The following was written last week. For some reson I thought I had posted it. I will have another update soon with details of Ali's surgery and recovery.
I want to start this off on a positive note. Alexa just had two very good days. She woke up Wednesday morning full of it... Full of energy, full of attitude, and full of laughter. What a great start to the day. She was sooo happy to see me and threw her arms around me like she hadnt seen me in weeks. Her sweet little baby giggle bubbling out of her as she squealed momma! Her morning was so great it was hard for me to get her to conserve her energy and I really didnt want to... I let her tire herself out and she was quite miserable all afternoon, but I almost think it was worth it from the great morning we had. Honestly every once in a while its just nice to let her be her without worrying about all the consequences. This afternoon was pretty special too. She had a pretty low key morning but she was able to pull out her Alexa spark for the rest of the afternoon. I love these type of days. These are the moments we will remember the ones where it feels like we have just a normal happy little girl who loves life. 
Alexa is getting over a few difficult weeks. She had a really bad spell there for a while, where it looked like she was taking a turn, but shes pulling herself out of it. It has been a few weeks of sleepless nights as we've been needing to suction her more, and she has been having a lot more pain and discomfort at night. Her alarms with her apnea and bradycardia dont seem to be slowing down either. Alexa had an event on Monday not exactly sure what to call it but we believe it was a seizure. We were on our way to Springfield for an appoinment (yes this is over 2 hrs away, what are we thinking), anyway we had our nurse in the car. Alexa made a funny sounding noise, and I looked back at her and she was slumped forward in her seat pale as can be. I said to the nurse does she look alright to you? She said, she just looks really tired, but to me she seemed off. I looked back again and her eyes were fluttering in her head and she was not responsive when I was calling her name. I immediately started pulling over to the breakdown lane, and when we got there she vomitted and seemed to snap out of it. This didnt last that long maybe a minute - minute and a half, but it was very scary. She was very fatigued the rest of the day and the following day.
We were going to Springfield to see Alexa's pulmonologist. We so need to find a good pulmonologisst at childrens, because relaying information is getting pretty difficult. We're trying to get her oxygen set up at home. We need a better monitoring system and nebulizer treatments for her. The pulmonologist doesn't have access to all her hosptial records from childrens and their clinical notes. This is just making things very difficult trying to get the things we need to take care of Alexa in a safe environment. The doctor says he believes Ali needs the O2 set up at home, but was afraid we couldnt get the insurance to cover it. I have since spoken to Alexa's case manager and the respiratory therpaist case manager who would be in charge of approving the O2 set up and she doesnt see why it would be denied... You would think that ok problem solved, but this doctor seems to be making things dificult for us. He wants to get another test in before he prescribes it. Just frustrating because all her other doctors dont understand why she doesnt have this yet. Hopefully we'll have it before her surgery next week. 
On Tuesday we went to Children's for Alexa's repeat swallow eval, which was a complete bust as she wasnt cooperative at all. She did take one sip of nectar thickened water and seemed to be able to handle it ok, but it wasnt a very good test. We also had her pre-op appt. that day. They almost canceled her surgery because of the seizure episode. What a big ordeal this was. The anasthesiologists are very anxious with Alexa going under especially since they will be working on so many different systems. We ended up having to get clearance from all her docs, the cardiac anasthesiologist, the director of pre-op, and her autonomic doctor had to come down and examine her. BUT... we have the green light for surgery on Tuesday. We got the call today that her bloodwork came back and she is clear for Tuesday morning. I have to say I wasnt nervous before this appt but am a bit more so now after seeing how anxious they all were. This one appointment lasted nearly 4 hrs and we had yet to get bloodwork. This was a very long day. Fortunately I had one of Alexa's nurses with me and that seemed to help the day go by faster. We were able to get a nice walk in. It was great when we were in the appointments because she was able to watch Alexa while I spoke to the doctors. She was also able to listen in which is nice because on the car ride home I had someone to bounce things off of.
I know in the past I've mentioned Alexa's early interventions... They are still wonderful offering so many things for her, however... I do need to say thet they have a very high turnover rate. Alexa is still recieving most of her services but she has had many different people working with her due to the high turnover. Some of the things we loved have been discontinued such as expressive movement and yoga... She now has a new PT person. I really, really like her. She knows so much and is working on specific things giving me homework that I can work on with Alexa. She is great in that she doesnt just see her as she is now but what we can expect in the future. Finally someone can explain to me what we may see with her muscle wise. She wants Alexa to be followed closely by an orthopedic specialist. She believes Alexa needs ankle braces, and will need other braces as she loses her mobility. She recommended a few doctors and I will be calling them to set up an appointment as soon as this surgery is in our past. She also said she would be the one to help get us Alexa's special equipment she needs. Like car seats ,stroller /wheel chair ,bathroom equipment, beds and so forth. She explained that an orthopedic specialist will be the one to follow her if or when she develops scoliosis, and that she is at high risk to develop osteoporosis. It's nice knowing someone who cares is following Alexa. 
This week Kevin and I will be celebrating 9 yrs of marriage... Holy cow, thats a long time! I'm so in love with my best friend and I cant imagine going through this journey with anyone else. He's my shoulder, my strength and as he would say my better half. Our relationship works because we are able to equalize eachother. On my down days he is able to pull me up or just be there when I need him. I like to think I'm able to be his strength and comfort when he needs it as well. I feel so blessed to be surrounded by the love of my wonderful husband and beautiful girls.\\\\
I really love how you recap all that is going on and also for sharing all your emotions. This is such an emotional ordeal for all of you and it is so good that you acknowledge all the emotions you have. I hope Kevin does the same. It must be a comfort for you to have your nurse accompany you on these trips. God Bless You All. Love, Mom B.
ReplyDeleteI hope everything is okay. I continue to keep y'all in my prayers
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