Category Archives: surgery

First GI appt — Sam

Today was Sam’s first appt at the GI office.  He was seen there rather urgently due to the number of vomiting episodes he has had recently. We were hooked up with a rather nice and thorough APRN.  She works very closely with one of the GI doctors and in fact clears everything with him before we even leave.  I’m not used to that.  Every other APRN I’ve ever dealt with has just done our stuff and sent us on our way without consulting with a doctor in front of us!


She is pretty sure Sam has something called cyclic vomiting syndrome (CVS) but we will have to rule out all other causes of chronic, frequent vomiting too.  He will be scheduled for and abdominal ultrasound and upper GI series.  He had bloodwork today which he was none too happy about!!!  He will be started on a medicine called periactin that is used to try and lessen the frequency of his episodes and then will be given the antiemetic zofran as needed to try and ward off a cycle once one has started.  All in all it was a good visit. 


We now just have to wait for the calls about the bloodwork results and the appt for the next tests.


My daughter is my hero and some thickener updates

The title says it all.  Jennifer is my hero in so many ways.  She has been through so much in her short life but she just rolls with the punches and moves on.  Now, don’t get me wrong, she isn’t all peaches and cream or anything.  She is a typical toddler/almost preschooler.  She’s stubborn and boy does she have a temper!!!  But despite all that, at the same time she just blows me away.

When we first found out at 2 that she was aspirating and that she had to go on nectar thick liquids she didn’t bat an eyelash.  I tried the stuff and man is it nasty.  Then a few months after she turned 2 we found out about the milk and soy intolerance and had to radically change her diet.  Her past favorites, like goldfish crackers for example, were no longer allowed.  She only half batted an eyelash at that one.  Then we had to go up to honey consistency on her liquids and she gave us trouble at first but then after a week got used to it and acted like it was no big deal.  Have you ever tried to drink something as thick as honey???  Can you even consider something as thick as honey still a liquid beverage???

We won’t even talk about her multiple hospitalizations, procedures and recent surgery here as they are in other posts except to say that she has always handled them like a champ.  Including going back to her recent surgery in my arms while singing to the anesthesiologist!!!

Her most recent intolerance is to fructose, AKA sugar, resulting in another diet change.  At first it was easily managed by just taking juice out of her diet (yup, you guessed it, didn’t bat an eyelash!!) but she then started having symptoms again.  So, onto another source of sugar out of her diet…….fruit snacks.  This is a kid who begs daily for some fruit snacks.  We actually used 1 fruit snack (not 1 package) for her for potty training too as she couldn’t have the mini m n m’s.  She’s been potty trained for about 8 months now but still begs for that fruit snack every time she pees!!  You can imagine how I thought it would go when I told her no more fruit snacks.  But the little trooper she is, I just told her that they were hurting her tummy now and that she shouldn’t have them anymore and she proudly announced to Daddy that she was having no more fruit snacks “because they hurt my tummy”!!!!  She really is my hero.  She’s just amazing.  No tears, no fuss, no nothing. 

And on the occasion that she does give me a hard time about something she isn’t allowed to have then I just ask her “what will happen if you eat that??” and she will tell me “it will hurt my tummy” so then I ask her “should you have it then?” and she’ll say “No” and move on.

On to the thickener updates…..I make her 24oz of VERY watered down juice at a time (20oz water to 4oz juice) and use 8 tbsps of thickener in it to make it honey consistency.  Just after her surgery we had to go up to 9 tbsps as she was coughing a bit due to the changes in her throat anatomy.  But after a week we were able to go back to the 8.  After unsuccessfully trying to go to 7 I went to 7 tbsp + 1/2 tsp and she did that successfully for 5 days.  Yesterday we moved down to just 7 tbsp and she did great with it. 

We are supposed to thin a bit more each 4-5 days until we get to either her next swallow study which is Oct 9 or until we get to regular thin liquids and then have the swallow study.  So far, so good.  Dr. Rahbar did say she’d have some trouble here and there (like we did at first try when I tried to thin too much) but the hope is to be on regular liquids by the swallow study.  70% of kids who have the cleft repair surgery are.  I’m praying we are in that 70%!!

Laryngeal cleft repair and post op visit

Jennifer had a type 1 laryngeal cleft that was diagnosed in Feb 2008 at Children’s Hospital Boston.  This is basically an anatomical abnormality in the larynx that allows food and/or liquids to enter the windpipe when they are swallowed.   For Jennifer the problem was with liquids.  After failing several swallow studies she was on honey thickened liquids.

Her surgery was done endoscopically (through her mouth) on July 14, 2008 by Dr. Reza Rahbar.  He is a wonderful man and will always have a special place in our hearts.  She stayed one night in the PICU to make sure that she didn’t have any airway problems immediately or in the first 24 hours post-op.  Here is a picture of her in the ICU just after she woke up:

and another picture of her PICU room:

She had no complications post-op and was eating several hours after surgery!!!  The following day she was moved to a regular medical floor for one more night.  She was so happy to get there as she was quite tired of being confined to the PICU bed.  On the floor she was allowed to go to the playroom to make crafts and walk around etc.  A couple more pics:















Finally on going home day she was given a bit more freedom and was allowed to venture outside to the garden they have there.  That is one of her favorite places in that hospital along with the bubble area.  Here are some pics of those areas:
















 After being discharged she insisted on going back out to the garden to eat lunch.  There she got to have a visit with the clowns which she loved:



She has since had a post op visit where Dr Rahbar scoped her throat to look at the stitches and said her healing looked great.  From here starts the journey of weaning her thickened fluids.  For more of her day to day story during the actual surgery you can visit her caring bridge site too.

Surgery went well and some updates

Late posting this but all went well with Jennifer’s surgery.  She had her laryngeal cleft repair done at Children’s Hospital Boston on July 14th.  It couldn’t have gone better.  She spent two nights in the hospital there.  No complications or setbacks.  Thank the Lord for that!!  For the entire medical story click on her caringbridge site link in the sidebar.

She has already had her post-op appointments too.  We are to start weaning her thickness of her fluids around the beginning of August.  Then her next swallow study will be in early October.  Wish us luck with the weaning!

The other bit of news that we have received is that she is possibly fructose intolerant.  She had been having loose stools, bloating and gas for awhile and went for a fructose breath test which was abnormal.  They aren’t sure if the thickener she has to have in all fluids to not aspirate them played any role in the abnormal results though.  For now we treat her as if she is fructose intolerant and keep sugar out of her diet as much as possible and then the GI doc wants to repeat the test in a few months once she no longer needs thickened fluids.

My poor girl.  Now add sugar to the things we have to limit along with no milk and soy.  Uggh!!!  Though at least with the sugar it is a limit rather than a total elimination like the milk and soy.  She seems to at least have it pretty mild as taking all juice out of her diet seems to have helped a ton.

I think that’s the updates for now.  I’ll try and update more often.

Benjamin & Samuel’s stories

This blog, of course, cannot only be about Jennifer!!  I did say in my profile you’d hear about Ben’s ears and Sam’s allergies and heart.  So, I figure I’d better give you the background on those so you know it when you get the updates.  

Benjamin had his first ear infection at 5 months old along with a bout of bronchiolitis.  He had to do breathing treatments then too.  He got better and we figured it was just a winter bug and all was over.  Unfortunately, that was just the beginning for him and his ears.  He had another ear infection at 7 months old.  The poor thing would be inconsolable with these ear infections too.  This started a pattern of ear infection leading to an antibiotic then a recurrance of the ear infection about 2 weeks later.  

After 4 ear infections in a row like this he was put on a preventative antibiotic that he took daily to prevent further ear infections to get him to summer when ear infections are supposed to go away.  All the while he also had a chronic yellow-green runny nose.  This would also clear up with each course of antibiotics and restart once they were finished.  He stayed on this daily preventative antibiotic for about 6 weeks.  Within 4 days of being taken off it his nose started again and within 8 days he had a raging ear infection with a high fever.  At this point he was sent to an ENT doctor.  

At 11 months old he had his first surgery where he had a set of ear tubes placed and he had his adenoids taken out.  The adenoids were removed in hopes that they were harboring the bacteria that was causing the chronic runny  nose that was then leading to the chronic ear infections.  His nose did continue to run for awhile even after the adenoids were removed and he was tried on several allergy medicines without success.  Eventually after his second birthday it finally just spontaneously stopped.  He continued to get ear infections even with the ear tubes but he was a different child with an ear infection at this point.  No longer was he in terrible pain and no longer did we have to do antibiotics by mouth.  Now just a few drops twice daily into his ears.  What a welcome relief.  

We were lucky that he was one of the kids that the tubes stayed in instead of them falling out quickly.  Though this luck later turned into them really staying in!!  At 3 1/2 they had to be surgically removed!!  This was due to if they are in too long it can lead to scarring and perm hearing loss.  At this point it was noticed that his tonsils were quite large too.  Feeling that eventually he would have to have them removed due to some sleep apnea issues he was scheduled for surgery again.  The ear tubes were removed and the tonsils were removed. He had a rough time for about a week with tons of pain, thrush, refusing to eat and drink, and some nerve issues in his jaw but then went on to recover quite well.  

In Ben’s style about 4 weeks later he got an ear infection.  This was quickly followed by a second one so a tube was placed again.  Unfortunately, only the ear that got the infection had healed from the first set of tubes so only one tube was able to be placed.  Several months later the second ear drum finally healed and sure enough (just as Mom had predicted) he got an ear infection in it.  Knowing his history we didn’t wait and immediately scheduled him for a tube in that ear too.  So he is now 4 1/2 and on his second set of ear tubes and doing quite nicely.  Hopefully this will be his last.  Hopefully this set will stay in as long as his first set did (but then fall out on their own!!) and by then his ears will have grown enough to be able to drain on their own without more infections.  Only time will tell I guess.

Samuel is Jennifer’s twin brother.  He had reflux as a baby too but fortunately outgrew it by 8 1/2 months old.  He spent some time on prevacid too but didn’t have nearly as hard of a time as Jennifer had with it.  When Sam was born he had a heart murmur.  Being 5 weeks early this wasn’t entirely unexpected but it wasn’t heard by the pediatrician on his first day of life but was heard on the second day.  To just be safe they did an ultrasound of his heart.  It showed that his foramen ovale was still open.  This is common in preemies and we were told it should close in his first few months. 

 He was hospitalized along with Jennifer (full story in last entry under Jen’s story) at 3 weeks old and they were both given another heart ultrasound since they both still had murmurs and fevers.  Both still showed patent foramen ovales.  Again, ok.  At each well check up the pediatrician and I would talk about their murmurs and Jennifer had outgrown hers somewhere between 4-6 months old.  Sam never did.  

Just prior to his second birthday we saw a different pediatrician for a sick visit as I thought he had an ear infection.  He looked in his ears and said they looked fine but then spent a long time listening to his chest and then referring back to his chart.  At that point I knew something was coming!!  He said that even if he still had the patent foramen ovale we shouldn’t still hear the murmur from it.  He then wanted him to have another heart ultrasound.  This time, however, he wanted a pediatric cardiologist to read it.  The others hadn’t been read by one.  He made it clear that he didn’t want Sam seen by the cardiologist, just that he wanted his ultrasound read by him.  We had the ultrasound done about a week later on a Thursday and that Friday afternoon one of the other pediatricians from the office called and said that the cardiologist’s office would be calling to set up an appointment for Sam to be seen by the cardiologist sometime in the next month.  And I was like, “what, I thought he wasn’t supposed to be seen by the cardiologist?”

Tuns out he has a condition called a subaortic membrane or subaortic stenosis.  It is pretty rare but it is a heart defect and needs to be followed by a cardiologist.  We saw the pediatric cardiologist in August 2007, the same month he turned 2.  He actually told us that this isn’t usually diagnosed until between ages 2-3 as this membrane needs time to grow and cannot be picked up until it grows big enough to be seen.  For now he isn’t symptomatic with it so he just needs to be followed yearly with heart ultrasounds and visits to the cardiologist.  If he were to ever become symptomatic then he would need heart surgery to remove the membrane.  They don’t routinely just do surgery to remove them because of several reasons 1) it is a big surgery that comes with risks and 2) the membrane tends to grow back.  

Now, for Sam’s allergies.  This one is easy!!  He had the same chronic runny nose like Ben but minus the ear infections so I kinda figured he wouldn’t really respond to any allergy meds either and put it off awhile.  But after going through tons of boxes of kleenex in a month I took him to the pediatrician.  She suggested claritin and after 2 days on that I have barely seen anything come from his nose again!! Yipee!!  So, he obviously has some sort of environmental allergy.  Hopefully it is only to pollen and not dust and dust mites like his momma!!  Though his nose started much sooner than pollen season so only time will tell I guess.