Ethan Hardy Carriere was born January 8th, 2011, a more beautiful baby one has never seen (obviously our unbiased opinion). His life in the beginning was far easy. This is our blog about his life, the challenges, and the triumphs! Hope you enjoy!
Hard to believe it's been so long since we last posted something! Ethan is doing very well, getting bigger every day. He has another follow-up with the surgeon on Monday (June 13) so we'll see how that goes, we think he'll be happy with how Ethan is doing...we'll let you know what he says. We think Ethan might be teething because he's chomping on his fingers, our fingers, toys and blankets! But he doesn't seem to be in any pain with it...I guess getting teeth doesn't even compare to what he had been through so maybe it'll be a piece of cake! (hopefully!)
Ethan's so social, loves to "talk", smiles all the time and has the best laugh! He's really discovering his voice these days. He's also a little goofy, as you can see from the picture below....and yes, he put his teething ring on his face himself, then proceeded to laugh and leave it there!
He's still spitting up, but nothing like before...I'm starting to think maybe he's just a fashionista and likes to have his clothes changed a few times throughout the day!
Today we had a really great day, it was relaxing and we got to sit outside for a little while which was so nice! I think the fresh air tired Ethan out because he actually fell asleep during his bath....
Here are a couple of videos from the past few days:
It's been about 2 weeks since my last post...we've just been having too much fun to spend time on the computer :)
Ethan is doing great. He still throws up on occasion (once a day at most, usually coinciding with crying) and his body is still trying to get the digesting thing down, but he'll get there eventually. We had a follow up with the dietitian and she is very pleased with Ethan's progress and said she doesn't need to see him for a few months now. And we also went to see the surgeon on Friday he's also happy with Ethan's progress. He did take a stool sample though because it' still weird (I'll spare you the details)....he just wants to have it tested to see if Ethan is losing a significant amount of nutrients and if he is then he can go on some sort of medication to slow things a little to give his body a better chance to absorb everything it needs....but that being said, he has been gaining weight well (average 30g/day) and he's finally in double digits - officially 10lbs on Friday! Yay!
We also found out on Friday that Ethan's case will be published in a medical journal. I don't know which one yet, but will definitely be requesting a copy, if I can. The doctor said he is a very special and complicated little boy! Every time they start writing it they come across a new discovery....initially they thought he had an omphalocele, then they didn't, then it was confirmed in pathology that he did, then the next surgery was done because nothing was passing from top to bottom, at which point we thought Ethan was in the clear, but he ended up in hospital again....this time they thought the scar tissue had formed a stricture that wasn't letting things pass through, which was partly true, but apparently Ethan was forming another small part of intestines inside the ones he already had....I don't know if that even makes sense the way I said it, but I can draw you picture if I see you....so they think that the narrowing was part of the problem, but also that the extra piece of bowel was trying to work too and was causing an overproduction of bad things (mucus, bacteria, etc).
That's about it for news....and here are a few picture of the past couple of weeks....
Austin Powers impersonation
All played out
Chubby cheeks...finally!
(and his cute little shirt says "Bald is the new Fro"!)
We hope you are all doing well. Thank-you so much for all of your support, we don't know if we would have made it to this point without you. <3
We've been home for just over a week now and Ethan has been doing quite well! He has thrown-up a few times, but it seems to be mainly due to him having a crying fit before/during eating or he's taken in a little too much. He also has a diaper rash from hell, his body is still figuring out how to digest after not having eaten for a month, so it's very acidic....finally NORMAL baby problems! We've been alternating between zinc, polysporin, and canesten....if anyone has a miracle cure for diaper rash I'd love to hear it!! Poor little guy :-(
His belly is still bigger than a baby's without intestinal issues, but it's almost always nice and soft, which is what the doctor's want to see. He also still has some pretty loud gurgles, but it will take a while for his intestines to return to a normal size because they were dilated.
We've had appointments with the dietician, surgeon and pediatrician and everyone is happy with Ethan's progress. He is also gaining weight like a champ! He was 8lbs 12oz on Thursday, May 5 and yesterday he was 9lbs 2oz. So hopefully that will continue and he'll just get bigger and stronger each and every day! We have follow-up appointments in 2 weeks to check the progress.
This time being home feels different. We are still a bit nervous - maybe cautiously optimistic is a better way to say it - but the more time that passes at home I'm sure those feelings will diminish or even go away completely.
Below are the last few pics from the hospital and one at home....
Going for a walk in the pram!
Finally wireless!
Ready to go HOME!
Happy Mother's Day to me and Happy 4th month to Ethan!
It's so wonderful to be home! Of course we are still nervous that Ethan will end up in hospital again, but I'm sure that feeling will fade as time goes by. Luckily this time the surgeon is going to be following Ethan for some time and will be able to diagnose if anything isn't quite right before it gets bad (hopefully that never happens. but it's also comforting to have added confirmation things are actually okay).
Just because Ethan's hospital stay is done, doesn't mean we are going to stop posting. We are going to keep up with what's happening in our lives and post pictures as the weeks, months and years go by :)
I have a question for all of you: Since our lives have been far from normal while in hospital and Ethan would get sleep whenever he could because he was constantly being poked and prodded by doctors and nurses, regardless of whether he was sleeping or not...although there were a few that believed you should "let sleeping babes lie". So, I know all babies are different, but what is considered "typical" for a 3-4 month old? how much do they sleep? can you get them on some sort of schedule? how often do they eat? how much do they eat? etc, etc, etc....
I'll post more later, our supper just got here....TTFN!
April 29th, 5:30am, Tammy sends me a message "Dale, I feel sick, I need you to come here.", my phone, being "Phone Calls Only" didn't make a peep. Just after 7, my phone rights "Dale, I need you..." not sure what else she said, but I think before we were done talking I was half way to the hospital.
I get there, and send Tammy home to get some rest. And here's where things get interesting. Our doctor comes in and says "Everything looks good, his feeds are good, as long as he's above 40cc's he'll stay hydrated, above 70cc's for calories. (he was at 60cc's), so, I'm good with you guys going home today."
Um... homeboy say what now??????? Home??????? Not sure if I'm dreaming, Ethan pinches me somewhat (not hard mind you, but hard enough to feel).
I tell him that earlier Ethan had a bit of blood in his stool, he asked how much, I said it wasn't much at all. He asks if the next one has, to get him paged and one of his students will come have a look. Next one comes, we call, and the student "oh, good, that's nothing at all. Just in case, we'll get something for his stomach, though I think it's more likely just irritation".
So, I call Tammy "Um... hon? We're going home today." Her being sick prevented her from being overly excited, but I can tell in her voice she'd be crying with joy had she had the energy".
"Should I come there now?" Still in a bit of a fog, we did after all just wake her.
"No, take your time."
Tammy show's up at about 12:30, a bit refreshed (still not feeling well). We make sure we have all of your ducks in a row, any prescriptions we might need, and then the drive home (some of you know this already).
On the drive home, I get a call from Grandma who I had been trying to reach all morning. (Some of you will think this is mean, and it kind of is, for that I am sorry. In that, you think it's mean ]:)) Others, will laugh, and you should, cause this is FUNNY!
Me - "Hello"
Grandma - "Hi, you've been trying to call me"
Me - "Yes, um, Tammy and I have been talking, and well, we don't want you to come visit us at the hospital anymore."
Grandma - ".........."
(about 3 seconds pass by)
Me - "Don't you want to know why we don't want you to come to the hospital?"
Grandma/Me - "He's going home?"/"He's going home!"
lol
So, today April 30th, I woke up to something I've dreamed about for a month, a pissed off crying baby! AND it wasn't at the hospital either!
It's all surreal still, and we're still in a bit of a fight, but we're fighting on home field! (statistics prove that the home team has a chemical advantage over the 'visitors'. So, that's good!)
Ethan
"I'm back where I belong, I've never felt so strong! I'm feeling like there's nothing I can't try, and if you're with me, put your hands high!"
So, tonight, I got home from the hospital, got some work done, and sat on the computer. Looked at it, and started to listen to some music. I noticed that we have a bunch of pictures on our desktop of our time at the hospital, coupled with a few video's.
I opened one of those pictures, and my heart melted. You've seen this picture before, but I wanted to share it again.
I happened to be listening to a song that has some very deep meaning to Tammy and I.
I smiled at first, he's so beautiful....I remembered the first day I got to meet him...greatest day of my life. I remembered the first time I got to hold him, 6am @ St.Boniface before he was taken into the NICU. I remember his first surgery, his first trip outside (in the 'bus'), his second surgery, his 'cool lamb shades', the first time he had no wires, the sleepover, the ride home, the nights of staying up (Tammy), the company he gave us, the first time he looked at me and KNEW who I was, the first time he cried, the first time he smiled, his first laugh (sleeping), and his first laugh (awake), his fourth surgery, his time in the PICU, where despite being pokes and prodded he'd still smile with his eyes, his move back to the regular ward, the removal of tubes and wires, the feeding him from a bottle, his smile, his laugh...
In the past couple of days Ethan has been eating well by bottle! The amount has been increasing by 5cc's every 12 hours. If tonight goes well, they might start increasing every 8 hours starting tomorrow. The NG is out! As you can see by the picture below :)
Ethan is up to eating 1oz every 3 hours, so the lipids have stopped and once he reaches 2oz the TPN will stop, after that we don't really know the plan, but are assuming that he will need to stay a few more days with only being bottle fed to ensure he is gaining weight and absorbing nutrients from his food through his digestive system....so, only time will tell.
Yesterday the surgeon admitted that they should have listened to be days ago about how Ethan was being fed!
Thank-yous.....to Auntie Tracy for the bath, to Jolene, Andrea & Eric for bringing us Easter meals, to Tanya and Kristi for coming for walks with us, and to Great-Granny, Auntie Joanne, Gramma, Grandma, Auntie Heather, Chloe, Nikki, Kelly and Rebecca for coming to visit over the past few days and bringing coffee and gifts. (I hope I haven't missed anyone!)
Sorry for the short post, I just came home for a quick shower and then need to head back to the hospital for the night, but wanted to let you all know how things are going. xo
It's hard to believe that one month ago at this moment the 3 of us were waiting in a room in the Children's Hospital Emergency for a room on CK3 to be cleaned so Ethan could be admitted, which happened around midnight. That evening on the way to the hospital Dale and I agreed that we were not leaving until Ethan was "fixed" and we prepared ourselves for the inevitable --- being admitted.
I don't think either of us thought we'd be there for this long, but it will all be worth it when Ethan can live a healthy, happy, normal life.
Dale had a good night with Ethan last night and he is staying over at the hospital again tonight. This morning the docs decided to increase Ethan's feeds, they said we could give him 7 - 10 CCs (or MLs)...we decided to stick with 7CCs for the day and he did quite well with that. He did gag a couple of times throughout the day, but never threw up...and we're thinking the gagging was due to still having the NG tube in. If all goes well tonight the NG tube should come out tomorrow! and then all that will be left is the PICC line in his groin.
Can't remember if I mentioned this before, but Ethan was in isolation for a few days when he had the fever. The nurses and doctors had to wear gowns, masks and gloves whenever they would come in to the room. The majority of the tests have come back negative, we're just waiting on the blood test results, so we are no longer in isolation.
Because Ethan has been on TPN for a few weeks now he has gotten to the point where they are concentrating the mixture so he still gets the same number of calories, but then gets a 2 - 4 hour break from it, to give his liver a rest. TPN and lipids are great because they provide nutrition without having to eat/digest, but it needs to go through his veins and be processed by the liver, which can be very hard on it. Some kids who have to be on it long term (many months/years) end up needing liver transplants! Amazing and scary stuff.
Earlier today Dale went home to clean up and pack a few things for tonight. During the break from TPN, while Ethan was finally free from being connected to any machines, Grandma Elise happened to be visiting and we were able to take Ethan in a carriage and go for a walk! The last time we did that the ground was covered in ice & snow! Ethan seemed to really enjoy the short jaunt outside when we went from Children's to the General Hospital...he closed his eyes and took a few deep breaths to soak it in. We meandered all over, peeked in to Ronald McDonald House and went to the cafeteria to get a coffee. When we walked through the main entrance of HSC there was a woman in a black and white coat in front of us and I had a strange feeling about her - not bad, just kind of drawn to her. As we got close enough to be beside her she asked how old Ethan was, I told her 3 and a half months, she somehow knew he was a preemie, talked about how bright and alert he was and then said, "He's doing well." It was such a bold statement coming from someone I had never met....and yet, I knew she was right. Then she told us that her brother was a preemie, he was about 2lbs and now he's 6'1".
Since the tube feeding has started Dale and I have disagreed with it. Ethan has always needed to be held upright for 15-20 minutes after he eats. So, for a pump to be continuously putting food into his stomach, no matter how small of an amount and how much of an incline he is on, it doesn't work for him. I can see how it would work for some, maybe even most, kids but it just doesn't work for Ethan. But it was what the doctor ordered....the tube feeding is the reason that Ethan has thrown up numerous times and has landed back at square 1 (as Dale mentioned in his post).
So, today I made yet another attempt at a plea to stop the tube feed and to let Ethan take a bottle. Thankfully it is the long weekend and we have a different resident and a different surgeon on duty and they said they were willing to give it a try because (in their words) "Mom knows best"....FINALLY a victory for us. By the time I left tonight, Ethan had had 4 bottles (he's getting 5ccs every 3 hours - basically a teaspoon) and no throwing up! He's still so hungry after he gets a tease, but we need to start really slow so his body can handle it, maybe the amount will increase tomorrow...but we also don't want to rush him.
Hopefully the feeds go well throughout the night and then the NG may come out tomorrow. Ethan's tummy had gotten a bit bigger, but that is to be expected with his feeds...they are more concerned that it remains soft and that they can hear normal bowel sounds (both of which are good). It will take time for his body to figure out what to do with food again, so he did have some gas pain today and we asked for an order to be put in for Oval to help and the docs agreed again. So, now Ethan get regular doses of Tylenol (every 4 hours), can have Oval every 6 hours, is getting Clonidine at 9pm to help him sleep at night and can have morphine on an as needed basis (which he hadn't had since early in the morning).
Another thing that happened today was the IV in Ethan's head stopped working, so it was taken out and the antibiotics that he's receiving are being put in through his PICC line. And his fever is totally gone - although we still don't have all of the test results back regarding the source of the infection that his body was fighting.
Thank-you to our company today -- Tanya for coffee & timbits, Mom for the sandwich and to Lucy for babysitting so Dale and I could go out for dinner together!
And lastly, Dale is staying at the hospital with Ethan tonight so I could come home and get a good night's sleep, so I am going to do just that! Goodnight all. Thanks again for reading and for all of your support, we are lucky to have you all in our lives.
Hey all, I haven't been posting all that often in here, finding it hard to bring myself to do it.
I figured I'd give you a snapshot as to what goes on in my mind on a daily basis. When I wake up in the morning, I'm wondering how Ethan and Tammy's night was. I'm hoping that they both got some sleep and that the nurses, as great as they are, tried to consider that he needs sleep just as much as they need his vitals.
I wonder what the plan is from day to day, then, when I find out. I question them. The other day, as an example. Ethan had a fever, it was quite high. Despite that, they change his "food" from Infalyte to formula, and increase the dose per hour by double. To me that doesn't make much of any sense, shouldn't we wait until his fever breaks before you "shock" his body more? I don't know, it just seems wrong to me.
He ends up barfing it all up, setting us back again to square 1, no feeding.
I'm going to use the word frustration, as I believe it is the most appropriate. I don't have the tools to fix this, and the people who should don't seem the be able to just yet, and from this persons uneducated view, seem to be making poor decisions about it. So, yeah, I'm (we're) frustrated.
I was asked what I wanted to do after Ethan gagged three times, then puked on me.... I wanted to answer "I DON'T EFFING KNOW..." because I don't, but instead I made the tough choice to make them stop and start over again. Frustrated....
He's spooks when there is a loud sudden noise, likely a side effect of the morphine, but even after everyone is told that, they still make loud sudden noises... I know they can't stop some of them, it's part of the job unfortunately, so again, frustrated.
Now the most frustrating part, I can't be there all the time, I want to be, he's always on my mind, but I have to work. So, when I go in, and the nurse asks me "what would you like us to do for him..." I honestly don't know because I don't know what has been tried.
I am thankful for a few things, first and foremost, that he's seemingly happy. He smiles at me when he sees me, it makes me cry to see him, he's sooo strong. Second, Tammy. I don't know what I'd do without her. She is the worlds strongest mom (no offense to other moms), she pays attention to what is going on with him, with what the nurses and doctors are doing. She educates herself on everything, so that when thy ask her or talk to her about it, she knows what they are talking about. Finally, our support group. You are all amazing, keep posting in here, your collective voices give us strength, and we'll take all the strength you give us.
Anyway, that's all for right now. Tammy will post something later for you all about how she "Won" today. (Good on ya babe!)
We are still on CK-3 and we've had good moments and bad ones. Ethan has started and stopped feeds multiple times now because he seems to not be tolerating it and he throws up, so we're hoping all he needs is more time. And he had a really high fever, which has now come down, and we don't know what the source of the fever is yet....they took samples from his blood (from a vein in his arm), the central line, pee (using a catheter), and his nose (using suction). The results can take 24-48 hours, so as of right now we still don't know what's going on. The doctor thinks the central line will be the source of infection, in which case it will need to be taken out and the TPN will need to be administered through a regular vein.
It's hard to believe that of Ethan's 104 days of life 50 of them have been spent in hospital (52 if you count the days we went to the Emergency Room and weren't admitted). Our lives have been put on hold...there are still wrapped shower gifts in the living room, 4 weeks of recycling in the blue box, the bare minimum of laundry has been done, the fridge is empty, all of Ethan's things that were out when we took him to the hospital are still in the same places.
A day in our life looks like this:
6:00am - Tammy & Ethan get woken up by the lab technician that wants to poke him in the heel to draw blood samples for his TPN
7:00am - The surgical students and residents come in the room to do rounds (they report back to the surgeon to get a final decision on the plan for the day)
Throughout the day - usually every time I get Ethan to settle down to sleep - someone comes in the room because they want to check Ethan's vitals, measure his belly, change IV pumps when they beep, clean the room, send us for xrays, talk about pain management, talk about chest therapy, talk about oral stimulation, remove tape, change dressings, insert IVs, give antibiotics and the list goes on and on and on....
Lunch - Dale will come to the hospital and bring food if his work schedule allows
The list from above continues through the afternoon
Evening - Dale comes straight from work and either he or I will go get dinner from the cafeteria and eat in the room, sometimes I take a nap because of the chaotic day while Dale stays up with Ethan. Then when he has to go home because we can't both stay at the hospital I feel sad because our few hours of "normal" has to come to an end. Somedays I need to come home to shower, so Dale will stay with Ethan until I return to the hospital and then will have to leave because he has to work in the morning and we don't get to spend any time together as a family.
Night - I get up with Ethan when he stirs and will change his diaper and try to get him back to sleep. Sometimes the nurses wake him to do his vitals and then leave me to comfort him and try to get him back to sleep....most nights are difficult....how do you comfort a hungry baby without food?
I try to be positive and strong, but it's so hard to do. I cry a lot. We've been living at the hospital for almost a month now and everyday starts out with a great plan and then things don't work out the way they are supposed to. I feel so selfish feeling sorry for myself when our brave little guy lies in his hospital bed next to me fighting off every nurse and doctor that comes near him.
To the parents reading this....the next time your little one makes you mad, take a breath and give them a hug. Be thankful that you can have a child and be thankful that they are home with you. We are thankful to be blessed with the bravest little guy, who even after being in pain will look at us and smile.
We are back on CK-3 (Room 335). It's good because it means Ethan is getting better, but bad because we don't get spoiled in PICU with the one-to-one care anymore and now I have to go back to sleeping on a chair that folds out into a bed.
Another good thing is that anyone can come to visit us as long as you are healthy (kids can come too). Visiting hours are until 8:30pm. We can also have our phones on there so please call, text or email before you do come.
And the weird thing is that now that Ethan is being fed continuously through his NG (and we aren't both allowed to spend the night) it means that we will have a 'sitter' in the room with us.......it's VERY hard to sleep when you know there is a stranger in the room staring at you!! I hope no one reading this ever has to experience it! Maybe I'm being dramatic, but I do really, really hate it.
Briefly, just wanted to let you all know that the feed has been running all day and was still running when we left....Ethan has coughed, gagged, and threw up a bit. His belly is now 41cm, but it's still soft....tough to say what the verdict will be tomorrow in rounds.
And he's pretty much wired right now....he's been awake all day except for a few intervals of sleep! I guess he's making up for lost time while he was sedated and sleeping for the past week. I just pray he figures out how to sleep before he gets on the ward because I'm gonna be soooooo tired if he doesn't!
We're not sure if today has been successful, but it hasn't been a failure....so that's positive.
Didn't get a chance to post anything yesterday because we fell asleep as soon as we got home...Ethan has been doing well the past 2 days.
The reason for the title is that Vigorous and Appropriate are two words we like to hear! They mean that Ethan is doing well and acting/reacting appropriately to whatever is going on.
Today was a big day and proved the point on being vigorous! At 6:30am Ethan decided he was done with his breathing tube and apparently pulled it out himself! No worries - he is completely fine - it was going to come out today anyway. His urinary catheter came out and his IJ (Internal Jugular IV) also came out. Although, they did need to put a new regular IV into Ethan's head because he is still getting regular doses of antibiotics. His sedative and fentanyl were stopped today and he is just getting regular doses of tylenol and morphine through his NG.
And after EIGHT DAYS of not being able to...I FINALLY got to hold Ethan!! :)
Today, they also decided to restart feeding Ethan. His belly measured 37.5cm around this morning (which is the smallest it's been in a looooong time) and then after about 4 hours it was up to 38.6cm....it's expected that it will get a bit bigger because he's being fed, but this will be watched very closely because if it keeps getting bigger and if it gets hard then the feeding will stop again because it means his intestines are enlarging because they can't handle the food yet.
He was acting appropriately by interacting with us while we visited this morning. He was a bit agitated which was likely due to all of the changes today, but he settled down around 4:00pm for a snooze so we came home to get some things done around the house because it sounds like Ethan will be going back to the regular ward soon....which is good because it means he's making progress, but it also means that one of us needs to be at the hospital 24/7 again because he won't have a nurse watching him all the time or be behind locked doors.
We may not be able to update the blog as often because we won't have access to the Internet in the other ward, but we will do our best.
We're heading back to the hospital soon, we'll let you know how the feeding is going later on tonight.
Its just after midnight and we've only been home for a little while...so this will be a short one...
Ethan had a bad night last night. Very uncomfortable! So his pain medication was put back up and the feeds were stopped. He was also given some extra sedatives to help him settle....and finally around 4am he did. He slept for a few hours until he had to be done up. Then took him a little while to settle down
...and the cycle continued, whenever he woke up he was bugged for a few mins to get him cleaned up, x-rayed, etc and then settled again. He had a really good sleep through the afternoon and then woke up early evening and was awake until about 10:00pm....all the while having some moments of calm, but mostly he was fussing and uncomfortable and at times unconsolable. He started passing gas....which is good because he needs to get it out, but bad because it's terribly painful.
Today the docs decided to just give Ethan a rest and basically return to the setting he had on Tuesday. So, all in all, it wasn't a great day, but it wasn't awful. We've gotten used to one step forward and two steps back. And as Carrie (our day nurse) said, it's tough but it's basically par for the course. Not exactly what we want to hear, but there is some comfort in knowing that Ethan's recovery has been somewhat typical and expected.
Thanks to Andrea and Andrea for coming to visit (and yes, I did mean to write Andrea twice)
We can only have 2 people in the room (and that includes us)....so if you want to come visit, it would be best during the daytime (when it's usually just Tammy) and only one at a time, you can't be sick, and no kids are allowed in. Please check with us the day before you come and tell us what time you'd like to be there so we don't have overlapping people waiting in the waiting room. We can't have our phones on in PICU so if you can email or text that would be best and we will get back to you when we leave (either for a break or at the end of the night). And lastly, as much as we'd love to see you all, it is difficult at this time because of limitations so please don't feel obligated. We know you would all be there if you could. It would probably be easiest if you come after we get onto a ward where there aren't any limitations aside from visiting hours ending at 8:30. Thanks! XO
I kind of feel bad for Ethan when he reads this when he's older, but seriously....Yay for POOP!! He had a few good ones today....even one that went up his back and got all over the plastic dressing covering his epidural and the dressing had to be changed because it was a disaster (thankfully the insertion site was totally clean and dry). The docs decided to start feeding Ethan, cut his Fentanyl in half and changed his breathing setting to only have a back-up on 2 breaths. We kind of feel it was too many changes all at once because it was an up and down kind of day. It would have been better if one change happened at a time so that when he started fussing we'd have a better idea of which change caused the discomfort.....but it is also nice that they have faith in Ethan and want to challenge him. There was yet another problem with the PICC Line in Ethan's leg....it pretty much stopped working! So for about an hour or so his sedative and pain med was slowed down quite a bit. They used some sort of drug that they just put in the IV (enough to sit in the tubing on the outside and not go right into Ethan's body) and it broke up the clot that must have formed on the insertion site of the line. Then it got sucked back out and the line was working again. The RTs also changed the tape on Ethan's face holding in the intubation tube because it was starting to come a bit loose from saliva and was moving a bit, and was causing some irritation which made Ethan need to be suctioned quite a few times (because he can't cough himself). And the IV in Ethan's head came out today! So with the changes and the slowed medications Ethan had some moments of elevated heart rate and some troubles with breathing, but all in all it was an okay day. We'll post a video of him sucking on the breathing tube tomorrow....it squeaks. Very cute! Thanks to Grandma, Cassie and Kelly for coming to visit!
Yesterday Ethan was a test subject for a new monitor that measures hemoglobin! If the hospital buys these machines it would save a lot of kids from getting poked to have blood drawn.
He was the first live test subject in Manitoba and one of the first in all of Canada! It would be nice to be part of a positive change in the hospital!
At about 6:00am the Respiratory Therapist (RT) decided to turn the ventilator setting down from 40 BPM (breaths per minute) to 30 BPM to see if Ethan would start taking some breaths on his own....and he was doing this when he was awake, but not so much when he was sleeping.
During rounds they decided to cut Ethan's sedation down and to cut his Fentanyl in half because, even though he could feel ice being touched to his belly, the epidural has seemed to be working to help with the pain. So, because of the decrease in the drugs Ethan was more alert today and stayed awake for longer periods of time. And then the RT saw that he was taking a lot of extra breaths on his own so she wanted to challenge him and turned it down so he could totally breath on his own, but if the machine detected that he stopped it would kick in at 15 BPM....and he did great all day breathing completely on his own and was still doing fine when we left this evening. His belly is also starting to shrink!
The PICU doctors and the Surgeon are all very pleased with Ethan's progress in the past 24-28 hours :)
Thanks to Gramma & Kelly for coming to visit and to Lucy & Lisa for taking me out for dinner!
Below is a picture of Ethan in his bed with all of the machines he is using...
Ventilator
8 Alaris Pumps (all of which are being used to give different meds)
1 Triple Baxter Pump (for TPN)
1 Monitor for his heart rate, O2 level and blood pressure
So, during our time at the hospitals in Winnipeg, we've come to realize that they need some things.
1 - The St.Boniface NICU needs new chairs. They should be comfortable enough for a new mom to sit in for days with stitches in "there". Small enough to fit into smallish spaces. Light enough to be moved easily.
2 - Childrens Hospital needs WiFi! Seriously, these kids are all internet savvy and many of them are BORED! Hook up the internet there!
3 - PICU @ Childrens needs laptops. They are charting all over the place, on paper, numbers aren't adding up, things are just difficult. This would make their lives so much easier!
Once Ethan is good and home, these are missions we want to tackle!
Before becoming pregnant (even during pregnancy) I was always nervous about the idea of motherhood....how was I supposed to know what to do? How would I know when my baby needs something? But, it really is true that somehow moms pretty much always know what is going to work.
After Ethan was done up today he was moved to his left side, which seems to be his least favourite side since we've been here. He squirmed for a bit, I got the nurse to suction his mouth a second time, and I told her I thought he'd settle down. She wasn't so sure and was watching him in preparation of giving him more sedative and sure enough...he settled into a comfy spot after I pulled his blanket up to cover his shoulder and he's been sleeping quietly ever since, without any extra sedative.
Another time he settled after I asked the nurse to draw back on Ethan's NG because I thought he was fussing from having air in his tummy....they always tell me the straight drain should get the air out, but every time they are able to get extra air out with a syringe and then he's fine.
Before the surgery, when we were on the other ward, Ethan was sneezing and rubbing his nose for a while and normally he didn't really fuss with the NG tube. So I said to our nurse, Tim, that I think we need to take the tape off Ethan's nose so we can clean the 'boogies' off his tube. Tim looked at me and said, "I guess we can do that"...it's a bit of a process to get a piece of tape off a squirming baby's nose so he wasn't super keen on the idea, but he was appeasing me. And guess what? there were tons of boogies in there! And when Tim saw that he said, "well, I guess you were right Mom!"......of course I was :)
Ethan's heart rate is down and his ventilator only beeped a few times, but that was pretty much just when he was being "done up". And for those who don't know what "done up" means it's when the nurses change his position, take his temperature, measure his belly, give him a Tylenol suppository, check his abdominal pressure using the catheter in his bladder, and doing mouth care. His care is "blocked" which means all of the things listed above are only done every 4 hours, rather than all day so he has time to rest in between.
Sometimes things need to be done in between the blocks if he's fussing from being uncomfortable so they suction his mouth, check if his catheter is blocked, draw back on the NG to check for air in his tummy and if none of those work then he is given a bolus of pain medication and/or sedative (basically a top up).
We got to see Ethan's beautiful eyes for a few moments today. He looked around and focused in on us for a second before closing his eyes again. We're glad he knows that we are there with him through all of this. He also got the epidural in the late afternoon! It seems to be working so far. They haven't reduced any of the fentanyl or midazolam yet because they want to give it time to freeze Ethan's tummy.I'm guessing they will wait until rounds tomorrow to come up with a plan to wean him off the narcotics.
Thank-you to mom, Tanya, Lucy, Custodia and Nigel for coming to visit us today....it always makes things a little easier to deal with when we get visitors.
I just talked to Ethan's nurse and last night went much better than the night before. He was squirming around a bit and they found the sedation wasn't helping so they thought he might be itchy and gave him some Benedryl....BINGO! That was it and he settled after that. (Benedryl also has a sedation effect, so they aren't 100% sure about itching or the sedative, but either way - it worked)
He also had another blood test this morning and the results are good enough to get the epidural! It will help with his pain management and will allow them to decrease his morphine/fentanyl, which will then allow them to take out the breathing tube because the epidural won't affect his lungs, and then once the breathing tube is out the sedation can be decreased.
Off to the hospital for the day....will let you know how the epidural goes later tonight.
When we saw Ethan this morning we barely recognized him because he is so swollen because of all the fluids he's being given...TPN, lipids, morphine, midazolam, D5W, saline, and probably a few others that I'm forgetting....but he's still a cutie even though he's so puffy.
Auntie Tracy was working again today and keeping an eye on Ethan, even though he wasn't her patient. And she also made sure to hand-pick our night nurse so we get the best! :)
We got to the hospital this morning in time to be there for rounds. Basically, they discuss the events of the previous 24 hours and come up with a plan for the day, each person who plays a part in Ethan's care (nurses, respiratory therapist, resident, doctor, pharmacist, surgeon, etc, etc) takes a turn. Due to the extensive Brady (pronounces brad-ee), morphine, midazolam, and paralyzing drug required the breathing machine was turned up so it was breathing for Ethan, rather than him breathing on his own and this continued throughout the day. His morphine was increased to manage pain. They were also giving him platelettes and Vitamin K so his blood clotting abilities would increase so they could give him an epidural to help with the pain over the next few days....unfortunately his numbers didn't come up enough, so he will have more vitamin K and the blood test will be redone at 6:00am tomorrow. He was also started on antibiotics because his tummy around the incision site was becoming pink and they don't want to risk him getting an infection because the bowels contain large amounts of bacteria. His tummy is getting bigger, but it looks different than it did pre-surgery and the surgeon said he expected the swelling and isn't overly concerned about it.
Later in the day, Ethan's pain medication was changed from morphine to fentynol (sp?) to see if that will help and they started giving him regular doses of Tylenol. He has also been put on a medication to help his organ absorb some of the fluid that is hanging around in his body.
Dr Milbrant paid us a visit today and put us a little more at ease. Ethan had had a couple of Brady's throughout the day, but the doctor said he expected that and that he's doing everything that they expected, although scary, the doctor is confident that Ethan will fully recover from all of this....one nurse described it as a long and bumpy road, but he'll get there one day.
I'm sure I'm forgetting a few things or possibly mixing up the minor detals, but that's about all I can remember. We still have no idea how long Ethan will be in the hospital and the end doesn't really seem to be in sight yet.
I came across a website today, with short definitions, that I thought might be helpful for those of you who don't know what I'm talking about if I only put a word without a description. Normally I try to put things into English, but just incase I don't here is the site we found that explains some of the terms.
I went through the list and here are just SOME of the things we have encountered with Ethan. We really wish we didn't know what any of these things are, but we do so we try to educate ourselves as much as we can so we can ask appropriate questions when we want to know what is happening with Ethan's care....
Just wanted to add a little more to my last post. I forgot to mention that when Ethan turned blue and he had to have some oxygen that his heart rate also dropped to somewhere in the 30s (normal is 140-160) so they had to do about 4 chest compressions....but as I said, he came out of it and is okay.
The resident doctor called me at 8:30am this morning to let me know that Ethan was doing fine, and that they had figured out part of what happened last night. They did an x-ray around 3:00am and found that his breathing tube was sitting a bit low and had probably touched a nerve (can't remember what it's called) that can cause the heart to react the way it did. So the tube has been moved and all is well.
They also had to give Ethan extra sedation and had to give him a drug to basically paralyze him because he was moving around quite a bit and he could have caused himself harm. It was only given to him twice in the early morning before rounds so it could give the doctors a chance to come up with a plan for the day.
We spent the day at the hospital in the PICU (Pediatric Intensive Care Unit) where Ethan is recovering from his surgery. He is still intubated because he is sedated and getting fairly large amounts of morphine to attempt to manage the pain that he is experiencing.
Thankfully, Auntie Tracy was checking in on him all day to make sure his nurse was taking good care of Ethan! (which she was)
Apparently he was a bit of a wild man in the morning, he got mad while the nurse was trying to assess him and he got his hands on some of the tubes and wires so he had little restraints on his wrists when we got there. Not happy about the restraints, but it is for the best for the time-being.
The nurse also said he was the most settled he had been all day once we got there and were holding his hands, rubbing his head and talking to him....he knew we were there, even though he was still pretty out of it. He had a few moments of being in pain where he wriggled around and made his alarms go off, even to the point of getting an extra shot of morphine here and there....but for the most part he was pretty settled.
We were there until close to 10:00pm and then headed home when Ethan seemed comfortable and happy.
Fast forward to 11:30pm.....I got a phone call from the PICU because there was an incident! My heart leapt into my throat. The resident then said, don't worry Ethan is okay. They wanted to inform us that while trying to measure Ethan's tummy they lifted him up and he must have experienced a large amount of pain - so much that he held his breath long enough to turn blue! The nurses took off the ventilator and used the manual puffer thing and it only took a couple of puffs for him to start breathing again. They have now increased the machine from 2 breaths/minute to 20, so incase it happens again the machine will breath for Ethan....if it happens again they are going to increase the machine to 40 so it's always breathing for him. They have left the tape measure under Ethan so they don't need to disturb him when they measure his tummy, so that might be enough to avoid another incident. If his pain is still really unbearable through the night they are going to have an anesthesiologist put in an epidural tomorrow.
Very scary event, but also very thankful that we got the phone call to keep us informed. I will be crossing my fingers and toes all through the night.
April 8, 2011....Ethan is 3 months old! Unfortunately we don't get to do what most parents do on this day and get a professional photoshoot done. We anxiously wait all day for Ethan to go in for surgery.
We were told that he was on the Emergency Surgery list which means he'll get fit in when there is enough time to perform the surgery. We will be posting a few videos about the wait, but basically the days went like this - you're going, you're not going, you're going, you're not going....and finally you're going.
An anesthesiologist had spoken to me earlier that day about the benefits of Ethan getting an epidural for pain management afterwards, I was leery at first, but after hearing the details and speaking with Dale we had decided that would be the best option. Then when we spoke to the anesthesiologist who was actually involved in the surgery she said she wouldn't be putting in the epidural because it was too late in the day....while we appreciated the honesty in her knowing her limits, we were also quite disappointed because it was yet another thing that wasn't going as we suspected.
The nurse came out after Ethan had been in for a while to let us know that he was sedated and intubated. She also wanted to let us know that he had an IV in his head so we weren't shocked when we saw him. She said they had tried all of his limbs before resorting to the head IV. She also said, "He sure is vigorous!" Just like our little guy, putting up a fight! I'm glad he gave those nurses and docs a run for their money.
She gave us another update when Dr Kaijzer was closing. She said the surgery went well and that he would be out to give us the details after everything was done.
Dr Kaijzer came out a while later and told us that the surgery was a success and that he was being cautiously optimistic, because unfortunately this can happen again. He had to take out the part of Ethan's small intestine where they had done the original repair because there was a stricture (narrowing) there due to scar tissue. He repaired it differently this time by attaching the intestines side-by-side, rather than end-to-end, if that makes sense? (hard to describe in words without a diagram)...but doing ti this way alleviated taking out a large section of bowel due to the size difference of the pieces being reattached. This time he used staples instead of stitches. And one of the things I was worried about came true....there were several adhesions that needed to be removed.
Adhesions occur when any surgery is done because things have been disturbed. it's basically scars that form and make the bowel stick to itself, to the abdominal wall, the fat that surrounds the bowel....and the adhesions can cause pain, blockages, or do nothing. There is no predicting what will happen. And by removing the adhesions this could cause more to occur...kind of a catch 22.
I'm trying to be strong and positive about all of this, but its so hard. It's not fair that Ethan has to suffer like this. It's hard not to be selfish and self-pitying in thinking why did this have to happen to us? It's tiresome to hear that there is a great plan for us, that we wouldn't be given more than we can handle, blah,blah,blah....all we want is normal. I don't think that is too much to ask for. We would feel blessed just for Ethan to have a pain-free existence and a real shot at having a normal life.
