A Very Special Case.

14. That's how many specialists the boy has now and that's with counting the "feeding team" as one specialist. If you add his pediatrician and therapists it would be 18. Case's GI doctor called Friday with his MRI results. Case has a Tethered Spinal Cord , a small Foramen Magnum Stenosis  and some abnormalities of the brain stem. The GI thinks the brain problems are possibly being caused by the pressure of the cord pulling down on the brain. As Case grows his spinal cord is staying put (because it is connected to vertebrae) and pulling down on his brain. I will learn more when I meet with his new specialist, Neuosurgery. I'll make his appointment tomorrow. It sounds like he'll need to have Neurosurgery to "release" the cord. This pressure is most likely what's causing his night time-early morning vomiting (from the GI's perspective). When he lays down at night he is putting pressure on his brain and in turn he is vomiting. Constipation,...

"I hate delivering these." Says the UPS man this evening. He was referring to the cases of formula he had just brought with all the other feeding supplies. He went on to say, "I hate delivering these because I know the person on the other end is struggling." I was on the porch with all the the kids. Case was sitting on our bench with his pump backpack just chillin'. Not struggling but thriving. The Ups man realized that he was "the person on the other end". He squeezed his toes (and my heart) and said, "You're pretty cool, guy". Yeah, he's pretty cool. He's struggled and he's overcome. His body parts have/will be fixed but his soul is WHOLE. He's been sick, cut open, pinned down, stuck, stuck, and stuck some more. He's been monitored, tested, and considered deathly but death has nothing compared to his INNER STRENGTH. Today was one of those days. As I sit here rocking him, my clothes are covered in spit, throw up, meds...

Tomorrow is a big day for our mini-man. It will start around 5:30 am when he'll be awakened, dressed and changed for the day. Around 6am his nurse  he and I will head to Pittsburgh Children's Hospital (Dan works). Once we arrive, we will check in and head to his spinal sonogram (around 9am). They are checking his Sacral Dimple (a dimple at the bottom of his spine) to see if it's tethered and  Spina Bifida Occulta . Then we head to an 11am appointment with the surgeon that placed his Mic-Key and did the fundo. Next is an 11:30am appointment with Dr. Rouldolf (his GI). After that is a 1:00 appointment with his dietician, Stacy. Then a cookie swallow study. Just yesterday they added another upper GI. That will be next. At some point we will need to get his blood drawn. We will then check into the RMH (as long as we get a room) and spend the night. The next day they have his GJ placement scheduled and possibly blood work if Thursday is too crazy. Wow. That's a big day for ...

"This is not the end of the road. You don't want to see the end of the road...I have, and it's not pretty"-Dr. Ruldolf's response to me saying, "I just really feel like we are at the end of the road..." We're doing it (by we I mean Case). He's getting the GJ, this Friday. It's not the end of the road but the beginning of one. A new adventure. The GJ will help him grow. The food running straight into his intestines and bypassing his stomache means that it will absorb correctly. And if all goes well, the vomiting will cease, and Case will steadily and painlessly grow. This GJ will be put in at radiology while Case is awake. They will take the Mic-key button he has now out and put a new something (not sure what it is called) in. It will have 3 ports. One that feeds food to the stomache, one that feeds food to the intestines, and one to fill the balloon. If it gets ripped out, we can not put it back in. We will drive to Pittsburgh, and they will ...

So, such as the feeding battle (sometimes) goes, there is no clear answer yet. No "easy route". No easy fix and no diagnosis. I took Case to his pediatrician Tuesday. He is concerned. Case lost another 4.5 ounces (in one week). In the month and 1/2  since Case was at the pediatrician he's gained (all in all) only 5 ounces. It's looking like the next step is a blenderized diet (through the tube). There is no malrotation (which sucks, I was really hoping that would be our answer). Dr. Chopra (pediatrician) and  Dr. Ruldolph   (GI Dr.) mentioned the possibility of giving Case GJ tube. "A GJ tube is a radiologically inserted tube that is placed through the already established gastrostomy stoma and threaded into the jejunum in the x-ray department. GJ tubes are used for children who cannot tolerate feeding into the stomach, usually due to gastroeshophageal reflux (GERD)." This tube would stay in his body most the time. If the tube got pulled out we would go ...

Case had his appointments Thursday. First was Dr. Schneck, the senior surgeon with urology at Children's. He's the surgeon who did his surgery on March 2nd and will do the next 3 surgeries on his boy parts. He said everything looks good and is lowering his "family jewels" ;) on July 9th. We were told to pack a bag and leave it in the car. So, it may or may not be out patient. Next was Dr. Ruldolph with GI. I love him and he loves Case. He asked how things in the feeding area are going, not great was my answer. Case has been vomiting and retching up to 12 times a day and sometimes through the night. He seems uncomfortable after most feeds.  He's showing a little interest in taking things by mouth but has a very hard time swallowing. He lost weight. Not a huge concern but still not ideal. Dr. Ruldolph is checking him for soy and lactose allergies. He also ordered an upper GI for April 30th, a swallow study for June 21st and switched him from Pediasure 1.5 to Pediasu...