Miracle

I have sat in a room with my doctor and been told that continuing the life of my child would be detrimental to our family, to his life and to consider the hardships continuing with a pregnancy would bring to my daughter.

 This is a doctor that I know well and respect. And he believed everything that he said to me. There was no malice, he was not trying to harm me or my family. He believed that there was no value in life with spina bifida. That this was compassion and offering truth.

I still respect this doctor. And when he sees my son, and hears our stories and sees the videos, he talks about miracles. But my son is not a miracle. Nothing magical happened that made his life with spina bifida worth living. He is not a medical miracle who beat the odds. But in all honesty, with 60-80% of pregnancy diagnosed with spina bifida being terminated, regardless of gestation, in this day and age, in Ontario, in Canada. He did beat the odds.

We beat the odds. To bring love and laughter into our lives. Many things that are expected with spina bifida have happened.

But what my doctors see is the person, the boy, and not the spina bifida. And calls it a miracle

Yes we have spina bifida in our life, but it does not define us. 

Life with my son is so much more than spina bifida, more than hydrocephalus. Life is more than a string of diagnosis’s or a series of hospitalizations.

Life is the big baby belly laugh at 3 months old. The mischievous grin at 3 years old, and the full-on peal of joyeous laughter at 8. Life is about struggling in school, feeling different and falling down. Life is about getting back up, taking one step at a tie and moving forward.

The last 6 months have held our hardest and scariest and most out of control spina bifida (but really hydrocephalus) moments. All of which are not unexpected by themselves.

A shunt malfunction. It feels like we train for this every day. Only it had been 7 years. But we identified it, sought help, had a plan, knew what to expect. No unexpected, it was alsmost like we were newbies in the hospital.

Then a malfunction, a risk after a surgery Plans, contacts, identify and learn about wound infections, treatments, more infections, EVDs (external draining device… so an external shunt), picc lines and more treatment, surgeries and scars. It looks scary on paper. All of these things! These diagnosis’s, these conversations, waiting rooms, recovery, hospital stays and bravery beads. But you take each step back with another step forward. Looking forwards, even if you need to cry and scream in the shower.

Then it all happens again. Step back, fall back, lose control. You can’t fall apart because you need to help hold him together. Everyone asks how you di it. How strong you are, how brave. But you don’t feel strong, you don’t feel brave. You just feel yourself. A bit shattered, a bit scared and angry and jealous. Jealous of all of those other parents who don’t have to worry all the time, who don’t know what it is like to have a diagnosis

But step by step, plan by plan you move get home. You get your boy back, life back and it seems like a nightmare.

Nick says he doesn’t feel brave or strong. But it isn’t about strength and not being afraid. Life with spina bifida and hydrocephalus is not being pushed down, not giving up and not allowing fear to rule, to stop you. Even after 83 days in hospitalizations, 10 surgeries, 13 scars, 3 EVDs, 2 piccs, 4 shunts, and many, many bravery beads (3+ strings)

After all of this, and as life normalizes again you realize that all you need are smiles and laughter. You treasure every day and you love stronger, appreciate longer and just live your life.

That is our miracle.

Botox Update and Problems

We've been having some bladder and bowel issues lately.

Nick had his botox and deflux about 2 months ago. And we were really, really happy with it. For about 6 weeks. Then at Easter weekend I cathed Nick and got all brown urine. Completely brown.
My first thought was a bladder infection, so we started some d-mannose and pushed fluids. And it started clearing, but then he was leaking at home and school. He also started vomiting and had a couple of nights when he would get a really bad headache that would last a couple of minutes and go away.

So I knew that something was going on.

I wasn't really sure what it was. Was it bladder or bowel related?
Had the deflux failed (and that was the brown liquid) or was it a bladder infection. Was it constipation causing a bladder infection? Was it all of the above?

This past weekend Nick started getting constipated and his MACE was starting to leak (which only happens when he is backed up). And his bladder was leaking too, soaking through everything.  So we did what we usually do and gave him more Restoralax. When his MACE stoma started leaking really bad, and Nick was starting to not feel well I thought to clear  him out again with another flush.

So I started flushing small amounts at a time (so it was a mini flush, not a full one). But then nothing would come out. And as I sat in the bathroom with Nick I could see him getting sick. He started throwing up and complaining of a headache every time he put his head up. Then he got really tired and only wanted to sleep.
Of course my mind is flashing shunt! But I also know that the shunt drains in the belly. And if the belly is full (with poop or fluid that won't go through) then the shunt can't drain.

I kept pushing more fluid in and giving it some time (about 300 mL at about 50mL at a time) But after 3 hours I was reaching the end of my things-to-try-at-home and so I started packing my hospital bag and getting help so we could head to the hospital. My thought was that he had a blockage and my attempts at dislodging the blockage were not working. Of course it was the weekend, and all of my medical contacts were not there. But I did email his urology Nurse Practitioner.

Kyle and I sent Katheryn across the street to get my father to come and either drive us in, or stay with Katheryn. I collected the puke bucket and lots and lots of padding incase things started moving in the car.

But as soon as my father walked in the door, things in the bathroom started moving. And whatever blockage passed. Nick started feeling better, but was still really tired. He slept for about 3 hours and woke up feeling a lot better.

It was a pretty scary time for mommy. I didn't know if we should have gone to the hospital sooner, or even what hospital (I later talked to one of the pediatricians at my work and he wouldn't have been comfortable, especially with the shunt symptoms).

In the end we made the right decision, because everything did pass. But during the 3 hours when I could see Nick getting worse and worse I felt so helpless!

The shunt symptoms went away, so everything is draining from his shunt normally again. What I am hoping is that all of the original bladder symptoms will go away now that the bowel is better. But if they don't, I think we are going to have to say the botox is no longer working and start the Gelnique again. This is disappointing, because we really only got a good 6 weeks out of it (and I was hoping for 6 months).

Thanks Bernard!

Happy 13 month anniversary Bernard!

If you have no idea who I’m talking about, you /can read here where I was trying to decide on an appropriate name for Nick’s second shunt.

I thought about celebrating the 1 year anniversary of the shunt, but that didn’t work out so well last time. When Nick had to have a revision at 13 months.

So 13 is the new 12! Seems fitting for a Friday the 13^th baby!

After reading the post from 13 months ago, I am more calm with the shunt right now. It`s never far from my mind, but it hasn`t been on the radar lately (and I`m really hoping I am not jinxing myself). I haven`t measured his head in a while, we are cleared by neurosurgery for 1 year and Nick is behaving like himself.
But at the same time, when Nick wakes up in the middle of the night uncontrollably crying and upset, I mentally pack my bags for the hospital. But when a dose of tylenol and the morning comes and everyone is fine again I feel much better. That being said, I have emailed Nick`s neurosurgeon 2 or 3 times this past year.
I know the day will probably come, but I`m hoping that it`s in the far distant future.
So Bernard is welcome to stay off the radar for a very long time.

I saw (adapted) something today that is very appropriate:

You can`t scare me,

My child has had brain surgery.

Shunt watch

I really dislike shunt watch. I like to think the shunt is nice and happy and working well. I hate the thought that the thing in my sons brain that makes him healthy could stop working at any time, for no reason!

But I also know it is a necessary evil. And while I might wish he didn't t have it, that he was one of the lucky ones who have been able to miss this particular aspect of spina bifida, I have to be realistic that he just wasn't in those odds. That it just wasn't meant to be. He has a shunt and it is there to stay.

Shunt watch has different levels (sorry I couldn't resist these colour watches!). Green (everything is great we are good to go, measure every month or so, know what the symptoms are) Yellow (something is going on, not sure what it is, will continue to observe and measure, contact doctor by email, post on forums), Orange (something isn't right but I'm not sure what, I'm thinking of what I need for my over night bag, who can cover my shifts and where to drop Katheryn, but not packing yet - continue to watch and pray, its not an emergency, contact the doctor directly), Red (call the doctor, pack the bags expect the worst and hope for the rest), Black (heading in, no question we need help, hope and pray).

We haven't actually hit all these stages. Nicks last revision was probably a Red. This past week we had a yellow/Orange. I thought that things were probably ok, but something wasn't right.

Nicks fontanelle closed a couple of months ago. I had just done a whole "assessment" on the Monday - measured and plotted his head, felt everything and it was all a-ok!

Tuesday night, we are all in bed, I'm fiddling with his hair and feel his shunt. What the?!!
His shunt had moved. You could feel the bulb had shifted and the tubing before it. Oh no.

Nick looks up at me, flashes me his smile and goes back to laughing and playing with his sister. OK, deep breathes.
He's acting fine, no swelling or irritability, he's sleeping normally. He's acting the same! I really don't want to bring this happy kid into the hospital and have them tell me he needs surgery!!!

So I waited until the morning and contacted his neurosurgeon, left a message. Waited and watched. And posted in the babycenter forum. I kept silent for everyone else. Didn't want to make it real.

Shunt watch Orange moved to shunt watch Yellow when other moms said they had similar things happen. Nick also continued to be fine, none of the symptoms I was looking for. I kept feeling his head and it still was feeling wrong, but not wronger.

I thought about it, a lot. What if the shunt was out of place, what if he wasn't showing symptoms? What if we did the shunt series (ultrasound, x-ray) and said it had shifted. But he's symptomless. Would I want to wait? Pretty much. And shunt shifting wasn't on my list of signs to watch form
 

About a week later, and firmly in code yellow, I messaged his neurosurgeon again, who reassured me if he was symptom free there isn't any concern.

So we are not in green - yet. Maybe a lime green. I'm not 100% reassured, but I can sleep at night, and blog about it.

I can't say why I was so hesitant to talk about it. Why I was scared to put it in words or writing. But for now everything is good.

More than good! Nick is having a blast exploring and not showing any symptoms of any kind.

We need to talk...

OK we really need to talk about some things. Trust is very important aspect of our relationship and I really feel that you have failed in that department. It is something that we both have to work on and I'm not sure if I'll be really happy until we reach that point in our relationship again.

First of all Kyle and I are great, so are the kids. So who am I 'talking' to? The shunt.

Don't call the men in the white coats to come and take me away... hee hee ha ha ... yet.
My other SB moms know what I'm talking about (I hope).

I feel a bit like I need to get over this. In the range of things that could happen (and will happen) a shunt revision is a walk in the park. (OK Maybe if that park is Regent Park at midnight!) But it just seems to have shaken me and what I thought I knew.

It was one thing I thought I had a handle on, one thing that I knew was there, but didn't really care. It was working, we'd had our year anniversary, we could breathe a little better. Hey I was even measuring his head only once a month! Now we are back to every day.

I guess I am just being naive that it's something I didn't have to worry about. Just one more thing I can stick my head in the sand about. Wow I'm full of metaphors today...
I am back to that gibbering mess where every little cry or sleep has me thinking SHUNT! OK I might be a little hard on myself here. But that is certainly what it is feeling like now. I feel like every day I'm thinking how spina bifida sucks, all my posts have been complaining and negative. Where is the positive?! Where is the hope and dream and this is not that bad! I guess it's there somewhere.

(FYI I put him there - he's not in the pulling up stage yet)

And I'm just not sure how to get past this. I guess time will tell. But what will happen in another 13 months? what will happen in 2 years (apparently the average age of a shunt)? Is there ever a time I can stop worrying about the shunt?! Worry about when it is going to fail us again. Stop trusting it!

So in honor of promoting a trusting relationship I am thinking of names. No I am not crazy. Men can name their ... um ... peter's (or at least tv says they can). So why can't I name Nick's shunt?
Except I am totally overthinking this! I have a couple of names in my head, but not 100% sure on them. It's not like it's something I have to imagine myself yelling "X time for dinner!"
What I've been thinking - considering this is shunt #2, is some B names. But I'm pretty boring, so I have Bob, Bert and Brian. I can totally imagine myself saying/thinking "Oh that Bert, is he acting up again?"
I'll say it again. I'm not crazy.

It's hard being a mom

It's hard being a mom.

It is hard being the mom that is supposed to realize when things are wrong.
It is hard being the mom who is supposed to identify when certain behavior is just recovering from surgery, a shunt malfunction, teething, getting older or whatever. That is asking alot of a mom.

When symptoms of a shunt malfunction are irritability, poor feeding and not as awake as usual and you just got home from shunt surgery and your child wants to be held all the time, not eating as much as usual and cries when you put him down. Is this something to call the doctor and rush back in for, or is it something that is normal for your child to do after spending 4 days in the hospital and now has a big incision in his head!

And I'm the one who is supposed to know what to do.

It can be very stressful at times.

Especially when Nickolas didn't show any of the classic signs that I knew that I was supposed to look for. Yes Nick was irritable for a couple of hours on the Sunday evening/Monday morning - but he calmed down and went to sleep fine. If it was shunt shouldn't it have continued? Did I miss this?!

Yes he had a fever once on the Tuesday afternoon, but no other symptoms. If it was a shunt the tylenol shouldn't have done anything. Did I miss this?!

Yes he had swelling at the shunt. Yes this is a symptoms - but it was the only symptom! And it would get better, he wasn't acting any differently, fontanel felt fine. Should I have jumped at this one earlier?!


I guess in the end things worked out. It just has me second guessing what I thought that I knew. It has me really hoping he doesn't get a fever with teething or a cold because I might be inclined to bundle us all in the car and drive to sick kids (about 60-90 min away) because he is teething.

Because I just don't know anymore! I feel absolutely clueless!

And I hate feeling that way!

I actually divided up this post into 2 - the happier part of it is next

It's just hair...

Because I have always known that another surgery is inevitable, I have considered what I would do with Nickolas' hair when that happens. I know that in the scheme of things hair is really no big deal. In the range of things to be worried about, or think about hair, should be pretty low on the list.
But at the same time it gives me something to do.

I took off Nick's bandage today and I knew I had to do something. His scar, while over the old scar, is bigger, and he has a large bald spot now on his temple. The incision actually looks better than a year ago, nice little sutures instead of that dark marker and glue.

This was a year ago - at New Years, and his shunt was almost a month old. I didn't really take any pictures of it then, I tried covering it up mostly and it took a while for me to look at it without cringing inside.

But I'm glad that Nickolas already had his first haircut and that this wasn't it.
The first time Nick's haircut made him look older. This time I think it makes him look younger.

My original plan had always been to shave his head, take away from the bald spot by just taking all the hair! Then I noticed that Nick plays with his hair when he sicks his thumb. Well, I wasn't about to take away this coping mechanism just because I felt like it.

Then I noticed that Nick really didn't want anyone to touch his head. So any type of shavers were right out of the question. It was back to the old hand-held scissors and as short as I could make it.

I went to this task with a heavy heart. While I had thought about what I would do, I really didn't want to give him any kind of hair cut. We had already done this! It was fun, this was not.

First came Nick's first bath to try to get the blood and pink dye off of him. Alot easier said than done! The soap and water didn't do a single thing to get rid of any of the pink or red! Maybe if I scrubbed, but Nick was not having any of that!

So I just started cutting, one side of his head was completely matted and just a complete mess.

This was about half way. I had finished most of the good side and had to figure out what to do about the other side. If I was trying to make him look and feel better i couldn't leave that side.

I finally got the bright idea to try the Re-move stuff to get rid of adhesive tape. This worked very, very well. Unfortunately I only got one little pad and will need more. But for now I have a finished product:

I guess it just has to be a work in progress.
And it's just hair.

Home!

We got the 'GO' to be discharged home! So then Kyle and Katheryn came to pick us up! Katheryn hadn't visited at all and was asking about us all the time!

I stayed the whole stay and I didn't want Katheryn to come to the hospital and have to leave without us. Also we were in the observation room until the last couple of hours of our stay - so we had a little corner with the crib, a table and an oversized chair. And so did the other 3 kids in the room. It was for kids who needed that extra level of care, so there were always 2 nurses in the room too.

I think that Nickolas missed her too!

There were lots of kisses and hugs (Nick wasn't THAT excited) but she got him laughing - something we hadn't heard for a couple of days!

She's telling him about everything  he's missed at home!

And trying to make him laugh!

We got our discharge papers, packed the car (how did we collect so many bags in just a couple of days) and were on our way home!
One question they kept asking - is he back to his normal self? Well... not really, and that is the question that drove me crazy, I did want to go home, but he was more tired than normal, more cranky than normal. But he finally had something to eat (and kept it down). He was only 36 hours after anesthetic, and had just had BRAIN SURGERY!!! Who wouldn't be cranky and tired after that. Oh yeah and 72 hours in the hospital being woken up every couple of hours, poken and prodded.
How is he supposed to be back to his normal stuff! What if I say yes, and we get home and need to come back? But they seemed to be satisfied with my answers and what they saw.

After an ok night (Nick threw up his milk once we got home and didn't eat much for dinner). Oh oh, is this a symptom, is this an upset stomach, do we call, do we wait?! I think milk was just a little heavy for him.

Nick was more bright-eyed and ate breakfast and his milk. Still very, very cuddly but his old stuff was starting to emerge. And I got a couple of posts off to ask opinions of other moms.

It's so hard when I'm the one who is supposed to know everything. And to watch out for symptoms that may or may not be there, may have an alternate explanation or be the thing you are supposed to be looking for. AND from our experience the symptoms for the revision and the UTI were not the ones that I was originally told to look for!

I was very happy when Nick wanted to start playing. Yup there is my boy!

After surgery

Here is Nick in the recovery room. I am sure the nurses thought I was crazy when I pulled out my camera (I know Kyle does). But it took a while for him to wake up. At first he would open his eyes a bit of a flutter when I called his name. But he was just really out of it.

We were in the recovery for over 2 hours, letting him sleep, watching him sleep, touching him, praying for him, thankful for him.

Something that really gave me a kick and made me laugh... Pink highlights! Yeah Nick got his first dye job! Looks like something I tried to do when I was 15!

The next morning Nick was allowed to have something to drink. After trying different sippy cups (we didn't bring the ones that he liked) I decided to give him his milk in a bottle. I think this is the first bottle Nick has had (we went straight from breast to sippy cup). He thought it was great and kept moving it around in his mouth - no hands!

He wasn't really bright eyed until about 4pm Saturday afternoon. Right around the time Kyle came to visit. I gave him a cookie and he just devoured it!!! Look how bright eyed he is!

When Nick gets tired he sucks his thumb in one hand, and twiddles his hair with his other hand. Well, his hair is up in the bandage. Boy did he destroy that bandage! he kept tearing it apart. We ended up running tape around the whole thing trying to keep in intact for one more day!

We did order dinner for Nick, but he only ate 2 french fries - probably not the best mommy-idea for the first meal. But he kept what he ate down.

This is breakfast the next morning. Nick did make an effort to eat, but he really only ate about 1/2 of this hashbrown. One of his favorite  foods. Not the appetite that he usually has. I guess just time will tell. But his appetite has to be back before we can be discharged.

Katheryn did not visit (I didn't want her to) but we did bring a picture for Nickolas to look at. he liked looking and touching the picture.

We moved to another room and were able to get some more mommy cuddles in a nice quiet room. And had some sleep at the same time.

After some quiet time, some rest and some tylenol we decided to try again for a meal. Something light and something he'll like. Yogurt and PB&J.

Success! He INHALED a giant thing of yogurt - he kept chasing the spoon - a very good sign. And then just tore apart his sandwich himself!

So it was a GO FOR DISCHARGE!!!!

I got so much support for everyone on facebook, and my blog and my family and friends through blackberry (yes we are totally plugged in), and of course people we actually talked to in person. It was very nice reading comments and knowing that there were so many people thinking and praying for us. People who had been there, done that and knew how hard it is.

At such a tough time, just a couple of words really helped.

It's working!!!

Nick's shunt surgery was very successful yesterday. I am on the computer on the unit right now - so no pictures.
They were able to just fix the proximal part of the shunt (the shunt on his head) and the distal part (the part going into his belly) was fine and they didn't need to change anything. The surgeon was very happy with the results. Nickolas was in the OR for about 1 1/2 hours, but then was a little slow waking up from the anesthetic, so we didn't get back to our floor until midnight (we left a shift change - 7pm for the surgery).
Last night I was able to get a little bit of sleep, again in the chair next to the bed. We are staying in the observation room, not quite sure why, I think staffing or room issues, not Nickolas issues. The nurses are super nice, so we are fine with that.

Nickolas slept all last night - very, very soundly. A little too soundly for my taste but I think it was the last 2 days catching up to him, and the anesthetic wearing off. Today when he wasn't sleeping he was busy being grouchy.
He did get to eat a little bit in the morning, but then he had to be npo (nothing to eat/drink) in case he needed to be sedated for the CT. The cat scan that was supposed to be done around noon. Which turned into 3pm, which turned into 5pm when Nickolas would not settle and sleep. Finally they did it with him fussing and little bit, but they were able to get the shots they needed.
I swear the surgeon almost beat us to the room. To tell us the good news! The shunt is perfectly placed! Yes, he used the word perfect!

So as of this minute Nickolas is busy munching on a cookie, finished his milk and is once again showing his pearly whites off to everyone with his super-duper smiles.

Thank you for EVERYONE for their thoughts and prayers. They really mean alot to me.
I don't know how I've made it through the last couple of days, but I think that when I get home I am laying down in bed and not getting up for ANYTHING for at least a couple of days!

Hopefully tomorrow I will post some pictures so you can see Nick's smiling face for yourself!

Oh Shunt!

 Feel free to substitute any letter for the ‘un’.

Apparently the 1 year anniversary doesn’t really mean anything. After my last post about our midnight adventures on Sunday night/Monday morning, Nickolas was pretty much back to normal. We kept watching the boggy part on his shunt, but his fontanel was still fine and his behaviour wasn’t all that different.

I was still sure he was teething, but nothing was showing up. I contacted the neurosurgeon by email Monday morning, but didn’t hear anything. No other symptoms so I wasn’t that worried. Really I haven’t checked his shunt site, and it’s all covered with hair now.

So it was back to work for me Monday and Tuesday night, sleeping in the day. Tuesday afternoon when I got up, Nickolas felt very warm to me. So I took his temperature. 40°C (for my American friends that is 104°F). That’s never good! We gave him Tylenol immediately and his fever came right down.

He cheered right up, his caths were still fine. Is this still teething? That is quite high for teething. But he was acting fine, so I didn’t call into work. He was fine staying home with Kyle. At work (where we ran off our feet and didn’t break all night!) I talked to the paediatrician that was on call with us, and she said we should call the neurosurgeon at Sick Kids and go in.

I knew that was what she was going to say, but I also knew that he wasn’t showing any signs of a failure or infection, but swelling at the shunt and fever were on the list. I could not find the neurosurgeon number, and Nickolas was home sleeping soundly.

I got home from work and immediately took Nickolas in the see the paediatrician (we already had an appointment) and surprise, surprise we were told to come in. So off Katheryn went to daycare and Kyle, Nickolas and I loaded into the car on our way into Toronto.

Writing the next day I can’t tell you how many hours we waited. But it was LONG! At first Nickolas was very impressed with this wrist band thing. He kept looking at it, and touching it!

We were in a room pretty quickly, and even saw the neurosurgeon fellow pretty quickly, but she said she was very busy and would be back. So we waited, and waited and waited.

We found out that Nickolas had a UTI – that explains the fever. And it was just waiting for the x-ray and the CT scan and they took blood. They attempted an IV because Nick was npo (nothing to eat or drink) in case they needed to do the shunt that night. Nickolas has really crappy veins. Really really bad. So we waited to see if he actually needed the IV after the first 2 attempts failed.

Nickolas was very hungry and was willing to eat ANYTHING!

But he was still happy.

So after a CT and x-ray they found that Nick’s ventricles were enlarged slightly and that the end of the shunt which is supposed to sit in the ventricles was out of place. So shunt revision here we come!

So not only does he have a UTI, but he also needs to have his shunt fixed! Poor guy! And I’m stubbornly sticking to the story that he is teething as well. Next time I look at 3 different choices of what something could be – I should think of simpler things!

So 3 attempts later we had a satisfactory IV (in the foot) and a potential plan. We were admitted back to 5C – where Nickolas recovered from his MMC repair (the initial surgery to repair his back) and his shunt placement. He remains npo, IV, vitals every 2 hours! Lets just say I had a very grumpy child who went between being very irritable that he was awake and couldn’t eat, and sleepy because he kept getting woken up. We are in observation with 2 other kids and nurses always in the room. I had a comfy rocking chair to try to catch up on my sleep – Only been awake for 36 hours!

Nickolas’ shunt surgery was considered an add-on. So he was probably going to be done at the end of the day unless something changed. But no, he still couldn’t eat. He was also started on an antibiotic for the UTI and the ditropan, but no Restoralax (Miralax) because it had to be mixed with too much water.

I think I’ve been driving the nurses crazy with my obsession about his bowels. An ER nurse told me that on the range of things that I should be worried about, his bowels were on the bottom of the list.

Definitely not said by someone who is a parent of a child with spina bifida.

We had just started winning our current battle with constipation when all of this hit, and I just know that when all is said and done I’m going to be sent home with a child that is going to be sooo constipated!

 

My only hope is that because nothing has gone in, stopping the Restoralax for a couple of days will not be as disastrous as I think it will be.

At the moment it is 6:30 pm on Thursday and we have been waiting for the OR ever since! NPO, vitals and eye checking every 2 hours, cathing every 4 hours (I’ve gotten students to do it all day) and a baby that really hates it when mommy is not at his side. Pretty much where I have been. And running on 50 hours of minimal sleep (I might have gotten about 2 hours in total last evening and night).

Wait! We just got called to the OR. I’m going to find a way to post this from here. And good news for my next post. I think I’m too tired to be worried (that much) and have been very happy with all the love and support I’ve gotten from people who have learned what is going on. I wish we weren’t here – but I’d much rather be here and getting things fixed, than at home wondering!

 

Thoughts and prayers are appreciated and thankful for!