Well it is now 2:45 in the morning and I am yet to sleep. Alex's vital signs have been shaky all day and have gotten worse as the night has progressed. At this point we think he may be reacting to the morphine. he is not in pain so we are going to go as long as we can without another dose. At the worst, Alex's bp dropped to 80/39 and his blood sugar to 38. He is doing a little better now. His blood pressure is 96/49 and his blood sugar is up to 48. His heart rate has been as high as 180 but is staying mostly in the 130 range. As usual, he has been a trooper, charming all the nurses. The medicine used to bring up his blood sugar is causing him reactions so we have used his tube to give him small doses of sugar water. The dr on call has been in touch with Dr. Putnam and he is advising as we go. He will be by first thing in the morning. I am so thankful we are here with such a knowledgable dr and not in TX where I don't have much faith.
Alex stabilized between 4 and 5 this morning. He had not had morphine since 9:30 last night. Unfortunately then he woke up in pain. We gave him a 1/2 dose of morphine at 6:00 and he seemed good for about an hour. Then he started swelling again. At this point we know it is either the morphine or antibiotic. We are looking for a pain med that we think will be completely safe. Other then blood sugar his vital signs are pretty good. His blood sugar is still pretty low. At 10:00 we are going to start a slow feed of sugar water through his tube. We are praying he can tolerate it. If he does well, they will attempt to start formula at a very slow rate sometime this afternoon. Alex felt pretty good when he first woke up this morning, he keeps asking to go to the playroom. If we find another pain med things should improve. I will update throughout the day, but may not send an email each time. When we go home will depend on what Alex's body can handle feed wise and how his vitals stay.
I just wanted to show everyone how good his tube looks. his belly is NOT bruised. They used blue soap to clean him for surgery. Also, I am going to stop sending emails. If you click the box at the top of the page it will email you when i update the journal.
Alex has been sleeping comfortably for 2 hours. They are just starting the sugar water now. Hopefully, his little belly will tolerate.
I finally have good news to report! YEAH!!!!
Of course Alex had to throw another kink in the plan first. At noon, we started the formula at a very slow rate. Almost immediately, his cheeks turned lobster red, then it spread to his ears, and eventually most of his face. The swelling also increased again. The nurse practitioner who has been following us very closely quickly made the call to discontinue the formula and give more IV benadryl. His color returned to normal within an hour of the benadryl. We took a long time discussing what to do. we finally agreed to go back to the formula Alex tolerated so well from 12 to 27 months. It is not ideal because it has a lower calorie count which means he needs more volume.
Alex was so exhausted from 2 full days of constant poking and prodding as well as two allergic reactions. He slept today from 8-5. We started the "good" formula around 4:00. He woke up at 5:15 and was back to our Alex. We went to the playroom. Alex walked some and even got on the floor to play trains. he was a little sore this evening from all the activity, but his recovery had the nurses on the floor in tears. They were so happy to see him be a little boy.
We will attempt to increase the rate for the first time at 10:00 so hopefully that will go well. We'll update tomorrow.
Keep the prayers going.