Child Dedication Service

Charles's child dedication service is on May 19th, 2012 at 1PM at the Unitarian Church on 309 North Main Street, Fall River, MA. Anyone who would like to come is invited. The date is the two month anniversary of Charles's surgery. I look forward to celebrating with everyone! <3

Busy, busy, busy!

I am sorry that it's been a while since I've written. Things have been super crazy around here lately, and it's not easy to type with a broken hand!
Charlie went for his first professional pictures today with his sister. They dressed as superheroes. :)
He has been okay lately, although he seems to be overheating very quickly lately and getting super cranky. His appetite has been pretty healthy though. He has been eating more than 30 ozs lately, which is the higher end of his goal. His nurse hasn't been here since Monday, but at last weight check, he was 13lbs, 10ozs. If I try to wrap my finger around his legs, my fingers do not touch. lol
Charlie has an appointment with Early Intervention Tuesday, his pediatrician Wednesday, his cardiologist Thursday, and his nurses will be coming probably tomorrow and Friday. That is all week that we will have appointments JUST FOR CHARLIE! A girl can go dizzy from all of this. I bought some things to help better organize me, both at home and on the go. It's very helpful.

We have been doing belly time a few times a day, but he does NOT like it. 

I will try to update at some time this crazy week.

Stable

I must apologize for not updating in a few days. Things have been utterly chaotic!
This is the first time in two days I have been on my laptop more than five minutes.
Charlie has been doing okay. He is gaining weight very well. (13lbs, 10ozs) He is eating very well, but he has been pretty crabby and spitting up a bit lately. I am wondering if he is teething. I know I keep saying that, but for some reason I can't make myself believe my almost 4 month old is teething. He is sleeping well, and his meds and feeds are on a great schedule.
Addison is doing okay with her ear infections. She has been having quite a bit of accidents and tantrums though I am sure it is for attention. I feel terrible that most of my attention goes to Charlie these days, but she is so self-sufficient that I rely on her to pee by herself and eat by herself, not regress in the fashion she has been. It's understandable though. The stress is taking its toll on her as well.
Stress has been taking its toll on me badly. Between arguing with Tim and now arguing with his mother, I am so fed up with everyone. I am starting to feel as if I should worry about my children and ignore everyone else. It's not worth the stress of maintaining superficial relationships with people who don't have my children's or my best interest at heart. I just want to be happy and want my children to be happy, and it seems impossible. This is a topic in which I could rant on and on and on about, but I won't.
Well, folks, I have dinner to make, baths to give, a house to clean, and children to put to sleep! A mother's work is never finished! Update on my slower day - tomorrow.

One Month Post Op Echo

Yesterday, we traveled back to Children's Hospital in Boston for Charles's one month post op/follow-up for murmur echocardiogram. He also had an EKG. We met with Dr. Rhodes right after. He told us there was significant improvement in Charlie's heart function!! <3 <3 <3
He said the murmur is going away. Charlie's liver isn't even enlarged anymore. His EKG came back okay, and they are happy with how it looks since he's been off the amiodarone although they are starting him on another med for it. They told us we can pick Charlie up under the arms and let him do belly time. He can now start cereal and whatnot. He is gaining weight very well. He is now 13lbs, 5ozs. It was a very good visit. He is scheduled to go back May 3rd. Sometime next week a company will come by to set up the Holter monitor.
I stopped by the social security building since he was temporarily approved. They needed paperwork, but it was so hot in there with no a/c and nowhere to sit with him, and he was getting hungry and due for meds so I decided to go home and go back Monday.
I got Charlie's tattoo yesterday. It came out so well. I love it.
There isn't much else to update about since it is only the morning so I will be sure to update later or tomorrow.

Sleep is for the weak.

I am so sorry it has been a few days since I wrote. Things have been pretty crazy. Charlie went to the pediatrician yesterday. He weighs 12lbs, 13ozs. He is gaining weight! He has a blocked tear duct. Once, again, I am bringing the kids to the doctor's, and they are more concerned about Addison who has double ear infections again. I am petrified because it's like de ja vu. This is how it happened two months ago when Charlie first got sick, and since they stopped the pulmicort nebs, Charlie is congested and coughing again. I am horrified, especially with the concern of the murmur and his upcoming echo.
I celebrated my 21st birthday yesterday. Although I was excited, I am not too excited since this is the age Charlie will be IF he gets a transplant, where he would have to go for his second transplant. (If that makes any sense to you. I can't help my nonsense. I feel like I haven't been sleeping at all.)
Charlie had his second visit with the nurse today. She said his liver isn't enlarged anymore, but it is lower than where it should be. It sounded like good news until she mentioned it being lower. His weight is well, and she couldn't hear a murmur. She said perhaps it is PPS, or peripheral pulmonary stenosis. It is a type of murmur that comes and goes like how his arrhythmia comes and goes. She doesn't feel it is too concerning, or otherwise Dr. Rhodes would have ordered an echo then and there.
I meet with Early Intervention tomorrow to start paperwork for Charlie to start. I have been trying to do substitutes for belly time by sitting him against my chest and holding his arms so he can practice head control. I also "lay" him on my chest and let him push himself up on his forearms. I cannot wait until he can start to be on his belly again and roll over finally. It's little things other moms take for granted. :)
Things have been pretty pressing as far as my relationship. It's been very tense and stressful. Going out for my birthday helped somewhat because it was nice to have some time for just us (although we were joined by our friends, Amanda and Janelle.) I have no clue how things will end up as far as our relationship. It has been insane. I speak to my fellow heart moms about it, and it's so great to have advice and to know that I am not alone no matter how much I feel it. I will be sure to update some time tomorrow. Scout's honor!

We had an awesome turnout yesterday. 105 people were served plates, and many more came to show support and buy some raffles tickets. I am not quite sure how much was raised yet,. It was just nice to see how many people care about Charlie and how one little boy can bring together so many people. I wanted to thank everyone because it is just amazing to see all the hard work that went into yesterday, and it was touching. <3

Charlie is doing okay. Not much change in his demeanor since yesterday. He made a brief appearance at the dinner before we went home. Now, today is a day of rest. Hahaha. It's a day of chores and cleaning because my work is never finished! 

Update later!

Charlie's Big Day

Wearing the shirts donated to us :)

Well, today is Charlie's spaghetti supper, and it is completely sold out! There is only take out available, and I believe raffle tickets. It's so nice to have such a big turn-out. I am pretty happy that there are so many people who are coming to support Charlie and his amazing fight. <3 Even Addison is so proud of her little brother. :)
Today is the last day Charlie is on methadone as well. He is still pretty crabby. I am not sure what is wrong seeing how he is pooping. I gave him Tylenol and gas drops. The cardiologist said he shouldn't be in pain. I feel so helpless. I don't know what is bothering him. :( He is eating well, peeing well, pooping okay, so I am not sure if it's teething. His gums don't look swollen. I forgot how  much of a guessing game having an infant is. Addison can tell me when there is something wrong. Well, I am going to shower and get ready for the day. I will definitely update and let everyone who couldn't come know how well everything turned out. :)
I just want to say thank you to everyone quickly before I sign out.
It means so much to me that the community has been so supportive and caring and so many places have donated things to be raffled off. I am so thankful so many people are taking time out of their busy lives to come and show their love and awe for Charlie and his long road to recovery. I am just grateful to you all. Thank you all from the bottom of my heart. <3

First Outpatient Appointment

Today was Charles's first outpatient appointment. We went to Good Samaritan in Brockton to see Dr. Rhodes. I had a few questions for them concerning his weight gain, the pulmicort, etc. They told me that Charlie has a heart murmur now. They said because his left ventricle is damaged, Charlie's heart isn't squeezing as well as it should be, and blood is probably backing up. He called it mitral regurgitation. As a result, they are doubling his dose of Captopril, Charlie's "favorite" medicine. They gave me a prescription for a stethoscope so I can listen to his heart and see if there is any arrhythmia since they are taking him off of the amiodarone due to long Q and T waves(?) on his EKG. They think the amiodarone is responsible for it. He now weighs 12lbs 9ozs which is a big improvement since his last weight check last week where he weighed 11lbs 7ozs. He still looks so scrawny. They also took him off of the pulmicort neb because he sounds a lot better than before. (If he starts sounding worse, I always have it in the closet.) Besides that, he is scheduled for an echo next Friday at Children's Hospital. (I thought it was going to be a lot longer before I ever went back there again!) He follows up with Dr. Rhodes and the electrophysiology team after the echo. They said his fussiness is either teething or constipation due to the meds, but his poop isn't hard so I think Charlie may be teething! That explains why he is always chewing on his fingers. lol Well, I am going to call Masshealth and Enos Medical Supply and see what I have to do to get syringes, a stethoscope, and diapers since he is on two diuretics.

ETA: Charlie's Spaghetti Supper is tomorrow at the West End Grill in New Bedford, MA on Rockdale Ave. Call Pam or Trace to get more info if you're interested! 7742027041   5086176425  7745351810

Must Be the Weather

Today,  Charlie is NOT a happy camper. He has been very sad and crabby all day. (He is entitled to be.) I have him swaddled and in his swing right now. I have done everything I can think of. He is fed, clean bum, not constipated, no diarrhea, gas drops, meds, everything I could possibly think of, so I am thinking he is just uncomfortable. I undressed him thinking he might be hot, but no luck. I feel bad when he is like this because I am not sure what to do to make him happy. My poor baby. 

We went to WIC today and got his formula switched to the Gentlease. That was a nightmare seeing how I sat in there with him for THREE AND A HALF HOURS!!! My poor little boy cooperated so well, but I felt bad because he was so sweaty. He has been pretty sweaty lately. I am going to talk to his cardiologist about it tomorrow. (He has a cardiologist appointment tomorrow, by the way. lol) Well, I have things to do in the small frame of silence in this house until chaos starts up again! 

I will definitely update tomorrow!!

Superman

Well, things have been pretty quiet around here. I went through Charlie's clothes today and got rid of SOOOO much stuff that doesn't fit him. He is so difficult to get clothes for. He is super long, but super skinny as well. (About 12lbs now, and almost 28ins long. Yes, 28.) I bought him some new clothes from Kmart and some more of the Ventaire bottles. He seems to be doing very well with those. He was pretty cranky this morning. I am not sure why, but he is in a much better mood now.
He is weaned down on the methadone now to 0.1mL every 12 hours. Almost off of it!! We started out at 0.2mLs every 8 hours when we came home.
His cardiologist appointment is Friday. I am pretty anxious since it is our first since being home. I don't know what to expect. I am starting to memorize his meds and how much he is on and how often. My heart mom friends were so right when they said that things would get easier when I get home.
I noticed he still gets really sweaty with feeds and while sleeping and whatnot. It's pretty scary. I try to keep him in thin pj's without a onesie underneath.
Charlie will be in the Standard Times tomorrow in the Health section if anyone is interested. I have to go start dinner since my sister and her friend will be here soon. Update later!

Superman

Healing nicely :)

Meds, meds, meds.

Famous Little Boy

Today has taught me how intensely stressful this whole situation is. It was a pretty simple day, yet I am still so overwhelmed with not only being a mother of two, but caring for a sick infant and a three year old while trying to maintain a relationship that was rocky to begin with and also attempting to sort out the various things in life such as school, daycare, WIC, etc. I feel like I am going insane. I feel like I could just give up. (Obviously, I would NEVER, but I cannot help feeling so fried.)
Things got pretty heated between Tim and I, and I know things have been stressful, but I am not sure if there is another reason to it as well. He seems really annoyed and snippy, like it doesn't take much to set him off, and I am not sure what to do.
I can't help but feel alone, abandoned, and helpless. I don't even think things were this hard for me emotionally in the hospital because I didn't care for Charlie solely as I am now. I had monitors to look at to know he was okay, nurses constantly at my call if I felt something wasn't right, and I even had some support. Now, I am completely alone and caring for both children while trying to maintain my life. You see, simply put, my outside life was put on hold while we were in the hospital. I had ONE main focus, and it was difficult to wrap my head around that, but right when I started getting used to it, it all changed again, and we were homeward bound. Now, it's more stress compounded on me, and I feel like I am cracking under the pressure. I need some support, and I feel like I am not getting it from the appropriate people. In fact, it feels like they are turning away from me when I need them most. It's pretty upsetting.
But enough about my feelings. Let me get to my famous little boy.
He woke up this morning around 4am, STARVING. He wolfed back an entire 6oz bottle, and he went to bed. I tried to feed him again when I woke him for his meds at 7am, but he was not interested. I tried again at 9:30am, and again, he wasn't interested. It worries me and frustrates me immensely when he won't eat. I get scared because that is how I knew something was wrong before. He did end up eating three more 6oz bottles since then, meeting his goal for the day at the minimum. (24-30ozs a day. He did 25.)
My mother came to visit, and she was making him laugh like crazy. It was an incredible feeling to hear him laugh. It almost makes me forget the stress and forget that he is sick.
The case manager for his home health aide came by today so we could fill out the paperwork. She was smitten with Charles. She was really comforting, and I cannot explain how relieving it is to know that I will have help with a visiting nurse three times a week, despite the fact that it will only be for a few weeks. I may have to use his donation money to help pay for a visiting nurse if Masshealth refuses to continue the visits after three weeks.
We met up with a reporter and photographer from the Standard Times of New Bedford at Tim's mother's house, and we got to tell Charlie's story. It's strange how when we were telling the story, it felt like we were discussing a movie we had just saw. Whether it is because of the lack of sleep, the immense stress, or just shock, I still cannot register everything that has happened, and it's almost been a month. I am impatiently waiting for this to be over. I just want my healthy little boy. I don't want to constantly fear I am going to lose him. I want my "normal" family back. I feel like I am losing it, and I look at Charlie and can't believe - he is the one who is going through all of this, and he manages to smile every second of the day. My son is my hero. <3
I am going to head to bed soon so I will update tomorrow. Good night, everyone. Until tomorrow!

Home, home again...

Well, I didn't update yesterday because we were discharged from the hospital, and I just wanted to spend the day with my family. We visited Tim's father and colored eggs there. It was quite strange - the feeling I had when leaving Boston. I was actually pretty sad. I think I got used to being able to look at a monitor and know that Charlie is all right. I liked having nurses help me when I had a question. To know that I am solely responsible for his meds and whatnot, it's really frightening. Everything about this is terrifying, but I am trying very hard to stay cool and calm and collected.
Easter was pretty sweet. We visited Tim's mother's house. My father, his girlfriend, and my little brother came to visit us here as well as my cousin and her daughter. (Her daughter is two weeks younger than Charles.) My father bought me a laptop for my birthday which was really thoughtful of him. Not because it's a laptop and an amazing gift, but because I know he bought it so I can stay in touch with my heart moms and have support throughout this all. He truly understands that I need other moms who have been through this to talk to, and it just makes me even more thankful for my father.
Charles slept very well last night. It was his first night home and his first night in his co-sleeper. He was so comfortable, he slept from 10:30pm to about 7:30am. I, on the other hand, only slept a few hours because Addison's allergies are awful, and the post nasal drip is making her cough all the time. I don't expect to sleep well for quite some time.
I feel pretty lousy. I already screwed up Charlie's meds last night. I forgot to give him a dose of aldactone. It made me want to cry because I feel so incompetent. He has so many medications due at various times of the day, and they are so vital to his health that I feel so overwhelmed. I don't want to screw things up. I am sure I will figure out a system. I, honestly, can't wait until he is off the methadone. I won't feel as nervous, but they are also going to be adding coreg soon. Yay. Another med. -___-
Charles had a tub this morning. It was weird seeing him without tubes, lines, etc. Just incision marks where the tubes and lines were and, of course, his incision from the surgery. I could see his ribs because my little man is so scrawny. I need to get him to gain more weight! I bought him a new bottle. (The nurse suggested a wider nipple so he can get a better suck. He has always had a pretty lousy suck though, even when I was breastfeeding.) She thought it would help him to not work as hard to eat. He did pretty well with it today. (I only used it once so far.) If he does well with it, I will have to pick him up some more of them. They are the wide Playtex Ventaire kind.
Well, I will updated tomorrow unless tonight brings any news. :)

Day Eighteen Post Op

Well, this morning has already been a bit nerve-wracking. They were about to give Charles his ativan when I mentioned the nurse practitioner's orders to discontinue it. Apparently, she never wrote it down in her orders, but she mentioned it to me so they held off on it until rounds, and they decided during rounds to stop it. The possibility of going home tomorrow was almost taken away, but he is sleeping right now. He hasn't shown any signs of withdrawal (thank goodness!) so we may be going home tomorrow!!
It's still pretty early so there isn't much to talk about so I will update afterwards. Time for breakfast!

Scary realization today - Someone named Dr. Almond from the Heart Failure Services in Children's came to talk to me this morning. He mentioned that he would be looking at Charles's medications and altering them to "ensure the highest survival rate possible". I don't think of my son surviving every single day. I found myself in the same trap everyone else is in. He didn't just survive surgery; every day is a triumph for him. They talked about the possibility of him needing a transplant in a year if his echo doesn't improve in the next six months. They said "although he is doing amazing, there is always a possibility he could need a heart transplant in the future so if that day comes, we will have a talk about it then." Did I mention the Heart Failure Service is also known as the Transplant Team here? A heart transplant never crossed my mind. I honestly thought that we were on the road to healing and that he would be on medication for the next year or so, and he will be weaned off of it, and Charlie would be a "normal" kid before his second birthday. It's unfortunate that I have adapted that mentality because being a mother in this situation, I should learn ANYTHING IS POSSIBLE. It is a bit frightening, but on a more positive note, I spoke to another nurse practitioner, (the fourth since we've been in this unit), and she told me that it is very likely we will be going home tomorrow. She will let me know for sure by 3 or 4PM when she speaks to the rest of Charlie's team and as long as no one has any objections. She is calling his medication into Rite Aid. Surprisingly, they are going to make all of his medications. (I guess some pharmacies don't mix some of the meds he is on.) She is also requesting a nurse makes a few visits to our house during the week to make sure Charlie is still doing well after discharge, but that will only be the first week. Next week, we have an appointment at Good Samaritan in Brockton with his cardiologist. (Apparently, his cardiologist just started making appointments there which is closer to us than South Shore in Weymouth.) I cannot wait to get out of this hospital and shower and shave and get comfortable in my own home, surrounded by my family, and sleep in my own bed. It will be great. I know everyone keeps saying that I need to be patient and wait until Charlie is ready, but I am sure he is. We have had a quiet past three or four days. He is doing so well, and I'm sure he would feel comfortable being at home. Well, I will let you know more when I get anymore news. They will be doing a chest x-ray today because they think we should be going home so they would like to get one done before we go. Updates soon!

It is definite - WE ARE GOING HOME TOMORROW!! :D Yay! On the three week anniversary of our arrival here. I cannot explain how happy I will be to know that hopefully I will never have to sleep here again. Outpatient visits will be better than staying here for three weeks. It feels like it has been three months. We had some unexpected visitors today - my father and little brother, and it was so nice to have a surprise visit. I am exhausted, and Charles will be waking up soon to eat so I will update tomorrow. I just wanted to let everyone know that we are going home!

Day Seventeen Post Op

Charles's first ride in a stroller EVER, and he loved it.

I am in the family waiting room in the cardiac catheterization unit. Charles was just sedated for his echo which should take an hour, an hour and a half, and then he will be going for his broviac removal which will be another 45 minutes. i am looking at being down here for a total of four or so hours because he will also be asleep for anywhere from 30 minutes to 2 hours after the surgery. Somehow, I am not a nervous wreck about this. Perhaps it is because compared to open heart surgery, it is so minor, but I am a bit anxious because it is still surgery. Tomorrow they will change tweak Charles's ativan and methadone. They are trying to get him off of it safely without withdrawals so we can go home since the ativan is the only thing keeping him from coming home.

Today we went on a walk for a few hours. We explored the hospital and got lost a few times. I bought Charles a pair of pajamas to go home in. (They have Cookie Monster on them!) and we ran into a robot. I was trying to keep him entertained since he hadn't eaten since 3:30AM. (He had an oz of glucose water at 8:30AM.) My poor little man was ravenous. He was sucking on the binky so hard, I feared he might swallow it! lol 

Tim is coming up after work today. He and I spoke on the phone for a little yesterday, and he opened up a little bit. It was nice to actually have a conversation about our feelings. We also talked about the wedding debacle, and we are still unsure about what is going on with that so we will talk more about that when I go home. I am hoping that he is bringing Addison up today. I really miss her. I have been trying to talk to her on the phone lately, but she isn't too interested in being on the phone. She keeps asking when we are coming home. I feel bad because I kept telling her that we'd be home soon, and our stay got extended. It's so difficult to be away from her for this long. I have been sleeping a little better at night when I leave the television on, I noticed. I don't sleep long, but I don't have nightmares. I am hoping that when I get home things get a little easier. I have been thinking about possibly starting online schooling. I need to set up a plan as far as what I will do when Charles is able to go back to daycare, possibly in a year. (Honestly, it is when his heart function nis better, and he is off of the 8 medications he is going home on.) 

The robot. Dun-dun-dun!!!

Speaking of medications, the nurse practitioner and I talked about how many medications he will be on at home, and I didn't even realize that we are going to have to switch pharmacies because apparently some don't prepare the meds he will be on. He will be on lasix, methadone, pulmicort nebulizer, aldactone, captopril, aspirin, plavix, and amiodarone. They also explained that I will have to mix his formula differently because he is on high calorie formula. He will be following up with Early Intervention, a nutritionist, cardiologists, and his pediatrician quite often. I think most people hear that Charlie's surgery went well, and he is recovering well, but they don't understand how much he is still going through and will continue to go through for the next year or so.
At the support group I went to yesterday, the chaplain said something that really made sense to me. When your child is diagnosed with a potentially fatal, chronic heart disease, you are opened up to a whole new world that differs from the one most parents live in. We are learning how to care for a child with a defect. It isn't "normal" parenting, Now that I sit and review yesterday's group, I realize how much it helped. It's a shame there isn't a group in New Bedford for parents of children with heart defects. Maybe there is. I will have to do some research. The good thing is I have my fellow heart moms and fellow ALCAPA moms on Facebook so I have some people who know the troubles of being in this crazy, upside down world. (It almost makes me feel like Alice, going down the rabbit hole and into Wonderland. Eventually, we will return to the "normal" parenting world, but for now, we are on this journey.)
Well, I will update when I have some news. Until then, I am going to browse some birthday party theme ideas for Little Miss Addison.

Well, everything went by faster than expected. He is doing okay. When he woke up from the anesthesia, he was NOT happy. He screamed and kicked and cried and wouldn't take his binky and wouldn't drink his bottle. They gave him tylenol, and he was still miserable. Finally, we took all the wires off of him and swaddled him and walked around with him, and he passed out. We walked up to his room and put him back in his crib, and he is sleeping. I will rip people's heads off if they wake him after that reaction. lol I would have left him in my arms asleep if I didn't have to pee. lol All is well though, and They are going to give him his nebulizer treatment right now.
They are apparently moving someone into the space next to Charlie's. I am pretty bummed about that. I don't like sharing rooms with other people because it just feels awkward, especially since the bathroom is on their side of the room. I know it sounds selfish, but I wish we could request private rooms. Unfortunately, on this  ward, you have no choice but to share. I will update more when he is awake.

Charlie is doing so much better. He ate a seven ounce bottle when he woke up. We went on a walk with Daddy and Addi to see the fish in the lobby and the robot trains. The nurse practitioner came in and discussed the echo results. She said BASED ON THE REPORT (not viewing the echo). she sees "trivial improvements but no regression" so basically there hasn't been much change in his heart function since last week. She said she emailed the echo footage to Dr. Baird and Dr. Rhodea and is awaiting a reply from them to get their opinion. (Dr. Rhodes is who Charles will be seeing after we are discharged as his pediatric cardiologist.) The kicker of it is that while I was discussing it with her, I mentioned how he was on ativan twice a day, and she corrected me. She said they tweaked it to once today. No one told me that. I was told by another nurse practitioner that they weren't weaning it down anymore until tomorrow. She told me they weren't even giving him ativan tomorrow. If he handles that well, we may be able to go home Saturday, our three week anniversary of being up here. To be discharged Saturday would be amazing, but I am preparing myself to be here until Sunday or Monday. I don't want to get my hopes up as far as leaving Saturday, and then we find out that I am really staying a few more days. Today has been pretty crazy. Hopefully, he handles being without the ativan okay. He is really on such a small amount anyway. I will be feeding Charles soon and heading to bed. I've been going to bed around midnight lately, and I wonder why I am always so tired. lol I will definitely update tomorrow. Good night, everyone,

Day Sixteen Post Op

I talked to Tim's father's wife last night around midnight, and she really helped me put things into perspective and really "cheered" me up. in a sense. (I'm not cheery, just not as upset.) Charlie and I got some sleep, but he woke up so hungry, and because of his procedures today, he couldn't eat past midnight, but could have Pedialyte before 6AM. Needless to say, he does not like Pedialyte and didn't have more than half an ounce. Poor baby. He was scheduled to go for 8AM, but they are busy so they put a hold on it, and he can't eat still.  I really hope all is well, and we can go home tomorrow. That would be fantastic. They didn't give him his Lasix and aspirin this morning because he is having the broviac removed and due to the fact he hasn't eaten since 9PM last night.
They just came in an told me that they are rescheduling until tomorrow. Ughhhh. I just can't even deal with being in this hospital anymore. I just want to go home already, and I'm sure this place is taking its toll on Charlie as well. I will update later or tomorrow since it looks like today is going to be ANOTHER quiet, boring, lonely day.

Charlie's broviac removal and echo is scheduled for 11AM tomorrow. They said the reason it didn't happen today is because there was supposed to be an IV in place, paperwork wasn't filled out correctly (not by me), and they never requested blood to be put on hold for him. I was so upset. Apparently, there was no chance of us going home tomorrow anyway since he is still on the ativan, and they will not send us home while he is on that. We are looking at Sunday, if all works out well. They will wean him on it today and Friday, and hopefully, it will be all set. He has an IV now, and I was told everything is in place so he will DEFINITELY be going for the removal tomorrow. He has been pretty quiet today. Nothing new. He isjust eating and sleeping and watching some TV.
I have been so sick to my stomach. I am so stressed out, I have had a headache all day. I haven't really eaten. I just want to go home. I miss Addison. I am still unbelievably annoyed with Timithy. I spoke to him for a whole two minutes today, and of course, he had to go. Once again, he is the one person I depend on to comfort me and be supportive of me through all of this, and he is the one person who is just too absorbed in his own things right now. It bothers me immensely because I just want him to understand what I am going through and how I am feeling, and it's like he has no desire to. I feel so isolated up here. He doesn't call me, text me, or anything. It's quite upsetting. It makes me feel abandoned and even lonelier. I don't know what to do anymore. What can I do except sit here and cry and be alone, day in and day out.
I went to the support group here today, and I was the only one to show up. (Talk about feeling even more alone.) Halfway through, a woman showed up, and we chatted for a little, but I can't shake this awful feeling.
I will update tomorrow since tonight will be pretty boring.

Day Fifteen Post Op

Almost on our way home!
Early this morning, Charles had a bath. He doesn't have a fever anymore. Hopefully it doesn't come back. He has been eating with no problem, taking his meds, and although he is still a bit congested, he is doing well. They are lowering his methadone and ativan. He is almost off of the ativan. (He is on 0.1mL of ativan. 0.2mL of methadone.) Today is going to be a pretty quiet day for the two of us. He isn't allowed to eat after midnight tonight so he will be placed on IV fluids. Tomorrow morning, they will take the broviac out and do an echo. Assuming his echo comes back okay, we can leave on Thursday! That would be fantastic. :D

Starting to take the binky again. He loves that lamb. <3

I have the CPR kit which I will review tonight. I am pretty much just hanging around, chilling out today. Charlie is out cold right now, all curled up with his little lamb.
 I am going to have to make sure Tim has the co-sleeper set up and has gotten rid of the bassinet. (Charlie is wayyyy too long for the bassinet now, but the co-sleeper is made for babies up to 30lbs.) I've been going over some wedding stuff we need to get set up. Other than that, not much to do up here but count the minutes and seconds until we go home. Updates later.



So today has been very quite as far as Charlie's progress, but I can't shake the stress. In the three weeks we have been up here, I have managed to feel more and more alone. Just when I feel connected to Timithy and feel like my family, Tim, Addison, Charlie, and I, are going to be a complete, strong family unit, it all falls apart. I am no longer getting married any time soon, It's a complete disappointment, but I've come to expect that from people nowadays. There are very few people who never manage to let me down. I don't think I have ever felt so isolated, physically, emotionally, and mentally ever. I feel like I want to break down and cry at any moment, but I can't. It's like no one understands how difficult this all is. No one can look beyond their own opinion and selfishness to see that despite the fact that Charles's surgery went well, and he is doing okay right now, there is a LONG road ahead. This is not the end of this. My stress and depression and anxiety and anger doesn't end here because we will be leaving the hospital soon hopefully. I am so drained and so beyond intolerant of ignorant people that I just don't know what to do or say anymore because it is all becoming a fight. The worst question in the world is "How are you doing?" I just want to scream and cry and stomp my feet and throw a tantrum when people ask that because how else can I respond except by saying, "I'm okay." I know that it is a lie, and certainly they know it is, too, but no one cares enough to be honest with me. I cannot stand to talk to people anymore. Everyone thinks they know what I should or shouldn't say or do. They think that I need them to hold my hand and show me how to be a mother and a girlfriend, but they cannot bear to think of anyone but themselves. They have no idea that I am stronger than they will ever be. I have been through more than they could ever handle, and the more amazing thing is that my son is stronger than I could ever hope to be. He has been through hell and back and manages to smile every moment of every day. People can see what Charles has been through, but they just have no idea what I am struggling with, and of course, no one wants to know. Just remember the next time you see me - behind my smile, I am fighting back the urge to break down to pieces. Once Charles and I go home, this blog won't be updated as often as it has been. This laptop will be returned to its owner, and at home, we don't have a computer so I will update when I can. (I will update regularly until we go home though.) Good night, everyone.

Two Weeks Post Op

Mr. Charlie Buckets and I had a nice night's sleep after his crabby time. Slept about six hours! I ended up going back to bed after feeding him and the whole drill, and I had a HORRIBLE dream that someone was trying to take Charlie from me, and I chased her down and told her to give me my son back so she tossed him to me. I went back home to Tim and cried and told him all about it, and he comforted me. Somehow, she ended up getting Charlie from daycare or something and killed both herself and him. It was a terrifying dream. I am crying just writing it. I think I am still afraid of losing Charlie although he is doing very well. The fact that I was so close to losing my child has been stuck in my head and heart, and I can't help but fear that I may lose him at any moment. It's such an awful feeling to constantly have hanging over your head, weighing on your every thought.

He much prefers to suck on his hand than a binky.
Rarely, he will take a bink.

The good part is we should be going home Thursday, given that everything goes well the next few days. His echo and broviac removal are scheduled for Wednesday morning. As soon as we get home, I am going to have to set something up for counseling.
Today is a very boring day. There is no change in meds or anything. Just a quiet day filled with sleep, eating, and pooping. And the same for Charlie :) (Just kidding!)
While I went to the cafeteria to grab some breakfast, his nurse said that Charles coughed up some phlegm. She, then, gave him  his meds (a little too much too fast!) and he vomited all over the floor. USUALLY, they give him his meds BEFORE his bottle. lol And they thought me to give a little on the inside of the cheek at a time. He is sleeping right now. She wanted me to feed him since he threw up everything. I suggested I let him rest, and then when he wakes up, I can feed him again. lol
I will update if there is is any news.

His stitches were removed the other day. Looking A LOT better!

It seems like when all is well, a fever HAS to pop up. Poor baby has ANOTHER fever. He is on antibiotics so I don't understand the possibility of an infection. He is very congested, but when they suction him, they get nothing out. Today was supposed to be boring, but I have been running around like a chicken with its head cut off trying to get people on the phone from Pace and DTA to figure out what is going on with Addison's daycare voucher. Meanwhile, I am meeting with the neurodevelopmental group here and also the "arrhythmia team". (They are lowering his amiodarone, and we are being referred to Early Intervention just because he is going to be a little delayed with rolling over and whatnot.) I love that DTA has yet to call me back after I called literally 15 times. Pace called me, and the woman had suuuch an attitude. She said that she can't talk to the social worker up here. She needs a referral from DTA. I explained my DTA worker is on vacation, and today is Addison's last day on the voucher. She told me too bad. Call the supervisor. Well, needless to say, he isn't picking up. Gosh, today turned out to be a poopy day. lol

Well, we got Addison's daycare voucher sorted out until the end of May. Thank goodness. I am in such an awful moos. I feel so alone up here right now. These last few days are going to drag, I'm sure. (If we even go home Thursday since he now has another fever.) He is sleeping pretty well right now, and the night nurse and I decided it was best not to wake him since last night he was very, very crabby when we woke him up. If he doesn't start waking up in a half hour or so, we will have to wake him up though because it's been a while since he ate last. I am afraid to go to sleep tonight because of the dream I had last night. The doctor prescribed me Ambien, but I don't want to take it in fear that I may not wake up with the baby. I feel like I am in a lose-lose situation. I am so ready to go home. Maybe some of the stress will dissolve when I go home and shower in my own house, feel comfortable, sleep in my own bed next to Tim, and be with both of my kids. There isn't much to update as far as Charles. I will try to update tomorrow if there is any news.

Heard Charlie laugh for the first time today. :D It was so friggin' adorable. He is doing very well tonight. No fever. Peeing well. Drinking well. Blood pressure is normal as well as heart rate and everything else. Let's pray his fever STAYS AWAY! We need a healthy Charles so we can move forward.
I have quite the bit of calling around and whatnot to do tomorrow. I gotta call Pace to make sure they received the referral for Addison's voucher. I have to call the Unitarian Memorial Church to see if they have April 29th available. Tim decided he wanted to get married in a church, and since I consider myself Unitarian, that is the obvious choice. I was also going to get a date for Charlie's baptism. I planned on getting it done in New Bedford last month, but then he got sick. Charlie is falling asleep again so I might as well get ready for bed myself. I think I will try to sleep without the Ambien tonight. If worse comes to worse, I will try it tomorrow night. Update tomorrow. Night, y'all.

Day Thirteen Post Op

Sorry I didn't update last night. Unfortunately, I didn't sleep at Tim's father's with Addison because they moved Charlie out of ICU yesterday! I had to be there to learn how to give him his meds, but I did spend some time with her. We had dinner at Tim's dad's house. His father's wife made my favorite food too. :) It was nice to have some time with Addison. I am glad that I will be home soon. The doctor her is telling me that hopefully Thursday, we will be home. He has no more pacing wires, no more "A" line, no more IV's or anything else besides his broviac line and his leeds. The broviac line needs to be taken out under anesthesia. That is why we will have to wait so long to go home because Charlie is doing super with his feeds. He is doing anywhere from 3oz - 6ozs at a time. He is sleeping well also. They did a chest X-ray and said his heart is still enlarged as well as his liver, but his lungs are clear so with some suctioning and chest PT, he should be okay as far as congestion. They lowered his ativan and methadone, took him off of the hydrocortisone, and is doing well with his meds by mouth. No more feeding tube either!
Tim and I spoke again about getting married, and he decided that we should get married sooner with a small wedding. :D He suggested my birthday, but I think that doesn't give enough time to set up some wedding stuff. (A dress, a tux, rings, and a reception at Pub99, I hope! lol)
I will DEFINITELY try to add more pics of my little man without his tubes and whatnot after, but Tim and Addison and our other visitors need some attention!

I've been waking Charlie up to feed him because he is just so sleepy. He is being weaned off his ativan first, (He can go home on the methadone but not the ativan.) I'm not sure if he is having withdrawals or what, but he was a mess tonight when he was due for his methadone. He was so fussy and seemed like he wanted to eat but wouldn't. He had two ozs. I wasn't sure if it was because of gas, because we woke him up to feed him, or whatever other reason. He was so mad, and normally, he isn't like that. He was like that the day before he was diagnosed. That was why I brought him into the hospital on St. Patrick's Day - not eating and being super fussy. I rocked him for a while until he calmed down and laid him in his bed. I figure since it's just him and I in the room tonight, maybe we'll sleep well. (Last night, there was a dad and his daughter on the other side of the room. It was just odd to share a room.) The doctor mentioned today that Charles's liver is a bit enlarged because of some backed up blood from his heart failure. Given this new information and his behavior tonight, it is a bit frightening although they told me not to worry. They said it is normal for an ALCAPA baby. The doctor also said that in her twenty years here at Children's Hospital, she has seen maybe four cases of ALCAPA. 

I am so exhausted from getting awful sleep the past few days that I feel like I am just functioning somehow without even thinking about it. I need a nice shower at home and a good sleep in my own bed with my husband-to-be. Just knowing I am with my family will make my anxiety and stress go down some. I will have to find someone in New Bedford to see as far as counseling. The medication Brigham and Women's started me on has not helped at all. It has made me toss and turn all night and feel sick to my stomach. Maybe that's just the anxiety though.

It really made me happy today to see Timithy take interest in his son. He was happy to see him, wanted to hold him, and was also curious about his meds and asked a lot of questions. He even gave the baby some of his meds. :) He was very affectionate towards me today. It felt really nice. We have been talking about the wedding again and really getting things started towards it. He kept saying "Brooke Gonneville" today, and it just sounds funny. To think that in about four weeks, that will be my name. For the past 21 years, I have been "Brooke Amarantes" and now I will share my children's and my partner of the past seven years' last name. 

We should be heading home soon. Tomorrow, they will schedule his echo and broviac removal. Then after that is performed, we can go home within the next 24 hours, BUT it may take a few days to get the echo and broviac removal scheduled. :(  I just want us to go home already. Tomorrow makes two weeks since his surgery. It STILL seems so surreal, and I am honestly STILL in shock. I understand that this is the best place for him, and he needs to go home when he is ready and safe and on the right track, but it's been a hard couple of weeks, and I am so ready for the future. It looks hopeful and promising. A new last name, a second chance, a changed outlook on life. I will never take my family for granted again. I will never underestimate my strength and that of my children and husband. Everything has a new value to it, and I realize I can only take it one step at a time, and this, too, shall pass. Good night, everyone. <3