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Tonight is the 3rd night that Mateo has slept without his pacifier. This is a HUGE milestone for us. Mel and I have wanted to get rid of those horrid pacifiers for the last couple of years. We held onto them and let Mateo continue to use them because it was his "comfort thing" and we wanted him to have it during his Fontan heart surgery. We had originally thought the surgery would be two years ago, but it kept getting pushed back, so getting rid of the pacifier had also gotten pushed back.
So while we had good intentions of breaking this pacifier habit long ago, it just never happened. And I KNEW the longer we held onto it, the harder it would be to break Mateo of it. He was a pacifier addict. About a year and a half ago, I started noticing his two front teeth were a little.....well, crooked....so we finally weaned him off the pacifier during the day and he only got to use it when he was in bed. He's a sneaky little thing though and would find opportunity to sneak it into his daily routine at different times. He seemed to be very attached to it.
Mel and I hated that pacifier. Mateo used to have 7 pacifiers that he would sleep with in his crib. Yes....I said SEVEN. They would be all arranged in his crib so that if the one in his mouth fell out, he would have plenty to find in the middle of the night, saving me and Mel a trip to his room to "feel around" for a paci. But by the time Mateo graduated from his crib to his bed, he was down to ONE pacifier. He had chewed holes in all of his other pacifiers and I was refusing to buy him any more. However, that often meant that either Mel or I had to get up at 2am because some little 3 year old was yelling, "My PACI!, My PACI!" because it had fallen out of his mouth while sleeping and he couldn't find it. Yes....gotta love being on the floor in his room at 2am blindly feeling all over the floor, looking for that stupid piece of plastic.....only to realize 10 minutes later it was still lying on my son's chest where it had fallen after slipping out of his mouth. *sigh*
So, imagine my surprise when I came home from grocery shopping one night to have Mel tell me that the pacifier was gone. Now imagine my anxiety and out-right fear that we weren't going to get any sleep because my preschooler is going to go bonkers when he realizes its lost. Only....it wasn't lost. Mel said it was all Mateo's idea. Wait. WHAT?! HOW did that happen?
Mateo was getting ready for bed. Part of his night-time ritual is to feed his fish. Mel was trying to pick out a bedtime story for Mateo while Mateo stood watching his fish eat and chewing on his pacifier. All of a sudden, Mel heard a "CLUNK" in the trash can. He turned around and asked Mateo what he had just thrown away. Mateo answered, in a very unconcerned way, "My paci. I bite it." and then walked to the bathroom to brush his teeth. Apparently, Mateo had chewed a hole in his last pacifier, rendering it useless, and then thrown it away like it was no big deal. Say What?!
At first, I couldn't believe our luck. Mateo is always surprising me. The things that people said would be difficult were turning out to be very easy. Potty-training a boy? Ha. Mateo potty-trained himself....seriously. Breaking a preschooler of using a pacifier that he has been attached to since birth? Apparently, piece of cake. Mateo has always done these "difficult" milestones all on his own. And to know that he had just dumped his beloved pacifier all by himself with no prodding from either myself or Mel was....awesome!
But that night, I hardly slept at all. Sure, Mateo woke up a couple times to use the potty, but that wasn't what kept me awake. That stupid pacifier kept me awake. Seriously. I could not believe that my son had just carelessly tossed away something that was supposed to have meant so much to him. How was he going to survive? He had treated it like it was yesterday's news....like it was worthless! Didn't he know how much that pacifier had seen him through? How could he just toss it and never look back? As these thoughts kept me awake, I realized that Mateo hadn't been the only pacifier addict. I was too! But in a different way. That pacifier is the last thing that Mateo still used that symbolized his "babyhood". I know, I know. Mateo hasn't been a "baby" in the last 2 years, but still.....it kind of kept him MY baby. The fact that he just threw it away without thinking anything of it was significant to me...because my "baby" was all grown up. I missed my baby!
I was disappointed because I had planned a big "getting rid of pacifier" celebration. Yes folks, a celebration. We were going to designate a day (in November) as get-rid-of-pacifier day and then cross off the days together until we got to that day. Then we were going to take Mateo to Build-A-Bear and help him say goodbye by putting the pacifier into one of the bears of his choosing....so he'd always have it but not be able to use it. I looked forward to this entire event because I was helping him move out of babyhood and into preschooler-hood (is that a word?). But he had done it all by himself. And it made me a little sad. I had thought this whole celebration was for Mateo and to help him transition. But Mateo's decision to dump this babyhood friend showed me that this celebration was really for myself and getting ready to say goodbye to my "baby". Apparently, I needed more closure with the pacifier than Mateo did! And once again, this is an example of my son teaching me important life lessons that could not have been learned anywhere else.
Mel and I are beyond frustrated at the moment. We had been home from the hospital for 2 weeks and we thought things were going so well! Mateo was back to his usual happy-go-lucky self, being and doing things that 3 year old boys should be doing. We went to Disney World two nights ago and had a great time as a family. We thought we were pretty much in the clear. We were scheduled to see Mateo's cardiologist on Monday morning to have his effusion checked again. I expected it to be the same as it was a week ago (as in...gone) or possibly have a little fluid back, but not a lot.
But then yesterday, Mateo started breathing a little shallow and grunting, like he couldn't get in a full breath. He was also coughing and holding his chest, like it was uncomfortable. So I worried and called the on-call cardiologist. How these things ALWAYS manage to happen on a weekend or when his regular doctors are on vacation, I have no idea. But that seems to always be the case. The on-call cardiologist told us to give him another dose of his diuretic and if he didn't improve on it, then to bring him into the ER.
Well, 10:30pm found us sitting in the ER at St. Joe's, waiting to have a chest x-ray done. Apparently, the effusion was back and was big and the doctors all wanted us to be admitted to get Mateo started on IV diuretics, which tend to be much stronger than the ones taken by mouth.
They had to place an IV, which of course is never pleasant. We finally arrived in our room at 2:30am. I have to say, that after being at All Children's Hospital in St. Pete (the whole facility is only a year old, so brand-spanking new!), St. Joe's seems really dumpy, old and outdated. Once we got settled into our extremely uncomfortable recliners, we were really wishing we had driven out to St. Pete instead.
Mateo had another chest xray after being given a strong diuretic and it looks as though the effusion is not flushing out. So the next step is a chest tube. The cardiologist wants to put in a pigtail chest tube to drain the fluid off Mateo's lung. He said he thinks its important to move quickly on this because Mateo has the Fontan anatomy now. This means that there is no heart chamber that pumps blood to the lungs. All his blood flows through his lungs by gravity and if this fluid on/around the lung is causing restrictions on that blood flow, it could cause some real complications. So that's the plan. We are having a chest tube put in sometime this morning. Mateo is on a no food/no drink restriction because they will need to give him some strong meds for pain.
We are frustrated because this feels like big steps in the wrong direction. I know its usually 2 steps forward, 1 step back.....but this feels like we're going back to the beginning and my heart hurts for Mateo. I want so badly for him to not have to endure anymore of this. I know he feels so out of control of everything in his little world and it is very hard on him. We are disappointed because we thought we were in the clear and able to move on with life. We had so many fun things planned for Mateo this month, and now I have no idea if we'll be able to do any of it. The doctor said we will be here for 3 days, at the VERY least. The tube needs to be for 3 days, even if it stops draining the first day. They want to try and wean him off IV diuretics and change him to oral diuretics while the tube is still in so they can see if the oral ones will be able to maintain the fluid. So, we are supposed to be here 3-5 days...maybe more. BBBLLLLLAAAAAHHHHH!!!
I am super frustrated because I feel like no one is listening to me. It seems like his card is ALWAYS on vacation when we really need her. I did not want any big decisions made without her because I want it to be HER plan....not a doctor that we don't know. But I agree with the cardiologist that IS here. We talked about it a lot and he got a lot of my uncertainty ironed out. I just wish his regular card was here to second this doctor's opinion!
I have had to start logging and writing down everything that the nurse/doctors/staff do because they apparently cannot be trusted to record it correctly. I left for a couple hours early this morning to get a few things from the house for Mateo. When I got back, it was 5am and Mel said Mateo had had an xray around 4am. That was only 1/2 an hour after being given the stronger diuretic, and I didn't feel they allowed enough time for it to work before making the decision to put in a chest tube. The doctor said the xray was done at 6am...which was a BIG mistake because I was here, at the hospital, IN Mateo's room and NO ONE came and did an xray after I got back from the house. I told him it had been done earlier and Mel told him around 4am. The nurse sat and argued with me that the computer says 6am....I told her I didn't care what the computer said, I KNEW I was in Mateo's room and what did NOT happen while I was there. She brushed me off and told the doctor the xray was done at 6am. I, of course, got upset and angry and had to get "Mama Bear Serious" on her. She's been nicer since then. I am not putting up with any of that anymore. I know my son better than anyone here, I know what I'm talking about and what we're willing to do/not do and I WILL make sure the staff listens. I will not be brushed off or ignored or argued with. WILL NOT. That has happened before in the past and I let it go. Not anymore. Anytime I have had a gut feeling or "mommy instinct" about something, I was right and the doctor was wrong....so I'm taking the reigns!
Will try to keep an updated log of some kind....probably on facebook....just to let everyone know what's happening. For now, we're hanging in there.
