A year ago today......

Allie one year ago - 14 months old and the size of a 6 month old

Exactly one year ago today, Allie was sitting with her team of 6 doctors at the Children's Hospital of Wisconsin.  This was the day that I finally stood up for my little Allie and requested she get a feeding tube.  I had very little knowledge of feeding tubes and what all went into getting one or even feeding her with one but I knew that if Allie didn't get a feeding tube, she would eventually die of starvation. 

On December 8, 2009, our new Occupational Therapist through the Early On program in Michigan, came to our house to meet Allie for the first time.  His first words (after introducing himself) were, "Allie looks awful".  I was shocked by what he was telling me.  I thought he was here to help me deal with her eating and hoping he would be our next miracle worker.  Well, in some aspects he was a miracle.  He was the first "professional" that told me straight up and to my face how awful my daughter looked.  Not sure why I couldn't see it - maybe because I was looking at her everyday and just blind to how tiny she really was.  Maybe I was in some type of denial, I'm not really sure but December 8, 2009 I finally took a good look at Allie and decided it was time for her mom to stand up and take charge of her medical problems.  We had been seeing our team of doctors at the Children's Hospital of Wisconsin (CHW) since June 2009 (Allie was 14 months old when we first started going there).  CHW had been running tests and trying feeding interventions for Allie for the past 6 months and all tests were coming back normal and the feeding interventions were not working.  After meeting our Occupational Therapist and him giving me a rude awakening, it was obvious Allie was going to die of starvation if we didn't intervene quickly. 

On December 9, 2009 we met with our team of doctors at the CHW for a follow-up routine appointment.  Allie hadn't gained weight in the past 4 months and she was falling farther on the growth curve for weight, height and head circumference.  After listening to the doctors and hearing what they wanted to do next, I decided to take a stand.  I told them straight out that Allie needed a feeding tube.  As her mother, I could no longer watch her "not eat" and basically continue to waste away.  All the doctors left the room to discuss this and when they returned, they were all in agreement that it was finally time for Allie to receive a tube.  Due to Allie's severity with lack of eating, they knew she would need a feeding tube for a while, hence the reason they skipped the NG tube (in her nose) and went straight for the peg tube (directly into her stomach).  We ended up staying in Milwaukee until Allie's surgery to get her feeding tube.

December 11, 2009 Allie went into surgery and received her new peg tube.  Surgery went great and according to the doctor there were no complications.  We were scheduled to stay in the hospital for 2 days to let Allie heal and then we would have enough time to learn how to feed Allie with her tube.  Immediately starting feedings, Allie started vomiting.  They started the night time pump in hopes that she could handle a very slow drip throughout the night.  We set her pump at a rate of 10cc per hour at night and Allie would vomit after receiving an hour of her feeding.  It was clock work, Allie would throw up every time she was on the pump.  At this point, she was also throwing about 80% of her bolus feeds also.

 December 14, 2009 We were discharged even though Allie still hadn't been able to keep any feedings down.  I argued with the doctor because we didn't want to go home.  We lived 4 hours from the hospital and if there were any complications, we had no where to go for peg tube help.  Basically, we were told we had to leave.  We drove home that night and once we got into town, Allie started vomiting huge amounts in the truck.  Our first feeding at home lasted only 5 minutes and she started vomiting again.  I was an emotional mess and couldn't take it anymore.  Matt and I took Allie into the ER at St. Francis Hospital.  They did an X-ray for peg tube placement and everything was good.  They sent us home with directions to only feed her pedialyte for 2 days.

December 16, 2009 Back to the ER because she wasn't keeping down even Pedialyte.  At 9:00 pm, CHW decided Allie needed to be emergency air lifted to them.  The airplane came and off we went.  It was one of the scariest days of my life.  After being very insistent, I was able to ride in the airplane with Allie.  Matt and my sister drove to Milwaukee in record time.  Allie was admitted to the hospital through the ER with severe dehydration and other possible conditions.

December 16th - 23rd, CHW ran an array of tests on Allie trying to figure out why she couldn't keep any liquid down.  Her gastric emptying test showed severe gastroparesis.  She received a J-tube (into her intestines) but continued to vomit.  All other tests came back normal.  Eventually Allie started keeping more and more feedings down but still had her fair share of vomiting.  During our hospital stay, we were instructed to only feed her through her J-port and vent her G-port.  I do have to say that venting from the G-port can be disgusting.  The worst part was Allie was venting all of her stomach contents (stomach bile)and since she vented such large amounts, we would have to feed this back to her.  I know many of you tube mom's know all about this - it's very gross but necessary for the child's system to keep working properly.  At this point, we were working towards feeding Allie during the day with her G-port.  She continued to vomit but was keeping some liquid down so it was improvement.  I truly believe it was the doctors goal to get as many kids home for Christmas because in my mind, we shouldn't have been going home.  After all the tests that were ran, there were still no answers as to why Allie was throwing up so much.  We were instructed to give her pedialyte if she vomited more than twice a day.  So, we received no answers but with medication for gastroparesis at least Allie was now stable and able to handle some of her feeds.  According to the doctors, Allie having gastroparesis was not her underlying problem so our search for a diagnosis would continue.


December 24th, discharged and home for Christmas. (what a blessing)

A lot has changed in a year yet so much seems the same.  Just like last year, we are still desperately searching for a diagnosis for Allie.  We are still dealing with numerous doctors, running awful tests and checking blood work more often than we would like.  I never would have thought Allie's medical journey would take us on a wild goose hunt that is lasting over a year long to get a diagnosis.  I understand her medical journey may be a lifelong issue, however I honestly didn't think we would still be running tests a year later.  I am forever thankful that we have access to medical technology and advancements because Allie's feeding tube has saved her life and continues to save her daily.  Last December Allie was lacking in many areas because her brain was not getting the proper nutrition to grow and development.  Allie went from saying several words to being mute.  In December 2009, I remember telling the doctors that it was easy to forget Allie was in the house with me because she never made a sound.  She didn't babble or coo even at a year old.  To hear her today, she has made great advancements with her speech.  There is no question about it, she is still delayed in talking but she is doing much better and continues to improve everyday.

We are praying that December 2010 is the month that we can get answers for little Allie.  She has her endoscopy and colon scope coming up on December 17th and her patch allergy testing December 20th - 23rd.  If no answers are found with this testing, I'm not sure what the next step is going to be.

Here are some pictures of Allie from December 2009.

Allie at the RMH the morning of her G-tube surgery

Me holding Allie right after surgery (getting settled into our room)

Allie slowly waking up from surgery and not happy

Those eyes are saying, "Mom, why did you let them do that to me?  I'm super mad right now!"

Daddy & Allie

Allie sleeping with Lucy her first Build A Bear (or bunny)

Allie's bed for a while

First time sitting up since surgery

New hat that someone donated to the hospital - Allie loves it and still wears it this year.

Daddy taking Allie on her first stroller ride

Daddy, me and Allie right before her J-tube was placed (she already had her G-tube)

Lucky the therapy dog.  Allie didn't like her - Allie is scared of dogs

Resting

Allie doing art therapy with Mary Ann - she was great

First bath in a week - so refreshing and Allie loved it.

Home and settling in - Allie showing off her G-J tube (G goes into stomach and J goes into intestines)

Christmas Day 2009 - Berndt family

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