Appetite

Some of you may know this already, but it's been a week since Jaime has started his Periactin, a new medication to increase his appetite. See, when we went to GI last week, we were told that Jaime had fallen off his curve! Having said that, he's been working VERY hard at chewing since January, his last appointment with GI. Dare I say, he's been "eating" more solids and drinking less Pediasure. The pediasure he's on has been a high calorie one, containing 360 calories per 8 ounces. Since he's eating more solids and has a small, abnormal shaped stomach, combined with his slow motility, it's hard to both EAT and DRINK. Unfortunately, (or fortunately, however one looks at it), Jaime's calories are being sacrificed by his new chewing skills. Hence, Jaime has fallen off his growth curve. In an effort to get back on it, Jaime was put on Periactin.
Let's fast forward to today. Jaime has been receiving 1 teaspoon of Periactin before every meal. Well, that is except for dinner tonight. I got so busy preparing dinner that I missed his dose. For all the "nay-sayers," I HAVE noticed a significant difference in Jaime's eating on Periactin. He has only vomited (or tried to vomit) just a few times since starting it. Tonight at dinner....he ate about 6 green beans and 1/4 of a baked potato....much LESS than he has been eating since starting Periactin. So, that moral of the story is for us NOT to miss doses! Of course, Jaime's on a 3 week on, 1 week off regimen at this time. It's not a "cure all," but it's a nice jump start! I have not weighed him, so I don't know if he's gaining or not, but I do know that he's eating more, so that's a good thing. It does make him sleepy, but so far, he's able to maintain his normal upbeat self!

In other news, for those of you who didn't read it on Facebook....Jaime had a spontaneous nosebleed yesterday, which is never good when you're a hemophiliac. It lasted long enough to require IV medication. We had to take Jared to camp, so I really didn't have time to take Jaime to the ER....I told Jaime we were going to do it very quickly (silently praying that I would actually be able to stick him and get it in 1 try)! Jaime asked if he could help....WHAT? OK.....so, we sat on the floor in the middle of the living room and made our "sterile field." I put his tourniquet on and hoped for the best. I kept telling him to pump his fist....I found a BEAUTIFUL vein and went for it....he sat STILL asking if he could put his medicine in....SURE! I taped the needle in and let him have at it! My FIVE YEAR old infused HIMSELF with his Factor and flushed his IV line....to finish up, he pulled his own needle out! It was simply AMAZING! We're still rejoicing about it! Jaime asked for another one, tonight! HAHA, NO WAY, little man! It was the best "needle" experience we had and we did it together. I am more confident than ever in sticking his tiny, crappy NICU veins based on that one experience alone! It was a GREAT DAY!

First Self-Infusion, Age 5!

Final note....We're due back in Cincinnati soon for Jaime's cardiac MRI, in which he'll be sedated for (I always HATE sedation, but it's a must for this test)! We will also being having a full cardiac and pulmonary work up....here's to great test results and us getting 1 step closer to Jaime's Pectus Excavatum Surgery!

Thanks for reading.....

P.S. To all CDH Families....if you're in the Cincinnati area, there will be a little get together Wednesday, July 16 at 6:00....any and all are welcome to come, contact me for additional details.
Also, if you're in the Cleveland area, there will be a CDH Family Picnic on Sunday, July 27, 2014....again, ALL are welcome to come....please contact me for details if you're interested. Hope to see you there!

Severe Pectus Excavatum Surgery Info.

X-Ray of Jaime's Chest pushing on his heart.

Yesterday, we consulted with one of the best Pectus Excavatum Surgeons in the country at Cincinnati Children's Hospital. It has been determined that Jaime will require surgery to fix his severe pectus excavatum. This is usually done on children 8 years of age and older, but can be done on children with significant medical issues. Jaime is now 5 years old, he has decreased endurance, significant lung and airway issues, as well as a compressed heart. All of these factors deem it necessary for surgery to be done before 8 years of age. The longer we wait, the worse his symptoms will get and they will not go away or at least improve until surgery is done, waiting can cause permanent damage. We have opted to go forward with the surgery sooner than later to get him on the right path of healing (whatever that will mean for his little body).
Because some have asked...these are the following steps that need to be completed to get from Pectus Excavatum Consult to OR: Pulmonary Evaluation including PFT (pulmonary function test), Cardiology Evaluation, including Cardiac MRI, Genetic Evaluation/Cardiac Genetics, Allergy Patch Testing (Metal Testing) which consists of 2 appointments over 72hrs, ORSA Testing, Pectus Education Class, Meetings with Five Families set up by the hospital who are at varying stages post-op of pectus repair and then all of the "normal" pre-op stuff...labs, chest x-rays, EKG, anesthesia consult, also Jaime will be enrolled in a pain management study so, all testing associated with that. At this point, I cannot give a definitive time frame for surgery.
In terms of the actual surgery, Jaime will be having a NUSS Procedure. This is "minimally invasive surgical techniques have been used for more than two decades. With this approach, two small lateral incisions are made. A bar that has been shaped to the desired chest contour is inserted into and across the chest and positioned below the sternum. This is done using the guidance of an endoscope (instrument used to visualize the inside of the chest). The bar is held in place by sutures and by a small metal plate that prevents rotation of the bar as the chest is reshaped. This procedure is similar to placing braces on teeth, which facilitates their correct realignment." (http://www.cincinnatichildrens.org/health/p/pectus-excavatum/)
Time in the hospital is 4-7 days with a THREE MONTH post-op recovery period where no jumping or running around can take place (that should be fun keeping my crazy monkey down for months!). The bar will stay inserted for at least 3 years, during which time he can return to his normal activity (after the initial 3 months). We have been told that this is a very painful surgery and recovery and that pain management is key to healing! My goal is to do it around the holidays in the winter when Jaime will be home-bound, but we'll see how this deck of cards plays out! He will be having his cardiac MRI and cardiac and pulmonary consults later this month.

Jaime's severe pectus excavatum, sunken in chest.

So, that's the scoop! I will continue to update this blog as things progress. Thank you all for continuing to follow our story as we begin this whole new chapter, your thoughts, prayers and support are GREATLY appreciated!