Update from Boston

Hannah and Aiden have now been in Boston for over five weeks.  The separation has been difficult for everyone.  Aiden wakes up asking for his Daddy and brothers in the mornings, and Ethan and Evan go around the house trying to figure out where Mommy and Aiden have gone.  Evan will lay his head down on the floor outside the door to our room and try to see through the crack under the door and call “Mommie?  Mommie?”  The Child Life Specialist at Children’s Hospital was able to find a laptop for Hannah to borrow for a couple of days, so that Aiden could see pictures of Daddy and his brothers.  He was so excited to see them, he started clapping!  We will all be so glad to be together again, hopefully soon.

Speaking of Aiden…as you know, he underwent a major surgery a week ago to repair the intestinal malrotation, remove his appendix, remove a urachal remnant,  and insert a surgical j-tube.   The surgery went very smoothly and only took approximately 5 hours, thankfully much less time than initially estimated, and therefore less time that Aiden had to be under anesthesia.   

After spending several nights in the ICU to get his respiratory and pain issues under control, we were all (including his doctors) pleasantly surprised by how well he seemed to be recovering and we were making great progress getting him up to his baseline on j-tube feedings.  He had some low-grade fevers following the surgery (to be expected), and on Tuesday, developed a small area of inflammation or (we thought) perhaps a little bit of infected fluid drainage behind the incision, but it seemed to respond to antibiotics and appeared to be improving.

We were making preparations to be discharged from the hospital on Saturday (today); however, yesterday (Friday), Aiden just didn’t seem to feel good.  Even after adjusting his pain meds, he didn’t want to move or be touched.  His heart rate was up and he seemed to be working hard to breathe.  By Friday afternoon, his fever returned with a vengeance.  Within 30 minutes of the Tylenol wearing off, it had shot up to 101.5 and Aiden’s whole body was burning up.  The incision area all around the surgical j-tube had become swollen and inflamed, and was very tender.  The doctors ordered a number of tests and also changed the antibiotics, as he was obviously not responding to the one that he had been taking.  Fortunately, although he still has the fever and infection, he seems to be doing better today, and we are all keeping a close eye on the infected area.  Please, please pray with us that Aiden will respond to this new antibiotic and that it will completely wipe out the infection.

We are all hopeful that the intestinal repair will help to solve the motility issues and relieve the pain that Aiden has been experiencing.   As for the longer term plan: after extensive discussions with our doctors here at Boston Children’s, we now have a basic timeline for the near future.  Hannah and Aiden will have to remain in Boston for at least another week, until the beginning of June, for follow-up appointments with the aero-digestive doctors and the surgeon.  The doctors believe that it is best to wait at least two months (eight weeks) before attempting to repair the laryngeal cleft.  In the meantime, we are hopeful that they will be able to return home for the next seven weeks or so and spend some time together as a family while Aiden recovers.  This is largely dependent upon the insurance company, so please pray that everything works out.

And last but certainly not least…on this Memorial Day weekend, we want to remember and express our whole-hearted gratitude to those who have sacrificed so much and given their lives to preserve our freedoms and liberties, so that we can continue to live in this great country.   May we do our part to honor their memories and keep this nation free, and may God continue to bless America, land of the free and home of the brave.

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