The last few weeks have been crazy with a ton of appointments. I need to catch up quickly before I forget everything! I am going to go by date to make it easier.
January 2nd- Alex had 2 appointments. The first was with endocrinology. We are kind of at a stand still with endocrinology. We would all love to be able to give Alex several hours a day unhooked from his feeds/ TPN. Unfortunately, his blood sugars don't hold and Alex feels really bad. We have decided to leave things alone for now and possibly challenge him inpatient in the spring. He also saw pain team. He is working with them on guided imagery to try and give him a way to handle pain without medication.
On January 10th Maddy had her first fever. Because of her age we had to go see Dr. Benzick. He examined her. She would up having a UTI. We started her on antibiotics. Poor girl she was pretty miserable for a few days while the medicine kicked in.
On Sunday, Alex, Maddy and I traveled to Houston for appointments on Monday. Alex and I were both scheduled to see cardiology. Alex's heart rate is too high all the time at this point. It also jumps up quite a bit when he is sitting or standing. We are starting him on a beta blocker to try and bring his heart rate down some. I was asked to see this doctor a year ago. The hole that Alex had in his heart that was closed in June of 2012 has a 90% chance of a family member having it. My Mom was tested and she has the same defect. I had an echo on Monday and I also have the defect. I will have further testing and a possible closure sometime in the spring.
Tuesday, January 14- Maddy had 2 ultrasounds. The first was an ultrasound of her kidneys. This was ordered because of her age and the fact that she has a UTI. They wanted to be sure her kidneys looked okay structurally. They checked out fine. We will hope that this was a fluke infection. If she develops another UTI they will do some more testing. The second ultrasound was because of her reflux. She continues to have pretty bad reflux. They wanted to look and be sure there is no anatomical reason for her to be refluxing. The ultrasound showed that anatomically everything is fine, but was read as "multiple episodes of significant reflux". We have started an additional medication to try and keep her more comfortable.
Wednesday, January 15- Alex saw hematology. We discussed Alex's MRI of his liver. The iron buildup in his liver cells is better. We are rechecking his iron labs, but most likely will be starting iron supplementation in the near future. Alex has been sitting just above his transfusion threshold for a few months now. We have seen an increase in fatigue. He is back to taking his 4-5 hour nap every day and is complaining of feeling exhausted. We have decided to give him a few more weeks to see if things improve for him. If he is still feeling so fatigued will give him a transfusion to see if we can make him feel better. We also checked his clotting because of some unusual bleeding we had this week. (He had blood dripping out of his jtube Stoma).
Thursday, January 16- Alex saw pulmonary. This is a "new" doctor for us at cooks. However, this is a doctor that we have known for years as he came from Houston! It is MUCH easier to see a "new" doctor when you don't have to give Alex's complete history and explain all of his "quirks"! His pulmonary Function Tests looked better then they have in years. We are so grateful for that. We have decided to leave everything as it is right now. If things decline again we will address them at that point.
Whew! That catches me up. I promise to do a fun post soon with our adventures and pictures.