Oy Vey...What a Day!!!

Well I have literally had a full day of appointments again. Two kids down with the EFMP paperwork. I left Jairon's EFMP appointment with just his paperwork. For Jade I left with referrals for specialists that she needs to be following up with some lab orders. (sigh)

Then I grabbed Zach and Corbyn from school (I already had Ellie as she missed school again) I knew Zach had a GI appointment but not about Ellie's apt today... (the clinic forgot to let me know they placed her on the schedule too (oops).

We talked about Zach's allergy issues, his reflux issues and how we are suspecting his nissen may have slipped or loosened. The GI agrees and has planned to get him scheduled for an upper GI. If the meds have not helped enough by the July GI, they will scope and test him for EE as well based off our family history.

Then we talked about little miss Ellie. She is getting compacted again and is clearly NOT gaining weight. The GI is concerned about that, yet at the same time concerned about using polycose for weight gain. She is concerned more about the constant blockage issues even on the Neocate, the constant need for Miralax, and we have added other things to try for now. Just before her surgery she was 45lbs and is now hovering at 40lbs. We can't get her to get more or keep weight on.

Also then next time she runs a fever or shows weight loss then we are to coordinate with her and our pediatrician, and the John Hopkins ER to have her admitted via a direct admit. Using this process they can get specific tests ordered in the ER and have then run as stat orders. Then from there they can bypass our insurance regs for admittance and keep her there as long as needed to figure our why she can't gain weight and is running fevers for no reason. Also they will change out her g-tube to the G-jet and see if this method does not allow her to get some weight on.

At this point our insurance will only allow one day. However a direct ER admit will allow them all the time they need to figure out what is going. So for now I can't give any motrin or tylonel as we need to let her run fevers and see where it will go and how high. We are also stopping the periactin to see if that makes any difference at all or not.

Oh and the GI dr game me her cell number to keep in contact and an extra business card for the peds dr so she and he can communicate one on one about Ellie and put together a solid game plan about what to do with her.

By the time we were finally done with GI we rushed as fast as we could over to the Eye clinic for Corbyn's follow up from the ER visit for his severe allergy attack this weekend to see if we could still be seen. His appointment was scheduled for 3:45, it was now 5:30 as we were leaving GI. We arrived and found where we were supposed to be at 5:40. The eye dr was still there and willing to see him.

She was impressed with how much better his face was looking and said we can start to slowly taper the steroid eye drops. She is also glad we are in the process of getting him into an allergy specialist due to the severity of his attack.

The poor kid suffered such a bad allergy attack that it left both eyes, eye lids, and eyeballs severely swollen. Also due to his ITP he had bruising on the face, small blood vessels in the eyes were leaking. He was a severe mess. At first the eye dr was worried about damage to both eyes. Thank heaven no eye damage was sustained in the attack. I am now wishing I took a picture of his face like she did just for a before and after picture.

We follow up with the eye dr for Corbyn in 2 weeks.