Today Ella is fifteen months old and because we have been with Nicholas in the hospital for the past two weeks, I have not taken any recent photos of our little munchkin. So, being the crazy mom that I am, I snuck into her room tonight while she was sleeping and got this adorable photo of her. I am glad I did it because 1) she didn't wake up like I expected her to and 2) I can never get a good photo of her sleeping.
She is a sweet little girl and it is so, so tough to be away from her all the time while I am at the hospital with Nicholas. I miss being around her and she has been a bit moody with me today because I think she's upset that she doesn't wake up to her mama every morning. My mom has been taking great care of her every week day for the last couple of weeks and she has really bonded with her Gramme.
She loves to give kisses now and I hear that she has been kissing one of my mom's Santa's that is the same height as her. She also gives high fives and likes to dance when ever she hears music of any kind. She has cut two new bottom teeth for a total of six teeth now. She LOVES food and eats anything and everything you give her. If she sees you eating, she comes running over and makes mmm-mmm noises until you share. She also likes to get into things that are off-limits and runs away with them until we chase her and get the items back. Cell phones and purse items are among her favorite off-limit treasures.
She is the sweetest little girl and adds a lot of comic relief when our days feel overwhelming and heavy. I cannot imagine our life without her, she is a true blessing to us all.
Nicholas continues to improve slowly but surely and will most likely be discharged on Saturday. We are thrilled to be able to bring him home in a few days and will be so happy to get out of the depressing PICU where everyone is sick and all the doctors want to talk about are the negatives about SMA. I have to bite my tongue everyday and try not to yell at them that Nicholas is not a statistic, that he is a fighter and that he and God make the rules. I also have to constantly remind them that while I know they are good at their jobs, they do not know my son and they certainly do not much about SMA. I rely on the SMA protocols from Dr. Schroth and mention them often. Honestly, if it were up to them, they would keep Nicholas for another two weeks until he is completely weaned from his bi-pap except for sleeping. I explained to them that that is something we can do at home where he is away from all the germs and in a comfortable environment where nurses aren't disturbing him every 30 minutes.
I also had to advocate for him today to get The Vest which is a machine that shakes his torso so we can more easily get secretions out. His pulmo didn't want to order it for us. This is the same man who refused to switch him from c-pap to bi-pap until this illness and who wouldn't order home oxygen for us until I could prove he needed it. He told me that he didn't think it was necessary for Nicholas as his cough assist would be just fine and I told him I disagreed completely and that Nicholas needed one to be able to move stuff so that the cough assist can bring it out. He muttered something about being medically responsible and not ordering everything and I shot back with, "Nicholas needs this system to help him stay well and out of here. I think you would want that as much as we do." He finally relented when I wouldn't back down and later I also had another pulmo on charge back me up as well. So we are getting both The Vest and a nebulizer when we come home. I thank God the doctors have the good sense to listen to me and are sending him home soon. I don't think Jeff, Nicholas, or I could handle another week of that place!
You can see we have been getting more smiles out of him in the past few days and he has been talking more and wanting to play. He loves to play with his balloons that Getty sent him and yesterday Child Life brought him a truck and a coloring book so we spent hours playing with both. He colored a nativity picture for his room which we hung on the wall and he loves to look at. He was off his bi-pap today three times for 1-2 hours each time and did great. He is not any any extra oxygen and while he still has a lot of secretions, they are not thick and glue-like anymore.
We cannot wait to bring our little hero home in a couple days!!!!
3 comments:
Wow. It's so sad that this seems to be the case over and over again with these kiddos! We went through the same thing after Ryan's first major hospitalization. We came home from that hospitalization with a nebulizer, suction machine and bipap.(I think we already had an oximeter at home). He had been relatively healthy up until that point. And it wasn't long after that that we got the vest, cough assist and oxygen. It sounds like you are doing a great job advocating for your son. Great job!! So glad to hear he gets to come home soon! We feel the same way about the hospital. The sooner we can get our son home, the better!!
thanks for sharing those great news ! Your a super mom Jessica, really, you're such an inspiration ! sweet kisses for all of you
I'm SOOOOO glad that you stood up to that doctor and FOUGHT for Nicholas!!!! I truly believe that when a patient cannot speak for themselves, the mother KNOWS best!!! Honestly, that paragraph made me smile soooooo big Jess---I'm so proud of you for saying those things!!! AWESOME---just AWESOME x-D I'm so glad he's home now. I really believe that is the absolute best thing for him. You have created a safe haven for him and it's so wonderful how it's secure AND safe for his health as well. Thank you for continually sharing your story! I love to read it :o)
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