Day 13 Post MGH / 26 Post Inova - Narcotic Free!

Trey received no narcotics today!  Granted, the drugs are still in his system and will be for awhile.  Both Methadone and Valium have a long life, they can be detected in the body for weeks after taking the last dose, but he no longer is receiving any doses of them!  There is the possibility that in the next few days his body will realize he's not getting them and he could still have some withdrawal symptoms but he came down them so slowly and gradually that I'm hoping that is not the case.  He did very well today and had no incidents of throwing up.

Today is also the first day that I have had both Cole and Trey for the entire day together.  We did pretty well I think.  It's hard to get out of the house though because of Trey's feeds.  They take awhile.  First I have to bottle feed or nurse and then whatever he doesn't take I tube.  The process takes about an hour and a half.  We did have an outing to the grocery store today but it didn't go how I wanted it to.  I had wanted to go in the morning but the morning then became 2:30 pm before I knew it.  The actual trip went fine... it was getting there that was a bit tricky!  We did it though and I got all the ingredients I needed to make the gravy for Thanksgiving.  Tonight I cooked the gravy and it is now in the refrigerator waiting for the fat to rise.  Tomorrow I will skim the fat off, finish the gravy and put it in the freezer to store for Thanksgiving!  We are still going to have our big family Thanksgiving here at our house, this year we'll have 13 people plus the kids.  Thanksgiving is my favorite holiday... I love preparing for it!

Tomorrow the home nurse will be here in the morning and hopefully we'll have another weight gain!

Day 12 Post MGH / 25 Post Inova - Last Day of Valium

Trey kept everything down again today!  He had his last dose of Valium this morning and that's the last dose he'll receive.  Hopefully he'll do ok tomorrow - that is when it will hit his system that he isn't getting anymore.  I think he'll do ok though.

We spent most of today watching Football.  Grandma and Grandpa came to visit and to bring Bryce home.  Both Trey and Cole were happy to see them.  Then Bryce went to a birthday party.  Nana and Grandaddy came over and watched Trey and Cole while David and I went to a local restaurant.  It was the first time we were able to go out alone since August.  It was nice and dinner was good.  It was a greek tapas style restaurant and we had some good plates to share.

Trey really hasn't taken his bottles lately.  I was able to get him to take 50 mL from his bottle during his afternoon feed but he wasn't interested in eating from the bottle for the most part again today.  I don't know exactly how we're going to wean him off of the feeding tube.  Eventually it has to come out!  I guess I'll talk to the Gastro dr. next week to figure that out.  Next Thursday we have an appointment with the cardiologist and then next Friday is the Gastro. dr.

Day 11 Post MGH / 24 Post Inova - Off Methadone

So today was Trey's last day on Methadone and it went ok.  He was mildly fussy but not too bad.  There were some times during the day that he didn't seem very consolable but Daddy and him worked through it.  He was not thrilled with the bottle today though.  He wanted nothing to do with it so most of his feeds were total tube feeds today.  He didn't throw up at all. So all in all... not a bad day!

Bryce went to Grandma and Grandpa's house to spend the night and Mommy and Cole went into Baltimore city to visit some friends.  We met up with mommy's childhood best friend, Brooke.  Her family and she were in town for Arenacross, dirtbike racing.  Her middle sons both race and were racing at the Baltimore Arena.  Her parents were also in town and it was great to see them as well.  Brooke and I met up together 2 years ago but I haven't seen her parents in about 13 years.  We went to lunch at the Rusty Scupper and then hung out at their hotel for awhile.  Cole loved playing with her 2 sons, 7 years old and 5 years old.  He hit it off with them right away.  He loved running around the hotel lobby with them.  We then head over to the Arena and watched the races.  Cole loved it.  He was yelling out, "go, go go!"  The pros were pretty impressive, they jumped those bikes super high and Cole went wild!  It was a really long day and we ended up getting home around 10 pm.  Cole was incredibly tired.

Tomorrow is Trey's last day of Valium and then he'll narcotic free!

Day 10 Post MGH / 23 Post Inova - Last Day of Methadone!!

Well, Day 2 of Trey not waking up retching up his overnight feed.  Yay!  If you count the day before that, which was just a very moderate amount, it would be 3 good mornings!  I wish that had continued throughout the rest of the day though.  He did have an incident after his 9 am feed and during his 6 pm feed... again though, small amounts.  Definitely doable.  When I say small though I mean, yes, he soaked himself and needed to be changed but at least he didn't soak himself and everything around him!

Yesterday was his last day of Clindamycin (the antibiotic for the possible pneumonia).  Today was the last day of his Methadone.  Tomorrow is his first day without Methadone... it will be yet another milestone in his recovery.  Wow, and I just realized that if I move his Valium dose from noon to 10 am tomorrow we will only have to give medication 2 times tomorrow!  Granted, during those 2 times he will get 4 medications... but only 2 times!!  Wow!  For the past 22 days I have been constantly thinking what comes next... is it time for the next medication, what kind is is it (sedative vs. heart medication vs. antibiotic), specifically...which medication is it.  For a long time we were giving medication 7 times a day at various intervals.  I can't believe it could be down to TWO times tomorrow!  Goodness, the things that excite me now.

I spent the day out of the house most of the day.  David took off work so I could go to the memorial service for my friends husband.  It was a great service.  I went with the group of gals from my Moments 4 Moms group from church.  Afterwards we all went to lunch.  It was a nice but draining day.  Then Cole and I ran some errands when I got home.  So Trey spent more time with Daddy than with me today.

In other news... Trey found his feet this morning...

Whoa... those are part of me?!

Day 9 post MGH / 22 post Inova - No Puking!

Trey didn't have one episode of throwing up today at all!  I was so thrilled when I woke up this morning to him smiling at me instead of him retching.

Trey and I went to Cafe Rio for lunch today before his appointment at the pediatrician.  I actually packed his feeding pump in the backpack they sent us and we became mobile!  It was Tamale Thursday at Cafe Rio and it was oh so good.  Trey napped while I (and he!) ate lunch and it was very nice to be out.

Yummy - tamales and Milk!

Then we had an appointment with Dr. Lee at our pediatrician's office.  She was very happy with how he looked and sounded.  His lungs sounded much better and he is gaining some weight.  Next week I have to call to see if the RSV vaccination has been delivered yet and then we will set up an appointment to get his 2nd dose.

15 lbs 8 oz!

Tonight we took his feeding tube out to change it and let him go tubeless for his bath.  After the bath I remeasured for a new tube and put it in.  Poor kid - it was not pleasant and he was very upset about it.  I checked the tube but I had a hard time hearing if it was placed correctly or not because he wouldn't stop crying but eventually I could hear it.  Afterwards he went right to sleep though because he was so exhausted.  After he fell asleep I retaped it because the first time I didn't do such a great job.  So that hurdle is now over.  I was afraid of changing it because it's so not pleasant.  You just have to remove yourself from the situation and just do it.

Day 8 (home, take 2) - 21 days out of Inova

Wow.  We left Inova 21 days ago.  Unbelievable.  It's hard to believe that we have been taking care of him for 21 days at home.  Things are definitely getting easier but the worry is still there.  It's not constant anymore, which is good, but it's still there.

I've been reading another heart mommy's blog and she is an amazing photographer and writer.  She puts her feelings on "paper" so eloquently.  Her family does inner city mission work in Atlanta and her faith in God is just so evident through her writing and her actions.  Her son has HLHS, which is a congenital heart defect in which the left ventricle of the heart is severely underdeveloped.  Today she wrote a fantastic post called "The Other Shoe."  She writes that now that her son is home it's hard not to worry about everything.  It's hard not to just accept that things may turn out ok... that she's always waiting for the other shoe to drop.  I totally get it.  It's so easy to just worry now.  I worry that every time Trey throws up that it's a sign of something I'm missing.  It's not just reflux or due to his NG tube but due to some odd Gastro issue that we just haven't found yet... a lot like how it went with his heart.  But I need to start trusting in God again that things are going to work out according to his plan.  While I'm not sure of the what's and why's.... there is a plan.  I may not always agree with his plan but God knows best and I need to have faith in that.

Speaking of throwing up though (always a pleasant subject, right?), Trey only had one incident today after his overnight feed and it wasn't all that bad.  It was still a decent amount but it was thicker so it didn't go everywhere.  It also didn't really seem to upset him  Usually after an incident he screams and cries, this morning he just kind of whimpered a little when it came up and looked unhappy for a second and then was ok.  I can deal with that.  So hopefully this is a step in the right direction.  I'm thinking that if he's still doing this in another week that we'll add the Zantac in and maybe he won't do it at all?  They want to go slow though so we can be sure of what's working and what's not.

We had our home nurse come today and she said that next week is her last visit according to the insurance.  I need to call them and remind them of his discharge orders... the hospital recommended 2-3 visits for 8 weeks.  It's only been 3 weeks.  While things are going ok right now it would be nice to have someone to fall back on with questions.  In just 3 weeks I've noticed how things can turn pretty quickly.  Trey is receiving the RSV vaccination but it doesn't fully vaccinate him against it... it just wouldn't be as bad.  It would be good to have someone come to the house and listen to his lungs, check his heart rate and respiratory rates.  Hopefully I'll be able to talk them into approving it.

This morning before our nurse visit Trey and I went to get a blood test.  His Gastro dr. wanted to check his Digoxin levels to see if that was affecting his throwing up.  It had to be 1 hour before he was due to get his next dose, so we went at about 9.  I went into the lab all ready to insist that we skip through the line... the wait at the blood lab in town can be over an hour and I was not going to have him sit in a lab of people that I don't know for an hour and hope that we got in at 9ish to have his blood drawn... they usually aren't the most helpful at the lab.  Today though, they let us right back.  I was shocked!

Trey in the back of the lab waiting to get his blood drawn. I tried my hardest to get his to smile but he knew what was coming!

Today I also changed his feeds.  So overnight he had 480 mL and at 9 he took another 120 mL.  This seemed to go better so I think I'm going to stick with it.  Hopefully tomorrow morning won't be so bad.  Speaking of tomorrow morning... it's midnight now and I'm trying to get to sleep no later than 12:30.  Slowly I'm hoping that we can get that back to 11 pm but being the night owl I am I'm not sure if that will happen.  I enjoy the quiet of the night.  It's very peaceful and I get so much done when people aren't running around the house!

I just realized that I made a mistake on his wean schedule.  I went down on Methadone to once a day today and I also took the Valium down to 0.3 mL.  Oops.  Well, goodness, he tolerated going down on both medications pretty well today.  That's a good sign I think... hopefully the rest of the wean will go ok.  The last day of Methadone is on Friday and the last day of Valium is on Sunday.  Oh, and yes... he gained 3.2 ounces since last week!

Day 7 (home, take 2) - Another Good Day

Today was a good day... a slow day, but a good one.  The past two days I have been extremely exhausted.  Today I slept in and took a nap with Trey.  I also have a bit of a sore throat.  I really hope that I am not coming down with something because that would be awful.  Hopefully catching up on sleep and relaxing will help.  I actually got to bed last night before 12:30 am!

Last night we started with the soy.  He did throw up this morning at about 7 am but it was a much smaller amount than normal and it wasn't as traumatic as it normally is.  I stopped the overnight feed early, at about 485 mL instead of 600, but I added in an extra feed at 9:30 this morning to make up for it.  I think that's what I'm going to try tonight... 480 mL at a rate of 55 mL/hour instead of 600 mL at the same rate.  The overnight feed should stop at about 6 ish in the morning and then I will add another feed in at 9 am.

Tomorrow we are going to go for a blood test to test the levels of his Digoxin.  The Gastro. Dr was curious to know what they are because that can cause nausea.  I am also having my thyroid levels checked because I've been exhausted and my hair has been falling out a lot.  Granted, I've been through a lot the past few months and I've also had a lot of hormonal stuff going on by having a baby but might as well get it checked since that too can be changed by pregnancy.  The home nurse is also coming and hopefully Trey has maintained his weight.

Day 5 & 6 (home, take 2) - Trey's 1st Halloween!

Yesterday Trey started throwing up before and after his feedings.  That's new.  I went up to my parents to drop the older boys at my parents and to go shopping for the necessities... nothing too fun.  I also went to my favorite antique store which was really nice.  It was a nice break.  I love my favorite antique store!  I bought an awesome large wooden grasshopper.  But that's off topic...

Trey had awful feedings with David yesterday.  Today he did better - he didn't throw up at all but he screamed and cried whenever I fed him.  Enough that made me worried so I called the Gastro Dr.  They changed his formula to Soy and we're going to see how that goes.

I'm pretty exhausted today.  I didn't fall asleep last night until about 4 am.  Oh yeah.... totally forgot about the throw up last night.  That one was fun.  At 3 am I brought Trey upstairs and while I was halfway up the stairs he threw up all over me.  That was new too.  Usually he just throws up after his feeding but now it's just random whenever you move him.  By the time we got him cleaned up (and me!) it was about 3:30.  I also had to fix his tube because it had wiggled out under the tape.  We taped him up, put new clothes on him and went to bed.  I of course was overtired by that time and couldn't sleep.  I just laid there and listened to him sleep.  I finally fell asleep sometime around 4 am or so.

This afternoon the boys came home and this evening we went over to our neighbors house for dinner and a Halloween party.  They had fun and then we went out for Trick or Treating!  Bryce was Super Mario, Cole was Luigi and Trey was a mushroom.  They were adorable!  All the boys had a great Halloween and we were thrilled to have Trey home for his 1st Halloween!

Please Pray...

I went shopping for all of our "necessities" today and got home very late to some terrible news.  I don't have it in me right now to write an update on Trey.  I feel as though I have just had way too much laid on my heart in such a short period of time and it literally hurts.  A friend of mine in Christ that I can truly say "she amazes me" lost her husband yesterday in Afghanistan.  She is in my small group and have met with her every Wednesday until September 12 of this year for I can't remember how long... 18 months or so?  Her husband was deployed a little after Trey had his surgery.  Even though this entire thing with Trey has taken over much of my mind, she was always thought of.  I remember thinking, goodness... this is what it must feel like for her... not knowing if your child (in her case, her husband) was going to come back to you alright or not.  My heart breaks for her.

So, I will write an update on Trey tomorrow... but please, pray for my friend August tonight.  She has 2 young boys.

"The unfailing love of the LORD never ends! By his mercies we have been kept from complete destruction. Great is his faithfulness; his mercies begin afresh each day. I say to myself, 'The LORD is my inheritance; therefore, I will hope in him!'   The LORD is wonderfully good to those who wait for him and seek him. So it is good to wait quietly for salvation from the LORD.  For the Lord does not abandon anyone forever. Though he brings grief, he also shows compassion according to the greatness of his unfailing love."
Lamentations 3:22-26; 31-32

Please take a moment to pray:

Dear Lord,
Please help August in this time of loss and overwhelming grief. I don't understand why her life is filled with this pain and heartache. Her heart has to be crushed right now, but I know that you will not abandon her. Please show her your compassion, Lord. Help her through the pain so that she will have hope in you. I believe this promise in your Word to send her fresh mercy each day.  I trust your great love will never fail her.  In your name, Amen.

Day 4 (home, take 2) - Partying with the older boys...

We had a good day today.  At least that's what David says.  He spent the majority of the day with him today.  I went to a party with the older boys at Chuck E Cheese today and we had a good time.  Bryce loves it there and earned about 300 tickets.  I loved watching Cole figure the games out.  He's been a few times before but he's really getting a handle of the games now.  He loves the games that involve baseballs, basketballs and bowling balls.  When it was time for lunch I told Cole we were going to have pizza and he ran back to the tables gleefully yelling "pizza, pizza!" all the way back.  He was so excited.  He scarfed down the pizza - quite the opposite of his older brother who I think had maybe half a piece of pizza.  They both ate the cupcake but Cole savored every crumb.  He was still at the table finishing his cupcake long after everyone had left to play games.  He was covered in icing!

Trey threw up after his 6 pm feeding tonight and Cole was so good at helping me clean him up.  Trey was all smiles at him as well. I love that our boys seem to love spending time with each other.  The whole brotherly bond is pretty cool.  Bryce and Cole have this unspoken ninja stealth brotherly thing  It's so cute to watch  Cole just looks up to his brother so much and wants to do everything he does.  I can't wait to watch that bond form between Cole and Trey and also Bryce and Trey.  Tonight Cole helped me give Trey a bath.  It was adorable.  Cole was trying to show Trey how to splash in the water.  Too cute.  I love my boys!!!