication to him while in the hospital - I thought it had to be given by the hospital.  At 9:45 I told them he needed his Methadone and it took about 5 minutes to me to realize they thought I brought his medicine.  It took them an hour and a half to get the Methadone to him.  When they told me at midnight that they were going to be discharging us I lost it.

I hadn't really cried much since the day I found out about the ALCAPA diagnosis.  Well, it all came out.  I bawled.  I couldn't believe they were going to send us home.   I explained to the nurse that I was tired, lost, didn't know what I was doing and scared.  I let her know that we were in Children's last month and they missed the ALCAPA.  His heart may not have been in such bad shape a month before his diagnosis.  It was definitely large already, but maybe not as sick.  I couldn't have that happen again.  The dr. reassured me that he was doing alright at this moment.  His levels were good, he was being hydrated and responsive.  He really believed that the Reglan would help him and that if we held off on the wean for a few days we could work on that with the cardiologist.  He made me feel a little more comfortable and he also gave me 5 mL of Valium to last to the morning which was a huge relief.  We finally ended up leaving Inova at about 1:40 am.

When we got home I had to dispense his meds and set up his overnight feed.  I did a slower feed and the ER doctor told me I could go down on his total mL's for the day since he was hydrated.  That cause this morning to go much easier.  He didn't throw up at all this morning and we both slept in until 10:30.  It was soooo needed!  I felt so much better today and so did he.  We had a pleasant day, had easy feeds and no throw up.  I held off on the Reglan and started it tonight before his night feed though.  We had a day of feeds and medicine.  I was actually able to eat meals today (couldn't yesterday because he wouldn't stop screaming so I didn't want to put him down to eat) and we watched some TV and movies.

The home nurse came again today and he gained an ounce.  Tonight we're doing his 12 hour continuous feeding.  He is getting 120 mL less that what he needs today because we skipped his morning feeding as well since we were both exhausted from last night.  I'm allowing myself to do that and am not going to feel bad.  Right now he's doing ok and it won't hurt him in the short run.  I'm hoping if he can keep more down he'll gain weight.  We shall see what happens.

We received a fun package in the mail yesterday though...

Exactly what every mother wants... NG tube supplies!  Feeding bags, syringes and tape to keep the tube taped to his face.

10/18 (Tuesday) Feeding

10/17 (Monday) Feeding

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