UPDATES 7-24-2008

Thank you for visiting our site and welcome to our weekly update on Lauren.

Lauren Nardulli Update: “Long-Boring Summer”

If you view Long Boring Summer as a negative I understand, but for us that means we have not spent another summer at Children’s with Lauren.  So, knock on wood, as of July 23, 2008 we have not been in the hospital for a shunt revision or some other major issue.

Lauren has been amazing us this summer with her ability to put words together…”momma mad”, “daddy mad”, “atelyn” (katelyn) crying…  I swear to you, we are a happy household!  She says “I love you”, which is great to hear but also she loves saying “No” and “No More” (Complete with arm movements for emphasis).   She is saying “grampa” which pleases Grandpa Nardulli to no end!  Physically she is getting stronger everyday.  She “walks” from couch to ottoman to toys to DVD shelf.  As you have probably read, her fine motor skills have always been outstanding and her eyes have always shown a strong intelligence.  She takes the DVD (Barney of course) from the shelf…shuffles, stumbles, and falls in front of the TV and DVD player, opens the player, inserts the disc, presses play and even knows how to get past the menu…  this is a skill that both sets of grandparents cannot master.  She loves singing Barney songs, Elmo, Mickey Mouse Clubhouse, and loves singing Hannah Montana songs with her sister.  She still has trouble sleeping so on the days I get up with her around 4am, we watch music videos on VH-1 where she dances until she falls asleep at 7am just in time for me to go to work!  She loves the pool and baths which is a huge accomplishment for therapy as she used to literally start throwing up and convulsing at the sight and sound of water.  She likes to feed me at restaurants which entails her jamming a fork into a piece of food and shoving it into my mouth as I suppose to demonstrate how it feels to get speech therapy twice a week (focus is on eating and swallowing).  She is drinking water from a sippy cup which is great and is saying she is “ungry” and “eat” so we have been feeding her baby food (very little though as the g-tube remains the primary source of nourishment for her).

Of course, there are two sides to a coin so from a medical standpoint we are in a holding pattern with neurosurgery.  Her most recent MRIs (July 2008) show no improvement in the cyst in her spine.  This is concerning Dr. Tomita as he had hoped with the most recent laminectomy and insertion of the second shunt in her back that it would drain that cyst.  The good news about the second shunt is that her spinal cord in her upper back is actually showing signs of thickening and appearing “more normal” in the MRI images.  Dr. Tomita is proposing adding additional “plumbing” (my word not his) from the cyst directly to the shunt to forcefully drain and keep draining the area (think of a concrete pool with no drains).  This is the “safest” of two considered surgeries because he will not need to alter the cystoperitoneal shunt in the process. 

Dr. Tomita wants to wait until the fall because he feels Lauren is doing so well and deserves a “long boring summer” J.  However, the kink in this plan could be Dr. Grayhack, her Orthopaedic surgeon who is concerned that the cyst could be worsening her kyphosis (humpback) and scoliosis in her back, which could cause significant challenges for Lauren down the road. 

On top of this we are gearing for a battle with the GI Doctors and Pediatric Surgeons over her weight, g-tube feedings, scarring problems and nutrition.  When a doctor uses the words “failing to thrive” and “endangering your baby” in sentences, it is very upsetting to us and to anyone I would imagine.  One of the pediatric surgeons used those words to describe Lauren recently.  I am attending the next meeting on Thursday to have a very frank discussion on this.  We understand that they have their opinion and want what’s best for Lauren.  However, I feel we, and more importantly my wife, has actively managed Lauren to as good a position as she could be in from the point of the doctors at Edward Hospital feeling Lauren was not going to make it to where she is today.  We have a plan with a nutritionist we trust.  Some of the issues we will be discussing include the placement of a g-j tube instead of the g-tube.  The scarring around the g-tube has gotten so bad that the g tube will not function correctly for much longer and the original site will need to be surgically closed and another hole created.  Since they will be doing surgery anyways, the surgeon would like to use a g-j tube that has the ability to feed directly to her stomach or the intestines.  Using the “j” port could allegedly alleviate her severe reflux thus keeping more nutrition and food in her body which should trigger her to gain weight and grow.  The “g” port would still need to be available for medications that are designed only to be absorbed in the stomach.  We are opposed to the g-j tube because last summer we tried this when she was in the hospital and was still groggy from her surgeries and overall weakness from lack of nutrition with horrible results.  The main issue was that every time she displaced the tube from movement or from throwing up, we had to have them re-insert the tube using Interventional radiology (IR).  If this happens at home, we have to go to the hospital and have it placed again and by hospital, we mean Children’s downtown only on Monday through Friday from 9am to 5pm.  IR means that we need to have the g-j tube placed by x-ray and we are not allowed to be there to comfort Lauren during this procedure.  So this means a trip to the hospital in our minds everyday, given her activity and reflux level.  The other option is also fraught with negative side effects.  This involved twisting part of the stomach into a knot.  It is called a Nissen Fundoplication procedure.  The problem is that this may not help her reflux and could lead to major complications down the road, in addition to more internal scarring.

I know many of you appreciate Amy’s updates, but I have given her a much needed break from some of “her” activities.  The problem is that I told her I would do the update a couple of weeks ago, so as usual we are behind in updates!  I hope this update gives you a sense of hope and happiness that we are feeling with our long, boring summer because we really are having a great summer.  Our nervousness is towards a long winter spent at Children’s Hospital.  We would not get through all of this without all of your prayers, love, and support for Lauren and the rest of us.