I wanted to give a quick update on Alex... Starting about 10 days ago, Alex started to feel really bad. He has had some abdominal pain above his base line, but he has had AWFUL, unrelenting nausea. For those who want more details, his pain is about a 6 and his nausea a 9. We have been in constant communication with our GI and made many changes including doubling one Nausea medication and adding another to make a total of 3. We still do not have it at an acceptable level. We thought it might be a flare of his pancreatitis, but his labs look like "his Normal". After many conversations we think we have narrowed it down to two likely causes. One is a reaction to an iron infusion he had the day the nausea started. The other is trouble with a change made to his TPN (IV Nutrition) several days before. The doctors discussed admitting him, but Alex begged not to be admitted because it can make things worse as here I can give him what he needs immediately and in the hospital he often has to wait for meds as we wait for a nurse, wait on pharmacy, etc. To make matters worse, Alex really reached his breaking point today emotionally as we had a complication with his port that left him unable to get medications for several hours. Luckily, our hematologist was able to see us and keep us out of the ER. But Alex is desperate for some relief. We ran labs again today and are hoping they may add some clarity to the situation.
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| Always willing to smile for his sister |
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| Iron Infusion |
On a bright note, Alex has met almost all of his core requirements for graduation. I let him pick some electives he would enjoy to try and finish out our needed credits. He is loving his classes: Spanish, Business Math, Medical Terminology, Psychology and Crime Scene Investigation with the last two being his favorite!
Maddy is doing great although she doesn't like when her Bug doesn't feel good. They are each others best friends and pals and it worries her when he is sick. I have also made some changes to her schooling as it appears that she will be home with me for one more year until things settle a little more. She is LOVING our new math curriculum and doing really well in LA. We are set for science until next year. She continues to improve weekly in her horseback riding and is constantly learning new skills. Her confidence is better and better and her joy is back 100%. She is also loving her private art and ballet and after a change in schedule to help with fatigue during her ballet lesson it has just gotten better.
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| Eggstravaganza |
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