Saturday, March 31, 2012

Day Twelve Post Op

It's been exactly two weeks we have been here. Goodness. It feels like two months, to be honest.
At least Charles is doing great. They switched all his meds to oral meds so no more IV drips!! Woo hoo!! He is still eating like a champ and is so much more active than even before his surgery! I love it. He is so scrawny though. I will have to fatten him up when he gets home. I will probably start cereals and a little bit of fruit and whatnot at night. He is such a string bean, my thumb and pointer finger touch when I wrap them around his thigh. Pretty bad.
We are going to have quite a bit of visitors today, so I may not be able to update until later tonight or tomorrow. (I am also going to sleep at Tim's dad's house with Addison. She has been such a good sport through this all. She needs some time with her mom too!) Well., off to breakfast with Timithy.

Friday, March 30, 2012

Day Eleven Post Op

We need bigger clothes, Charlie! I think we will need to use
some of the donations toward clothes that actually fit. 
My little Charlie Buckets has kept me busy this morning after a crappy night's sleep. The night nurse didn't get him to feed well, but Momma has the magic touch. At 8am, I got him to eat 4ozs. We decided to wait until 12pm to feed him again, and then the little porker at 6ozs! He didn't throw any of it up either!! His nurse today simplified the room by getting rid of the machines he isn't on anymore, especially since they switched most of his meds to suspension meds vs. IV meds. (They put it in his feeding tube instead of by mouth so he isn't deterred from eating his bottle.) Today is the first day in almost two weeks he is wearing clothes again! Despite the fact they're a little too short on him. lol He is having a fabulous day. He was very awake yesterday and is today. It's awesome. He babbles. He cries. He is doing very well today. I am very happy as far as Charlie's recovery. He is only on a small does of the IV milrinone, IV lasix, and IV amiodarone. They are giving him electrolyte supplements to replenish what he is losing from the lasix, methadone and ativan (both were weaned down some more.) He only has his feeding tube, pacing wires, IV, and "A" line in. (Also, the monitor leeds and the O2 toe thingy, and the blood pressure cuff, but those are all minor things he will have when he is transferred out of the ICU.) Dr. Baird told me this morning that by Monday we should be out of the ICU, and most likely by Friday or Saturday, we should be home. The nurse told me another week in the ICU and another week "on the floor", as they call it.  They are also going to try to switch him from the milrinone to the captopril that he will be on at home. (Another IV machine down!) and they will transfer him lasix to oral after everything else is switched. Later on today, the "arrhythmia team", as the nurse called them, will be down to decide what to do about the amiodarone and Charlie's arrhythmia. (Maybe another machine down?) I'm just so happy my little boy is making progress.
Insert a cute picture of Charlie since I am talking about my personal stuff.
I am not happy about the talk Timithy and I had last night about the whole "Let's get married before our anniversary" idea. He doesn't want to because he doesn't want another date to remember. Honestly, I am not sure that is the reason. What can I do though?
I'm not sure if I mentioned it yesterday, but I will briefly reiterate. (I can't remember if it was a conversation I had with someone or if I wrote it in the blog. It's been a long two weeks.) I write about my feelings and my personal life AS WELL AS Charlie's journey because I want any other heart mom (mom with a child with a heart defect) to know that what she is feeling is completely normal. I want my blog to be a way for anyone in my shoes to feel like they aren't alone. It is a very lonely situation. You feel like you are living in this completely different world than everyone else, and it's like they are trying to reach out to you, and you are trying to reach out for them, but it's not the same. It's very difficult to explain to anyone who hasn't been through this. (I know I keep saying that, but it truly is insanely hard to describe unless you've walked this road.) I talked with Tim's grandfather yesterday, and we could sympathize with each other. Obviously, our situations were different, but it was nice to feel like there was some correlation between us. Being in this sort of situation changes your whole mindset though. It makes you appreciate things others don't. My family always meant a lot to me before, but this just exacerbates your love and loyalty. It also makes you very straight to the point. i don't have time or energy or patience for bullsh*t anymore. Honestly. Well, Charlie has been napping so I will update later if possible.

(I had a high demand for pictures. I was so excited about being able to hold him yesterday that I didn't email myself the pictures!! The last one is my absolute favorite!)
The most beautiful little boy in the whole world <3

Thursday, March 29, 2012

Day Ten Post Op

Sorry I am updating pretty late in the day, but I GOT TO SNUGGLE AND FEED MY LITTLE MAN! :D
He only ate about an oz, but it was fantastic to be able to hold him again. We talked. (Okay, he babbled a lot.) It was amazing. For a second, I forgot how depressing this all was.
Last night, while I was laying in the sleep units, I heard a woman crying through the walls. It was heart-wrenching. I just wanted to knock on her door and hug her. This morning, I sat in the cafeteria alone, and I looked around. There were a few mothers visiting with their children. (You could hear them explaining the situation to their children. "Mommy will be home as soon as she can.") There were doctors and nurses eating, and there were other people like myself, sitting alone. This whole environment is so insanely depressing, but just the hour of holding my son and bonding with him made that all disappear. It put rose-tinted goggles on my eyes. After Charlie fell asleep and was snuggled in his crib, I walked the hallway and saw the crazy clowns in a little girl's room singing to her. I saw hope. It felt great.
I got an email from a heart mom today. I am reading the blog she made for her daughter, Michaela. ( It is such a nice feeling to talk to someone who understands what I am feeling and going through.
I was thinking maybe tomorrow or Saturday, I will sleep at Tim's father's house in Brockton (about 30 minutes away from the hospital) so I can spend some time with Addison. She needs her mommy too.
I was thinking about my wedding today. Tim and I had decided to put it on hold until next year because of Charlie's sickness, but I was thinking today that I would like to have something really small, nothing like what we were originally planning. I was thinking I would like to have it sooner than September, have a ceremony in the park under the tree we first kissed or in a church, and then we could have a small reception at his grandmother's house or just go out to eat at a restaurant! I just feel like getting married would make my family feel more complete and tight-knit, and that is exactly what I would like right now. My biggest thing in life has always been my family, but you never know how important they are to you until you almost lose one of them. It just makes things so much more appreciated. Besides, it's about the marriage, the union, not the wedding. Just thought I'd throw that out there since it's on my mind. (Tim says no. He wants to wait until September 8th because it's our anniversary, and he doesn't want to have to remember a new date. Loser.)
Charlie is doing well. Hoping he will be out of the ICU by Monday and maybe out of the hospital by next week. He is being taken off of the heparin and put on aspirin and plavix. He started on amiodarone for the arrhythmia. They aren't touching his lasix today, and they will be spacing his methadone and ativan further apart. They slowly have to wean him off of that so he doesn't withdraw. He is doing very well. I can't wait until we are home already though! I know he needs to get better and everything, but still. I will update later if there is anything new.    :)

I stole this from Michaela's mom's blog. (Her name is Ashley.) I thought it was awesome.

This year, nearly 100,000 women will' become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth. As he observes, he instructs his angels to make notes.

"Armstrong, Beth; son; patron saint, Matthew. Forrest, Marjorie; daughter; patron saint, Cecilia. Finally he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter?"

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles, "No matter. I can fix that. This one is perfect.

She has just enough selfishness."

The angel gasps, "Selfishness?

God nods. "If she can't separate herself from the child occasionally, she’ll never survive. Yes, there is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a ‘spoken’ word. She will never consider a 'step' ordinary. When her child says 'Mama' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations. I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life."

"And what about her patron saint?" asks the angel.

God smiles. "A mirror will suffice."

I had a surprise visit from Tim's grandfather. It was really nice to get out of the hospital and let Charlie rest. Tim's grandfather and I had some really nice conversations, and it was nice to feel know that he can relate to where I am coming from somewhat. We also talked about the blog and how what I write sometimes upsets people, but I explained to him that it is a way for me to get everything out. I am alone up here, and this is a way I can get everything out and off my chest so I can be somewhat of a sane person. (Somewhat. lol) I am sorry if it offends anyone, but this is my blog. Enough of that conversation. Charlie had a good nap while Grampa and I went for coffee. He was VERY awake and alert today. I just fed him, and he ate 2 whole ozs!! We will try three next time. :D Nothing really different today. Slow and steady progress.

Wednesday, March 28, 2012

Day Nine Post Op

Charlie is getting extubated today!! Yay!!!
Of course with good news, there is some bad news. He seems to have episodes of arrhythmia. They may put him on medication for it. 
This poor child cannot win though. Thank goodness they are taking the tube out today because his lips are blistering from it. :( 
They will also be weaning him off the hydrocortisone and epinephrine and spacing his methadone and ativan further apart. I get to hold him today hopefully! Fingers crossed!
I will update later. 

ETA: The antibiotics have brought his white blood cell count down so they are positive it was either a throat or lung infection. His lungs are pretty clear today and no sign of a fever.

Look at that friggin' face! I love it!!! <3 <3 <3
Charles is officially off the ventilator!!! He sounds a little junky, but that is normal because of the secretions his lungs produced when he was on the breathing tube. They are going to let him rest for a while, and in a few hours, they will test his gases and see if his O2 and CO2 levels are okay, and then I can hold him for the first time in almost two weeks!!! Later on tonight, I can try to feed him with the bottle. (The feeding tube will stay in for a bit longer until he is tolerating the bottle.) They said he might suck back the first bottle very well, and then the bottles after that may be a bit more difficult to get him to eat. I have faith in him though. :) I am so friggin' happy! He doesn't want anything to do with his binky though. lol They thought he might want it, but it's like he forgot how to use it. lol I just want to hold him!!! Hopefully, we can go home sooner than we thought. Maybe we WILL be home for Easter!

I went to Brigham and Women's today to talk to a counselor. I found it helped. Also I had a few moms on various websites I have been browsing are reaching out via email to me. It's really nice to have some other moms to talk to, ones who have been in this situation before, even some with ALCAPA babies! I visited with Timithy for a while. We had dinner together in the cafeteria. How romantic. lol We spoke a little about the future and what will be happening as far as what needs to be accomplished for Charlie's discharge and what will happen after discharge. (He will be set up with Early Intervention because being here, for even just a month, will delay some things. Just a small hiccup in plans. My little hiccup man <3 They will also have him see a cardiologist in New Bedford quite often, and Charlie will be seeing a specialist here in the hospital every so many months.) We came back to the room, and Tim visited with Charles even though he slept the whole day. I was told by the nurse that removing the tube is a very exhausting event in recovering cardiac patients, especially infants. He slept ALL day. I saw less of his eyes today compared to yesterday. They are weaning the methadone, ativan, heparin, hydrocortisone, and epinephrine off. They should all be stopped by tomorrow. This will help introduce him to the meds he will be on at home on a daily basis from now until maybe a year from now. He will be on Captopril, aspirin, and lasix and also a med to help with the arrhythmia. The Captopril will take the place of the milrinone he is on now, and the aspirin will replace the heparin. He is only lasix right now so that won't change. He needs to start eating again too. The nurse tried the bottle with him for the first time, and apparently, he did awful with it. He was all over the place and couldn't really suck on the bottle. The poor thing hasn't eaten in almost 10 days! Why do you think it's so friggin' hard for him?! It seems we are almost done with out stay here in Children's Hospital.  Thank goodness. I'm sure there are little things I will miss, like the burgers, the helicoptors, the clowns who sing in the elevator, the huge ball contraption in the middle of the lobby, but I will be SO relieved to be out of this place and home with my family. I texted Tim that I was sorry we had been fighting, and we were just really stressed, and I miss him and Addison.
I am going to bed tonight after a lovely conversation with Tim's grandmother.
Good night! I will write again tomorrow!

Tuesday, March 27, 2012

Eight Days Post Op

So overnight Charlie spiked a fever, and his white blood cell count is elevated. They sent some cultures and told me that they're not sure if they are going to extubate him today. His heart rate is pretty high, in the 180s, but they told me that's common with a fever. The fellow seemed confident that the fever wouldn't hinder the breathing tube being removed because he did so awesome with sprints yesterday. We will see though. I'll update some more after rounds.
No extubation today. :( If he needs the stupid machine, then he needs it. It just sucks because I was looking forward to holding him. His fever is going down a little with Tylenol and a cool sponge bath every 15-30 minutes. They are continuing his feeds. (They stopped them at about 5 because they thought they'd be taking him off of the ventilator.) Nothing much going on today with him. His heart rate is going down a little. I am exhausted Well, i will update later if possible.
Nothing really to update. Charlie is sleeping. He was awake for quite some time this morning. It was so nice to see his eyes for so long.   :) His fever is virtually gone, and he is pooping like crazy from the Colace they gave him. His heart rate is back down. The nurse got him another blanket, but I can't cover him up because they don't want him to overheat. Teshia brought him up an Elmo blankey yesterday. This little man has a million blankets. My father said his snuggle buddy came in the mail so this weekend when he comes to visit, he can bring it to him. The nurses brought in a mobile for Charlie. I guess they figured too much TV for the little man was no good even though he loves watching it. (I spoil him!)
I talked to the social worker. We are working on getting me an appointment at Brigham and Women's for counseling and whatnot. Other than that, today has been pretty uneventful. I am waiting on Timithy to bring up Addison whenever that may be. After her visit, I will probably end up going to bed. I am tired and sad and cold.

I can't sleep, and I am so bothered tonight. I got to see Addison, and she cried for me as she left. It really upset me. I tried to fall asleep around 7:30pm because I am just so drained, but I couldn't. I ended up talking to Addison on the phone, and again, she was very sad. She kept saying she wants me, and it's horrible to have to explain to her that I can't come home until Charlie is better which could be another week!! I reached out to Tim and told him that out of everyone offering me support, the only person who knows what I am going through is him, and he is the only one I want to rely on for emotional support and for love and someone to talk to, but he literally told me he is too busy. He and I argued. I finally just told him that I get it. He can't or won't be there for me and that the emptiness in this relationship is unhealthy. I obviously cannot count on him to be the one who catches me when I fall because he is "too busy". I feel my heart breaking. I hope Charlie isn't in this much pain.
Thankfully, I have an appointment at Brigham and Women's Thursday morning to get some help. I have a support group tomorrow for parents with children in the CICU. I'm not sure if I am going to be able to go though since Tim is bringing Addison and Kayleigh up here. I miss my kids. I miss being home with them and being able to hold them and kiss them whenever I want. I am not coping well with this situation, and I don't know what to do anymore. How can I feel so lonely when there are so many people willing to be here for me? I am so tired, but I am just so upset by everything. What to do, what to do.

Monday, March 26, 2012

One Week Post Op

It has been ONE WEEK since Charlie had his surgery. It feels like each day has been equated to a month. The amount of stress and how slowly the days and minutes pass. It seems like it's taking forever for him to make somewhat of a recovery, but today is the day that Charlie will be taken off of the ventilator!!! We are waiting for the echocardiogram which should be soon, and then they will try to wake him up and get him as excited and agitated as last night so the know when they remove the tube, he will be awake enough to breathe on his own. I can't wait to be able to hold him again, to see his smile! My gosh, it feels like it has been forever!
I wanted to say thank you again to Gramma Lue for ordering me the "My Son is a Survivor" sweater. I am serious when I say I am ALWAYS going to be wearing that sweatshirt! If anyone is interested in getting a survivor sweater, they're on the Cafe Press website. They have them for nephews,  nieces,  aunts, uncles, grandparents, etc, and they also have other cool CHD awareness stuff. I will update further after the echo and rounds.

Well, Charlie is staying on the ventilator until tomorrow. He is too sedated to take him off. He needs to wake up more. They lowered his methadone a little last night, but he is still really sleepy which is completely understandable. Also, they had to hold his feeds overnight because he isn't pooping. This is the classic "one step forward, two steps back" feeling. He had two REALLY GOOD days, and today is going to be a tough day. I can already tell. The biggest thing that bothered me this morning was seeing Charles's incision for the first time. Like I mentioned earlier, it seems like it's been forever since we've been here so I expected it to be healed more. I actually had to leave the room because seeing something like that on my child, I am bawling my eyes out just typing this. I plan on talking to the social worker about setting up counseling or something for me. I am not Wonder Woman. I am not as strong as everyone sees me, and things are starting to topple down on top of me. At least, that's what it feels like. The longer we stay in this hospital, the harder it is to cope with things, and although I did feel like I was handling things pretty well given the circumstances, seeing his incision just showed me how unprepared, for lack of a better word, I am. I just want to crawl under the covers and wake up from this shit. I keep waiting for reality to smack me in the face because it's been over a week since we have been here, and still, it seems so surreal. I don't know how to explain it so anyone who hasn't been through it can understand. I will update if there is any other news. It seems today is going to be a pretty quiet day though. More sprints, and that is about it.

No big changes with Charlie. He did sprints pretty much all day, and besides two little episodes of apnea, he is doing awesome. They are weaning him off of the methadone and ativan. He was getting really excited, and his heart rate was going up, and he was breathing real fast so I had to let him chill out and rest when he would get too crazy. I am hoping that I can hold him tomorrow. It's been over a week. It is killing me.
I miss Addison. I got to talk to her a little today, but it's not the same. I just want to see her and hold her and know that she is doing fine. I haven't ever been separated from her for so long.
I miss Timithy too, but it seems like the feeling is not mutual. You know, I have been trying to be as strong as I can, and still I have been breaking down. Seeing my son in the state that he is, it is heartbreaking to a parent, but its like Tim doesn't feel that way. I'm not saying he isn't bothered by what is going on. It's the fact that he doesn't show any emotion about it at all. This is a LIFE CHANGING event, a trauma, a crisis situation that occurred in less than a week, and it seems like it has not hit him. He and I have not talked about it. We haven't talked about how we feel or ANYTHING. Someone told me, "This is either going to make or break your relationship." And they are 100% correct. This is the type of event that can bring a couple closer and make them stronger, or it can drive a wedge between them. It is a time when support and emotional availability needs to be mutual, but it is just non-existing here. I feel like I am alone in all of this. The one person I want to be able to rely on for support and love and open arms is the one person who doesn't want to bother. I don't care who this upsets because it is how I feel, and I have a right to feel this way. Charlie is not just my child. I was not the only one who created this little boy so why does it seem like I am the only one upset that we almost lost him? Why am I the only one rejoicing that Addison and Charlie are both alive and doing well? Why do I feel like I am reaching out to the person I am supposed to marry, the person I created two beautiful children with, and it feels like he is just too busy to ask how Charlie is doing or how I am doing or to see if I want to see Addison.
When an event like this happens, you understand that it is going to take a toll on you, but you never realize the mushroom effect it has. No one ever says, "You're not Superman. It's okay to break down. It's okay to feel like you are losing your mind." Everyone is too busy telling you that everything is going to be okay and that you need to STAY STRONG, but why can't I admit that I am not as strong as it takes to deal with this alone. I need help. Truth is, I am looking into getting help, and if you judge me or see me as weak or whatever, then all I can say is until you walk two moons in my moccasins, you don't have the slightest clue what strength is. As a mother, strength is allowing and having faith in someone to CUT INTO YOUR INFANT'S CHEST AND CUT THEIR F**KING HEART. It's watching your child slowly, and I mean sloooowwwwllllyyyyy, getting better and to see your child with countless IVs and machines and tubes connected to them and to sit by their side every day and do what you can when you can. It's knowing that although it is such a horrible feeling being away from your child for so long recognizing that you have to stay by one's side while being away from the other, and she will understand it when she gets older. Don't talk to me about strength.
With that said, I am going to try to sleep, hoping tomorrow I will get to hold my son AND my daughter. <3

Sunday, March 25, 2012

Day Six Post Op

(Tickets to the Spaghetti supper are available at the West End Grill on Rockdale Ave in New Bedford or you can contact Pam Richard on Facebook or by calling 774-202-7041. Thanks, guys!!)

Well, it was a pretty quiet night. I spent time with Addison. (She is sleeping at Tim's dad's house in Brockton so she isn't too far away from me!) Tim slept here last night. It was nice not to be alone. We had quite a bit of visitors yesterday, and I am expecting the same today. They are going to re-tape his breathing tube and then remove the last draining tube. When he wakes up, they will do what is called sprints. They turn the ventilator pressure down and allow him to really breathe on his own for about an hour, and then they let him rest for an hour and turn the ventilator pressure up a little. They will keep doing this until tomorrow so he will be prepared when they remove the breathing tube.
He is doing awesome today! At rounds, they said he could probably be extubated today, but they'll wait until tomorrow. He is completely off of the morphine, and they are spacing his methadone and ativan further apart. He is doing very well. His heart rate is still very low, (!35-140s), and he is doing pretty much all of his breathing on his own. He has been opening his eyes more and more. :) It's great to see him with his eyes open and responsive although when I talk to him, he can't find my voice. He looks everywhere. There is less and less machinery around him each day. I still can't believe that this is happening to us. It STILL seems surreal. I just want him to be 100% better. As a mother, it is the hardest thing to see. When Charlie was circumsized, I cried. I felt awful that he was in pain. Now the comparison of him being circumsized to him having open heart surgery; it's just crazy. I wish I could hold him and rock him. This is all so very hard to handle, but I am trying my hardest to keep hope, especially since each day, he does better and better. My son is the toughest person I know, and he is only 3 months old!! Although he won't remember any of this, I will, and it will NEVER leave me. You learn a new appreciaton for life and for family when something like this happens, and that is exactly what happened. I am so thankful for my son and my daughter and Timithy and everyone who has been amazing and supportive and insanely helpful through this all. You never expect a reaction this monumental from people you don't even know, but it truly is phenomenal. I want to thank everyone - our family and friends, all of those who are coming to the spaghetti supper and those who donated to the Charlie Gonneville Medical Fund, all the nurses and doctors. There is so much gratitude in my heart; words couldn't describe.
They removed the last of his drain tubes. All he has left is the pacing wires to his heart and the breathing tube. Oh, and the "A" line and the intrajugular IV that they are hoping to take out today. The "A" line and pacing wires will stay in until right before we leave the hospital. He is doing amazing today! He was WIDE AWAKE before, staring at Tim and I, wiggling all around. It was amazing!!! He tired himself out though. They put him back on the morphine drip for a little so they could remove the drain tube and fix his breathing tube. Once the morphine is worn away, they will start weaning him down on the methadone and ativan. They are also weaning him down on the lasix because he is doing so well. :D

Charlie did AWESOME with his first sprint. He did TWO HOURS before he started getting tired. They will let him rest for two hours now and then start another sprint. They will probably do this another two or three times overnight, and first thing in the morning, they will do an echocardiogram and make sure his heart can tolerate being off of the ventilator. (They said his gases came back perfect. That means during sprints and while on the ventilator, Charlie is doing just as much work and doing awesome!!) After the echo, they will let him fight the breathing tube and then take it out. They said 24-48 hours after the tube is removed, he will be moved out of the ICU!!!! :D :D :D They will wean him off of the heparin, epinephrine, methadone, and ativan, and they will introduce the captopril, adjust his lasix, and add aspirin. When his meds are at a good level, and he is eating again, they will let us go home. They are saying maybe two weeks. That is awesome. My little boy is such a fighter. He is doing so well!!!
My sister said the Revival Tour shared my blog. I just wanted to say thank you for sharing Charlie's story. It means a lot. :)
I also want to thank Tim's mother, her girlfriend, my sister, and everyone else helping out with Charlie's spaghetti supper and his donation fund. It's something that I couldn't even think to deal with right now, and knowing that everyone else is lending a hand to make things easier, it is truly amazing. <3 Thank you everyone!
Little man watching The Wizard of Oz. I spoil him and let him watch TV. lol

A painting in the hallway that I just noticed today

Saturday, March 24, 2012

Day Five Post Op

So today makes a week we have been here. A week since he was diagnosed. A week since our lives were turned upside and taken on this crazy trip. As you all know, Charlie opened his eyes yesterday. :D :D :D I am still on cloud 9 about that. Today is going to be a pretty relaxed day of visitations. There is no big goal today. Since they are extubating him on Monday hopefully, they will start to wean him down on the morphine tomorrow, and since they aren't touching any of his meds today, they can't increase his feedings because he is at the maximum volume he can tolerate right now. They said last night that Charlie weighs about 10, almost 11 pounds which means he has lost two pounds. That is a lot for a baby to lose in a week. You don't think it is because an adult's weight fluxuates a pound a day anyway, but a baby? That is crazy! He will begin gaining weight when he can eat more. My poor thing. When he woke up, you could see his little tongue trying to suck on his breathing tube like he was going to get some food out of it. He is such an amazing child. He has been doing great, and Addison has been awesome too. Her life is a mess right now as well. She is so used to having me around 24/7, and now I am not home. She comes to visit me in a hospital for a few hours and goes home with Tim. It's tough for her. I can tell. I talk to her on the phone, and she asks when Charlie and I are coming home, and it hurts. I just start crying because there is nothing more that I would love than to be home with both of my children. (and sometimes Tim. lol)
There is just so much on my mind that I would like to share today since there won't be much progress with Charles today. Thinking about Charles's surgery, it's insane. Dr. Baird and the surgical team literally gave my son another chance at life. If it weren't for them, he would have become sicker and eventually passed away. (Remember, the mortality rate of ALCAPA without surgery is 93%.) They fixed his heart so he can go on to live a normal life eventually. I owe them so much. I am so grateful, and it blows my mind that there are people in the world that can do the things they do - they literally save lives several times a day!! Can YOU do that? lol I will probably be updating later on today. We are expecting quite a few visitors today. :)
Look at this little boy! <3
Doesn't he make your heart melt?

Charlie has a new blankey. One of the nurses gave it to him. :) They love him over here. lol

Well, I sat in on rounds, and they are going to get him off of the morphine today and increase his calories. The plan is to take his tube out Monday, but they are going to try to wean him off of the epinephrine after Monday but keep him on milrinone. It's so nice to see him heading in the right direction. <3

Friday, March 23, 2012

Day Four Post Op

I should really learn to have more faith. Though the night, Charlie improved dramatically. His heart rate dropped FIFTY POINTS! His current heart rate is 144. His blood pressure is great. He is still receiving the methadone and ativan every two hours and the morphine drip, but the reason for his high heart rate last night was apparently the ventilator. Charles is fighting so hard - he is fighting his ventilator. They changed the mode of it so that when he initiates a breath, the ventilator realizes it, and it allows him to breath. The only time the ventilator breathes for him is if he goes a certain amount of time without a breath initiated by him. They lowered a few of his medications. The game plan today is to take him off of the dopamine completely and to hopefully start feeding him through the feeding tube. If Dr. Baird has time, they will probably remove the chest tube as well. God, I am so friggin' ecstatic this morning.
I want to let the iheartcharlie followers know that Charles's grandmother has set up a spaghetti supper benefit for him. It will be on April 14th from 3pm - 4:30pm at the West End Grill in New Bedford, MA. (The information is on my Facebook if you are my FB friend.) I want to say thank you to Danny and Maria Tremblay and their daughters, Monia and Michelle, for donating the West End Grill for Charlie's benefit. Also, I want to thank Joe for donating the food that will be served that day. (I'm sorry I didn't list last names!) Feel free to comment though, guys!! :D
Also,. Tim's grandmother set up a donation account for Charles. I am amazed at how much is already raised for him! More thanks are in order to Tim's grandmother and her co-workers, Linda and Auntie Ann and Uncle Tommy. Thank you all so much. It really means a lot. To donate to the Charlie Gonneville Medical Fund, you can send it to:
Sovereign Bank  440 Mount Pleasant Street  New Bedford, MA   02746
Please make checks payable to Charlie Gonneville Medical Fund. This will all help with gas for his dad to get back and forth to Boston, for me to eat while living in the ICU unit, (No, they don't feed you here.) and for anything else that may come up, possibly paying for Addison's daycare while Charlie is recovering since her daycare voucher is being terminated, for any bills we need to pay while Timithy is out of work, etc. At first, I felt a little cheap asking for donations, but I took a second to realize how much money Tim and I have spent in gas in food in the past week, and I am shocked. I had so much on my mind, money was the last thing I even cared about. (Again, the information is on my Facebook.)
I will update later today. :)

Well, I have been trying to help with the spaghetti supper for Charlie as much as I can. It really makes me happy to know that there are SO many people willing to help and who care as much as they do. I am in talks with my mother about making pins, either heart shaped or regular red awareness ribbons since red ribbons are also for coronary heart disease or half blue and half red ribbons for congenital heart defects. Speaking of CHD, I found this necklace online that I very badly want for my birthday. I am most definitely getting a heart-related tattoo for Charlie. (Don't even think about copying my idea! I will kill you! lol) I am in a much better mood than last night. The weight of it all was starting to creep up on me especially talking to Addison on the phone. She kept asking when Charlie and I were coming home. I hate being away from her so much, but I need to be here for Charlie. It would help if Tim would be there for her as much as he could. I mean, he is trying to help but not as much as he should be, in my opinion. I am just at the point right now where I have ZERO patience and tolerance for people who are trying to complicate my life so if I snap at you or freak out on you, know that it is obviously something you are doing. I have been trying to keep myself as clear-headed as possible, but the longer I am here, the more everything is toppling over on me by the end of the day. I need people who are going to help me be progressive and strong just as I am trying to do for my son. For the most part, people have been extremely supportive, and I am incredibly grateful for that, but there have been a few hiccups, and they just add more to an already filled plate that I have right now. Perhaps I am being a bit harsh on Tim, but I expect him of all people to be trying just as hard as I am since this is his child fighting to get better. I slept quite a bit last night, and I was pretty upset. I just needed time out of the hospital room, and things were making me pretty crazy yesterday. Today, Tim, Chelsea, Addison, Tim's father and grandfather and aunt are coming to visit today. Tim's mother and his mother's girlfriend are also coming up tonight. Tomorrow, my father, his fiancee, and my cousin are coming up. I believe that's all we will have for visitors tomorrow surprisingly. Sunday, my mother and her husband will be up as well. Not sure if my father plans on returning Sunday as well. We'll see. Off to breakfast! Can't wait to see my princess!!

So I sat in on rounds, and here is the plan for Charlie  - They are hoping to stop the dopamine completely while going up on the amount of methadone and decreasing morphine drip. They are planning on getting him off of the morphine to wake him up a little more. Hopefully by Monday or Tuesday next week, he will be off the ventilator. They removed his catheter so he is now peeing in a diaper. :D I never thought I'd be happy to change his diaper again. lol Things really seem to be moving forward for him. They are going to decrease the pressure from the ventilator to see if they can stimulate some random breaths from him. *sigh* My peanut. I am looking at more CHD (congenital heart disease) stuff and Team Charlie things that I'd love for my birthday.
I know that it's a bib for Charlie, but it's funny!,362412952
This sweater is $40, but I would wear it every day, summer or not.,566875519
This shirt is adorable!,594460731
This website has a lot of cool things for CHD. Check them out!!
Well, I'm off to get some breakfast before everyone heads up here. I'll update if any new news.

Apparently, they are lowering his epinephrine as well. He is completely off the dopamine. Also wanted to say I contacted SouthcoastToday about possibly doing a story on Charlie and to help raise awareness for congenital heart defects in general. I am also going to talk to Fun 107 about it as well. Maybe they will want to help out. Hey. You can only hope! Here are some pics of Charlie today. They are from earlier, but right now, he is all snuggled up. They swaddled him.
The brace is so he doesn't pull his tubes out.

I wanted to take a video to show you how he responds to me tickling his feet but it was being silly.
The breaths per minute on the ventilator went from 18 to 16. They increased his feeds. Good stuff. I got to see Tim and Addison today. I was really nice to spend some time with them. There were quite a bit of visitors today, and I was really proud of them for donating blood. (and attempting to, but they were closing up when Tim and his sister went to go.) I spoke to Tim's mom today, and she asked if I was going to keep the blog strictly about Charlie and his progress, and I'm not going to. I will talk about how I feel and what I am going through because people need to know how it affects EVERYONE, not just Charles. A situation like this turns people's lives upside down, and I am hoping that this could help others. It helps me to vent and get things off my chest so this situation is easier to deal with. Just wanted to share that. It seems to me that tonight is going to be a quiet night. Tim is coming to stay with me tomorrow while Addison sleeps at Tim's father's house. My father and his fiancee are coming to visit as well as Tim's mother and her girlfriend. I'm not sure who else is going to come see him. Busy, busy, busy.

I wanted to quickly mention that I put the wrong zip code for Charlie's medical fund. It is 02746 not 02745. Also, I have been emailing Michael Rock from Fun 107, and they are going to promote Charlie's dinner and medical fund! How cool!!

Tonight is truly a great night. Guess who decided to wake up a little??? :D :D :D :D
I have been waiting a lifetime to see those beautiful, blue eyes again. <3

Thursday, March 22, 2012

Day Three Post Op

Well, I was surprised at how much I actually slept! I went to bed at about 10pm and woke up at 6:30am. I haven't slept that long in forever. It was just such a quiet night, my body thought it'd catch up on all the sleep its missed. Charlie's blood pressure and temperature have been very stable all night. His heart rate is a little high (170s - 180s) but it's mainly due to the fact that they're weaning him off of the dopamine and increasing his epinephrine. (The dopamine maintains blood pressure while the epi helps his heart contract, and at this point that is exactly what he needs because that is what is going to help his heart function improve.) They are pretty certain he will be getting his chest tube removed today as well as the I.J IV (intrajugular IV) so he will probably be coming off the heparin too. (Heparin is the blood thinner he is on.) He really seems to be doing well today. I am hoping his heart can handle coming off the paralytic today. I will try to keep you all updated as I get more information. Dr. Baird, the surgeon who performed Charles's open heart surgery and valve repair came by to see him today. He's actually been coming by about twice a day. It's really nice that the doctors and nurses here care enough to follow up as much as they do. :)
I talked to Tim this morning, and he got more information about getting a referral so we can keep Addison's daycare. He is going with his grandmother this afternoon to set up a donation account for Charlie. I feel as if we don't need it because we aren't paying for his care out of pocket. (Thank you so much, Masshealth!) and I've been doing okay as far as buying food and whatnot. I feel guilty asking for donations because I don't feel we need them. Tim goes back to work Monday so we are missing out on one paycheck. We still have our cash benefits and food stamps to pay bills and buy food. It's really as if everything was normal. I would really just like to get support from everyone and raise awareness because it's such a rare defect, and it almost took my little boy. No one, including myself, had ever heard of ALCAPA before this.
I talked to my dad because I emailed him last night and asked if he could throw in a few dollars to help me buy this stuffy for Charlie. I had a $10 Amazon gift card, but the thing was $12. lol I know it's all religious, but I could care less. I just wanted him to have something to cuddle with when he gets up. It should be here by the time he is awake and alert. :) Well, I will write back after I get some updates as I said before. Rounds should be soon so we will see what the game plan is.

They will be removing some of this stuff today hopefully!

Still has his chunky cheeks. Can't wait to see those eyes open! Maybe today!!!
Great news! I sat in on rounds about a half hour ago, and here is the game plan for today. They are going to stop the heparin and dopamine. (The dopamine is making him a bit tachycardiac, and they are removing his RA [right atrium] line today as well as the chest tube so they are stopping the heparin.) In about an hour and a half, two hours, they will be lifting the paralytic to wake him up! :D Hopefully, his heart can handle it. I believe if he starts to get too rambunctious, and his body doesn't handle it well, they will increase his morphine, ativan, and methadone as opposed to placing him under the paralytic again. (Methadone helps sedate him and deal with pain while keeping his heart rate down. I heard methadone and was like, "Huh???" lol) If he handles it well, they will probably start feeding him through the feeding tube tomorrow. I hope he does well because I really want to see him with his eyes open! I want to see him move around. Next big feat will be getting him off of the breathing machine so I can hold him! lol That won't be for a while though. It's okay. Baby steps. I am just so excited about them lifting the paralytic today!!! Updates later obviously!!!

No news yet, but I was thinking, they have ribbons for so many different things, but they don't have one for ALCAPA. They seriously have a ribbon for HEADACHES. Wtf.? I am declaring red ribbons for ALCAPA. lol What better color for a heart defect? :) Lifting the paralytic in an hour, removing the tubes within the hour.

Well, I am back from lunch with Tim's dad. They were giving him some fluids before I left to see if his heart rate would drop a little. (It's in the 180s.) It hasn't so they are going to be lifting the paralytic shortly. I was speaking to Tim's mother's girlfriend about the medication Charlie is on, and I was wrong. He is on ativan, methadone, and morphine right now. The plan in case his body doesn't respond well to lifting the paralytic is to up all of those meds. I didn't realize he was currently on the ativan and methadone.
To further discuss the ribbon idea, I know that red ribbons are for AIDS, but they are also for quite a few other things. My mother and I were discussing possibly shaping them into hearts or gluing little hearts on them. Again, while I was speaking to Tim's mother's girlfriend, she informed me the West End Grill of New Bedford has offered their restaurant space for a benefit to raise awareness and money for Charlie. Perhaps we could give out the ribbons at the benefit. I will definitely figure something out. I am debating on whether I want to have the benefit before Charlie gets out of the hospital because afterwards, he will be recovering still, and I don't want to add stress on his little heart even after he is discharged from the hospital. (His heart won't be functioning 100% for quite some time.) I will let you all know when I know.
They lifted his paralytic. Now it is a waiting game!
Charles has received his first donation from Pepere and Gramma Lou. <3 Thank you guys so much!
Well, it's been a little, and he still isn't up, but I just went and donated blood. While Charlie was in surgery he needed a blood transfusion so I thought it was only right I go an donate blood on his behalf. I absolutely hate needles, but I sucked it up and did it. I mean, there is really no reason I shouldn't have. I'm in a friggin' hospital 24/7. It's right downstairs. Why not? Anyone who comes and visits Charles should donate, if not because it helps four children, and there is a shortage, then because you get free parking. Just saying.
Well, Charlie is initiating breaths, responding to touch (although he is still not opening his eyes), but his heart rate is around 190. I tickled his foot, and he pulled it back. Let's see!!! :D :D :D :D
Okay. I saw him move. :D :D :D :D I am really trying my hardest not to bother him because his heart rate is high. He is initiating some breaths. They upped his dopamine (although they were supposed to wean him off of it) but they are planning on lowering the dopamine and milrinone to lower his heart rate but to keep his blood pressure at a normal rate. As long as his O2 levels are okay, I believe they plan on keeping him off of the paralytic. I honestly feel they will put him back on the paralytic by morning time. It seems he is having a little trouble being off of it. We shall see.
They gave him a dose of the paralytic (but didn't put him back of the paralytic drip). They are hoping that by the time the paralytic wears off, his sedation will be enough to keep his heart rate at a good place as well as his blood pressure. He is getting methadone and ativan every two hours and is on a morphine drip so let's pray he doesn't need to go back on the paralytic drip. I am going to head down to my sleep space and shower and chill out for the night. As guilty as I feel, I need to get out of this room. I haven't even been outside today. (Please don't lecture me about how I need to get out and whatnot. It honestly goes in one ear and right out the other.) I need to go down to my sleep space and play some music and just chill out for a little. My past week has been living in an ICU room. I need to change my scenery for a few hours. I'll update afterwards.

Wednesday, March 21, 2012

Children's Hospital Boston

I just wanted to create a separate post for to thank Charles's pediatrician, Dr. Katherine Frias of Southcoast Primary Care in Dartmouth, MA, and to thank the surgical staff, the doctors, nurses, and everyone I've come to meet while at Children's Hospital especially Dr. Chris Baird, Christina Ronai, and Charlie's nurses, Maryann, Heather, Mike, and Karen. They have all helped in one way or another to save my son's life, to help care for him while he is re-cooperating, and to ensure both he and his family are treated exceptionally. They really explain everything to you, talk to  you, offer advice or a simple shoulder to cry on. I am flabbergasted at how AMAZING this hospital and its staff are, honestly. I owe my life to them. In a matter of six hours, my son was diagnosed. In a matter of three days, his heart defect was corrected. All this after four weeks of struggling to find out what was wrong with him, it is truly a miracle. Thank you so much. Words can't describe the amount of gratitude I have.

Day Two Post Op

Well, I am all caught up on this blog now. I explained his story a bit. (I'm sure I forgot a few details, but bear with me.) I explained Day One of Post Op in Charlie's Story. Here I am at 7:30am. I've been awake since 4am. I am a bit scared since the nurse told me they seemed to have a bit of a problem with Charlie's drips this morning, and his blood pressure went wild for a little. During that time, he broke through the paralytic and started breathing on his own again, but once the drips were set, she gave him some more of the paralytic to stop him from taking over his breathing. I am currently waiting for the attending doctors and nurses come around for rounds. (Yes, I sit right there with them and listen in and ask questions. This is my kid we're talking about here. I think I should be aware of what's going on and our game plan.) As far as I know, he is going for a chest x-ray, and they are going to put in a feeding tube through his nose. It's possible they'll be removing the line suctioning his stomach. He was also supposed to be removed from the paralytic again, but because of the problem with his drips this morning, I'm not sure they will be waking him. I believe they may be removing the other chest tube today as well. We shall see! I am getting restless. I just want to be able to hold him and kiss him and see his eyes and smile. I cannot wait until this is over. I don't care how much hell this boy raises. I will be grateful that he is alive. I am probably going to speak with the nurse to see if she knows what's going on, wait for rounds, then wake Tim and get breakfast in the cafeteria. It will be nice not to eat alone. Addison will be coming up today so I can see her. :) I am excited about that. I will update in a little.

Well, I just spoke to the fellow. She said they had a problem with the IV that is in his jugular. Apparently, it had a kink in it so his drip wasn't effectively getting to him so his blood pressure was going up and down. He started coming off the paralytic (not waking up or moving or anything but beginning to come off it) and began breathing on his own. She sorted it out as best she could and paralyzed him again. They are thinking about moving the medicines into the line that is in his chest this way when they lift the paralytic, he can't mess with the IV. They are also going to send him for an echocardiogram and see how and if his heart has improved yet. Then they may lift the paralytic today. He has a feeding tube now. :) I'm going to get some breakfast.

Well, the baby has a fever. Yay. -__- His WBC count is elevated, and they are getting some nasty yellow crap out of his breathing tube so it's possible he has an infection. He is very warm to the touch. His heart rate is pretty high too. It's in the 180s. I have a knot in my stomach. I didn't even think about him getting an infection because they said the chance of one is VERY low - yeah, apparently not that low. My poor baby. Well, until rounds.

I'm attempting to get some pictures of Charlie up here. They're doing his echocardiogram right now.

Well, they're not lifting his paralytic today. His heart function isn't greatly approved which is typical of recovering ALCAPA kids. They will be upping his medication to help his heart contract more. They ar also going to start him on a variety of antibiotics. No feeding tube today, just IV nutrition, but his feeding tube will stay in his nose. I knew they wouldn't be waking him today because of his fever and the erratic blood pressure this morning. It sucks, but this is the best thing for him right now. There won't be more to update today I'd imagine. I will probably write some random postings later about thoughts and feelings and trying to make sense of everything, but until then, I'm going to try to get some pictures on here for everyone.

Well, I got the pictures obviously. I just want to say it is a little difficult for me to share this with everyone because I feel a little uncomfortable sharing these pictures with people, but I feel it is a good part of coping with this all.

My little boy <3

Charlie's meds were moved from the IV in his jugular to the line in his chest this way when they lift the paralytic, he doesn't screw with the line and mess with his meds. They are hoping to lift the paralytic tomorrow, but it will all depend on his heart function. I assumed we caught the defect before he went into complete heart failure, but apparently he was a lot worse than what I assumed. His liver hadn't started to fail, but his heart was pretty sick. (Most kids are already in complete heart failure or CHF and have some liver failure by the time they are diagnosed with ALCAPA.) Charlie's older sister, Addison came to visit him today. She was very excited to see Mommy and Daddy and Charlie. She even kept her mask on like a big girl so she didn't spread any germs to him.
"I want to talk to him for a minute." She kept saying. lol :) 

She went home with Daddy. She really needs the stability of at least having one parent with her. This is a crazy time for our whole family, and I don't want her world to be turned completely upside down. Charlie's great-grandfather, (the one he is named after) came to visit for the first time today. It was very hard for him to see Charlie like that, but I was very thankful he came up. He is like a grandfather to me so I must admit, I was a little upset when he didn't come up initially, but I completely understand his reasons. Charlie's grandmother's girlfriend also came to visit. She has been very supportive and proactive about his affliction. It's nice to have so much support in a time like this. It is still really difficult to fully cope and know how to deal with everything. It's really overwhelming. You know, writing this blog is more for Charles and I than anyone else. (No offense.) It's to share his story, his strength, and his will to live with everyone, and it's a way for me to attempt to deal with this. I was pretty saddened that I missed the support group today for parents of children with heart problems, but I was spending time with Addison. I feel I don't really have the time to talk to anyone about how I am feeling. Everyone keeps talking about how strong I am being, but truth is,  I haven't found the right person or place or time to breakdown yet. Just today, Grampa, Trace, and I were talking and drinking our coffees, and out of left field, I found myself fighting not to cry. Nothing was said or done to trigger it, but I was just close to crying. I can't explain it. Maybe I just need to talk to someone who knows what it's like to be in my shoes - almost lose a child, see your infant go through heart failure, open heart surgery, be paralyzed, and to know there is nothing you can do to make them better. I understand everyone is available for me to talk to, and they would like to help, but it's just very hard to describe what I am going through unless you have been there yourself. I really wish that Timithy would discuss how he feels with me. (He has always been sort of emotionally disconnected though.) It would help to feel like he is hurting just as badly as I am. It's amazing how alone you can feel even when there are so many people helping. For whatever reason, I can recall talking to my physician and being asked, "Has anything life-changing happened to you in the past so-and-so months?" At the time, the question made me laugh. It's like, why would they ask that? I know now that it's because when you are hit with something drastically life-altering, you are just in complete shock. It STILL amazes me that it's only been four days since he's been diagnosed, and in that time, he has gone through major heart surgery. (I know I am jumping from topic to topic, but I am just trying to get my thoughts out here, and they're pretty scattered. I've been up for about 15 hours right now. Bear with me.) I have been really on edge lately, with good reason given the stress I've been under, but I mean, I see these girls on Facebook who are complaining about stupid shit; I see these moms who don't deserve their child(ren) in the least, and I just want to smack them. You have no idea what pain is, what sadness is, and how lucky you are until your child is almost taken away from you, and you know what? I have no idea how much pain and sorrow comes along with losing a child so I am grateful for what I have. I have a new outlook on things.  I'm sure I sound a bit silly and am not making tons of sense so I am going to give my brain a rest for now. I may write more later on tonight. Let's see how the night goes. Moment by moment, these days.

Charlie's Story

Well, I am going to try to summarize Charles's story. (I refer to him as many different things. Bear with me.) Four weeks ago, Charlie began to show signs of a common cold - a cough, a runny nose, decreased appetite. (And boy, could he suck back a bottle!) After a week, I took him and his sister, who was just as germy, to their pediatrician, Dr. Dehner. Both children were examined, and although both had the same cold symptoms, Dr. Dehner seemed more concerned with Addison since she had a history of ear infections and of course ended up with double ear infections. He told me Charles sounded fine, just a little stuffy. He told me saline spray and a humidifier. A week later, (February 22), Charlie still sounded bad. As a matter of fact, he sounded worse than before. As his grandmother would explain it, "he sounded like an 80 year-old man who had been smoking for 90 years." I brought him to St. Luke's in New Bedford, and around 11pm that night, he was being admitted to the Lumbar unit. They began albuterol treatments every four hours. By morning, he was discharged and sent home with a nebulizer so I could continue the albuterol treatments for two more weeks.
Charles went to his two month check-up. Still, he sounded wheezy and asthmatic. Again, Dr. Dehner didn't seem concerned. He told me to continue the albuterol. A few days later, I brought Charles back to the pediatrician's office. Dr. Dehner was on vacation so Charlie saw Dr. Katherine Frias. After listening to his chest, monitoring his oxygen levels,  respiration rate, and heart rate, she decided to give him an albuterol treatment and see how he sounded afterwards. Still, he sounded crappy, for lack of a better word, so she decided to admit him overnight again in the Lumbar unit at St. Luke's. This time, he was constantly monitored, was under an oxygen tent, and was given albuterol every four hours and started on oral prednisone (another steroid). The next morning, he started to sound better. The oral pred had made his lungs sound a bit clearer and seemed to temporarily stop his symptoms. She prescribed a five day supply of oral pred for home to be taken along with the albuterol.
After the five days, Charles was brought back to see Dr. Frias. (While he was in the hospital the second time, I switched his pediatrician to Dr. Frias because I was so happy with how she handled things.) She decided to start him on Pulmicort, a preventative steroid, in addition to (of course) the damn albuterol. Charlie had been on the inhaled steroid cocktail for four days before he suddenly stopped eating.
The thing you have to understand about my peanut is that he is like his daddy. He likes to eat....a lot. :) He was on 6ozs every four hours before he got sick, and the doctors would actually complain that he was eating too much. (Little did they know he was also on cereal and jar food! I was going through a can of formula in two days. I had to stop breastfeeding because I couldn't produce enough milk to keep up with him, and he ended up eating more and more formula.) After about two weeks of being sick, he had gone from 6ozs to about 3-4 ozs every 3-4 hours. March 16, he began to eat about 1oz and turn away from the bottle. He would get fussy which was NOT normal for him.
Another thing you have to understand about Charlie - when he was born, Tim and I were sure we were being rewarded with an amazingly quiet, good baby because Addison had been SUCH a handful with her colic, severe acid reflux, chronic ear infections requiring tubes in her ears. Charles was NOT fussy so when he became inconsolable, it was highly unusual.
That night, Charlie had more coughing fits than normal, and they sounded worse than ever. That morning, I gave him his nebulizer treatment, attempted to feed him, and when he refused, called the on-call pedi. They told me to go straight to the hospital. At 7:30am, Charlie, his grandmother, and I arrived at St. Luke's and seen promptly. They gave him a dose of oral pred and the ^#*!ing albuterol. The on-call pediatrician suggested he be admitted a third time to the Lumbar unit, but they called Dr. Frias who requested he be sent to Children's Hospital in Boston.

Around 10:30, Charlie and I loaded up and were transported to CHB via ambulance. We arrived in the emergency room, and I was amazed at how fast we were seen. Within 30 minutes, a doctor came to talk to us, and we were sent for a chest x-ray. A while after that, they came in our room to perform an EKG. A bit after that, we net with a cardiologist named Christina Ronai who performed a second EKG, She spoke briefly about the possibility of a valve defect but blew it off because of its rarity. After the second EKG, Dr. Ronai requested an echocardiogram. About halfway through, Dr. Ronai asked where Tim was. (He had arrived after the first EKG. At that point, he was moving the car from one garage to the hospital's garage.) When he came upstairs she took us to a private room where she gave us the news about their discovery. The chest x-ray showed an enlarged heart. That lead them to perform the first EKG where they found some abnormalities. To be certain, they performed it again to see if they got the same abnormalities - and they did. The results of those tests made her believe it could possibly be ALCAPA so she requested the ECG, and in the first ten minutes of the ECG, they diagnosed it. She explained to us what exactly it is and what would need to be done.
ALCAPA, or anomalous left coronary artery from the pulmonary artery, is a very rare heart defect affecting 1 in every 300,000. It occurs when the left coronary artery is attached to the pulmonary artery (the artery that brings blood to the lungs) instead of the aorta (the valve that brings blood to the heart). The only way to treat ALCAPA is open heart surgery to take the coronary artery and attach it to the aorta and repair the pulmonary artery. The survival rate, if untreated, is less than 10%. The surgery usually corrects ALCAPA, but many months of treatment with various medications are still necessary. Eventually, children who were once afflicted with ALCAPA go on to lead normal lives.
Immediately, I called my dad and broke down to him. In a matter of a day, I went from thinking my two month old had whooping cough or asthma to finding out he has this incredibly rare heart defect and would require open heart surgery, a month or so of hospitalization, and more months of medical treatment and follow-ups with cardiologists. I called our immediate family and returned to the room where Charlie was laying on the stretcher quietly. I  cannot explain it, but I just held him in my arms and looked into his eyes, tears pouring out, and there he was - just staring lovingly at me with those gorgeous blue eyes, and all I could do was feel sorry that he had to go through this, feel angry that it was happening to him, feel so overwhelmed. They moved us to the CICU (cardiac intensive care unit) where right off the bat, a team of cardiologists and nurses stood in our room all spitting out information and asking questions, and there stood Tim and I, still in complete shock, staring at our baby boy.
I don't want to say that you look at him differently after this, but believe me - you do.
That night, I slept in Charles's room while Timithy slept at his father's house. Charlie was started on lasiks (diuretics used in for heart patients) and a dietary restriction of 2ozs every 2-3 hours because he was fed about 3 & 1/2 ozs and vomitted it all over myself, his blanket, and the floor. It was really hard to sleep that night, but I managed to get some sleep.
The next day was Sunday, March 18. It was to be a day of rest since he had been scheduled for open heart surgery the next day. My dad and sister, Brandy, came to visit as well as Tim's dad. Tim and I met with the anesthesiologist and signed consent forms. I briefly met with his surgeon, Dr. Chris Baird, who had explained that while looking through the ECG images the ER took, he found a hole in Charles's heart in addition to the ALCAPA. This poor child couldn't fucking win. That night, Tim and I shared a twin sized mattress in one of the rooms in the parent sleep quarters. It was the first time in years we slept without waking up with at least one of the kids, and it was a restless night, not only because we are two big people attempting to sleep on a twin sized mattress or that it was FREEZING in the room; it was the fact we knew in the morning our infant son would be cut open and have a surgeon cutting pieces of his heart! You can say it as many times as you would like - I know CHB is the best place in the world to be for things like this, but it is still an imcomprehensible concept. It just makes you feel completely powerless to know that the thing that could save his life can possibly kill him, but it is what NEEDS to be done, and that is an awful feeling.

We woke up about 5AM that morning, cleaned up our things, and headed up to the CICU. The nurse told us "Grampa" was there in the waiting room. Since my dad had said the day before he had to work, we assumed it was Tim's dad, but it wasn't. My father explained he couldn't sleep and just could not go to work. He had to be there for Charlie, and Tim and me, and I was relieved and comforted knowing he was. A research nurse approached us and informed us of an ongoing study that was trying to see the benefits of insulin on children who are healing from cardiac surgery. He explained that after such surgery, blood sugar often goes up so treating it with insulin in adults has shown a lower risk of infection and a decrease in hospital stay time. The study had been going on for 3 and 1/2 years and was wrapping up in May of this year. They were forty patients short of the total needed. We agreed to include Charlie and signed consent forms. As the morning went on, we would briefly pop in and out of Charlie's room. Although I wanted to spend every second by his bedside, his heartrate had climbed quite a bit since being admitted. A normal heart rate for infants 0-3 months is anywhere from 100 BPM - 150 BPM. Charles's was in the 180s to 220s. He was in heart failure so we let him rest as much as we could.
Charlie watching Sesame Street before surge

 I was trying to get everything I needed to get done, done this way after his surgery, I could focus on Charles and his healing process so I called Salter School to let them know I couldn't attend the medical assistant program I had started the week earlier. I called PACE to let them know I would not be attending school anymore. I called daycare to let them know that Charlie would not be in daycare anymore, but Addison would be there until April 2nd. I called my DTA worker to see if it was possible for me to get a referral for daycare to keep Addison there while I care for Charlie and Tim works. (Needless to say, I had to leave a message since DTA NEVER picks up. -____-) Meanwhile, our families were showing up to support us. My mother and her husband arrived. My other sister, Teshia, showed up at the same time as Tim's mother and grandmother. Since we were unsure if we'd need someone to get Addison from daycare back in New Bedford, Trace (Tim's mother's girlfriend) stayed home in case. We all took turns spending a little time with him. (Teshia got to hold him since it was her birthday and about the third time she has seen him in his life, but we asked that no one else hold him since we really wanted to keep him heart rate down.) Our nurse, Karen, took me to see a post-op baby so I wouldn't feel too overwhelmed the first time I saw Charlie. I'll tell you, despite the fact this was not my child, it was still hard seeing this little girl hooked to tubes - and she wasn't even hooked to as many machines as they anticipated Charlie would be! I returned to the family waiting room where everyone was sitting. Around 1pm, they called Tim and I to walk with Charlie and the surgical team to the operating room. We walked to the hallway of the surgery floor and were told to give kisses to him since he'd be going to the OR while we met with the nurse liason. It was so incredibly difficult, but I leaned over and kissed him. Since my little fat boy was so hungry, (he hadn't eaten since 2am that morning), he tried to eat my face and licked me. It made me laugh, and he smiled. As they wheeled him off, Tim grabbed my hand, and we walked in the opposite direction. We met the nurse liason who took my cell phone number and explained she'd be calling every 90 minutes with an update for me. We went back to our family waiting room.
While waiting for news, there isn't much to do to keep your mind off of what is going on. We ate, went for walks, sat on the computer, talked, watched TV, but we watched the clock likes hawks, waiting for the next update.  At 2:30, the surgery began. (It took an hour and a half to prep him.) At 3:10, Charlie was put on bypass, and the valve repairs began. 4:45, they called to let us know his valves we repaired. An ECG was being performed, and then they would close him up. At 5:30, we were called and told he was off bypass and that we should come to the surgery waiting room five floors down because the surgeon would be out in 20 minutes to talk to us. We sat in that room for an hour and a half with no news before they told us to return to our family waiting room where the surgeon would meet us. At 8pm, the surgeon finally came to speak to Tim and I in the consult room.

"Your baby is okay." was the first thing he said - the best words to hear as we stepped into the room to sit. He explained they moved the coronary artery to the aorta and repaired the pulmonary and sewed the hole in his heart. He also said Charles's heart function was already improving, something we thought would take weeks to start, that he was NOT on ECMO (a machine that functions as the patient's heart) which is something that we thought was most likely going to happen. His chest was CLOSED, also another feat since we assumed it'd need to stay open. He was very confident that Charlie would be doing well since his surgery was such a success. Tim and I were so overjoyed hearing this news. Instantly, tears were streaming down my face. I was smiling so big. We shook hands with the surgeon, and I thanked him repeatedly. We ran into the family room and shared the amazing news. Everyone began hugging and crying. It was THE happiest moment in my life. My son was given a second chance at life. He was fighting his hardest and kicking major ass. We were told it'd be a little before we could see him so we all went to grab something to eat. (My mother and her husband had left so it was Tim, his mother, his mother's girlfriend, his grandmother, my father, and I.) We went to the food court a block away, and although I was so hungry, I couldn't bring myself to eat. I was on a high. I was so happy to know what was going on, to know the hardest part of it was over. He was doing well considering what he had just gone through. We all came back to the CICU, and Tim and I were obviously the first to go back and see him. For the first time during this whole experience, Tim broke down. Charlie had an IV in his head, a tube in his nose to suction his stomach contents, a breathing tube in his mouth and down his throat connected to a ventilator,  a catheter in his jugular, two chest tubes (one in the peritoneum and on in the mediatinum) both tubes relieving the cavities of fluid, two lines connected to his heart, an "A" line in his wrist, a line in his femoral artery, an IV in his foot, a catheter in his penis, and a probe in his bum. He was on a paralytic, morphine, dopamine, epinephrine, heparin, insulin, nitroglycerin. It's scary to see any adult like that, scarier to see a child or infant like that, but when it's your own child, it's downright frightening. I couldn't even cry. I was still elated from knowing how well his surgery went.

Right after surgery

Tim quickly returned to the waiting room to let someone else go back and see him. Everyone quickly peeked in on him, and we all returned to the family room. Tim, who previously stated he wanted to go back to work the day after Charlie's surgery, quickly decided he wanted to take a week or so off. (It hit him hard to see the baby the way he looked.) We all chatted and decided it was late. My dad left. The rest of us grabbed my things and walked to the parent sleep quarters. They helped me get settled and then left for the night. I went on Facebook and updated everyone as I had been doing the whole day, but I quickly got exhausted and laid down. My mother and I spoke on the phone for a little, and after she and I hung up, my father and I spoke for a little. Around 11pm, I was asleep.

Day One Post Op:

At 12am, my phone went off. It was Charlie's nurses. Apparently while emptying one of the balloons attached to his chest tubes, the nurse was sprayed in the face with the bloody fluid. They needed my permission to test Charles for transmittable diseases since he acquired a blood transfusion during surgery, and it was standard protocol. Obviously, I had no objections and attempted to fall back asleep. 
I woke up again around 5am, and I began to get ready for the day. At about 8am, they stopped Charlie's paralytic and discussed the possibility of removing his breathing tube the following day. I was so happy. He was making so much progress so quickly. They also took him off of the nitroglycerin and were removing one of the heart lines and a chest tube. Patiently I sat, updating family, getting school loans figured out, leaving a message with Charles's pediatrician to call me. The nurse mentioned Charlie had started moving slightly so I jumped up and ran to his bedside, and I caught a glimpse of his eyes. I was so happy! He closed them and fell back asleep, sporadically kicking his feet and flailing his arms. The ventilator showed that Charlie was breathing on his own with a little help from the machine. They seemed really confident in his progress so far so when his heart rate started climbing as well as his temperature, and his blood pressure began dropping, they decided to play it safe and put him back on the paralytic until the next morning if he was doing okay. At first, i was upset because he seemed to be making so much progress so fast that it was keeping me very hopeful, and suddenly it seemed that hope was gone. I could hear the baby next door crying, and it pained me to know that I wouldn't be hearing him cry soon. I spoke with the nurses though and realized it was okay. He had undergone major heart surgery the day before, and he was entitled to be tired from a few hours of breathing on his own. He was entitled to a good rest. I would have to learn to be patient.

Charlie the day after surgery with his gown (that I plan on stealing
There was not much excitement throughout the rest of the night. He was taken off the insulin since his "A" line was starting to become unstable from all the blood sugar testing. He was pulled from the study. The IV from his head was removed since it no longer worked. He was put back on the cooling blanket to maintain his body temp. (He was taken off it when they removed his paralytic that morning.) It was, again, time to rest until the next day. I showered and fell asleep around 11pm, looking forward to tomorrow.