Corbyn prepping for minor surgery

Corbyn... Next week, Corbyn is getting his adenoids and a T-tube that was placed in her ear when he was a toddler. The other one fell out like it was supposed, but this one has stayed put. The ENT removing the tube in his ear said that T-Tubes are typically placed as long term tubes to help in severe infection cases like Corbyn has as a toddler. However, she has NEVER seen one that has stayed in place for for over 5 years. His has been in there for about 11 years now.

The hassle we went through just to make this surgery possible. Oh my goodness... I knew that kids with blood disorders typically did not have surgery of any kind unless absolutely necessary. The process required to have this surgery approved through his heme has been insane.

Feb 3, blood draw for platelet counts
Feb 5 IVIg infusion (6 hours at Johns Hopkins)
Feb 9, blood draw for platelet count (if to low emergency admit for overnight IVIg)
Feb 10, blood draw, platelet count, if high enough, green light for surgery, if to low, red light, reschedule surgery, go home
Feb 12, after surgery IVIg infusion

Thank goodness all blood counts can be done locally through labcorp, but everything else we have to drive to Johns Hopkins for.

Zach has an appointment to see the asthma/allergy dr on Monday. In preparation for this appointment, Zach has to go off all the antihistamines he is on. Right now he is on 4 or 5 different meds to try and keep his hives and rashes under control. At this point this point the only things we know for sure that he is allergic to are latex and peanut. Peanut causes his asthma to act up.

Zach is off to see the asthma/allergy doctor for both his idiopathic hives and a cough that we have seen the pediatrician about multiple times now over the past several months. We have tried so many things now to get his cough under control and clear it up, but we are now going on month 3 or 4 (at least) and his cough is not getting any better. So it is time to move onto the specialist. However, it the allergy testing Zach is worried about. Not all the little pokes and prods, but the prep before hand because he has to stop ALL his meds except his Flovent and Albuterol. Everything else is in the antihistamine family.

Poor kid is so worried about how itchy and miserable he is going to be this weekend and that by his appointment he will be covered in hives. Like I told him, if he is covered in hives, that is perfectly fine as he is off to see the perfect doctor for that.

I had the school nurse print off a list for me to take to this appointment for the school year everytime he has seen her so far for hives, rashes, cough, wheeze, anything relating to this doctor. She gave me a pile of papers 5 or 6 pages thick listing everytime he has been in her that she made a note. She did not make a note everytime he saw her just to grab a cough-drop.

So if you see Zach covered in hives or a funny raised rash, do not worry because he is off all his controller meds to fight back these rashes. He is very likely to just break out over the next week too as once he is able to start back on the meds, he will take a few days before he under control again... 0_o

I suspect part of the rashes he gets during the summer time are related to his Raynaud's. ....wondering if this doctor is familiar with this vascular disorder or not. I will for sure have information about mast cell growths. Because he is mostly affected during the summer when he is out in the sun with his funny wart like things that are not warts. We know for sure they are not warts because warts do not come and go like his do...

Busy week.... Jade

So far Jade saw the GI dr about how often she has been sick and throwing up this year. Turns out since she stopped dancing she has continued to loose weight and has not grown at all in nearly 18 months. So now her GI wants her calorie intake increased to just over 2000 kcals a day (we have been told to add 2 pedasure drinks a day to her diet again)...

In addition to the increased calories, they are going to do a barium swallow test to test for dysphagia or other swallowing issues. The GI is also ordering an upper GI (possibly a complete) biopsy workup to check for EOE or Eosinophilic (e-o-sin-o-fil-ik) esophagitis (e-so-fa-gi-tis). She is being tested for this due to the fact that she is most likely to throw up shortly after eating, feels her foods and drinks slide down her throat, and sometimes feels like they are starting to stuck.

Frank said at the appointment, when they mentioned this his first thought was, "oh great here we go again..." This is similar to what we deal with Ellie.

Jade saw dermatology for a wart on her hand and started the treatment. According to her doctor she may be lucky and need only 1 or 2 treatments, or may have one of the stubborn warts that requires many treatments just to keep it under control. We will not know until we return to the office in 3 weeks and have then freeze the wart a 2nd time and then see how it responds.