One step forward....two steps back

Yesterday I posted about how well Lucas was doing and how he was playing and being Lucas again. Well, today he did the opposite! He had been fussy this morning and super pukey- he puked at least 3 times before noon and it was just nasty, green, stomach juices only puke. Each time he would puke, they would turn his feeding machine off for half an hour to let him rest and seemed to do really well during those half hour periods. They would turn it back on and he would puke again shortly after that so they turned his feeds- which had been at 30 ml/hr- down to 10 ml/hr to see if that would help.
He didn't puke anymore after that but was still so incredibly fussy. We gave him tylenol with codene and even morphine but neither of those phased him. It got so bad that after 3+ hours of nonstop crying and writing in pain, I had to leave. I couldn't sit there and watch my baby hurt that much and be able to do nothing about it. I had a breakdown and then started to feel a little better, but I still couldn't go into his room because he was still crying. They finally agreed to just turn the feeding pump off for overnight to give his bowels a break- after all, he was getting more food through there a day then he was taking by mouth before he even had surgery. His cardiologist and the surgeon both agreed that the dieticians were feeding him way too much through the pump- they had just wanted it in to boost what he ate a day, and to ensure he got enough formula to stay hydrated and gain weight at a good level.Our goal going in was to just do feeds overnght, but the dieticians were insistant on getting him to full feeds through the pump and doing them all day long. His little body can't handle all of that. Now that those two are aware of what has been going on, I think it's about to change for the better. Dr. Engum told us to expect several more days here as we figure out a good balance with his feeds. He would rather we stayed a few extra days as opposed to going home on eggshells--we are both A-OK with that!
He was also constipated today and was trying his hardest to resolve that issue which caused him a lot of pain as well. He finally started the process of going shortly before we left for the evening. And to make the day all better, I wen to change his second poopy diaper and realized his leg was a tad swollen. When the nurses took the cast off it, it was so big they could barely cut his name band off. His IV had gone bad :( but by this point he was just so exhausted he laid in the bed all lifeless and just looked around as people were doing things.
When we left for the evening, he was snuggled up with granny and his heating pack snoozing away. I hope tomorrow is a better day <3

Day 3, Day Nurse= awesome, Night Nurse= I presume is awesome- I've never met her before tonight, Pain/other Issues= FAIL! ...but at least we came out at the end of the day and he was still in his room and had to have nothing more then a new IV put in <3

J tube surgery

Does this kid look like he just had surgery?!

Lucas went in to have a j tube placed yesterday- as I'm sure you recall, I was having a panic attack the night before- my normal :)
I got about an hours worth of sleep then I was up and ready to go. We were up an hour before we even had to be, so we were ready earlier and quite bored. Lucas was getting sleepy so we decided to come to the hospital early so that we wouldn't have to wake him up to put him in the car and get him back out. We got here, registration was quick and painless- we pre-registered on Tuesday :). We went back to day surgery waiting and waited...and waited...and waited. We didn't really wait that long. Surgery was scheduled for 12:30 and they took him about 12:10, but my morning was dragging so bad because I was so anxious to just get it over with. He fell asleep about 5 minutes before they took him back and didn't even budge when I handed him over. That helped since he didn't scream bloody murder when I gave him to someone he didn't know.
We went up to the waiting room and my mom and dad got there about 10 minutes later. The surgery took about an hour and a half, but since my day was dragging, it felt like it took about 5 hours. The receptionest finally came and told us we could go back to see him and I was excited- yet nervous. Lucas isn't very friendly when waking up from the anestesia, and it breaks my heart to see him in that condition. He wasn't that bad, though. A little grumpy and cried out a few times, but he was mostly contained. The surgeon said everything went well. I had asked before he went back for them to look at his frenulum uner his tongue to see if that needed cut since he was already going to be back there, and he said they did cut it. Now I wonder if that's what was causing him to not eat much this whole time...
We didn't spend long in the recovery room- which is good...that room was a different experience from what I am used to. The previous surgeries he went straight to PICU, so I had never seen that room. I gotta say, I'm ok with that. It reminds me of what I see a lot of hospital pictures like- a lot of people in one giant room of people seperated by only curtains.
Once we got to the heart center, things calmed down pretty quickly. I held him pretty much nonstop- and didn't mind because my baby was sore and didn't know what was going on. The only downside is that we had a quite uncomfy rocking chair....my butt was numb, lol.
Feeds were to start at 6 pm. We were told they were on their way up from the pharmacy, so we decided to leave Lucas with granny and go down for some dinner. Once we got back- around 7, we learned that he screamed the entire time we were gone- even though he was playing when we left- and that he still hadn't had a bottle. I asked our nurse and she said it was going to be about ten more minutes. Around 7:40, I asked our night nurse and they said about 10 more minutes again. I waited the ten minutes because I understand how things work, sometimes. Once that ten was up, I talked to the charge nurse. I didn't want to go crazy on our night nurse because they hadn't been around the whole time, and honestly, I hate to put my foot down. The charge nurse called the pharmacy to see what was up. They had it made- but was waiting to bring it in the next medicine rounds they did. We got it much sooner, though, and my big boy who had just gone through surgery ate 4 ounces! He barely ate that in a sitting at home!
Andy and I left not long after that to go for the night. My mom said he did  really well through the night and woke up only a few times to eat and be held.
So far today he has been a champ! We got here and he was EAGER for me to pick him up. I love when he's so happy to see me after having been gone for a while. I held him like I hold him at home- he didn't mind that either. He let me lay him down to put a onesie on him- we have decided we have to keep him dressed all of the time- he has curious fingers, and although we are learning how to get something in to at least keep the hole open, I prefer to not have to use that knowledge...ever! We even got to go for a walk around the heart center! Lucas loves to go for walks- he likes the change of pace...and he likes flirting- with EVERYONE! He did great- after mommy  and daddy finally figured out how to put everything in the stroller so we wouldn't have to push the IV cart at the same time.
We came back and he went to sleep shortly after.
He is doing so good. I could just go on and on for days about how impressed I am. To think he had surgery just 24 hours ago and is already sitting, standing, and playing is just beyong my imagination of how good I had hoped he would do. Now mommy and daddy just have to learn to trust that we can do this and we'll be good to go!!

I don't think it ever gets better...

Here I am. It's 3:00 in the morning. I should be in bed resting as much as I can before the long day ahead of me, but I can't. I'm wide awake and nothing is helping. I just have this "mommy intuition" that something is going to go wrong and it's eating me up. I had this same feeling the night before his BT Shunt....the night before the afternoon they were so close to putting my baby on life support...the night before I thought we lost him when I heard the words, "you can go to the bathroom after you go back to day surgery. They need to talk to you." Call me crazy, but I have a feeling.
Andy says it's just because it's a surgery and I've psyched myself out- to which I have replied time and again that I slept like a rock the night before he had his pacemaker placed, and I wasn't even tired that night.
I HATE THIS FEELING! I'm so nauseous that I am barely keeping a drink down at this point. I can only hope, pray, wish, and positive vibe myself through this. I don't want to be a heart mommy anymore, today. I want to go home, snuggle up in my much less comfortable bed with my tv, my fan, and the vibration of the fish airerator thingy to keep me company as I drift off to sleep.

When Ashley met Andy Part 7 (to catch up to today!)

When I left off, I promised the next episode would include all of the major holiday's so here goes.
In October, I decided to change his regular doctor. I loved the doctor we had, but he was old school and did things that way- which would be ok in most circumstances, but not in Lucas's. The fact that we had to come for his first open heart surgery before anyone even began to seem concerned about his weight. His doctor just kept saying he was gaining plenty and not to worry. We went with a pediatrician that his cardiology team actually recommened- and I am so glad that we did. We went there on 27 calorie formula, switched to 30 calorie formula in December, and now we are getting a J-tube placed tomorrow.
The atmosphere there is also much better- more...doctory, I guess you could say.
For Halloween, he dressed up as a dionosaur- it was adorable!

His first Thanksgiving was pretty low key- we like things that way. We went to my grandma's and had dinner- he got to try a few things but was sleepy so he slept through a lot of it.

Christmas was also spent at my grandma's- we don't do much with Andy's family because, well, I don't care for a particular member, an she is ALWAYS there- and he played with his older cousin Zane. It was adorable to see them play <3. He opened his presents on daddy's lap and seemed to get bored with it pretty fast....maybe next year!

At his January appointment, his doctor referred him to a behavioral specialest- to see what she thought about his weight issues (he still wasn't gaining much on 30 calorie formula). We went to see her, and she was thrilled with his development- other then the weight gain. She said there was nothing physical hold him back, so she referred us to a speech therapist. We had that appointment on the same day as his next cardiologist appointment. His cardiologist said he was doing decent heart wise, and was going to continue to wait on his next surgery, but was going to go ahead and refer us to someone to get a gtube placed since he still wasn't gaining the appropriate amount of weight. We met that doctor two weeks later, and with his help, we decided to place a j tube- his pacemaker is where they would put the gtube and it seemed like a little bit better a chance of speedy recovery if they didn't have to move that around, too. So, he goes in tomorrow morning to have that placed. The doctor said it would probably be a three day stay- max, but we'll see....it was only supposed to be a 5-7 day stay last time, lol. I am uber nervous and just can't shake the feeling that something is going to go wrong again and we'll be here for a month again (not that I mind, he is in great hands after all :)).

Now we are all caught up to today, so it will start being more in depth with daily life :) 

When Ashley met Andy Pt 6 (More like, when Lucas had Open Heart Surgery)

Before I begin, I must say that some things will be out of order...I didn't write things down as they went, so I remember it all, but maybe not in exact order :)

Surgery was scheduled for August 30. We were told to expect a one week stay, tops. My mom went with me to take him to pre-op the day before so Andy could work. He and my dad came down that evening. Pre-op wasn't too bad- other then the having to use his head vein to get blood :( It was a pretty low key day. We were done with everything we had to do by 12, but were stuck waiting around until 5 for the surgeon to come in and go over the last minute things with us. I didn't sleep a wink that night. My nerves were awful! The next morning came and we went over to wait in day surgery. We played and giggled until it was time to take him back. I had a small break down- scared my baby wasn't going to make it through. We went up to wait in the waiting area. My mom finally convinced me to eat something and brought me some McDonald's back since I refused to leave the waiting area. After the second update, I finally felt comfortable enough to use the restroom. I went and asked the receptionist where the restroom was and she told me, but said I needed to go down to surgery first. I started freaking out! What was wrong with my baby? Why did I have to go down there? The knot was huge in my stomach. I couldn't do it myself so I went to grab Andy. I wouldn't let my mom or dad come down because I didn't want them there at the  time. We went down and waited...and waited and waited. Finally the RN who does the rounds during surgery to update all families came in to talk to us. She told us that once he was in position and about to be cut on, his sats dropped to the low 30's. The surgeon had decided to just go in through his front to get it done much faster. She said that they had the heart/lung machine ready but he finally started resatting nicely. He was ok, but he was going to look a lot worse then we were prepared for. I cried for about 5 minutes but then just told myself to be happy that he was alive and that we had such a great surgeon who took care of my little sunshine.
The surgeon came in about 20 minutes later to tell us how it went. I think he liked the challenge :)
We went to the PICU waiting area and waited for the nurses to come get us to take us back to see him. I wasn't prepared for what I saw. She tried to prepare us, but nothing can prepare you to see your child helpless, unconscious, with tubes and wires ALL over them. I did cry again *I am a big sob fest, after all :)* but his toes were pink!!!!! Not pinkish or gray...or blue, but PINK!! One of the best sites <3.
They did administer sedatives and paralytics to keep him still for about 20 hours after because he was trying to pull his breathing tube out. The next day, they started letting him wake up a little. He did really well and they decided to take his breathing tube out that evening!
I remember the respiratory team coming in to look at him before doing it- I asked if they wanted us to leave. They told me that we didn't have to, so I sat in the corner and watched. I regret that.
They pulled it out with no issues, but then he didn't breathe........for about a minute. I was freaking out a little- nothing like the team standing around his bed and the lead standing in the door keep asking if there's airway. I thought for sure they would be reintubating him, but nope! Lucas let out a WAIL! PHEW!
The next day we held him. I was so so nervous because he had just had open heart surgery, after all. The nurse handed him to me and it was so sweet. I missed holding my little guy. He seemed even more helpless- he still wasn't eating and he was just wore out, but I wouldn't trade those minutes for anything. Daddy held him to- it was funny to see how nervous he was! We were both just scared to move him for fear of hurting something. Our PICU nurses were the best! I know we weren't the first "scared" parents, but I  felt like we were and they made it seem ok.

Daddy had to go home on Friday- I was sad, but we did get to go up to the heart center that day!! That was an experience, too- they are a lot more relaxed (thankfully) up there. We got settled in and I finally felt like we were going to go home in a few days. This is when we met his- and our- favorite nurse. She listened to us when we told her his art line was causing him a lot of pain and got it taken care of- when everyone just kept saying "ok". While he was recovering, I was feeding him a bottle one night when his heart rate dropped. I freaked out a little, but it went back up. The nurse came in after seeing it and I started feeding him again- same thing happened. I was still worried. The nurse called the PICUPICU doctor....HIGHLY! They did an ekg and then sent us back to the PICU just to keep a closer eye on him overnight. It kept happening all through the rest of the feeding but gradually stopped an hour or so afterwards. I thought we were out of the woods. We went back to the heart center the next day- they have someone watching the telemetry monitors there all of the time, so they can keep an even closer eye on it. It stopped happening for the most part for a day or  two.  A few days went by and surgery cleared him to go home, but they wouldn't send him just yet because he still wasn't eating by mouth. They went as far as teaching us how to do NG just in case. The next weekend, we were set to go home Saturday sometime. I went to bed Friday night all excited.....then went back on Saturday and they said he had a fever overnight so they were running cultures.
The cultures came back positive for an infection so we had a 10-14 day stay ahead of us because they were IV antibiotics- ugh! Looking back, though, I am glad he got that infection. It allowed the cardiologists to see his heart block progress up until around day 10 of the antibiotic round when they said they were going to go ahead and put a pacemaker in because heart block could worsen and cause more issues. Surgery was scheduled for the day after meds were done. He had finally started eating at this point so I thought for sure we were going backwards. I felt SO much better going into this surgery. Pre op was the same, but it was a lot easier this time around- I wasn't nearly as nervous. It took just a couple hours and they told us they were done. We went to PICU and waited until he was all situated in his new room and went back to see him. He looked SO much better this time- no breathing tube, very few wires, and already waking up from anesthesia. His pacemaker looked HUGE in his belly though. They told us to expect that since he was so tiny, but it was a lot bigger then I anticipated. The only setback this time was that they had given him a little too much pain medication and his breathing had slowed down quite a bit overnight, but that was easily fixed by giving him something to reverse the effects. We headed back up to the heart center that afternoon. I wasn't nervous picking him up or holding him this time. He was eating like a champ all by himself with no tube! and we were set to go home in a few days. That Friday couldn't have gotten there any sooner! 23 days in the hospital, 3 PICU stays, countless IV's and x-rays, 2 PICC lines, and 2 surgeries later, we were released. I may have been even more nervous to take him home this time over after leaving NICU. Surgery follow up and his first pacer check was scheduled for 2 weeks later. We got the all clear from his surgeon as well as his pacemaker doctor. YAY! We were doing right!
I know I've forgotten some things, and for this, I am sorry. I regret not writing as we've gone, but that won't happen with the next ones :)
Next episode: Changing his PCP, Lucas's first Halloween, Thanksgiving, and Christmas!