A Very Special Case.

This retching/dry heaving/vomiting crap, well I'm over it. Case had a really rough morning. For about two hours he would start retching, which turned into a dry heaves until he finally would over come his Nissen and vomit. That was then followed by crying out in pain. He is fed into his intestines so, his vomit consisted of stomach bile and Meds. This happened quite a few times. The first time or two, I laid in bed listening to his night angle in nursing scrubs whisper to him just praying it would stop. Finally, I got up and called Neurosurgery to have the Dr on call paged. The pain reliever and Zofran they sent him home on are such small doses, I doubt they even work. As I laid on his floor while Jane gently rocked him I thought of just how over the retching/vomiting I am. At this point if he retches/dry heaves too much he could open his incision and then we'd be in trouble. Little guy needs a break. I'd like to do it for him but I can't. Poor guy was in pain from th...

So, yesterday was a long day. I got a call from a receptionist in Neurosurgery Tuesday and they wanted to see Case at 8:45 yesterday already. Dan had work so Case's wonderful nurse came along. As we were packing him up in the car his GJ tube got pulled out. Only a CHP doctor from Interventional Radiology can put a new one in so we were in luck! We were already planning on going there.;) A short one appointment day turned into around 5 hours at Children's. The Neurosurgeon said the brain abnormalities are not related to the tethered cord. They are a whole different issue but he didn't seem concerned. He'll keep an eye on them and may need to fix his Foramen Magnum (the hole that his spinal cord goes though is too small) via surgery but only time will tell. He also said releasing the cord won't help with any of his digestive issues or cure the vomiting at night. Because, he's sure I'm aware of the fact that my son had "MANY issues that aren't all re...

It seems for the first time in oh, 13 or 14 months, Case has gained over a pound in 4 weeks! Yippie! It's about time! The GI doctor was very impressed. He has us staying at 42 milliliters an hour for 22 hours. Each milliliter is one calorie equaling 924 calories in 24 hours. I don't know if that's the magic number or if he's finally over a hump but here's to hoping he keeps it up!! He will obviously keep an eye on his height too. We don't want him ":wider than he is tall.;)". Also at the GI's on Friday he said he thinks he has an infection in his GI tract. He sent a sample of his poop to the lab and I should get results tomorrow. That would explain the weird poop 4-7 times a day and the random fevers. If it is an infection, it should be taken care of with an antibiotic. Also, we are venting 22 hours again but now can we can pitch the bile. Yay for that! The doctor had a sample of blood drawn so he can have a "baseline for electrolytes etc....

Tomorrow we go to Case's first home, the Children's Hospital in Pittsburgh.  Case spent his first 38 days of life there. We've spent countless hours and sleepless nights there. It has saved and bettered the little guy's life. As I've sat in the waiting room, sometimes between hours of appointments, I watch the people. It seems obvious who the natives and who the foreigners are. The natives often come with their children in wheelchairs or adaptive strollers. They come with toys, snacks and drinks. They have multiple sheets for multiples appointments and look tired. This is their life. Day in and day out their sick and or special needs child comes first. They've talked to countless doctors and sometimes hear things they've never imagined. And then you have the foreigners. The parent's of kids who have to come once or twice. I have nothing against the  foreigners, I just can usually tell who they are. They come and look like they got a full night's slee...

"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...

Grab a cup of coffee and use the restroom if you need to 'cause this may take awhile. There's a lot of little things going on with the big guy.:) Weight: Gah! Not great news in this department...he's had little to no weight gain and sometimes losses. Why? No one knows. Do I think he's the incredible shrinking man? I sure as hell hope not! ;) It's discouraging to see the numbers on the scale go down even though he's being fed 20 out of 24 hours a day. His dietitian is looking into adding a supplement to his tube feedings. He now weighs 14 pounds 8 ounces. Milestones: He's walking full time now! Yay and too adorable! He speaks very rarely, but communicates well through body language and grunts.;) Speech therapy may be starting in September. He eats and drinks a little each day, and I'm encouraged by that. By little, I mean a few bites and sips. He's been exhibiting some anxiety and clinginess to me. He has a hard time with people he doesn't s...

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 ...

Yesterday was Case's Nephrology appointment in the Children's Care Clinic. We met a new Dr. He was great, thorough and gentle. He had a genuine concern for Case and took lots of time talking with us. Case's good kidney looks good (there are small pockets of fluid but this is fine for now). His bad kidney is very clearly not functioning and very slowly shrinking. The Dr. asked if he has dwarfism. If I had a dollar for every time I got asked that question, I'd be going to Disney Wold. Case does not have dwarfism. He had a skeletal ex-ray while in the NICU. It came back normal. The dr. was concerned with his Sacral Dimple. He thinks he has a tethered cord  and Spina Bifida Occulta . This is not the first time these conditions have been mentioned. He wants an MRI in the future. Because Case is so young, he will have to be knocked out for the MRI. I will update you all when a date is made. The doctor was concerned with his size and feeding struggles (as all his doctors ar...

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...

I wrote this a few days ago and am just now getting around to posting it.:) Good day Case fans! It's a wonderful day in the land of All Things Case.;) Case weighs 14 pounds 3 ounces. He can "crawl" (or something like that:) the WHOLE WAY up the steps with out any help. Up until yesterday he only went a step or three, got tired and I would help him the rest of the way. He also consumed all of his morning calories by mouth! Big freaking deal! He did, however vomit afterwards but that's okay, at least he still has the desire to take food and drink by mouth. He was also fitted for an adaptable stroller on Thursday. If his insurance approves he'll get it. It's really cool and going to be super helpful. Not only will it have more cargo room and be more comfortable it will have an IV poll so I can properly run feeds and hang the vent bag. It will recline at the right angle to prevent aspiration. All and all it's going to be awesome and will make our long days ...