Reflections: An Interesting Year

     2017 has come to an end.  This New Year's Day 2018 is a day of reflection on what has been in the past year and looking forward to what is to come in the new.  We never know what a year will hold for us but, we are always hopeful that it is always filled with many blessings, good tidings and great joys.  January 1, 2017, I never would have thought that after a few good years of no hospital stays, and little to no illnesses, that Kerstin would have a year with several stays and a procedure.  Yet, we ended the year partying and celebrating 16 years of a blessed life of growth and more growing to come. 

     I have in the past, commented that "it is always good to go to Children's and leave on the same day", we have and continue to have our share of those days.  Thankfully, most of them have been in and out days.  However, in July and again in November, we did not.  The year was well, appointments were also going well.  Kerstin had a good year.  Then there was July, Kerstin got really sick with a summer cold that just would not seem to break.  She was taken to her pediatrician to start the usual rounds of meds and even a chest xray to only saw what was feared...pneumonia.  So, an antibiotic was started.  Though, a week later Kerstin still was not better we went back to her doctor and on examining her, he determined that her lungs sounded worse than the week before.  He thought it would be best if he called her pulmonologist.  We sat and waited for a while for the doctors to consultant to be told that they had a room for Kerstin already at Children's and that her doctors there thought it would be best to get her started on a rapid rounds of intravenous medicines.  We ended up there for a few days.

     Backing up to September, a new specialist was added to Kerstin's medical team, a new gastroenterologist.  This would bring changes to meds as well and talks of how to get missy's gut stable and rumination under some sort of control.  Things moved quickly and at times it seemed to quickly for me;  the constant consults with the GI specialist and surgeon turned to placing a GJ tube in place of the Gtube.  The procedure was scheduled and the tube was placed.  Kerstin now has a feeding pump again this time there will be no boluses, just continuous feedings.  

First visit with new team member. 

Checked in at IR

Post GJ placement

Hours later, all smiles and ready for the new journey.

     Sweet November...and what a story it has for us.  I am not fond of Novembers at Children's of Alabama.  Yet, this is where we found ourselves and the week before Thanksgiving.  Kerstin had gone to therapy the Wednesday before and the day just seemed to go downhill quickly.  She started having issues with her feedings and was actually vomiting food, which should not happen with jejunum feedings.  After calling to GI, they stated that she needed to be seen in the emergency room there at Children's!! After spending a few hours there, I was hopeful that we could go home but felt like it would be the case.  In fact, we would spend a week there.  More pneumonia, seizure activity as well as the stomach issues. 

Back at Children's

Resting after a very long day. 

Comfort aids

A mother's saving grace(s)

     In spite of all of those before mentioned instances, the year was well and I am certain 2018 will be be even better!  

Looking forward to what's to come.
What will happen if we don't give up?  Endless possibilities!

More to come in the New Year!

It's happening so quickly!

     "It's happening so quickly!"  That was my response after receiving a call from a radiology nurse at Children's Hospital on last Monday, October 2nd.  With a very calming tone, she wanted to speak with the parent or guardian of Kerstin.  After pleasantries were exchanged, she told me that she was in fact calling to schedule Kerstin's appointment to have her G-J tube placed.  I must admit that I was caught a bit off-guard by the quick turnaround. I was even more surprised when she stated that the procedure could be done this Friday the 6th or Wednesday or Friday of next week.  I said, "This Friday? It's happening so quickly!"  I paused, I guess she thought I had hung up or something.  I grabbed my datebook because another one of Kerstin's appointments had been rescheduled to this week, I told her that Friday would not work for us. 

     Believe it or not, the Sunday before, I had mentioned to my family that I felt like there would be a call from either the doctor or the hospital about scheduling the procedure.  So I was mentally preparing myself for this by writing down possible dates.  This did not become real until Jenna (nurse from radiology) called.  Real did not become so emotional until the call.  The tears came...it is real, again.  No matter how minor it may be said to be, it does something to the emotions because, Kerstin is my child!  My girl child!

Dates of possibility.

     So, on today, Kerstin will be having the procedure to replace her g-tube with a g-j-tube.  Kerstin is strong.  This new feeding tube will only help her even more.  Having to have the g-tube became touching but it was for her good and this g-j-tube will also be for her good.  

More to come...

Rumination! GI findings

     Rumination!  What is that, you ask?  That was my question as well.  So, rumination is defined as having a deep or considered thought about something and it is also defined as the act of chewing.  Makes sense!  Chewing...smacking, that is what Kerstin has been doing.  Her gastroenterologist (GI doc) also said that rumination could be behavioral but, it would be difficult to determine if that is the case with Kerstin.  I am no medical expert but, I am a Kerstin expert, I do not know if it is actually behavioral.  This has been ongoing for a while, when it started she would do it as soon as I would be done with her bolus and close her mic-key button.  It would be ongoing for 20-30 minutes after. 

     This process becomes so bothersome to Kerstin especially when she does it to the point of gagging/ retching and sometimes actually vomiting.  Which would lead to aspiration as mentioned in "The Summer of New Things -- Things Anew!".  Kerstin has been placed on medicines for reflux, which is also a problem and with this medicine, we had hoped it would help with the chewing/smacking.  Originally, that was what the chewing was thought to be.  

     Well, after meeting with GI and he took some time to watch Kerstin receive her bolus, and immediately began to ruminate.  He informed us that a rumination specialist would be on board in December and he would like to add him to Kerstin's care team.  About a week after her appointment with GI, Kerstin has this lime green residual, which she has never had before.  It was especially surprising since she rarely ever has residual in the mornings. I call to inform her team about this, I was pleased that they were not alarmed by it and was told to keep an eye out for it.  She did not have any more that day or the next but did about four days later. 

     In the meantime, there had been some back and forth phone conversations with her doctor.  He personally called to let us know that he had been talking with her surgeon and they decided that a somewhat common procedure known as the fundoplication may not be ideal for Kerstin.  He went over three options with me: 1) changing her gtube to a gjtube 2) accept the rumination and watch for aspiration or 3) esophageal disconnect surgery.  Two of the three sound like another procedure, something I always want to avoid with my child.  Sometimes, some things are unavoidable or inevitable. 

     Her doctor was once again so patient with this mom.  He told me to talk things over with the family and let him know if we had any questions about any of the options.  Well, that was last Thursday, things were talked over with the family.  I was reminded how I fought against Kerstin even getting a feeding tube placed and quickly learned the ropes, she is thriving and otherwise healthy and doing well with her boluses.  Her getting a gjtube would not be too much different.  I even "phoned a friend" whose daughter has a gjtube to get a firsthand perspective.  Talking to another mom gave me comfort.  Everybody wanted to know when I would call the doctor back, I wanted to wait as long as I possibly could but, had a true gut instinct that he would call me soon and he did.  He called on Wednesday to see had we talked and if I had more questions.  I did and once again, he patiently answered each and everyone of them. 

     The plan now is to meet with GI, surgeon and nutritionist to get Kerstin's health plan, feeding plan and procedure in order.  Procedure...yes, another procedure!  This too will be for her good.  This means, I have more to learn in order to be and do the best I can for Kerstin! 

Smiling through it all! 

Resources: 
G to GJ -- Feeding Tube Awareness
G-J Tube Care --Cincinnati Children's 

More to come...