fairly non-exciting update.

I've been directed to post an update and have heard reports that people are sick of looking at x-rays (gasp, what?), so here goes.

Connor: He's doing much better since our weekend spent in hospitals and clinics. He's been on a combo of laxative + fiber since then and I think it's finally starting to kick in. Yesterday, he had the best stool we have EVER seen. Not to go into too much detail, but it was big, solid and easily plunked into the toilet. Okay maybe that was too much detail. However, it happened while he was awake, and was his only stool or accident of the day. So, that prompted me to call his GI specialist today and update her, just to see if she would change the laxative and fiber dosages, and to discuss the botox surgery. Oh, which, as of early last week, it was decided we're moving forward with. When they called back, we're to try and push the surgery out until late next week, to give us a week or two to see what happens. We THINK he's maybe starting to realize when he needs to go, because he's having more normal stools, so that would be good news, and could always cancel the surgery if he starts figuring how to use/control the muscle. Realizing that was really random and all over the place, but, he's doing well for the most part, but as of right now, we are scheduling and moving forward with the botox injection.

Basement: (ha, as if you really care) They hung the track for the ceiling today so that about ends the official improvements we're making for now. We have some carpet remnants to lay down, can move some furniture in, hang a tv, etc. Good enough for now.

Bryan: Still not seeing great, but we were told 1-3 months before vision was the best it was going to be. Words are still a little blurry and it's pretty frustrating for him. He goes in for a checkup next Monday.

Me: Had my 39 week check up (well, 38 weeks and 6 days to be exact) today. Absolutely no change. Still at a 1 and 0% effacement. Boring. So boring. He won't let me go past two weeks, and really would only induce me if 'conditions are favorable' (see how I spared you the full details) before that. Yes, I was wrongly induced too early last time and I won't push for that (I wouldn't get away with it with this doctor anyways), but a week overdue and I might go nuts. I'm incredibly impatient right now, I desperately want to know what it is, and that it's healthy, and that it doesn't have Hirschsprungs. However, I have a crap load of stuff to do at work, it would be nice to focus on Connor's poop training and so I should be thankful that I have a little bit more time to get things ready. Plus, I have done nothing to get close to packing a bag, getting necessary baby things out, washed, ready, etc. We don't even know what we'd do with Connor in the event that we DID go naturally and overnight or something.  I think it's just that I KNOW I will be induced, so when we know the date, I'll have plenty of time to prepare.

That's about it. Crazy that it's already March tomorrow, Spring, please come soon!

home

We are home and have gotten a couple of hours of sleep and so far, Connor is showing tremendous improvement. To backtrack and update...

We got to Mankato's ER about 6:45 or so last night, to an incredibly full lobby. Connor was still very lethargic and tired, so of course just sat nicely with us in the waiting room. He threw up a lot at one point while we were waiting, which probably made him feel a little better, but of course we grew concerned.

We saw Dr. Shah and were very happy with his actions and how he treated us. The first thing we did was do more xrays to check to see if there was a bowel obstruction. At first, we were like, no way, how could there possibly be an obstruction with all the stool he passed overnight and throughout the day. He said that if there was any of the barium left from the contrast enema study, it could have become 'sludge' like and unable to pass, there could be a twist in the bowel developing, or there could have been some stool stuck again. So off they went to get xrays and they did determine that there was some sort of obstruction. For whatever reason, the barium wasn't able to flow out and completely be eliminated.

 

This was the first xray they took of Connor lying down. The brighter white areas are still leftover barium from the enema. We were shocked at how much was still left. Note that it's mostly concentrated down the left and right, not across the top transverse part of the colon. 

Then they took one of him standing up, and as you can see, everything just kind of 'sank'. This led the doctor to believe there was an obstruction and the barium wasn't able to get up, around and out. 

So the doctor called up to Children's to speak with a GI specialist and got a few things for us to try in Mankato before sending us up there. He manually tried to get things moving, which didn't work, and then tried a suppository. We also gave Connor some sedatives before doing all of this, as we're learning that he doesn't really pass large amounts of stool unless he's completely relaxed (most likely due to the fact that his muscles in his sphincter are too tight normally, and only relax when Connor is relaxed...hence the potential need for a botox injection).  So, of course, neither suggestion worked to get things moving.

We got up to Children's around 1am. Connor had fallen asleep on the way up and passed a LOT of stool and barium fluid. I lost track of time at this point, but we had to wait in the lobby for quite awhile and then we're pretty sure there was only one doctor on call because things took a very long time. They ordered xrays right away and determined that there wasn't a blockage. During that time, Connor had quite a few more large accidents. So long story short, they sent us home since they determined on their xrays that the barium fluid was indeed able to move (could have been due to the suppository at Mankato finally working plus Connor being relaxed enough for the muscles to allow it to pass). We have some pills to try and control any nausea so that he hopefully starts to eat again.

We got home around 5:15 or so this morning and went to try and get some sleep. About 6:30 Connor passed yet again a large amount (seriously, when will this be done?) and then woke up around 9:30 with a little more fluid and a desire to go downstairs and start playing with his trucks. He went right away for his juice cup, wanted some applesauce and crackers, which was fantastic considering it's been 48 hours now since he's eaten or drank anything basically. I'm sure there will be lots of rest today (okay Bryan and I are just hoping for this :)) and we're starting the laxative + fiber plan to make sure we keep things moving and not allow him to get backed up yet again. We do this for a week or two, and if things don't change or get worse, we'll go back to the GI specialist in the cities and see where to go from there.

Thanks for following along, all of your encouraging thoughts and prayers have been so appreciated!

to the ER we go.

Connor has continued to have a pretty rough day today, very tired, not himself. He refuses to eat or drink anything, so that means he hasn't had anything to east since yesterday morning around 8 am. I called Children's and spoke with a nurse and they recommended bringing him into our ER here in Mankato to have him evaluated to see if he needs fluids, etc., so we're headed there now.

update/answers

We've had a pretty rough day and night here, thank you to everyone that reached out and was thinking of us yesterday. We did get some answers yesterday, which was great, and have somewhat of a plan A and plan B to get started.

I'll recap the day's events, and then my wonderful mother provided a medical recap of the day. She's far more superior at that than I am and am so thankful she was able to come along.

(note, this gets a little long winded, but this is for us to remember, too, so I want to document)

We started by seeing pediatric GI specialist Dr. Kennedy at Minnesota Gastroenterology in St. Paul. Dr. Kennedy was wonderful and listened to his history, examined him, and presented us with our plans. Essentially (more detail below from my mom) plan A is for the next two weeks do a combination of laxative and fiber supplements to try and firm up his stools and eliminate the 'smearing' that happens throughout the day. We expressed concern that he doesn't even seem to know that he's going, and she wasn't overly concerned with this, saying that kids with constipation issues (again, more below) very often don't know that these smearing events are happening because it's just fluid and small amounts of stool passing around the larger stool in the bowel. We're hoping that the laxative and fiber will help control this and make for more regular stools. If we see no change or it gets worse, we're more than likely moving onto plan B which is to give him a shot of botox in the rectum to relax his muscles there, making it easier for him to hopefully control those muscles and control when he's going. The thinking is that his muscles there are extra tight, more than normal, and that's why he's maybe unable to 'learn' how to control them. The botox lasts around three months, some kids learn how to control the muscles during this time and don't need another dose of botox, some need more than one round.

So then we went to Children's in Minneapolis to have a contrast enema. Going into this, I didn't think this would be that bad since we had given him three the previous week, but, this was bad. The enemas we gave him last week were 66 ml of fluid. This was 500 ml. To give somewhat of a comparison, it's roughly a 20 oz. bottle of water. I had to stand outside because they were doing xrays at the same time, which I would argue was worse than being in the room with him. All I could do was hear him scream, versus trying to comfort him. Thankfully Bryan and my mom were in there with him. After that experience, we needed to wait for him to get rid of the enema fluid, thinking this would take like 5-10 minutes. An hour later we still had nothing so they came in to take one more xray (really were hoping to take the xray after he got rid of all the fluid). This is when he started throwing up. We first thought it was because he was just so worked up (we were forcing him to sit on the toilet, walk around, etc., to get the fluid out and he wasn't digging that and was extra tired) but the radiologist said it was probably from his stomach contracting while his bowels were contracting. Similar to women in labor feeling nauseous and throwing up, because of the contractions. Then about 15 minutes later, he started getting rid of the fluid, too. Three times in the xray room, in the elevator heading to the car, the car ride home...you get the picture. Literally every 5-15 minutes from 3:30 to about midnight, he either threw up and/or got rid of some of the enema fluid. It was terrible and there was really nothing we could do for him. He was beyond tired, but the throwing up would wake him up. This continued throughout the night but we got an hour to two hour breaks after midnight. He is in MUCH better spirits this morning, playing with his trucks, etc., which is so nice to see. Our hearts were just breaking for him yesterday.

Once his vomiting, etc., calms down today, we'll probably start the fiber and laxatives, just to get rolling on our plan. Bryan and I have self-diagnosed (because we're so qualified, of course) that he's going to need the botox. Lately he's waking up with full pants and the most fluid from the enema yesterday he got rid of overnight, making us think that when he's sleeping and fully relaxed, the muscles obviously relax too and allow things to pass. But, who knows.

Now for mom's medial recap of the day:

Connor seems to have what is called functional constipation. 

Functional constipation, known as chronic idiopathic constipation (CIC), is constipation that does not have a physical (anatomical) or physiological (hormonal or other body chemistry) cause. It may have a neurological, psychological or psychosomatic cause. A person with functional constipation may be healthy, yet has difficulty defecating.

Gastroenterologist Dr. Kennedy felt best approach would be to try 2 weeks of laxative and fiber.  If no improvement, she will consult with his surgeon who performed the pullthrough surgery for his Hirschsprungs.  They’ve had good results with botox injection of the sphincter to help relax the muscles.  Many times children only need this done once; other kids may need another treatment 3 months later when botox wears off.

Dr. Kennedy was able to get us in to Children's Hospital today for a barium enema study of the large bowel to make sure there wasn’t anything else going on.  That showed that there is still a lot of stool throughout the large intestine, but nothing abnormal about the anatomy of the bowel itself.  The doctor who performed the study said the anastomosis site of the pullthrough surgery for his Hirschsprungs looked very good with no restriction or narrowing. (It’s about 1/3 of the way up the bowel from the rectum, just above the sigmoid flexure.)  However, she was going to look more closely at everything on the Xrays later today and would then consult with Dr. Kennedy about her findings.

A few pictures from the day...

This is a picture of the xray after they had finished putting the enema in. The doctor didn't see anything too concerning. The large part near the bottom she didn't feel was irregularly large, and then kind of going up the right side where it looks like a rubber band is around the colon, that's the site of his pull-through surgery at birth, which she thought looked really good.

And that might be my longest post, ever.

to children's we go

I got a call from our NP tonight saying that she got in touch with Dr. Kennedy from Children's GI department and sounds like she must set aside time each week for 'emergency' patients, so we're hopefully going to get in this Friday. Not that Connor is necessarily an 'emergency' case, but not something anyone is comfortable waiting too long on, either. His stools are all over the place, this morning he woke up with a pull-up full (very much on the 'soft' side), then had a tiny one at school, then tonight another episode of near diarrhea consistency. (I again warn you, if you're not at all interested in learning or hearing about Connor's stools, might want to stay off the blog for a few weeks :))

So, we're going to lay off the MiraLax tonight and then maybe give it to him tomorrow night, depending on what kind of day he has at school.

I requested copies of the x-rays which I thought would be fun. When I went to the imaging desk she was certain Connor must have eaten something and that's why I wanted them, which made me laugh. That would actually be much more of an exciting picture, if there was a paperclip or something on here :) Okay not 'exciting' necessarily, but at least you'd be able to understanding something on the x-ray that way.

 

 This is the image from last Tuesday when we first went in. I've attempted to draw where his colon is, and the fact that it's really gray and dense, means it's full. No dark spots which would mean air or gas.

This one was after the enemas, having seen this one helped me 'see' the first picture a little better. You can see more pockets of air throughout the colon, probably easiest to see right under his ribs. Then in the lower portion I've outlined you can see the dark area expand and widen, that's a potential area for concern as to why the colon is so enlarged there.

We feel really good about getting him to a specialist, now we just hope we can figure this out sooner rather than later.

boo and poo.

I'm still about a '1' according to the doctor today, maybe a little progress, but nothing substantial. Boo. (yes, don't worry, I know being only a 1 isn't really exciting or worth getting my hopes up...but...a girl can dream)

And for a 'poo' update with Connor. Nothing. He hasn't done anything substantial since Friday night, so based on a discussion with the NP tonight (also love that she's willing to call after hours), we're increasing his MiraLax dosage tonight and then also sending some to daycare tomorrow to have them give to Connor if he hasn't gone by noon. She's calling Children's GI department right away in the morning and going to try and schedule something for us. The earliest we could get in was March 28th and our NP wasn't okay with that, plus no one up there has reviewed Connor's x-rays yet which hopefully they can do this week. The thought is once they see the x-rays, personally hear about Connor's case, they'd want to see us earlier than that. So, we continue to wait. I guess on a bright note, seeing him and talking to him, you'd never know he was sick or that something was wrong.

Because a post without pictures is boring, here's a shot from this morning sporting his new shirt.  Yes Rachel, he's on the counter again, it's just so much easier to contain him that way :)

XOXO - Happy Valentine's Day!

My friend and co-worker, Michelle, came over the other week to take some photos for Connor's Valentine's Day cards and an early 3-year photo shoot. He of course was a giant twerp and uncooperative, but, we'll chalk that up to being a busy boy :)

So on that note, hope you and your loved ones have a very special Valentine's Day!

out and about

Finally, nice weather! It's nearly 50 degrees today which is amazing and we're trying to take advantage of it. Who knows, could be back to -25 next week.

 LOVING not having to wear a coat.

 Ready!

To briefly update on Connor, there actually isn't much to update. Not sure if that's a good thing or a bad thing. He didn't have a BM yesterday....so....of course my mind leaps to that he's getting backed up again OR it's just the fact that three days of enemas cleared him out and you need a little time to get back to 'normal'. Either way, we started the MiraLax today to make sure that things remain soft. Hopefully hear from the doctor's office tomorrow with a plan of action (when/if we're seeing a GI in the cities, etc.).

Other news, the basement is officially painted! Such a great feeling to have this done. Hoping to get some flooring and trim in the bedroom and bathroom potentially this week and then other than just rolling out some carpet remnants in the living area, we might call it 'done' until next winter :) Nice of me to spare you a picture, right? 

Baby appointment tomorrow afternoon...hoping for even more dilation and effacement...ha. I'd even be happy with 1 and two wiggles :)

Hope you're all enjoying the wonderful weekend.

doctor, doctor

We took Connor back to the doctor today for another x-ray and follow up exam. Thankfully, they think the enemas did the trick and the 'old' stool is apparently gone. The area of concern now is that part of his colon seems enlarged. He's not producing anywhere near 'normal' stools yet, but we think it might just be still from the enemas, plus his stomach is still gurgling and rumbling like crazy so things are still working themselves through.

Next steps:
-watch it for a week or so, goal is to see the stools get to a more semi-solid consistency, and obviously once-twice a day, not 15
-if that doesn't happen, we'll schedule a follow up with the nurse practitioner
-we're getting referred to a GI specialist at Children's to have them review the x-rays, colon, etc. and more than likely have an appointment there as well

So, we're not out of it yet, but at least his colon appeared to be cleaned out. I feel all we do around here is go to the doctor, Bryan had two eye doctor appointments this week, I had one for the pregnancy and Connor had two. I have another pregnancy check on Monday already and hopefully we'll get Connor into the GI before it gets too close to the due date. Thankfully Bryan is at least out of the eye doctor for another three weeks.

girl's night

Once a month three of my girlfriends and I have been getting together for dinner and movie night. We attempted to count it up, we think we're going on 9 straight months, pretty impressive I think! I love it because we rotate who brings the main dish, others then support with a side, dessert, etc., then we head down to Aleta's movie room (she always gets to host :)) and watch our movie. I'm sure there's a little talking in between and throughout :) And Aleta's poor husband Jeff is subjected to all of our discussions, which lately has had a lot to do with pregnancy and everything glamorous about it, since three of us are pregnant. However, he's pretty good at tuning us out I think.

Chilling before our movie starts.

All I can say is EWW. And this was my idea even for a pose.

Could be the first and last picture of myself during this pregnancy.

I'm 36.5 weeks, Angie is 34 and Aleta is 26.

Sarah is 0. But we give her a lot of crap that it could be time for #2 :)

I like this picture of us :) Probably something to do with the fact that I'm hidden in the back.

The preggers.

Not sure when we'll fit in next month's date, could be difficult to try and sneak between Angie and I's due dates, we will see :)

connor update

Well, Connor and I just arrived home after being at the doctor's office for nearly four hours. What we're thinking is going on, is that his entire colon is full of old, hard stool. What is able to make it around this stool is what we're experiencing, tiny, semi-liquid stools, and very frequent. The 'sandy/grit' we're thinking might be just tiny pieces of the old stool that's 'stuck' coming off as this more liquid stool passes. (obviously stop reading if you have no desire to read about poop, colons, enemas, etc.)

He had an x-ray done, and after two pediatricians, two radiologists and our nurse practitioner reviewed and then also consulted with a GI doctor, that's what they're thinking is up. We've been experiencing this with him for at least 6+ weeks, and they think that's entirely possible that it could have been 'stuck' for that long and probably just continuing to get worse (we went through 5 pull ups from 9:45-1230 at the doctor's office). They're also still running tests just in case for parasites, bacteria (more than normal anyways) and to see if there is blood in the stool. At this time, there is no reason to believe that it is connected to his Hirschsprung's Disease at birth. They however do typically see this in older kids that 'hold it in' and avoid going. Not sure if Connor 'knew' that he's been holding it in or not.

For reference, here's a diagram indicating where the colon is. They think it's pretty full from the start of it (marked large intestine) to near the end into the Sigmoid colon.

So...we're to give him an enema every night for the next three nights and go back on Friday for another x-ray to see if we've successfully cleared him out. If so, we'll probably begin conversations about how to prevent this again, or try to figure out what caused it in the first place. The nurse practitioner (Vicky Parsons, for any locals that are curious) was wonderful (yeah for nurse practitioners!) and has a daughter that's been through something similar, so it's always comforting to know they've potentially had first hand experience. She even gave me her cell phone number in case I have questions later today/tonight when administering the enema (there may have been a look of extreme panic on my face when we started talking about enemas...) I'm just so glad we took him in today and started the process of fixing it. We are feeling pretty terrible about all the 'punishing' we've done, taking toys away, etc., but how were we to know.

I asked for a picture of his x-ray, which she wasn't able to give me but said I could request it from the diagnostics department, so I will try that on Friday when we go back.

happy birthday to...

no, not me again :)

This time a big happy birthday to my brother Joe :)

one and a wiggle

Well, I'm officially 36 weeks tomorrow and had the first of my weekly appointments this afternoon. Bryan volunteered to come along so he could finally meet the doctor, and of course the doctor was running behind and then eventually had to go to a delivery so they bumped us to an available nurse practitioner. Everything is good, heart rate was in the 160's (girl?? ha), measuring on track and am actually dilated, let me repeat, dilated, to a ONE plus a wiggle (but no effacement). So, me and this nurse practitioner are now bff's. Kidding, but I think I was due or a day overdue with Connor and I was mmmmmaaaaaaaaaaaaaaaaayyyyyyyyyyyyybbbbbbbbbbeeeeeeeee  (maybe) a one. So, to me, this is amazing progress, my body actually might have an idea of what's about to happen :) Or so I can dream.

On a not so bright note, we're still dealing with Connor's poop issues. Saturday and Sunday he probably had a minimum of 15 BM's each day, and I think there are 7 pairs of underwear sent home today from school. It's not a lot, and it always seems to be 'sandy' or 'gritty', which isn't fun to clean up and obviously makes for a sore bottom. I've scheduled an appointment tomorrow morning, couldn't see a doctor so we're with a nurse practitioner (maybe I'll have a new found love for nurse practitioners?) and I think going into it I have an assumption we'll be referred to a GI specialist or something. My guess is it's something to do with his diet and nutrition, as he'll have days that he doesn't have ANY BM's. So, who knows. My biggest issue right now is that daycare is holding him back from pre-school because of it, and, I get it, pre-school staff probably doesn't need to deal with this, I just am seriously sad for Connor because all of his buds are now in pre-school and according to the teachers he's more than ready for pre-school...except for the poop thing. So, trying to hold back another 'crazy emotional mom moment' for now.

I guess to end on a bright note, and related to doctors and appointments, Bryan had a follow up appointment this afternoon. His sensitivity to light is MUCH better now and doesn't have much, if any, pain or watering. His vision is about 20/30, which is actually a little worse than the morning after (was seeing 20/20), but the doctor is incredibly pleased with where he's at. So, my duties of nurse and chauffeur I believe are over :)

nursery update II

Made a little more progress on the nursery this weekend thanks to Anne and Rachel. I think I'm pretty close to being done, just need the baby now :)

 This side of the room is for sure done, it feels a little less intense (ie crazy busy) in person (or at least I hope).

Decided against a 'real' nursery chair and found this recliner at ShopKo. We made it through Connor's infancy in a brown leather recliner so we should be fine.

The paper lanterns don't really go with the 'theme' (I am still not sure what the theme is...), but I think I've always had this thing for paper lanterns and came across some brown and orange ones (thanks, Aleta!) and couldn't pass them up. Hoping to put light kits in a few of them for a little soft lighting.

Found this make your own mobile on Martha Stewart's site so thought I'd give it a try. 

Somewhat of the view the baby will see. I added some 'contrast' paper to the bottom of the wings since that's supposedly what babies dig :)

 This might be my favorite part of the nursery yet :) 

Yes, the G and the L are missing intentionally (see next photo).

Once we know what Baby B is, I can complete it. If it's a boy, the frame will appear like above, but if it's a girl, the G will be orange and a dark purple-ish L will be placed. Then in the lower right of the frame I'll put the baby's name, birth info, etc in the same color as the letter. Pretty excited about it :)

Update 1/13/12: Finished picture of other side of room below!

lazy weekend of recovering

We've had a pretty low key weekend here, lots of relaxing and recovering, which is of course driving Bryan nuts but at least it's winter. We're going on day 4 for Bryan's surgery, which is supposedly supposed to be one of the worst days for pain, etc. So far he's doing okay, his eyes watered a lot yesterday and he's staying on pain meds so hopefully today is the last of the worst of it.

 schmo playing with daddy's sweet glasses

 

anne made me a birthday cake...had a little problem with the frosting, but it's the thought that counts :)

 Cody and Payten came to play for a bit. 

Madelyn also came over a little later and then Craig took both Madelyn and Connor sledding and on 4-wheeler rides, no pictures unfortunately but Connor had a great time, thank you Craig! (all we hear about is how they got stuck...)

 

make-shift blinds to keep the house dark for Bryan

once it was dark outside we went down to Bryan's shop to look at the equipment, we needed something to do to get out of the house.

Thanks again to Rach and Anne for coming over. I got a few things accomplished in the nursery, pics to come soon :)

Finishing up the weekend watching the Super Bowl at my parents tonight, the only positive the game starts so late on a Sunday night is that it'll be nice and dark out for Bryan :)

sheetrock

You thought I'd spare you of basement pictures...not so much. Sheetrock went up a week ago and the taping process has already begun. Exciting times, here. :)

looking down the steps

 family room

 'bar' (really not a bar) area

 bedroom closet

hallway looking towards the steps, with my little decorative shelf thing...which I have no idea what will go in there yet.