What a night, what a day. And quite honestly...I am worried, concerned and simply cannot catch my breath.
The past few nights Maxwell has been having some odd "spells." On Friday night he had a few major desats (low oxygen level) and then last night he had intense bradycardia episodes for six hours straight. Along with the bradys, he was having low O2 sats. He required a lot of oxygen to keep him in the 90s. Then this morning he was congested and vomited three times. Are these all related or merely coincidence? Are his bradys and low sats indicative of a major issue or simply a fluke?
So I have called the urology, anesthesia and cardiology teams at Children's this morning and there is definite concern...especially since Maxwell is scheduled for urology surgery on Wednesday. As far as surgery, I am waiting to hear back from the head of anesthesia since Max is a "high risk" patient.
Most concerned is cardiology of course. I have talked with our cardiologist's nurse and she said she definitely wants me and the doctor to talk one on one asap today. So I am waiting to hear back from him...anxiously.
Max has had low bradys before but rarely with oxygen desats. That isn't good, I know that. Most likely we will need to head to Children's later today or tomorrow for a heart visit or perhaps a halter monitor. (This is the test that has 12 leads placed on Max's chest for 24-48 hours and we record every detail of his activities.)
So what does this all mean? I don't know. I am nervous and quite emotional about it all. I forget sometimes (denial is a wonderful thing) about how fragile Max's health is...and last night was a slap in the face reminder.
Can you keep my special lil' guy in your prayers today? Thank you.
(Before all this happened, Max had a great weekend...I'll post photos today to bring happy smiles to everyone!!!)
11 comments:
Sorry that Max is not feeling well... :( Not good timing with scheduled surgery.
Glad that he was able to enjoy the walk...He looks super cute in his fall outfit! Quite the celebrity, isn't he??
The McCay family will be praying for Max. Hang in there Amy!
Stefanie
Max, you and your incredible mommy are in my prayers.
To Amy: I live down here in Edmonds (but I am from B'ham)!) & @ some point in time I read something in a Seattle Newspaper about Max and CHARGE. Almost nightly I check your website to see how he is doing - and how his Mom is doing! You are such a strong person. Max is a very fortunate little boy to have you in his corner. I wish you well with this latest go-around and you both are in my prayers. He is growing up so quickly. He is just a little doll! My best to you and the little mighty max!
I am anxious to know what the doctor had to say. You and Maxwell are in my prayers daily. Maxwell has such confidence - he knows he is a much loved little boy. The two of you are very impressive.
Love,
Mary
My sweet Max and Amy you are in my thoughts and prayers
Thinking of you guys tonight! And I love the pictures from the weekend--it's so amazing how he just walks and walks and walks! Wow. What a strong little man!
Kim
Hey Amy, the Jensema's are praying for you and Max too. You are both so amazing and its hard to put into words our respect and shear amazement for you and Max, you both are incredible and hold a special place in our hearts. Hang in there and we'll anxiously await more news.
Love,
Ryan, Heather, Lauren and Kaden
god max what IS GOING ON WITH u keep the fighting spirtit up pls
Max and Amy, you are in our prayers. We hope you get good news from the cardiologist.
Hugs,
The Kauffman's
Leslie, Arlin & Katie
Hugs Max I will be thinking about you and praying for you.
hugs,
Crystal and Eva
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