Admitted again

Emily had an amazing birthday party. So many of our special friends made it and she got some lovely gifts. We are very lucky to have so many great people who love our girl! The next day we went to the Mattel Children's Hospital Party on the Pier, and it was a blast. Wednesday Emily had outpatient surgery to scope her Mitrofanoff and dilate it. They did a ton of bloodwork beforehand, and they called Thursday morning to say that she had a positive blood culture. So in we went to the ER, for repeated cultures. I've been told already that the repeat culture was positive as well. I haven't seen any doctors today, so I don't know the plan. No one has started her on antibtotics yet, so I don't know what the stay will be like. It would be great to go home wit IV antibiotics, but with her history of sepsis with no fever, I doubt they will let us. Please keep Emily in your thoughts and prayers. This is admit 19 I believe, since March of this year. It's a lot for one little girl!

Tomorrow is PARTY day!

Emily turns 8 on Sunday, and her big party is tomorrow. When I say big, I mean big. It started out small, of course ... and then we have a horrendous year with her in the hospital so much. There were a couple of times where we weren't sure if he was going to survive, including just last month. So the party got BIG. I cannot wait, and I will definitely share lots of pictures afterward! It is going to look like a Hello Kitty explosion at the park. :)

We're home again ... And staying here, damnit!

Oh, I guess I didn't even mention that we were admitted again. I have a hard time updating lately, and thinking of something witty to say. Emily had TPN clinic last Wednesday. During the appointment, I caught her TPN tubing on her wheelchair while lifting her to the exam table, and broke her central line. You know, that pesky little life-saving line that goes to an artery directly next to her heart, so that she can receive the IV nutrition that is keeping her alive. We had to wait while the TPN nurses ran to the hospital next door and scrounged up a repair kit. By Friday she was retching more and irritable again, so we were told to take her to the ER for labs and a blood culture. Thankfully everything looked fine, so we got to go home. Saturday we went to a birthday party for a friend, and Emily had a blast. Sunday we went to an awesome Make a Wish party on the Santa Monic Pier, hosted by Kevin James. Every Wish kid was given an iPad 2 by Kevin James! Monday afternoon Emily pulled her gj-tube out. I put a g-tube in, and paged the GI on call. For those who aren't drowning (oops, I meant immersed, did I say drowning?) in the medical world, a g-tube goes into the stomach. A gj-tube goes through the same stoma (hole) and then threads deep down onto the intestines. Emily needs this because she doesnt tolerate anything in her stomach, including the 26 meds she takes daily. We had to go to the hospital, but they couldn't replace it until late Wednesday night. So we were admitted and sat on IV meds and waited. Not all of her meds are available in IV form and she was already in withdrawals from missing doses of methadone and Ativan, so she as a mess. Her tube got replaced Wednesday, but we stayed that night to be sure Emily would return to her new normal before going home. We were discharged Thursday morning, andi was so glad because Jacob's back to school night was that night. I have to admit that I am no longer handling this well. I am a puddle of tears and self pity. I feel like I have lost any semblance of who I am, and my only identity is being Emily's caregiver. I don't have a chance to go out and do anything that doesn't involve Emily. Friday lunches with "the girls" that I have done for years, are no longer possible most weeks. Getting my nails done ... Heck, even grocery shopping ... Nothing is easy anymore. We don't have any nursing yet, and the palliative nurse who is supposed to be helping us with this is not returning calls this week. My mother-in-law is here helping right now, and I don't know what we'll do when she goes home. Even waking Emily up to get Jacob to school, putting her in the car to pick him up, these will all be huge challenges when she goes home. I am feeling very overwhelmed and frustrated. I belong to an amazing group of moms on Facebook who all have kids with AnyCephaly - micro, hydro, liss, pmg. There is a mom whose sweet daughter had lissencephaly, and was 22 years old. She passed away this week. My first thought, while crying, was that I can't handle the thought of losing Emily. My second thought, was that I can't so this until she's 22. That is another 14 years. I can't do this for 14 more years. I am so exhausted, mentally - physically - spiritually. And then the guilt of thinking something like that, much less typing it here and admitting it? Killer. What kind of Mom thinks that? I can't imagine either end of the spectrum with Emily and that is enough to tie my brain in a knot and leave me quivering in tears. Sometimes this life is incredible. Most days I think how lucky we are to be blessed with Emily. Most days she's just this awesome being, who gives so much more than she takes. Some days though, like now, I just think that I can't handle this much longer.