Tuesday, May 22, 2012
Sunday, April 29, 2012
A Bit of Catching Up
Great news! We didn't go back to Riley's before the April 9 cadiology, plastic surgery, general surgery appointment! It was nice being home for two weeks, lol. Although the last few weeks have going by pretty fast and are quite busy since we are getting ready for a surgery.
The general surgery appointment went amazingly. The doctor said his j tube site looks just about as good as it can! That's great news! We don't have to go back to see him until August, or sooner if necessary, for tube changing :)
The plastic surgeon came in and basically called me a liar when I told him the issues we had and what was told to us when we came to the ER a few weeks beforehand. Great news, though, is that his foot looks awesome! It's so good at this point, that we don't even do the whole bandaging regimine most days now. He still gets his daily soak and it gets covered if we go out in public, but it's rarely covered when we are at home.
Cardiology was fun, like usual. We absolutely love our cardiologist and are going to be heartbroken whenever he decides to retire (which I hope is many many years down the road). After telling him everything we've been going through lately, heart wise, he said it was probably time to start thinking about getting his next surgery scheduled- it wasn't a rush kind of thing, but something we should think of. We received a call a few days later to schedule his surgery- their dates were May 4 and June 12. We decided to go with the earlier date, even though his cardiologist said the end of May beginning of June would be ok, because he has been increasingly cyanotic these days. We did, however, confirm that that was ok with his cardiologist just to be sure. So, surgery is slated for Friday with pre-op Thursday- barring any unforseen circumstances.
These last few weeks have flown by, as I stated at the beginning of this post. Lucas has been full of adorable lately! He just does the cutest things to get a reaction out of you and is always so surprised when you do have a reaction. He took his first, unassisted, step this week. It was super wobbly and was only one, but you have!
His weigh in was 14 pounds 11 ounces on April 19! So, we're super hopeful that he will have reached 15 by Thursday's weigh in.
Andy is in the process of getting a new job so we can hopefully have money sometime again. These $20 paychecks are getting quite ridiculous! Hopefully we will hear from them this week. It would be really awesome if it was before we left.
Lucas also had a surprise birthday party on the 19! We thought we were just going to a playdate and this is what we got! He got great toys, and got to eat his first cupcake which, as you can see, he enjoyed....a lot :) It's nice to have friends that truely care since it seems like my "best" one is slipping away.
Later that afternoon, we wen to see my aunt at her office and Lucas fell and got attacked by the carpet shark! *It's a shark, because he fell on the floor and we know he didn't hit anything on the way down.* This lead to his first urgent urgent ER trip. He bled, a lot, for a good 10 minutes. I didn't put him in his seat on the way to the hospital because of how much he was bleeding/screaming. He fell asleep on the way to the hospital and when we got there and the nurse needed to wake him up to assess for a concussion is was nearly impossible- I was scared to death. But, he didn't have a concussion and didn't even require stitches! YAY! He did, however, flirt with the nurse and shared his story :)
That's really about all that has been going on in Tagueland lately. We've been laying pretty low lately- just the way we like it :)
The general surgery appointment went amazingly. The doctor said his j tube site looks just about as good as it can! That's great news! We don't have to go back to see him until August, or sooner if necessary, for tube changing :)
The plastic surgeon came in and basically called me a liar when I told him the issues we had and what was told to us when we came to the ER a few weeks beforehand. Great news, though, is that his foot looks awesome! It's so good at this point, that we don't even do the whole bandaging regimine most days now. He still gets his daily soak and it gets covered if we go out in public, but it's rarely covered when we are at home.
Cardiology was fun, like usual. We absolutely love our cardiologist and are going to be heartbroken whenever he decides to retire (which I hope is many many years down the road). After telling him everything we've been going through lately, heart wise, he said it was probably time to start thinking about getting his next surgery scheduled- it wasn't a rush kind of thing, but something we should think of. We received a call a few days later to schedule his surgery- their dates were May 4 and June 12. We decided to go with the earlier date, even though his cardiologist said the end of May beginning of June would be ok, because he has been increasingly cyanotic these days. We did, however, confirm that that was ok with his cardiologist just to be sure. So, surgery is slated for Friday with pre-op Thursday- barring any unforseen circumstances.
These last few weeks have flown by, as I stated at the beginning of this post. Lucas has been full of adorable lately! He just does the cutest things to get a reaction out of you and is always so surprised when you do have a reaction. He took his first, unassisted, step this week. It was super wobbly and was only one, but you have!
His weigh in was 14 pounds 11 ounces on April 19! So, we're super hopeful that he will have reached 15 by Thursday's weigh in.
Andy is in the process of getting a new job so we can hopefully have money sometime again. These $20 paychecks are getting quite ridiculous! Hopefully we will hear from them this week. It would be really awesome if it was before we left.
Lucas also had a surprise birthday party on the 19! We thought we were just going to a playdate and this is what we got! He got great toys, and got to eat his first cupcake which, as you can see, he enjoyed....a lot :) It's nice to have friends that truely care since it seems like my "best" one is slipping away.
Tuesday, March 20, 2012
Plastic Surgery can bite my butt...
Well, the IV infiltration turned out pretty gruesome. I honestly don't know where to even start. I came back the next day and there was a blister on his foot. They brought the plastic surgeons down and they said it looked like it would heal on it own in time but there was a possibility he would need a skin graft. They sent us home putting bacitracian, neosporin gauze, and regular gauze on it twice a day. We were released on Monday and ended up going back to the ER on Friday night because he was super fussy, wasn't eating, had a lot of drainage from his jtube and was running a fever most of the day. This time we only had to stay until Monday- mostly because we had a plastic surgery appointment Monday afternoon. At this appointment, we met the most unkind, heartless doctor around. He was a total jackass to us and acted like we were taking his time when we asked a few questions after he spent only about 3 minutes with Lucas. We left doing the same thing we had been doing and were to come back on 3/22. The next week and a half flew by with no issues at all, then his foot started changing dramatically every 12 hours for 2 days. I wasn't feeling comfortable with what the plastic surgeons on call were telling us- or the nurse that works for the plastic surgeons, so I decided we would take him to Sullivan County Hospital to have an actual person to look at it. The nice doctor there said we should probably go ahead and go back to Riley's just to be on the safe side. That's right....three times in less then a month...
So we got back to Riley's around 1:30 in the morning...and while they were moving a lot faster this time around and had things done pretty promptly, we still didn't get a room on the heart center until around 6:30 in the morning.
Plastic Surgery came up around 8 or so and looked at it...and in their most uncaring, empty voice said this is what it's supposed to look like. At this point, I hadn't had any sleep in over 24 hours and went off on the doctor. Because no one told us when to worry or what looked good and what looked bad and seemed completely heartless to me. Also, if they had just came down to the ER the night before, we could have gone home and slept and not worried that we were going to be having an emergency surgery.He pretty much blew me off and went away.....UGH I HATE PLASTIC SURGEONS!!!!!!!!!!
So, now are putting a different type of cream on it, and the neosporin gauze, and the dressings twice a day, except now we are also letting him soak in water for ten minutes every day. This part grosses me out because parts of the stuff falls off in the water and makes me all squeemish.
Now we don't have to go back to Indianapolis *hopefully* until April 9 for cardiology, plastics, and hopefully a general surgery appointment.
On a side note, I have seen people complain about Riley's and I have always stuck up for them and will continue too, however, I now understand what these people are complaining about. I have never had a bad experience there unil we have had to meet the plastic surgery department. The doctors don't seem to care about people and I've never felt like a doctor was more in a hurry. I thought maybe it was just a one time thing....you know, behind schedule, etc...it happens. But now that I've met more then one of them and both treated me/us the exact same way, I think they are all like that. I hate it....I will continue to stand up for them as a whole, however, I will not include plastics in my positive experieces.
So we got back to Riley's around 1:30 in the morning...and while they were moving a lot faster this time around and had things done pretty promptly, we still didn't get a room on the heart center until around 6:30 in the morning.
Plastic Surgery came up around 8 or so and looked at it...and in their most uncaring, empty voice said this is what it's supposed to look like. At this point, I hadn't had any sleep in over 24 hours and went off on the doctor. Because no one told us when to worry or what looked good and what looked bad and seemed completely heartless to me. Also, if they had just came down to the ER the night before, we could have gone home and slept and not worried that we were going to be having an emergency surgery.He pretty much blew me off and went away.....UGH I HATE PLASTIC SURGEONS!!!!!!!!!!
So, now are putting a different type of cream on it, and the neosporin gauze, and the dressings twice a day, except now we are also letting him soak in water for ten minutes every day. This part grosses me out because parts of the stuff falls off in the water and makes me all squeemish.
Now we don't have to go back to Indianapolis *hopefully* until April 9 for cardiology, plastics, and hopefully a general surgery appointment.
On a side note, I have seen people complain about Riley's and I have always stuck up for them and will continue too, however, I now understand what these people are complaining about. I have never had a bad experience there unil we have had to meet the plastic surgery department. The doctors don't seem to care about people and I've never felt like a doctor was more in a hurry. I thought maybe it was just a one time thing....you know, behind schedule, etc...it happens. But now that I've met more then one of them and both treated me/us the exact same way, I think they are all like that. I hate it....I will continue to stand up for them as a whole, however, I will not include plastics in my positive experieces.
Friday, February 24, 2012
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
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
Thursday, February 23, 2012
J tube surgery
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| Does this kid look like he just had surgery?! |
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!!
Wednesday, February 22, 2012
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.
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.
Tuesday, February 21, 2012
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!
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 :)
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