The Lazy Diary

Well today it has been one month since Glenie's operation. He's been healing wonderfully! But we have some other issues that have been plaguing us. We were hoping these issues would resolve themselves but with him starting school in a month, we have to get proactive. Glenie has almost daily meltdowns and they can sometimes be violent. I'm getting better at curbing them, but I'm not successful at curbing them all. They're really hard to deal with. When he's having a fit he doesn't really know what he wants, but he does want me. That makes it very hard when I'm with both kids by myself. I have to try very hard to keep Sara away from him so he doesn't hurt her and she gets scared. It's so tough. He also doesn't want to leave the house still. A few people, even his pediatrician, have suggested that he might think I'm going to take him back to the hospital. The problem is, he can't articulate what's wrong with him. He'll just repeat over and over again that he can't go to the store. Well wish me luck today. I have to take him to the lab for some blood work, so we HAVE to leave the house. He's pediatrician is going to test his endocrine levels to see if he's medicine is what is affecting his moods and his inability to sleep. She really doesn't think it's his medicine but she said it would almost be easier to deal with if it is. She thinks it's probably emotional and that is going to be harder to "fix". This is all really tough for me right now. I try to take it day by day but I worry about so much. He is supposed to start mainstream kindergarten this year, no special ed, but now we're not so sure if that's a good idea. We also have a vacation planned next month that has us taking a plane and a ship. How are we supposed to do that if he won't leave the house without having a meltdown? Please pray for us in these trying times!

Sorry I haven't updated in so long but not much has changed. Glenie is healing wonderfully and he's such a trooper at taking all his meds. He's happy to be home, but doesn't want to leave the house. He also has severe meltdowns that can get violent. These are issues we need to talk to his doctor about. I can't wait for that appointment! That's about it really.

This is where we needed to be! For the past few days Glenie has been having meltdown after meltdown at the hospital, it was really exhausting for both of us. I begged the doctors to let him go home and one of the house physicians talked to Glenie's endocrinologist and she let us go! They wouldn't let us go without making sure we had his medications in hand so I had to get them all from the hospital pharmacy. Luckily they had everything we needed. The only problem is they also have all the refill information. I'm sorry but I'm not going to NYUMC just to pick up his meds. So now I have to get new scripts so I can send them to our mail order company. But of course that is a problem too since his endo is now on vacation. UGH! But that aside, we are home where we're supposed to be! Glenie is doing so great! He's taking his medicines without a fuss and he's very excited to go to Pennsylvania to see his grandparents today. I want to thank you all for your prayers and support. It means the world to us and helped us get through each day. I think I finally let everything hit me last night while I was lying in bed. I just started crying out of nowhere. It was happy/relieved crying to have my baby boy here with us and for him to be ok. This has really been such a surreal ordeal and I pray we never had to go through it again.

Glen was finally discharged tonight! He is home and doing wonderfully! I will post a full update tomorrow!

Whew, I'm feeling a bit refreshed! Now I just have to cut back on the caffeine, I've been drinking WAY to much. Like I posted yesterday, Glenie is healing fantastically! He's even doing much better emotionally. We talked to his endocrinologist yesterday and she gave us a rundown of the medicines he's going to go home on (and be on for the rest of his life). He's going to have dDAVP for his diabetes insipidus, Synthroid for his thyroid and Hydrocortisone for his cortisone deficiency. The Hydrocortisone is the last one they have to get him on before he comes home. He's going to be on a few more meds but we're going to get those during our follow-ups. Last night Glen talked to the surgeon and he said Glenie should be coming home by the end of the weekend! That is such wonderful news for all of us! He's still in the ICU but I love the nurses there so much that I don't want him to be moved. I know, I'm weird. Besides, the ped rooms are so small, I'm going to feel claustrophobic if we have to move there. Tonight we get front row seats for Macy's fireworks on the East River! We're very excited about that! I think that's about it. If I forgot anything I'll add it later.

Glenie is doing so well! He's responding well to his medications and healing wonderfully from the surgery! I will definitely write a more in depth post about everything tomorrow. For now I must get some sleep!

I got great news yesterday, the MRI shows the tumor is all gone! Glenie is healing so wonderfully but emotionally he's not so well. My baby just wants to be home in his own bed but I think it will help tremendously when he is moved out of ICU, which should be sometime today! Today he is getting a PIC line inserted and afterwards should have all his IV lines removed. That will really be a load off. He's got wires everywhere and not having full use of his arms really upsets him. When they take him off the IVs they are going to start giving him his diabetes medicine in pill form and then they will start working on the other hormone replacements he needs. Things are going really well and I'm really hoping he'll be home by the end of the week! Oh, he got his bandages & drain removed yesterday too! Here is a tiny bit of his incision.