NG Tube Reflections

As Callie's time with a NG tube thankfully comes to an end, I have been thinking about our experience with it over the last 5 months (wow, I can't believe it has been that long).  Here are a few random thoughts that have come to mind:

I dreaded getting the ugly tube at first mostly because it was the first outward sign of Callie's special needs.  I did not look forward to going out in public with the tube because I did not want people staring and asking questions.  Up until this point people always just stopped to say how cute Callie was, etc.  We could not go to the grocery store without someone saying something nice.  These compliments helped ease the pain of our reality.  Now suddenly it was very obvious we had a problem.  Just one week after being home from the hospital we hopped on a plane to Puerto Rico and were very public for a week.  At first I was very aware of the second glances, especially as we spent time in airports, but then I noticed people were not looking in a bad way.  Instead they were mostly concerned and curious.  Several people asked if the tube was for oxygen.  With the exception of one person on a bus in PR who starred and then abruptly asked "What is wrong with her?", everyone was polite and caring.  Within a couple of weeks I did not even think twice about it when going out and could care less what anyone thought.

I am not sure if I mentioned this before, but there is a reason I am not a nurse.  I am not good with medical "stuff" and easily get queasy.  I am the last person who I thought would be able to do something like drop a NG tube into a little nose, down a throat and into a tummy, and then calmly check for proper placement.  But I keep learning on this special mom journey that you quickly adjust and surprise yourself at just what you can do when it comes to caring for your special child.  Soon I will be learning how to change out a G tube.  Today that makes my stomach turn and yet soon I will become an expert.  Crazy.

A huge thing I learned is how difficult it is to keep a NG tube in place on a 1 1/2 year old.  Going into this I was not warned and obviously did not do enough research to figure this out.  I would like to share this to hopefully help someone else.  Callie thankfully is mellow and has never seemed annoyed enough with the tube to intentionally try to get it off her little face.  Instead, it comes off when her fingers catch it while she does something like rub her eyes when she is sleepy or rub her nose when she has a cold or an itch.  You can be holding her and watching her like a hawk and it can still come out right before your eyes in an instant.  The worst situation is when she has a cold and her nose runs, which gets under the tape.  It is nearly impossible to keep the tape in place when this happens and the tube can (and does) come out very easily.  The tape also gets loose during baths or going to the pool.  It is a real pain.  This is a huge problem when it comes to her sleeping.  I quickly learned while we were in the hospital that you have to watch her during the night especially when she is feeding.  If the tube comes part of the way out during a feed, formula could get pumped into her lungs and cause major issues.  Just before we were released from our longer-than-planned hospital stay in April, a kind case worker informed me that Callie was eligible for nursing care through Medicaid.  She explained a nurse could come and stay with her at night to make sure she is safe during her feeds which would allow me to sleep and better care for her during the day.  After 9 days in the hospital with no sleep from watching her at night, I accepted the offer and unbelievably we had a nurse come over to the house just hours later that very same night.  I quickly learned this care was a huge blessing.  Five months later I am still feeling blessed and am happy to report that we have two good nurses who have been taking excellent care of Callie this whole time.  Miss "Y" looks after her during the weeknights and Miss "Z" comes over on the weekends.  They have grown to genuinely care about Callie and she in turns adores them.  They spoil her rotten when putting her to bed and I am not sure what I am going to do when they are no longer here!  I wanted to make sure to share this in case it helps someone else learn their child is eligible for nursing care.  If so, I hope you are able to get wonderful, caring nurses like Callie's.  

And now our time with this type of feeding tube is coming to an end.  On Wednesday we will check into the hospital for an endoscopy (to check for any EoE flare ups) and PEG tube placement.  We anticipate a 2 - 3 day hospital stay.  I am dreading the whole G tube thing and yet very much looking forward to just getting it and moving on.  I am focusing on how much tube feeding is helping her grow and develop.  The progress she has made since March has been incredible and we look forward to seeing her continue to thrive!  Thank you for your continued thoughts and prayers!

Little Daredevil

We have a little daredevil.  Well, we actually have two of them, but I am writing about the littlest.  I mentioned before that Callie loves to swing (the higher, the better).  She also gets a kick out of being bounced & thrown around on the couch and enjoys any other gentle roughhousing you can come up with.  She laughs and laughs, and then signs "more"!  At therapy Callie was recently introduced to their trapeze and she LOVES it.  Her therapist holds her hands on the bar, swings her out over a big pillow and then lets her drop.  Callie originally did this as part of an OT session.  Now she begs her PT and ST for the same activity since we work in the same gym right next to the trapeze for all of her sessions.  The other day during speech therapy she kept eyeing the bar, made her way across the mat to it, and signed "up".  There was no way to resist her clear request!

On the charts!

Callie had a weight check at the end of last week.  I am very happy to report that she is now officially on the charts!!  Here are her stats at 20 1/2 months of age:

Weight: 20lbs, 15oz. (4%)

Length: 30 1/2in. (8%)

Head: 45 1/2cm. (16%)

Callie's weight to length ratio is 25%.  Her pediatrician was very pleased with these numbers and we are thrilled about her recent growth and development!

New Skills

Callie has been a busy little bee this month and now has a couple of new skills!  The first is using her index finger to poke.  I have to admit I did not even realize this was a milestone with Owen.  There is so much that he did that I took for granted.  Things are different with Callie and we celebrate every single tiny little accomplishment.  I learned from her OT therapist that using her index finger to poke and point is indeed a milestone and it is typically met between 9 and 12 months.  In the last week or so (at 20 months) Callie has discovered her little pointer finger and absolutely loves using it.  Especially with her little pop up toy. 

Her second new skill is getting from her tummy or back to a sitting position!  This is a pretty big one for her.  She has been able to sit for a while now, but has not been able to get to this position from laying down.  All of a sudden in the last week she has figured this out and is quite pleased with herself when she makes it up.  Today I entered her room after she woke from her nap to find her sitting up in her crib!  When she saw me she tried to pull herself up on the side!  So we are finally dropping her crib down from the newborn level after all of this time.  This milestone has been especially exciting and encouraging.  

Our little girl continues to amaze us and we are so thankful for everything little thing she accomplishes.  

"Baby!"

We just started introducing sign language to Callie at her speech therapy sessions.  During these appointments we introduce signs and sounds to her through play.  This week she surprised us by immediately picking up the sign for "baby".  She was shown a book with pictures of babies and then shown the sign.  She immediately started imitating her therapist and we were amazed!  It was yet another moment that brought me to tears.  Here is our baby signing "baby" for the first time:

Decided and Scheduled!

After a long week of mulling over whether to get Callie the g-tube PEG or button, and to Nissen or not, we have come to a decision!  We are sticking with just a PEG for now.  It feels so good to have this decided.  I did a great deal of research and was able to connect with quite a few moms online to get more opinions.  It was interesting to learn people seem to feel strongly one way or another about the Nissen.  Apparently it is a controversial procedure.  In the end I decided Callie's case does not seem severe enough to warrant the surgery at this time.  If she worsens it is possible to get it in the future.  By choosing just the PEG, we can minimize risks and avoid surgery for the time being.  But I will definitely be swapping it out for a button as soon as we are cleared to do so!  I do not look forward to how the PEG is going to stick out and get in the way.  I pray it does not bother her and she does not play with it.  Hopefully she learns to crawl on all fours soon because I do not think combat crawling is going to be comfortable with the PEG sticking out.  It will be interesting to see how this all works out.

As of today we have everything scheduled.  Callie will be admitted to the hospital on August 31st for the placement of the PEG as well as a follow up endoscopy to check for any inflammation of her esophagus from the food she has tried so far.  It will be a 2 - 3 day stay.  Two weeks following the procedure we will have an appointment with the EoE team to review her case and decide how to move forward with additional foods.  So far she has been cleared to try apples and then bananas.  Apples were a bust.  I think Callie must be the only person who does not like applesauce.  For two weeks she resisted eating pureed apples and apple juice.  We also gave her pieces of apple to put in her mouth, but she mostly just chucked them on the floor.  This week we introduced bananas and I am happy to say she has taken a liking to baby pureed bananas!  Today she finished one stage 2 container of Gerber bananas over 3 sittings.  That is her current record for quantity in a day (since we started solids again this month).  It is wonderful to see her willingly open her mouth and accept food.  There is much celebration at the end of her little meals and she seems happy that we are pleased.  

I feel very much at peace with our g-tube decision and am now counting down the weeks until we can get rid of her ng-tube!  

Little girl with her little backpack

When it is time to eat, Callie's tube hooks up to a bag of formula which is connected to a small pump that fits into a little backpack.  Here is a picture of her all hooked up.  Isn't she looking grown up?

Decisions, Decisions

Well, it was another busy week.  In addition to therapy, Callie had two doctors' appointments.  The first was with Dr. Im, a physiatrist or doctor of physical medicine.  He specializes in pediatric rehabilitation medicine.  My special mom friends all take their little ones to see him and I was told he is excellent at predicting a child's physical abilities.  At our first appointment with him last March he advised Callie has an "excellent long term motor prognosis".  He felt she will be able to walk and perform independent life skills.  He added it is more difficult to know how she will be cognitively, but we might have a better idea after she is two years old.  This past week at our second visit he was again positive about Callie and was very pleased with her recent growth and development.  He studied her movements as she sat and played with a piece of paper and said she looks very good and typical.  There is nothing abnormal about how she used her hands, for instance.  There is no spasticity, stiffness, etc., she is just very delayed.  This is about as good as we can hope for at this time (besides not being delayed!), so I left feeling good.

Our second doctor's appointment was with Dr. Kim, a pediatric surgeon.  I made the appointment to discuss Callie's g-tube placement.  I recently learned there are two types of g-tube placements.  Here is my limited understanding: The first is a PEG tube.  PEGs are placed endoscopically by a GI doctor with just mild sedation.  Pros include less risk because surgery is not required and it is very unlikely that the tube can be pulled out.  The PEG can also be swapped out for a button after about 3 months and again, this does not require surgery.  The major con seems to be the long tube that sticks out of the abdomen.  It gets in a way and I would be concerned about how this would impact Callie's physical abilities, especially since she is combat crawling now.  The second type of g-tube is a button.  Button placement requires a surgeon and general anesthesia.  The main pro is the button is very low profile to the abdomen and very inconspicuous.  When not hooked up for a feeding, the button does not get in the way or get pulled.  Callie would have no problem with her army crawling.  Luckily the surgery is now laparoscopic, but with any surgery there are plenty of risks and this is the major con.  Also, the button can get pulled out when hooked up for a feeding.  If this happens during the first two weeks or so, it will most like require repeat surgery to get it back in place.  I went into the appointment leaning towards the button, but half way through our conversation I felt we should probably stick to the PEG to minimize risks.  Until Dr. Kim brought up the Nissen procedure.

He noticed Callie's impedance test results were abnormal, meaning she experiences reflux even though it is not acid reflux (because of her Prevacid).  He asked me if she spits up often and I said yes.  I explained I have to carefully plan her therapy sessions around feeding times because if she moves much for at least two hours after she eats she spits up.  This is becoming a big problem now that she is anxious to be mobile and is combat crawling around the house.  There are always spit up messes to clean up.  Dr. Kim went on to say Callie seems to be a good candidate for a Nissen procedure.  This is a surgical procedure that takes the upper part of the stomach and wraps it around the lower end of the esophagus.  Stitches hold it in place and the procedure is permanent (meaning they do not go in and reverse it when she gets older).  When the stomach contracts, it closes off the esophagus instead of squeezing stomach acids into it.  Assuming everything goes as planned, a Nissen would cure Callie's reflux and she could stop taking Prevacid.  Dr. Kim further explained he has seen reflux worsen in kids after they get a g-tube because of how it changes the angle of feeding into the stomach.  It is harder to get the Nissen after a child already has a g-tube so they prefer to do it first if at all possible.  Dr. Kim also said if we opt for the Nissen, then that would make our tube decision because Callie would already be in surgery and he would place the button at that time.  So then I started feeling a Nissen would be beneficial to Callie and we would therefore also opt for the button.  That said, I felt very nervous and uncomfortable about all of the surgical risks, especially surrounding the Nissen.  There are lots of organs in that area and he went over the things that could go wrong.  I left the appointment feeling unsure of how to proceed and disappointed because I was hoping to have a decision made and a date scheduled.  Instead I am going to take a little time to research and get a second opinion from at least Callie's GI doctor.  

This is a tough decision.  Please pray we choose what is best for Callie and that all goes well.  

Allergy Update

We finally received an update from the allergist last week.  Callie had blood drawn for further allergy testing at last month's EoE clinic appointment.  The results were misplaced and then with the holiday weekend we did not receive an update until the middle of last week.  She tested NEGATIVE for everything!  Can you believe it?!  I started getting excited and hopeful that perhaps she is not allergic to everything, but the allergist explained why the tests showed conflicting results.

The blood test tested only for IgE-mediated allergies (immediate sensitivity involving allergic antibodies).  The patch test revealed delayed sensitivities which are not associated with the antibodies -- it is a different immune mechanism at work.  The tests can, but do not always overlap in results.  Apparently some people have significant reactions to one and not the other, yet they are still are meaningful in terms of allergies.  Neither test is 100% accurate, as this type of accuracy does not exist in the allergy world.  The test results are used simply as a guide.  

At this point we will stick with the patch test results and assume Callie is just not a very classically allergic child.  We will gradually introduce the foods that came back without a reaction (green beans, carrots, corn, peas, apples and bananas), and then begin with foods that showed some reaction.  

To recap, this what we show Callie has a [delayed] allergy to: soy, wheat, egg, turkey, beef, chicken, oats, pork, potato, and milk.  Even though the blood test (IgE) showed a negative reaction to the following: apple, banana, beef, chicken, cod, corn, egg white, milk, peanut, pork, rice, soy, wheat, green bean, oat, pea, and barley.

It is confusing to get conflicting results (patch positive, IgE negative), but I guess this can happen when testing a different mechanism of allergic response.  Overall I feel a little encouraged to have some negative results and hope this means Callie's allergies are not extreme.  Only time will tell.  We re-introduced apples to her last week as her first solid food since getting her tube at the end of March.  I am happy to report she is doing okay with them.  She is not exactly an eager eater, but she will open her mouth for the spoon and will eat up to a half of container of stage 2 pureed apples.  She seems to have retained her oral motor skills and can move the apples around and swallow properly.  This is very good news.  I look forward to her feeding therapy sessions now that we can finally use solids again.  Hopefully Callie will continue to accept apples and maybe even start to enjoy them over the next two weeks or so.  Owen loves to demonstrate how he loves applesauce, so hopefully she will soon follow suit.

Neuro update

This week Callie had a check up with her neurologist Dr. Pearl.  I have said it before and I will say it again... I really like Dr. Pearl and am so glad Callie is under his care.  Despite being the last scheduled appointment of the day he took his time with us.  He was genuinely happy to see how much she has grown and pleased with her development.  He was thrilled that her recent EEG was clear and that she has now been seizure free for 10 months.  We reflected on how much of a difference a year makes.  One year ago Callie had infantile spasms and we were making tough decisions about her medications.  Now she is seizure and mostly medicine free (except for Prevacid).  We talked about seizures and he said the worst is most likely behind Callie.  Yes, she will probably have to deal with them again, but they will probably be partial seizures which apparently are not as bad as IS.  It would be uncommon for her to experience IS again at this point.  Overall it was a positive appointment and for that I am very grateful.