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!!!

Day 3 (home, take 2) - Exhaustion is making me blank on a title for this entry...

I actually got 8 hours of sleep last night!  It was great.  I still was pretty tired this morning though.  I'm definitely a night person though so I'm tired most mornings, even before this all happened.  I just have noticed that mornings post-ALCAPA are even harder.  I wake up with a drugged, this really isn't all happening feeling.  Trey did throw up again this morning though so that definitely got me up and moving pretty quickly.  This new formula stinks.  It smells like really awful dog food and it smells awful coming up.  It stunk up the entire room for more than half the day.  I don't know how I'm going to get through the smell!  It makes me gag.  I feel as though the entire house stinks.

The nurse came this morning and I saved his outfit that he got sick on because I was nervous about some pink flecks that came out of him.  She said that that color did not exist naturally in the human body so it had to be some of his medication.  I'm hoping it was the clindamycin!  I was afraid of it being blood (shrug, I didn't know!) and she said nope, no way.  Thank goodness... because the last thing I needed today was to go to the ER!  I had Bryce's Halloween party at school to do!  He lost a little weight since last week's weigh in on the nurses scale.  Hopefully the fortified formula will help him gain some.  She'll be back on Tuesday.

My mother in law came to watch Trey this afternoon so that I could go do the Halloween party.  Unfortunately, he threw up all over her right before I left the house.  Seriously, I went to grab the doorknob to go and blech!  She picked him up right after his tube feed ended and he projectile vomited all over her shirt and the couch.  Yuk!  So we cleaned up the couch and my father in law brought her a new shirt.  Yes, it was gross.  I couldn't believe it though... right as I was leaving!  Trey definitely has a way of making things a little difficult! ;-)

The party went well and the kids all had fun.  I haven't had time to get the pictures off of my camera but I'll post some of Bryce when I do.  Right now I'm tired and just don't have the motivation to do it.  I absolutely love organizing and doing the holiday parties at school but it does take a lot out of me.  I don't know how teachers do it day in and day out!  I only planned and did an hour of school and I was drained!  Teachers definitely have a gift.  Off to get some shut eye.... yay!

Day 2 (home, take 2) - Gastroenterologist Appointment

Today is going to be a short entry because I am exhausted.  I didn't sleep last night again and we had a long day at the doctors but I wanted to update on how we did at the Gastroenterologist.

First, it took forever to get packed up and ready to go.  My babies are usually pick up and go kind of kids... I'm not used to having to remember to bring food with me.  Then I had to pack up the feeding pump in the new backpack we got to make it portable.  Plus, I had to remember to bring his medicines and everything that goes along with that.

We made it to the gastroenterologist and filled out the multitude of forms they had.  We went back and I filled the dr. in on everything that was going on.  He looked over my forms and asked what ALCAPA meant so I explained that to him.  He then read over the cardiologist report from the hospital and the discharge information.  He examined Trey briefly and then we spoke about the changes we'd make to his diet.  First we're going to try a new formula, Similac Alimentum, which is for babies that have a sensitivity to the protein in milk.  It's easier to digest.  We're also going to fortify it, 1 scoop every 50 oz instead of 60 oz, to up the calories in it.  Apparently the 960 mL he's taking in now is not enough calorie wise and he should be taking in more but since he's throwing up they don't want to add more volume so they're going to just up the calorie intake with the same volume.  We'll try the new formula for 2 weeks and if he's still having problems we're going to add in Zantac.  We are stopping the Reglan.  He can also still get breast milk bottles but we'll use the formula for his tube feedings.

We're also going to up the rate of the overnight feed from 50 mL/hour to 55 mL/hour.  That way he gets done the feed earlier before he wakes up.  He thought that maybe him waking up was causing him to startle and throw up.  If we can finish the feed before he wakes up his stomach will have started digesting it and it will stay down.  We shall see.

Then at 2 we had an appointment at our Pediatrician.  His lungs sound better and his crackly breathing all seems to be in his upper respiratory tract now.  His respiratory rate was good and they're happy with how he's doing this week.  We have another appointment with them in a week so they can listen to his breathing again and see how he's doing.

Other than that we had a decent day.  He did throw up a bit this morning but it was older milk... not the pretty stuff (not like any of it is pretty!).  The nice thing about that is that it doesn't go everywhere and stays pretty localized on himself so there's not as much cleaning to do.  It just looks nasty.  We ended up skipping a feeding today because the Gastro. dr. took a long time and Trey didn't seem upset about it so I just waited till 3 to feed him.  We spent about 2 1/2 hours at the Gastroenterologist this morning and 45 minutes at the Pediatrician today.  Thankfully I was able to sneak a chili lunch at home in between there but I had to scarf it down.  Off to finish the Halloween party stuff... tomorrow is the big day!

Halloween Snack, Witches Brew Trail Mix...  Done!  The kids will mix it together in a cauldren tomorrow.

Day 1 (home, take 2) - Good Day

Well, we had a good day today.  I stopped his feed 15 mL early because he started retching a little and I was afraid of him throwing up.  However he did still throw up a bit this morning after his feed but it was a little different than normal.  It happened 25 minutes after his feed ended, it's usually during or right after, and it was curdled again.  The good news though is that the cardiologists office got us an appointment with the pediatric gastroenterologist tomorrow!  I am thrilled!!  There is just no way I could have waited till November 18!

Otherwise, all feedings went smoothly today.  He wasn't too cranky from the wean and it was a pretty calm day.  We took 2 naps together which were much needed because I haven't been sleeping very well!

Tonight I started packing up for Bryce's Halloween Party at school on Friday and have put all the different activities in shoe boxes to organize them.  I've got 4 centers planned (2 crafts and 2 games), a game for the kids to play together and a snack.  Tomorrow I have to label the snacks with their Halloween names (owl eyes, ghost guts, chicken toenails, etc) so that the kids can make their Witches Brew Trail Mix.  I also made a batch of Chili to have for lunch this week.  I was really craving Chili this weekend so I bought the ingredients on Sunday with the hope of making it Sunday night... 3 days later it actually got made... not bad.  It's definitely harder to cook while also setting up feeds and doing medicine... thankfully David was home this evening to help!

Well, I think I'm going to hit the hay early tonight.  Now that his Valium and Methadone is just twice a day, his last medicine dose is at midnight instead of 1 am.  I'm going to attempt to go to bed right after I give that dose and hope I sleep.  Last night I couldn't get to sleep until a little after 3 am.

We also have a pediatrician's appointment tomorrow to follow up our ER visit.  Tomorrow is going to be a busy day of doctors.  Let's hope we have a successful appointment at the gastroenterologist tomorrow!

Update (1:48 am) - No, I didn't get to sleep as early as I had wished.  Too much "stuff" to get done.  I had to bring Trey upstairs, retape his tube, change his diaper, get ready for bed and put the chili in the refrigerator.  I did want to share something though... check out my re-taping job!  I did it while he was asleep and I rocked it!  He didn't wake up the entire time.  Score!  Replacing the tape is usually such a pain because he cries and cries.  I hate it. It had to be done tonight though... desperately.  I am so proud of myself!  Granted, the tube isn't quite straight this time... but I'll just have to give up trying to be perfect all the time... (smile)... although maybe I'll redo it tomorrow.

Day 2 - Montgomery General Hospital - False Alarm

So Dr. Gebru was the attending today in the ER.  He was pretty surprised to see Trey again.  Apparently all the prayers for Trey worked! Last night he had pneumonia, today he didn't!  The radiologists that were in today looked at his film from last night and didn't think they saw pneumonia so they ordered another chest x-ray to get another look.  After reviewing them they believe that he does not have pneumonia.  Although, the Dr. Gebru and his cardiologist are keeping him on the antibiotics that they started last night just in case they're wrong.  His lungs in the x-ray definitely show fuzziness in he lungs but since they don't have anything to compare it to they're not sure - they could be fuzzy because of the heart failure or they could be congested.  Whatever the case, they are going to leave him on the antibiotics as a precaution.

Dr. Telep was the cardiologist that was able to come see Trey today.  Dr. Gebru wanted to rule out that the reason for his congestion wasn't congestive heart failure.  He wanted to make sure that his heart hasn't gotten worse.  The good news is that his congestion is not due to his heart.  The bad news is that his heart hasn't gotten much better than when he was discharged from Inova.  I already knew that from his ECHO last week though.  I don't really find that as bad news thought because I understand that it's going to take awhile to see any improvement.  

Trey did throw up this morning in the hospital, which was a good thing because someone else could see how much he threw up. Dr. Gebru was pretty concerned about the amount that came out of him.  Although, it was probably only about half of what he normally does.  Trey's pediatrician came to see him in the hospital today soon.  He did think that Trey's breathing was a lot less labored and slower today.  The cardiologist, the pediatrician and Dr. Gebru agreed that he needed to see a pediatric GI dr.  They referred me to Dr. Duffy's practice that are out of both Inova and Rockville (just like the cardiologists).

I called the GI doctor this afternoon and they didn't have an appointment until December.  I told them what the cardiologist told me to say.... Trey is a patient with severe reflux that is aspirating and has heart disease.  That got us an appointment one month sooner... November 18.  Definitely not good.  I can't handle this throwing up until November 18.  I called the cardiologists and asked them to call to see if we can get in any sooner.  That was at 4 pm today and I hadn't heard back from them before the office closed.  Hopefully they'll call me tomorrow to tell me they were able to get an appointment sooner.  

The cardiologist cleared us to be discharged.  He didn't think that we needed to be hospitalized anymore.  He told us to follow up up with Pediatrician on Thursday to check out his breathing and lung sounds.  Our home nurse is coming tomorrow morning so I felt somewhat comfortable with going home.  I'm a bit scared of the throwing up still in combination with the weaning.  Although - today the cardiologist said that if he gets too inconsolable I can give him some Methadone to calm him down a bit.  I was worried with the interaction it would have with the Valium if I gave it too close together but he said not to worry about it.  According to him they often give it together.  That makes me feel better too because last week when he got really inconsolable last week I had a hard time even finding time to eat, the screaming was awful and he just seemed to be in so much pain.  

We got home tonight at about 7 pm.  It's been a long 2 days.  I didn't get to sleep last night until 3 or 4 because I was afraid of him throwing up in his sleep.  The hospital bed didn't angle up very high and I was afraid he would choke.  I reassured myself that I'd hear him cry if he threw up and we were in the hospital so they would come help but my mind just wouldn't shut down.  At 9:30 tonight I started his overnight feed and hopefully (cross my fingers) we won't have a huge mess in the morning.  Today we changed his Valium and Methadone from every 8 hours to every 12 hours, so I'm also hoping that we don't have a huge meltdown of withdrawal in the middle of the night.  Please keep Trey in your prayers during the next few days because I think the withdrawal is going to be tough on him.  While I was given the ok to help him out a bit... he does have to come off of these drugs at some point!  It's very frustrating. 

Trey at home - he fell asleep his his hand over his eyes.  I tried to get the picture but he moved right before I took it.

Day 1 - Montgomery General Hospital - Pneumonia

So we're back in the hospital.  This time it's a hospital closer to home.  On Saturday Trey started coughing.  I was a little concerned but didn't want to be a mom that calls about every single little thing.  I talked to a friend of ours that is a doctor and he made me feel better about it... basically, Trey's color was ok and he was acting "normal" so he said just to keep a watch on him.  What made it more difficult was that it was a weekend so the doctor's offices were all closed.

On Sunday the home care nurse called to see how he was doing.  I told her about the cough and she could hear him over the phone.  She did ask if we wanted her to come to the house but I told her that he seemed ok and that if he got worse I'd call her, otherwise, she would be at the house on Monday.  We then had the whole "valium instead of methadone" incident yesterday as well which he seemed to tolerate ok... until about 3:30 am.  At 3:30 he woke up inconsolable, fussy and just plain unhappy.  It was obviously withdrawal related.  He got so upset he threw up his feed and his tube came out a bit.  I was able to get the tube back down but I had a hard time checking to make sure it was in the right place with the stethoscope because his lungs were so incredibly raspy sounding.  After he threw up, we stopped the feed.  He was supposed to get 600 mL overnight but I stopped it at 334 mL because I didn't feel comfortable forcing it into his stomach if he was throwing up.  At around 4:30 am we were able to give him his morning dose of Methadone and he calmed down in about 15 minutes.  We couldn't give his Methadone to him earlier than that because he had his Valium at about 1:30.  There has to be a space between the two.  That hour of him being inconsolable was an extremely LONG hour.  Also, this time when he threw up it was different than the other times.  It was much thicker and curdled.  Usually it looks exactly what it looked like when it went down.  (sorry if I just grossed you out)

The home nurse got to the house today at 10 am, listened to him and agreed that his lungs sounded raspy.  She called the pediatrician and was able to get us an appointment at 2:45.  After she left, Trey and I had a low key morning because I think we were both exhausted from last night.  We went into the Pediatrician and he agreed - raspy - so he sent us to the local ER to get a chest x-ray.  He thought it could just be a cold (since there is one going around our house) but he wanted an x-ray to make sure it wasn't something else.

Trey in the ER

The machine he got his chest X-ray on - first time getting an x-ray that wasn't portable!

First, I couldn't believe it... Dr. Gebru wasn't in the ER!  He's always here when we're here!  We did however, have the same nurse from our September visit, when he was diagnosed with ALCAPA so she was very familiar with him.  They did a test for RSV and the Flu but both were negative thank goodness but his chest x-ray did show pneumonia.  Ugh!  So they are keeping us here in the hospital for a day or two to watch him.  They took some blood samples but the results haven't come back yet.  They also started him on antibiotics.

Being at this hospital isn't as convenient because they don't have everything he needs.  My mother in law came to sit with him a bit tonight so I could go home and get his medicines and feeding supplies.  It was quite funny walking into the hospital with an IV pole, feeding tube, bags and medicine!  They set us up in a room that has a bed for me but they don't really have a convenient bed for Trey.  They tried a bassinet but he was a bit big for it.  He's in a crib right now but the crib is monstrously big!

Ginormous Crib!

Trey getting his overnight continuous feed

His oxygen levels haven't been that great so they just started him on a "blow by" oxygen setup.  Since he has the feeding tube in his nose they didn't want to also put a nasal cannula in his nose as well they set up a large tube of oxygen that blows out across his face.  That has really brought his oxygen saturation up.  It went from about 85% to 95%.  

Oxygen blow by setup

The blue tube is the oxygen and the blue feeding pump was brought in from home

Dr. Callahan is coming to see him in the morning and I assume we'll figure out what we will do from there.  Supposedly Dr. Gebru will be the dr. in the ER tomorrow... won't he be surprised to see us again!  This kid is definitely keeping us on our toes!  He really is a good hospital patient... it's amazing how all of this really doesn't seem to phase him.  Of course, he doesn't really know any different either though.  

Oh, and the nurse today pointed out that he was 4 months old yesterday.  I have totally lost track of how old he is!  I can't believe it... 4 months.  It feels as though he's been a part of our family much longer than that... I think its because we've been through so much already.  It's hard to believe that just a little over 4 months ago I was still pregnant.  Although, now that I think about it... my waist can still believe it!  By the end of all of this living in sweats are going to be just the norm for me.  Someday there will be secret footage of me on "What Not to Wear"!  Oh well - while I would love to start losing the baby weight (I gained more than I thought I had... anything that doesn't have an elastic waist at home doesn't fit me anymore!) this is just not the time for it.  Maybe I should have been going up and down the stairs at Inova a few times a day! ;-)

Well, I'm exhausted and he's about ready to get his 1 am Valium dose.  I just want to make sure that he gets it alright before I go to sleep. Then it's off to dreamland for me.  It's been yet another LONG day.

Day 11 (home) - Throwing up... again

So today started off with Trey throwing up again.  It's getting very frustrating again.  It's an absolute awful thing to watch.  He looks so terrible and scared when it it happening.  He also still has a terrible cough and sounds very congested.  We all seem to have come down with a cold as well.  I have just a touch of something, my nose is a bit runny and I have a headache but David feels pretty crummy and Cole's nose is a faucet.

This afternoon I made a mistake with Trey's medicine.  I was busy, trying to do too many things at once, and accidentally thought he was due for a dose of Valium at 2.  I gave it to him and then went to check off the medicine on the sheet I have to keep track of everything.  Well, while checking the medicine off I realized it was supposed to be Methadone instead of Valium.  Oops.  I immediately called our home nurse who had us call Dr. Callahan, his cardiologist.  Thankfully he wasn't too worried.  He told us to skip the Methadone dose and keep a watch on Trey and make sure he didn't get too drowsy/out of it.  He figured that Trey's body was probably used to even more Valium than we gave him today so his body wouldn't react to the accidentally overdose, especially since the doses were given 4 hours apart.   He said that if he got cranky at 6, which was supposed to be his next does of Valium, we could give him more (which he did, so we did).  Otherwise, just wait until his next scheduled Methadone, at 10, to give him any Methadone.

Needless to say, I felt horrible.  I can't believe I made the mistake.  I had things in place to make sure that this wouldn't happen but I got too comfortable, thinking I knew what to give next without looking at my checklist.  It was a silly mistake and thankfully it didn't turn out to be too dangerous of a mistake but I will definitely be more careful in the future.  Today started his Valium wean again though.  We went from .8 mL  to .7 mL, every 8 hours.

The other boys came home at around 3 o'clock and Cole and I went shopping for Bryce's Halloween party at school on Friday.  For snack, I'm making Witches Brew in a cauldron.  It's a trail mix using peanuts, pretzels, chips, M&M's, chocolate chips, etc.  The kids are going to dump the ingredients into the cauldren one by one and they will be labeled as different icky ingredients.  For example, M&M's are owl eyes, candy corn are chicken toenails, mini marshmallows are ghost guts, etc.  I'll have to post the list of everything once I get it all organized.   

Trey also threw up after his 6 o'clock feeding.  He just started his overnight feeding and I'm all worried that he's going to throw up sometime in the middle of the night.  I'm so incredibly tired and I'm sure I'm not sleeping well.  Tonight I'm pretty sure I'll be sleeping even worse.

It's now 1 am - I just did the nightly Valium dose and he is extremely fussy.  Poor kid.  Plus, I got peed on when I changed his diaper just now.  That's always fun.  Well, off to calm him down and hopefully get some sleep tonight.

 

Day 10 (home) - Congestion

So today I noticed that Trey has been more congested and coughy than normal.  He coughs and coughs but doesn't seem to get anything up... but you can hear that something is there.  I really hope that nothing is wrong.  It could just be a simple cold but again, that's what we thought it was before we found out his diagnosis of ALCAPA.  This whole worrying about my kids thing is new for me - I usually trust that things will work out. I rarely take my kids to the dr. for being sick unless there is a need.  I'm pretty laid back.  Heck, people used to tell me that they didn't believe that Bryce was my first because I didn't worry about things.  Well, this whole heart thing is different for me.  I am worrying about everything!  I don't know if it's a cold - or some kind of serious condition that I should be on the look out for.  Thankfully I spoke to my best friends husband tonight and he did reassure me that things were probably ok.  His color is good and his breathing isn't labored.  So therefore his oxygenation is ok.  I think I'll wait to see how he is doing tomorrow and go from there.

Today we went to my parents to celebrate my brothers birthday with the family.  It is the first time that we have traveled with Trey.  Since we still haven't received the backpack for the feeding pump, we had to bring the IV pole with us.  Thankfully it folds up it could be put in my big tote.  We also had to bring all of his feeds, which of course I'm not used to because I usually nurse... gosh, nursing is SO much more convenient when we go out!  It was a successful outing though.  We did the feed at my parents house and gave him his Valium there.  Trey did have a throwing up incident during his feed but I think he gagged himself by coughing so much.  Again, different than the other incidents he had last week.  Last week he would just start retching.  The 2 incidents he had this week after starting the Reglan seem to have reasons behind them.  Either gagging himself with his hands or by coughing.  So I think that's an improvement.  We had a nice visit and all of the boys were thrilled to see their Uncle Mike.

The older boys spent the day at my parents house today.  I called them around noon to see how Bryce was doing.  Apparently he woke up feeling much better.  He gave the thumbs up when asked how his stomach felt.  This made me feel much better.  I'm glad that it just seemed to be a 24 hour bug. Both boys asked if they could stay at Grandma and Grandpa's house overnight again and so they are going to come home sometime tomorrow.

Today I gave the dog a bath.  She was not too happy but she needed a bath before she got her Frontline for the month and it was definitely needed!  Last night I found 2 ticks on her... yuk!  Tick season has begun.  They are getting ready to go dormant and looking for a last feed before hibernating.  Those suckers are really nasty!  These pictures are for Dr. Callahan.  Totally forgot about having to give her Frontline and Heartguard too... so just keep in mind, I'm kind of at my limit for medications in this house! ;-)

Oh look - Valium time again.  I usually update the blog at the end of the night after David has gone to bed.  I stay up and do the 1 am Valium dose and David gets up early to do the 6 am Methadone dose. I'm looking forward to Tuesday when we go to a 12 hour schedule, rather than an 8 hour schedule. Then I'll be able to go to bed at a better time.

Day 9 (home) - I actually miss the hospital....

So I'll be totally honest here - I miss the hospital.  I miss the structure, the people, the easiness of it, etc.  Don't get me wrong, I love my life, I love being a stay at home mom and I love being home with my family too but after spending so much time at the hospital and getting to know some of the people there I feel like something is "missing."  I am, however, thrilled that Trey is doing better and that I'm not constantly worried that something is going to happen and we are going to lose him.

Today was a good day for him though.  We again, had no throw up episodes, so either the Reglan is working or the extended continuous feed at night (12 hours instead of 8).  I think it's probably a combination of the two.  I definitely can't say I don't worry at all though.  I wrote the above paragraph downstairs.  I then came up to get Trey and I ready for bed and while I was changing his diaper I noticed he was breathing pretty heavy.  It seemed labored for a second and I could feel my heart take a dive.  It's that fight or flight feeling you get in your chest/stomach.  I watched him for a second and very quickly his breathing became normal again.  I can say though it's not a constant worry.  While he was in the hospital in the beginning my body just didn't relax.  I was anxious all the time.  There are times that I've been able to relax a bit now.  This morning we watched a movie while I ate breakfast and he had his meal through his tube.  That was nice.

So today we drove back down to Fairfax to get Trey's medicine.  His Methadone is a compound  and it has to be specially made.  That is why we can't get it around here.  We even tried to get his Valium the other day around here and the doctor couldn't find it in stock anywhere.  They tried to call some specialty pharmacies closer to us but they wouldn't be able to get it ready before next week.  Since I didn't think we had enough Methadone to last us through the weekend (since we stalled the wean for a bit we're using more than we originally thought we would) we had to drive back to Fairfax to pick it up.  Thankfully, this is the only time I'd have to do that since the hope is that this is his last Methadone/Valium refill.  We drove close to the hospital and it made me think of our time there.  I can't say enough about the nurses and doctors we worked with at that hospital.  They really made our time there bearable.  I feel like I should be bringing him up there to show him off - look all, look how good he's doing!

 
One thing though I do feel bad about is that my other son, Bryce, is sick right now and I just don't want to deal with it.  I'm afraid of getting to close to him and that I'll catch it or Trey will get it.  He threw up last night at my in laws house and then again twice at our house today.  I feel terrible that I've just turned myself off to him... but a stomach virus would just sink me right now.  Please include him in your prayers tonight that he feels better.  I really have never seen him in this much pain before.  He sat on the couch today with a heat pad, just clutching his stomach and groaning.  My mother has been here this evening and she has really helped with cleaning up and taking care of him.  She's been an absolute godsend.

Again - It's about 1 am and it's time for a Valium dose (for Trey... not me... unfortunately!)

Day 8 (home) - 1st Out Patient Visit with the Cardiologist

Today we had our first visit with Dr. Callahan since we left the hospital.  Getting ready to leave was tough because we're on such a schedule with feeds and medicines that it's hard to even leave the house!  His appointment was at 1 so I started his noon feeding a little early but he didn't eat a lot so I had to tube a lot of it which slowed things down.  I also had to make sure I had his medicine for his 2 o'clock dose of Methadone so I got everything I needed for that packed up (syringes, medicine and water to flush the tube).  We finally left the house at about 12:30.  It's about 40 minutes from the house but in true DC fashion... I hit traffic.  Of course on the way there I realized I didn't bring a change of clothes in case he threw up or pooped out of his diaper, nor did I bring any bottles... but gosh, I figured I'd be back sometime around 3 for his next feed!  Oh and yes, I didn't pack my wallet back in my diaper bag!  Wonderful.

Well, I got to the office at about 1:20 (I called to let them know I was running late) and he first got an EKG.  Then he had an echocardiogram and then yet another echo test (some new machine they were testing out... it was more precise than the other machine... I don't know what it was called, I forgot to ask).  3 hours later... his Ejection Fraction is about the same (28%... with the help of medication), they increased the dose of his Enalapril from .8 mL to 1 mL and everything else looked about the same.  He reassured me that it's only been a month and we still have a long ways to go.  This isn't something that is going to just improve overnight.  I left the office at 4:45 and made it home at about 6 pm... an hour and 15 minutes, not bad for rush hour traffic!

EKG

Echocardiogram

I have to head back down to Fairfax tomorrow to pick up the prescriptions because we also needed some more Methadone and Valium to complete the wean.  We are starting the wean back up on Saturday and are going a bit slower with the Methadone than the original wean.  He seemed to do really awful when we weaned .2 mL every other day so we're just going to decrease by .1 mL every other day until completely off.  So I just spent the last 2 hours refiguring out that wean based on the schedule that we were given from the hospital.  I then put it on a calendar, color coded it and stuck it in my binder.  I'm all ready for Saturday!

Lastly, the feeding went ok today again.  Since we spent so long at the cardiologist and I didn't bring any bottles with me (I'm a mom that normally nurses for a reason... my fear was forgetting to bring a bottle and what did I do the first time I go out?... forget the bottle!) so I nursed him and he seemed to do fine.  He did throw up after the 6 o'clock feed but it was a bit longer after he finished than normal and lately he has figured out he can eat his fingers... well, he stuck them a little too far down his throat and gagged himself.  So I don't think it was a true throw up like the other ones were.  I cut 60 mL off of the overnight feed to keep the mL/hour rate down.  He seems to do ok if it's about 50 mL/hr.  I'd rather have lose out on some calories by not giving it to him than having him throw it up in the morning.  It's easier on him. 

Tomorrow Bryce has off of school and the boys are going with my in-laws to a farm north of us.  My mom is coming over tomorrow to help me and we're going to drive on down to Fairfax to pick up the medicine.  Maybe we'll get some lunch at Sweetwater Tavern.  Yum.  First I have to figure out the feeds though.  The feeding pump company, Apria, hasn't gotten me the backpack for the pump yet.  Once I have that he can become more mobile with his feeds.  It's set up so that you can put the pump and feeding bag in it and you move it around.  Right now it's a bit hard to travel with the IV pole.  It doesn't quite fit in the car! ;-)

Day 7 (home) - 1 week Post Discharge!

Wow, so we've been home for a week.  It's been a  l o n g  week!  Today was good though.  Trey was an absolute doll and only cried twice because he was hungry.  The difference in his something is wrong cry and his I'm hungry cry is noticeably different - at least to me!  It was great to hear the hungry cry because he hasn't really acted hungry since September 12.  This was the first time I've heard him cry for food - which is great!  So maybe the Reglan is helping his stomach empty more so that he feels hungrier.  I sure hope so.  He did spit up a bit today but not bad.  Not like the other times. Trey actually took a 90 mL (3 oz) bottle today!  That's the most since September!

We had a really chill day.  I actually got laundry done and my mother in law brought Cole over for lunch.  I wrote some cards out and organized some addresses.  I was able to pump, feed Trey (bottle and tube), get all his meds in, watch a movie (The Other Guys... it was so so) and do some random stuff done - all without feeling crazed!  Oh... and I ate!  I also went to Math Night with Bryce (the oldest) at his school and we had a date at Yogiberry Frozen Yogurt afterwards.  It was fun and we had a good time. 

The home nurse came today and he weighed the same as yesterday.  He should have gained a bit since then but she thought that since he maintained his weight somewhat while still throwing up and having some reduced calories the past few days was pretty good so she's not that concerned at the moment. 

Tomorrow we have an appointment with Dr. Callahan, the cardiologist, in Fairfax.  This will be our first out patient visit with him so I have no idea what will happen.

Well, I am off to sleep.  I stayed up way too late last night (3 am) putting together Bryce's Halloween Party at school.  I'm the room mom this year (was last year too) and I'm not going to quit.  Bryce was really excited for me to do the parties again this year and I don't want to let him down.  I'm using a lot of what I did last year so it won't be too hard.  I have 4 centers, 1 game and a snack planned.  I figure I can get 1 activity a night planned out and into my travel box.  I made the invitations last night and sent them through backpack express today.

Snazzy, eh?  I got the template from http://www.designhousedigital.com/. 

10/19 Feed

Time to give the Valium!

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

Day 5 (home) - A Visit back to Inova

Today was terrible.  Trey was having awful withdrawal and not tolerating his feeds.  There is massive throw up at the end of a lot of feeds now.  At 4:40 pm the cardiologist had us go to the ER at Inova.  It took us about 1 hour and 45 min to get there with traffic.  By 7:30 we were in the back at the ER.  We finally got home at 2:30 am.  I'm exhausted so I'll update with more tomorrow but we are both at home now.

Trey at Inova ER all tuckered out from a rough day

Day 4 (home) - Quality Time with the Older Boys

Trey was about the same today.  He woke up throwing up at about 6:40 am this morning.  Watching him retch and throw up repeatedly with a terrified look in his eyes has got to be one of the worst things to see.  He just looks so awful and you can tell he feels it.  We stopped his feed at about 200 mL short but I was not going to force more food into that little body that was obviously not taking anymore.

He was pretty cranky for most of the day - inconsolable at times, so again, my guess is withdrawal.  Yesterday we went down on Methadone, today was Valium and tomorrow is Methadone again.  It alternates like that until the wean ends October 31.  Oh great... I didn't even realize that's Halloween.  Hopefully he won't be irritable that day, there's a lot going on in this house on Halloween!

I ended up not going to sleep last night until about 3:30 am.  I just couldn't fall asleep because I was scared I wouldn't hear him throw up if he did.  He was also breathing very raspy and fast and that worried me.  Every noise out of him worries me!  On the other hand when he doesn't make a noise, that worries me too!

I was exhausted today - still am - but I had a really good day with the other boys.  We went to one of Bryce's friends birthday party at Pump it Up and they allowed Cole to join in on the fun.  Pump it Up is the "Inflatable Party Zone", filled with a bunch of inflatable bounce houses.  We had a blast!  Cole had some difficulty climbing the obstacle style bounce houses so I went in with him and helped him.  We had so much fun!  I ended up getting quite the workout climbing and sliding down everything but my goodness, it was fantastic to hang out with the boys again.  I really haven't done anything with them in over a month.  They were in their element too... a place they could run, jump, fall down and just be crazy boys!  Plus, it was a "glow" party so the lights were turned off, the black lights were on and there were light shows throughout the room.  The boys had a good time playing with each other too.  Bryce is such a great big brother.  He was so incredibly helpful with Cole.

Bryce helping Cole up the climbing wall

Taken with my Iphone - was a bit hard to get a good picture in the dark!

I also spent some time at my neighbors house tonight socializing.  It was nice to get out for just a bit.  Especially since I probably wont be doing that too much this week while I'm home alone during the day.  The boys came with me and played with the neighborhood kids.  It was a great way to really tire them out and they had fun!  Tomorrow we have the home nurse coming to the house.  Bryce has picture day at school so hopefully Trey won't get sick in the morning so that I can make sure Bryce's hair is combed and he looks nice.  Well, off to make up Trey's feed for the night, pump for tomorrow, give Trey his Valium at 1 am and then hit the sheets!  I can't wait to sleep!

10/16 Feeding

 

Last but not least... Happy Birthday 30th Birthday to my brother, Michael!

Day 3 (home) - Scared

Not such a great day.  Trey isn't really eating much by bottle anymore.  He just gets pretty cranky when we offer it to him and turns his head most of the time.  He woke me up throwing up again this morning and it scared the life out of me.  The discharge paperwork said to call if he started to "feed poorly" and we didn't know exactly what that meant.  I mean - he left the hospital "feeding poorly" and that's why he had a tube.  I didn't want to bother the doctors if he was just still "feeding poorly" so I called the nurses at Inova for their advice.  When he left he was eating on average about 60 mL from the bottle and tolerating the 120 mL a feeding (he's now throwing up after most feedings).  I spoke to Summer at Inova and she said that since he really hasn't been close to that since he left the hospital that it would warrant as feeding poorly.  She said to go ahead and check in with the cardiologist just to be sure.  I called the cardiologist on call and got Dr. Thompson.  He was mostly concerned with if he seemed dehydrated.  He seems to be pretty hydrated... eyes aren't sunken, soft spot isn't sunken, etc.  Therefore, right now he doesn't seem to concerned.  He said to watch how he does and call back if he keeps throwing up after his feeds.  That was after his 3 o'clock feed.  He did spit up a bit after 6 but not as projectile as the other ones.  Gosh, isn't this fun reading, eh?  

I figured at the bottom of each daily entry I will post his feeding for that day.  I know there are some doctors and nurses out there following my blog so any input... please... let me know!  I am petrified of not seeing a trend or overseeing a trend.  The "missed" diagnosis at Children's scared me and I know that lots of eyes can help.  I don't want to fail to bring something up to his cardiologist that could point to something that needs to be addressed.

On another note, my mom came over yesterday to help and she stayed over night.  My father drove down today to meet her and they took the kids out to a local pumpkin farm.  They had lots of fun.  My mother in law watched Cole yesterday (Bryce was in school) and my mom was able to help me get most of the house under control (well, really, she got it under control!).  I definitely feel a lot more "normal" in the house now.  I can devote my time to just simple upkeep and taking care of Trey.

My parents and the kids

(reminder to self:  turn TV off when taking group pictures!)

I have never been so nervous about something for such a long period of time in all of my life (well, except for when the sniper was here!).  I have a really hard time going to sleep because I'm petrified that I won't hear him spitting up during the night.  He gets continuous feeds overnight.  It's awful. 

Today he had a really tough time with weaning I think.  Most of this evening he was just plain cranky... but it's not really a cranky kind of cry, it's more of a something is wrong kind of cry, so I don't think it's just being fussy.  He's doing a lot of head bobbing, which I believe is a side effect of weaning.  His head turns from side to side a lot, which startles him and sends him into a fit.  His eyes are also pretty shifty, which is another side effect of weaning.  It's awful to watch.  I feel so terrible for him.  Especially when I feel helpless.  I try to console him and it doesn't work very well.  Sometimes it seems like he is finally calming down and he startles himself with a head bob.  This whole entire thing sucks.  He's getting fussier and plus there's a lot more laundry since he's throwing up on everything.  

It's hard to have been put through this whole ordeal last minute and now not sure if anything that I am seeing in him is something that may or may not be serious.  He was my coughy baby ever since he was born.  I just figured he came out with a cough and he was just coughy.  My eldest gets croup a lot and I just thought ... another coughy kid.  Well, apparently that was a sign of a heart problem.  Yes, it wasn't just me that missed that.  I understand that.  I just don't know what to push and what not to push anymore.  To me this is almost as scary as being on ECMO.  At least when we were in the hospital we had the support of the doctors and nurses.  Now I feel a little more alone and I don't know what really to look for.  Especially since he seems to be having more of a harder time at home than in the hospital.  It's very hard.  I can do this though, well, we have to.  Heck, I (we) are doing this... but I'm still scared.  

Here are the charts I did for his feedings...
Total mL goal for the day: 960
Total max. mL per feeding: 120
B = Bottle, N = Nursing, T = Tube Feed, Rate = mL/hour going through tube

Today, 10/15

 

Yesterday, Friday, 10/14

Thursday, 10/13

Wednesday (discharge date), 10/12