Today we met with Eli's primary doctor. We spent 1 1/2 hrs talking thru the most recent changes and going over some of the things that need to be immediately addressed.
1. We discussed Eli's lovenox. His levels are a drop over and the dosing is a real struggle. Right now it's coming in prefilled syringes made for adults. Eli clearly needs a much smaller dose. It's rough dosing accurately. He is going to work with the pharmacist to get it switched over to glass vials to draw ourselves. He is also going to continue weekly lovenox levels until we are at a safer dosing point.
2. Eli has been having a few mild nose bleeds but ANY bleeds with a kiddo on blood thinners is scary. We've had to restart one of Eli's meds for his sleep apnea, but it's a nose spray so this is obviously increasing nose bleed risk. His doc wants us to try some new drops to help keep his nose over moist.
3. We discussed the liver. The last rounds of lab work didn't look bad. Still elevated but not near as much. He is unsure if moving ahead with a liver biopsy at this point is a good idea. Being so new and still trying to get stabilized on blood thinners is a bit of a concern with a liver biopsy. We are going to start doing liver blood draws weekly instead of twice a month.
4. He has put a cap on how much blood can be drawn from the line weekly. Everyone has been gung ho to get all of their labs drawn, but Eli is paying the cost. His hemoglobin is dropping quickly and it's causing alot of energy issues for him.
5. We discussed Eli's central mixed sleep apnea. He is in agreement with the pulmonologist at this point. Eli will move forward with meeting with the ENT and most likely a plastic surgeon. Their thoughts are remove his tonsils and adnoids, dialate his nasal passages, place tubes in his ears and do his bronch all under one anesthesia. Everyone is in agreement that the sleep issue really needs dealt with next on the list.
6. He is leaving 1 dose of iron a day and will redraw labs in 3 weeks. Trying to see if we can find the balance of not overloading him with iron, but also keep his ferritin levels up.
7. We talked kidneys. He wants to get a firm plan in place before the end of the year as to what surgery and when and all that good stuff. This surgery has been a long time coming and I'm still no more ready now than I was when we found out about his kidney problems during my 18wk ultrasound.
8. Lastly we are going to be making some changes to Eli's hypoglycemia protocol. This will be our first change since Eli was diagnosed with his adrenal insufficiency and started his daily hydrocortisone. We are going to begin weaning off the cornstarch. If Eli struggles maintaining his sugars then we most likely switch his IV fluids from 1/2 NS to D5. We are going to wearn the cornstarch slowly so we are hoping that will help with no dramatic dumps.
They have put in all of his orders for the med changes, lab changes, and all of those things. We will get it all transitioned over in the next few days.
Eli is still struggling thru this cold and we are having to do a decent bit of rescue nebulizer treatments as well as a few extra cough assists. Luckily hydration hasn't been an issue.
The older 4 are doing well. The biggest 2 have been busy as ever fundraising for Eli's Energy for Life team. They are up to $264 on their own! They also put together a poster and fundraising project and presented it to their principal today. She is so excited about the fundraiser and awareness week. Each class will have a competition collecting coins (and bills) and the winning class wins a pizza party. They will also have awareness facts each day as well as a Wear Green for Mito awareness day. The kids are working on a poster to present to the class so they can better understand all of Eli's issues and equipment when they see him. We are so very proud of them and Eli is so blessed to have siblings who love him unconditionally!!
Today was my eye doc appt. My eyes are a mess. Which I was already knowing on my own. My doc has ordered some special contacts and glasses for me, as well as some new prescription drops. He warned that it's going to take my eyes awhile to try and adjust but he's hoping to be able to bring me some relief.
All the adults in the house are still sick with this darned cold as well. It just seems to hang on.
I will get more updates up as the week progresses!