Roller Coaster Weekend

This has been a couple days of ups and downs!

It started Thursday morning. Alex woke up with a blood sugar of 39. I knew immediately that I needed to treat the hypoglycemia before he started having seizures. So I followed our treatment plan and administered D50 into his Jtube. The D50 brought his sugars up, but he became extremely nauseaous. I gave nausea medication, but he didn't move off the couch for a good hour. I assumed it was all related to the hypoglycemia and thought we were done with it. Thursday afternoon we started a new medication (for suspected ulcers around his Gtube) that has to go into his Gtube and then clamp his drainage bag from his stomach. I was concerned about him tolerating it, but he did okay.

Fast forward to Friday Morning. We once again gave the new medication. We clamped his drainage for the required time and then unclamped it. By this time we were at therapy. He did an endurance test (which didn't go so great) and then proceeded to vomit everywhere twice. Being the trooper he is he took a minute to get himself together and finished therapy. He had two more doses of the medication on Friday and complained of stomach pain and nausea, but did not vomit again. Saturday we had two more instances of nausea and retching requiring medication. So I made the executive decision to stop the medication for the remainder of the weekend. I had also spoken to the GI office on Friday and the decision was made to hold feeds for a few days since we aren't sure if that is adding into the problems. I am frustrated as we are barely creeping forward on feeds. In the last 10 days we have only managed to gain 5 cc/hr to put us at 25 cc/hr or about halfway!

The good news is that he has felt good today and we have had no nausea or retching at all! Now we just need a new plan to deal with the Gtube pain!

In other good news we are SO happy with our new nurse. We are all very comfortable with her and she is slowing learning the routine and taking on more responsibility. I remain hopeful that she will be with us for a long time.

Sunday is always needle change day for Alex's port. Because it is deaccessed (needle removed) Alex can get wet. We always look forward to a bath, but today we decided to hit the pool for the first time this summer. After years of trying, late last summer we finally got Alex to let go of us and "swim" on his own with a life jacket. I was so proud of him today when he immediately got in and picked up right where he left off last summer. Of course, I got a ton of pictures!!! Enjoy the look of pure joy!









Ali