Monday, February 4, 2013

Palate surgery pics and experience...thus far...

I'm going to do my best to recount what's happened the past few days.  Connor turned 10 months old the morning of his scheduled surgery.  He was born with the complete cleft palate meaning he didn't have much of a hard or soft palate (roof of your mouth).  He had a prosthesis placed back in August to try to stretch some of his palate towards the middle of his mouth so the surgeon would have more to work with.  Dr. Siddiqi wasn't able to give us a definitive time schedule for the surgery because he wouldn't know what had taken place with the prosthesis until he took it out.  ..........the basics of a palate surgery is that what skin is in the roof of the mouth is sort of shaved and cut, pulled and sewn in the best way they can to create a new palate.  To look in Connor's mouth, it looks sort of like a patchwork quilt...once we can figure out how to take a great picture we will post it. the common person, we take for granted our palates.  The palate keeps us breathing well, speaking well, swallowing much.  I described the palate surgery pretty simplistically but there was alot involved and took just over 3 hours from us handing Connor to the anaesthesiologist and Dr. Siddiqi coming to speak with us in the waiting room.  .....time will tell if Connor ends up with a tear in the palate or if he'll need additional surgeries.  Most likely he will have what's called a lengthening surgery around the age of 4 or 5. of now, I believe the surgeon was simply happy that he could repair both the hard and soft palate.  We have an appointment to schedule for the next week or two for the plastics team to check out their handy work.   ..........for now, here is pics and my best to report what we and Connor has been through.

Connor had his last bottle of thickened formula before bed on Tuesday night around 730 or 8pm...before bed.  He was allowed the formula until 2am.  He could then have pedialyte through his g tube until 715am...2 hours before we were to arrive at admissions.  For anyone at Primary Children's hospital receiving most surgeries, you head to Same Day Surgery.   Once there, you sign in, someone makes sure you've completed any presurgery information needed (you have or have not insurance and have put a down payment on your portion of the bill). this picture, Tristan was heading off to school while Connor was getting some pedialyte in his allotted time.  Because Connor is an aspirator (fluid going to lungs when swallowing), we always worry about giving him thin liquids.  Also, if you remember, he has sever reflux and tends to aspirate anything that may come up. ......I'm always wondering if it's good to give the pedialyte so his belly feels full and thus he's not as hungry....or is it bad because the minute the anaesthesiologist does his thing, even more fluid is introduced to the lungs.    ........also something to note, Tristan sort of irritated/hurt me during our hospital stay.  I only received one text from him and it was sort of forced by Mikey. It made me sad, to say the least, but after talking about it...Tristan just said he was scared.'s easy for me to forget that Tristan lost a sister as much as we lost a daughter and he has his own fears.  I tried to tell him that Connor is on a different spectrum than the things Ireland went through...but really, I get scared too.  ........others may forget Tristan is also my baby boy......I sure don't.  

Connor just set up in front of me while I hold all of his feeding supplies and try to occupy him for the half hour we had pedialyte going into his tummy.  .....he's such an easy baby.  I didn't sleep hardly at all the night before with a gazillion fears and he usually, proves me to be a silly worrier.  He never acted like he needed a bottle or food...he seemed just happy we were giving him toys, he was moved from the kitchen to the living room so I could sit more comfortably, and he got to play with Sawyer's "computer".

He was pretty excited  about this email thing....

Sawyer was starting his transformation to Mom is totally giving more attention to Connor so I'm going to be irritated with her.  ......I love this boy more than you can imagine....and boy, he is smart.  He knew nags were packed, lights were on earlier than usual and something was up.

Mr. Cool himself.  I love that he does these cute little things like wearing hats without a fuss and putting his hands in his pockets.  

Anyone paying attention to Utah weather knows that we've been getting hammered this season.  The morning of surgery was no different.  Mikey had counted around 8 slide offs before we were even 5 minutes into our interstate commute...umm, I was nervous enough already!  ....we had just dropped Sawyer off with some friends and he was hopefully going to have a good day with their granddaughter.  Not only, did he have fun but I understand he was picking up a few words and sort of following her around wherever she went.  I would have loved to have seen all that.

Connor pretty much slept the entire ride until we got to Salt Lake City.  This is the road opposite the state capital...we were heading down the hill into the LDS mecca...aka the temple and man, traffic was awful.  We ended up having to call because despite us giving ourselves double the amount of time for the drive...we were still late.  Luckily, everyone else was too. here is where I show I have no skills....this is where I would love to share the picture of Connor pre surgery.  Actually, I'd love to share a few ....but fact is, Mikey took all of those pictures and even though I have some he shared onto my phone...I have no clue how to access them and put them here on this blog.  Just know he was happy, adorable, and terribly cute.  Admission doesn't take long at all once you're at the hospital.  About a week before surgery, you take a call that lasts about 10 minutes and histories are shared, and then insurance info and any upfront payment (which because blue cross blue shield hadn't preapproved, we had to put a small payment down...thank God for credit cards and really, we've had no problems with BCBS as insurance...expensive new year, yes...expected, still, yes.....worth every penny, no doubt).  Once you're done with you over the call chit chat a bit of paperwork is sent via email.  You fill out a ton of information on your baby (other surgeries, medical issues, doctors, medicines, etc.) and then print out what is called an express pass.  The day before surgery you are called and given information on what is needed for your baby up until surgery (basically medicine and nutrition needs) and then you're given the time to arrive for surgery. thing that happens when your little one has alot of surgeries too, you start knowing way too many hospital staff.  The surgery waiting team knows us as "Connor Brady's parents".  It's funny because even though they know you're waiting while your baby is under the knife, they ask how you've been.  It's nice.  They are nice.  We happen to know who we call "ole Ronny is Ron Smith from the Eagles and has a Superbowl ring.  ...come to think of it, maybe it was another team...but he's Ron Smith...he has a Superbowl ring. That ring is big.  He, however, is not as big as you'd think.  Though he's very sweet and soft spoken.  He gives a hoot about you and your kiddos.  .....The blonde older woman is extremely personable and likable.  She remembers you and makes a point to ask how your baby is.  .............anywho,  cool pictures should be here....but my blogger knowledge only goes so far.

This is Connor the night after surgery.  .......Connor's surgeon spoke to  us about 2pm in the hospital waiting room to let us know that everything went perfect.  He fixed what he wanted to fix and Connor would soon be ready for one of us to go see him in the post op room.  ......Normally, you see the doctor in the waiting room and about 10 to 15 minutes later, your name is called by 'ole Ron or the sweet blond, and then only one parent can go back to see Connor.  Of course, it's an unwritten rule that I've lost 10 lbs in worry fat just waiting to see him, so I get to go back there.  Well, it was 45 minutes before we were called back there.  ........because of the Pierre Robin and issues that come with having that special birth syndrome, Connor always has a tough time with intubation and getting his breathing back on track.  He ended up needing oxygen for the entire night after his surgery.  After that initial hour post surgery his needs for oxygen were just what is called blow by meaning an oxygen mask was not on his face but near his face.  Little by little the mask was pushed away from him until he no longer needed it.  It was always there for when he'd cry because inevitably, oxygen goes down fast when you're crying from pain.  I'm not going to lie....the first six hours post surgery are hell.

I didn't really take any pictures those first six hours.  During that time, it was comforting that was needed.  He slept alot and was on three doses of whatever major drug they give immediately post op and he was maxed out on morphine.  He was miserable and you knew the second he hurt.  I distinctly remembering being pissed at God a bit again because I wasn't sure what to pray anymore.  I didn't want him in pain, I didn't want him to need anymore surgeries ever, and yet, I know he's going to have more and there is nothing I can do but hold Connor, be grateful he is my baby and in my arms, trust that he has the best doctors available to us, and simply tell him I love him.

As he was waking, there was alot of swelling.  He had all of his monitors on, his iv for fluids, and medicine, his g tube wasn't really hooked up until the morning and the dreaded "no-nos".  The no-nos are arm braces to keep his hands from his mouth.  Every few hours they come off to massage his arms a bit.  He's supposed to wear these for 2 weeks.

This is where he was starting to become a little alert.  This was the very next morning.  Not even 12 hours had passed and he was up.  There was a little blood from his nose.  The stitch coming from his mouth to cheek is where the tongue was placed out of the way for surgery and to keep the airway open during the night in case of swelling.  Just a few hours later, a resident came in and removed the stitch.'s possible you think he looks not so good me, he does.  Initially, there was a horrible amount of blood.  He slept with cloth diapers under his head so they could be changed often.

Connor was actually attempting a smile here but we learned that didn't feel so hot.

I just got a new phone when we switched over from Verizon to Tmobile.  Much cheaper but the service is admittedly awful in comparison.  My wi-fi connections work great but first and foremost, a phone should be a reliable way to make calls.  I've dropped calls out of nowhere and there are certain areas in my house that need to be avoided.    ...........anywho, there was alot of cuddling going on the first morning after surgery.  He was very much in a daze.  He started cycling in lorotab and morphine this day.  He also had his first formula fed by g tube in several months. 

Poor love.

Mikey cam as soon as my one friend came to the house that morning to watch Sawyer.  It's always nice to know someone willing to come to your messy home and watch your other baby.  He ends up napping on schedule and seems happier.  ......Connor was simply glad to see his dad.  This was about lunch time and you can see Connor had the stitch removed and his swelling has gone down BIG time.  He's still in a daze but he's little by little becoming more alert.

Aww....smiling hurt still but he was trying.  Notice some redness starting to come in his cheeks here.  Later, too much later, that night actually....we discovered Connor was having a major reaction to his lorotab.  Granted, it was just itchiness but it was horrible.  His cheeks, nose and later his entire face looked flaming red.  .

He was having spurts of energy and then major grogginess by the afternoon...what I'd say was about 24 hours post surgery.  By this time we had tried to give him a normal feeding of thickened formula through his haberman bottle....he just screamed and cried and didn't want it near his mouth.

This is where you can see his cheeks and nose getting even redder.  He had some really agitated moving and rolling around.  None of us, including the nurses had the thought he was uncomfortable and just miserably wanting to scratch his face.  I can't imagine how that had to have felt and it sure makes me feel horrible looking at this.  ...we'd offered another bottle later that day and though he actually put the nipple in his mouth, next to his cheek, the minute he bit down and had formula touch him, he cried and wanted nothing to do with the thing. So here, he's getting another bolous feed.

By 4 or 5 the very next day, we had a mover on our hands.  Connor was rolling around in all these wires and when we were asked what kind of toys he enjoyed, Mikey let them know he loved wires.  

Our little guy started moving enough that he wouldn't keep any blankets on and hospital baby robes are worthless, so we decided to dress him in his long johns.  Here he was getting tired again.

The pajamas may have lasted about 2 hours.  Connor had begun spitting up alot.  I mean a ton.  Mikey had gone home for Sawyer and Connor and I settled down for the night.  At some point, he spiked a major fever and was puking chunks.  I'm still not certain what those chunks were when he had nothing on his stomach for over 48 hours, but chunks he had.  A high fever was freaking me out.  After having had a dose of benadryl when we figured out his reaction to so much lorotab, we'd also had Connor get off the morphine and start using tylenol and motrin to combat his fever.  I was so worried about his fever because every single door down our hospital hall had placards for the baby having an infectious "thing" exaggeration at all here.  Connor's room was the only one where you could enter having just washed your hands.  .......I made it known that I was really worried about Connor somehow contracting whatever these other sweet babies had.  We had mainly been going to the UofU (connected to the children's hospital by a long hall/bridge) because we heard the entire hospital was a virtual bug.  EEK!!!!

Connor started leveling off to just having a low grade temperature and we had him down to no more lorotab.  He had really started to be himself and was even uttering his little baby sounds.  I was mamama again.

there were major bursts of energy and then major bursts of needing some love and napping.

The rails of the bed were raised.  I allowed him to take the no-nos off.  They seemed cruel and I was right there (maybe a little guilt helped from the whole he's squirming because he's itching thing from lorotab)....either way, lucky palate repair baby to have a mom that is guilted into saying I'll watch his every move and just put the no-nos on if he starts really trying to throw everything in his mouth.  

The IV was removed because his g tube feedings were going better.  This was only the 2nd day out from surgery and I wanted to take Connor home.  Yes, he had a mild temperature but he was on medicine any parent can give.  Yes, he was still spitting up more than he should, but he has GI issues period.  A social worker was called, my nurse agreed the hospital was not the place for Connor to heal, because the leading doctor for his surgery was a plastics surgeon that knows us and has confidence in us as parents, we were allowed to come home. also didn't hurt that I had my pediatrician's home number if I did need anything.

Connor finally got a much needed bath.  The no-nos reappear on occasion due to him being an average 10 month old and things sort of naturally gravitating to his mouth.  We'd offered several more bottles to no avail.  I called Mikey to say please pick us up and he informed me he was sick.  WHAT????  .....long story short, Mikey was blacklisted...quarantined...banned to the guest bedroom.  A friend was called, and we were out of there!!

Did I mention that 2 days after Connor's surgery just happened to be Sawyer's Birthday?!  We somehow managed to make a quick sheet cake without even having eggs (we used a banana) and or having candles (we used a grill lighter....note for future, 2 year olds cry when you stick 2 flaming grill lighters in their face and are singing at the top of your lungs trying to mimic a cool party effect).'s a toilet.  Imagine this has several months before it gets actual use but he's discovering, it sings. worries, family sent cooler gifts....and he got a few things that Connor seems to love even more than he does.

Post flaming candle/grill lighter cake.  the cake was still a bit warm but I atleast had two kinds of frosting and he did like that.   ........he soooooo got jipped.  Sucks but we can't have a party right now and as Connor is healing from this surgery...he has another small tongue clipping and new tubes surgery coming next month.  It's a family affair only in our house.  Sort of lonely at times but luckily we love and like each other.

Connor and Sawyer had recorded messages from their aunt Sarah.  They both seemed to really love this!

The first night home was a tiring one.  Mikey did don a mask to help out a bit.  My sleep has been less than perfect to say the least.  I've been fortunate if I've gotten 4 hours a night since Tuesday the 29th.  ....Connor was up several times needing comfort and rocking.  Sawyer was also up this particular night.  .......Saturday morning, 3rd day post op, Connor started having diarrhea.  I changed 5 of them in a matter of maybe 4 hours.  We also noticed there was no pee.  ........he was getting dehydrated.  He has been offered his bottle several times a day but doesn't want it even near his mouth.  It's awesome he has the g tube because instead of having to be intravenously fed, we can use our own pump....the drawback is always the pesky reflux.  no less than 4 times have I now been asked by a doctor if Connor has a nissan (the surgical procedure where the stomach is twisted).  No, he does not.  It is a last resort for us.  ............I have a feeling it will be discussed in the not too distant future whether he starts taking his bottle or not, we'll explore that option then.   .......anywho, Connor started even puking up foam.  His pediatrician just had us start with the pedialyte.  That evening he finally had a small pee.  We thought about taking him back to the hospital but figured we'd see how he did through the night with a formula/pedialyte mix going through his g tube.  Connor was still just his normal active self one minute and then fussy and tired the next...both pretty normal after having a major surgery.  His face was extremely dry and flaking but he'd also had that horrible reaction to his, we stayed home.  I got up several times for meds and comforting and noticed there were no pee diapers.  I called MIkey down from his quarantine area and let him know it was time for me to take Connor back to Primary's.  As we were getting Connor into his car sear, we smelled that nasty baby smell and figured we'd better change him before I left.  What do we see but some pee in his diaper.  ....this time I decided I didn't want a day of second guessing myself.  Connor has been begging to get his gunky lung sounds anyway.  I know in my heart I know what Connor needs more than anyone else but I'm also of the knowledge I don't have an ounce of professional training and so have the sense to know when I need a consultation with an actual nurse or doctor.  ........We went to the emergency room and Connor had another wet diaper.  I had all of Connor's post operation paperwork and all of my notes from what he'd been getting through his tube and what had been going on with his spit ups, pukes and diaper action.  The doctors felt he was probably turning over a new leaf as far as dehydration went though they did flat out ask if I wanted him to go ahead and receive IV fluids.  WOW....I think only other special needs moms get how often major medical treatments are put into our hands.  It's hard to convey my feelings on these things because I always have an angel on my shoulder reminding me what is life and what is not life.  ........anywho, two wet diapers.  I felt he's getting what he needs from pedialyte so had help with a feeding schedule of two more cycles of pedialyte and a then half pedialyte/ half formula until this morning.  ..........he's had alot of poopy diapers since then and frankly the poop has been the kind where it's in the front of his diaper too so I'm not sure if the pee things is back on track or not.  He hasn't been acting too out of sorts so I'll give him a few hours this morning (his 5th day post op) and see if I need to call his pediatrician and request an order for an electrolyte test or not. the emergency room, there was only slight concern about his lungs.  The doctors asked if he'd had a swallow study and the old nissan question.  Then I was asked if I wanted an x ray done....yeah, in my hands again.  I asked back if it would make a difference what they saw and what they could hear.  ....Connor is unique in that fluid in his lungs moves big time.  He could lay down and sound awful and then like a doll with the flip eye lids, you bring him and he sounds ok.  ........the doctors seemed to think if they did see anything, they'd just give him time to see what he did on his own.  Time.  Umm.........we'll go without the xray then.  I'll give him time at home and see what happens over the next few days.
..........soooooo, the emergency trip was not a total waste.  I rested easy knowing that we'd done the right thing the night before.  I wasn't so worried all day Sunday.  I was giving assurance that I was a good mom nurse to Connor.  I was told had we brought him in Saturday night, he would have surely been readmitted to the hospital and began an iv right away.  .....very glad we didn't have that done.

Sunday afternoon.  Connor has continued being his smiley self.  He has been very cuddly and I'd be hard pressed to think a stranger would have a clue what this little guy has been through not only in the past week, but in the past 10 months.   ..........I absolutely adore this picture.  

Connor took some fake mashed potatoes by mouth yesterday.  He loves those flaky fakes.  It wasn't a ton but he's lost some weight so you can bet he'll be offered a bottle again this morning as well as some rice cereal with maybe a little fruit mixed in.  His stomach is even more sensitive right now with the gazillion med he's on (i didn't even go me, there is a schedule written out on our fridge for when he gets what....zantac, prilosec and erythromyacin as always...tylenol, motrin and lorotab if needed, antibiotics .....and ear drops...yeah, schedule...and scheduled feedings...we are clock watchers again)  .............once again, it's all worth it.  HE is more than worth it., anyway, he ate!!!  That was awesome.

My Beautiful boy, Sawyer...aka, Soybean.  He was about breaking my heart yesterday.  He'd had to spend Saturday night away from home since Mikey was sick and we felt there might be another hospital trip for Connor and I.   ........while Sawyer had a blast with our friends, he was less than stellar with the fact I wasn't around.  He holds grudges with me when I'm away like this week.  I don't blame him.  He's my baby too.  ........and yes, it totally hurts my feelings when he acts like he doesn't want me.  I had to take him to bed screaming and kicking.  He screamed through the first night book I read him.  ..........I was trying to ignore him until he calmed down.  .........finally, I got him a blankey and just hugged him a ton and smooched all over his face.  He chilled out and I asked if he wanted one more book.  He did.  He fell asleep.  He cuddled into me....I hope I'm forgiven for not being around as much this past week.  .........I love him like crazy too.

..............I'm sure that I left things out that I had wanted to share but I wrote this over the course of some hours from not sleeping.  I'm a worrier.  Even on meds, I can wake up with a racing mind.  I have alot to do today.  Follow up appointments, cleaning and other mundane chores, and keeping and eye on Connor's health and keeping up with my legit two year old. will also be Sawyer's first day in preschool.  He'll have a twice a week, two hour preschool time.  I'm excited for him to get some time with other little ones.   ........I can not get over the out pouring of love and prayers we always receive on Connor's behalf during these times.  Thanks so much.  It is not a little thing.

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