Unexpected Challenges

More unexpected challenges and an opportunity to share the wonderfulness of AFCH… An update from Isabelle’s Momma.

These past two weeks have not gone as smoothly as we would have liked.  Two steps backwards is what we have been facing.  Isabelle is back in the hospital and is not feeling very well so I will make an attempt to fill everyone in. Last week Thursday, she was admitted for an acute asthma attack. What was unusual is that she has not been diagnosed with asthma until now.  This was difficult to hear, as it is yet another layer to her health problems, but we were able to tackle it and the pulmonary doctor was very good at assessing what was going on.  For the last three weeks, she has just not been able to breathe like normal.  Every step has been labored.  Every breath has been somewhat difficult. We are thankful to now have some clarity and now her breathing can be managed and treated.  That is a wonderful thing, for her to be able to take deep breaths, to be able to walk and not feel winded.

One incredible turn of events, however,  was that Isabelle was given the opportunity to be interviewed during the Radiothon raising money for AFCH.  This was a very proud moment, as the hospital wanted Isabelle to share her story of health challenges, and how AFCH has helped her in this fight.  The two radio stations, 93.1 Jamz and Q106 each took turns asking her questions.  She did a great job and very eloquently told her story and shared the wonderfulness of the nurses on P5, the amazing doctors including Dr. O’Connell (GI), Dr. Syverson (Rheumatology), and Erin Marriott (Cardiology) and the support of everyone at the hospital.  The hospital then chose Isabelle to be the patient representative to read the final tally of funds raised during the three day Radiothon.  So many businesses supported this fundraising endeavor.  So many people called in and gave money.  And the Radiothon was able to raise $665,295 to go to much needed programs supporting the sick children here.  It was a proud moment to be a part of, and we were once again amazed at Isabelle’s strength and ability to touch others with her story.

We came home from our short hospital stay thankful for answers to her breathing problem, and thankful to be coming home as we had tickets to see the “Amazing Tori Kelly” in concert on Saturday. What a fantastic night it was.  This is the second time we have seen her.  She is inspirational, singing an empowering message to girls.  Here is just a snippet of her lyrics: .”It’s all about what you choose, the way you live your life depends on you”  “Change other people’s lives, give hope for even a minute”.

Tori Kelly holds a special place in Isabelle’s heart.  Tori’s last concert in Wisconsin was in Milwaukee at the Pabst Theater in October.  It was really one of the last fun memories that Isabelle has, of rocking out to Tori, singing, dancing, enjoying life to its fullest, without any gastroparesis.  Shortly after that concert, she got sick.  So, when we heard that she was coming to Madison, we knew we had to go.  It is a gamble, planning ahead for anything, because you never know what life it going to bring, how she will feel.  So we were super thankful to be out of the hospital, singing at the top of our lungs to Tori on Saturday.

On Monday, she was not feeling great and by the evening, she was in incredible pain.  I called the GI doc on call, not knowing what to do.  He recommended going to the ED, so off we went.  It wasn’t long after being there that they discovered Isabelle now has an ileus of her colon.  An ileus, also called a paralytic ileus, occurs because the rhythmic contraction that moves material through the bowel stops. Her bowel is not working right now. No sounds can be heard,  It is sleeping.  Patients with an ileus are treated with supervised bed rest and bowel rest.  An NG tube is placed through the nose into the stomach to suction out the contents continuously.  So now we wait.  We wait for her bowel to wake up.  And we wait for her wonderful doctor who is our GI specialist to get back into town on Monday to give us some direction.  It looks like Children’s Hospital of Wisconsin will be our next step.  They have a motility expert there who might be able to help her.

This has been an unexpected turn of events, not what we foresaw at all.  But we are thankful for the staff at AFCH, for caring for Isabelle and for managing her pain.  We are thankful that there are other opportunities for help for her .  And we are thankful for all of our friends and family.  We could not be on this journey without all of you.  And Isabelle will keep “changing people’s lives, giving hope for even a minute”.