Past Due Update

I cannot believe it has been 18 months since my last update.  I am so sorry we have not been active here!  Life has just been so, so busy.  In May 2015 we added baby #4 and it really threw me off, I have not been able to do much other than care for my kids and work my jobs.

In May 2015, soon after bringing new Baby Brother home, my mom found a lump in Kimber's neck that concerned her, I kept an eye on it for a few days and realized it was growing, and quite fast.  I took her to the Dr., who happened to be the on call Dr. rather than her regular pediatrician, he told us there was nothing he could do for 2 weeks!  I did not feel comfortable with this so a few days later I called her regular pediatrician for a visit, he wasn't overly concerned either but he sent us in for an ultrasound on it, she was diagnosed as having a Thyroglossal duct cyst.  This is not dangerous and is seen in a large percentage of children.  These cysts can be left and watched for a long while until painful or very large, and it can take a long while to hit this point.  We opted to have Kimber's removed as soon as we could because she was claiming to be in pain from it and was not eating well.

In July 2015 Kimber went in for her Thyroglossal Duct Cyst surgery.  Everything went well.  It was discovered to be a rather large cyst that went further back than the ultrasound showed and proved to be a very good thing we had it removed when we did.  Kimber's heart handled the surgery very well!  We happened to get a very knowledgeable Anesthesiologist who had dealt with SVT patients in surgery before, as well as had patients go into SVT under her watch so she knew what to watch for and knew how to handle the situation, but like I said, Kimber did great.  It was a quick recovery.

Kimber's Spontaneous Hypothermia Migraines have continued to plague her.  She has had another 2 episodes since the last one noted on this blog.  She complains her head hurts a few days of the week and is still taking the migraine suppressant.  There is still nothing more we can do except hope she outgrows it soon.
This is an example of Kimber's temperature reading while in Spontaneous Hypothermia, this is one of her higher readings.

In the Fall of 2015 Kimber gave us a bit of an SVT scare.  She woke in the night with a very, very high fever and her heart rate was in the 170's, but it was not in her PJRT rhythm so we just watched and waited for the Motrin to kick in and bring the fever down.  Once her fever was under control her heart rate slowed to the 150's for the rest of the night and early morning when her fever broke her heart rate dropped back to normal range.  She spent the day quite under the weather but no SVT.  We took her to visit the Dr. when other symptoms became apparent, she was a new to us Dr. and she panicked and gave us a good lecture for not taking Kimber to the ER the night before with that heart rate but we assured her we felt she was fine, she still insisted we were in the wrong and actually made me feel like maybe we'd done something wrong so I called our EP who laughed and reassured us that our judgement was trustworthy and he felt as long as the heart rate came down with the fever reducers then she was fine and a visit to the ER was unnecessary.  He still didn't wish to see her until March, YAY!

We made it an entire year between the last updated Cardiology visit and the next one!  We saw the EP for a yearly, yes that's right YEARLY!, visit in March 2016.

At Kimber's March visit with the EP he explained that he didn't want to wean off of medications, he still could see the PJRT on her EKG, I tried to talk him into it but he wouldn't go for it at all.  Instead he said Kimber is ready for a catheter ablation, she finally hit the weight requirements and we are cleared to schedule it whenever we feel we can.  Talk about terrifying!  I've prayed for this day to come but I never thought it'd actually be here and now I'm scared to do it!  We want Kimber off the medications, so, so badly, especially since we are more likely lately to miss her afternoon dose than we ever have been, she misses the afternoon dose of Propranolol about 3-4 times a week because we're busy, we forgot to bring it with us, my alarm didn't go off or I didn't hear it, or my alarm did go off but I wasn't in a position to run and grab her and the Propranolol and I completely forget afterwards.  Her EP said it's not a very good thing that we miss doses but he said it is a sure sign it's time for an ablation, and he really laughed it off and said "let's get it scheduled so you don't need to worry about it anymore".
But here it is nearly September and I have not yet scheduled the surgery...
1.  Because I'm scared.  Yes that's the #1 reason and I know, it's ridiculous.  I just keep putting it off though.
2.  Because of the baby.  Some, maybe most, won't understand this.  Baby brother is 15 months old now, but he's still breastfeeding 5-6 times a day, I can't in good conscience leave him for an entire day without me, he's still not eating enough food or drinking enough from a cup to satisfy.  But I can't take him with me, a toddler in the OR waiting room, and then in recovery, would be disaster.
3.  Finances.  Enough said.

Kimber starts Kindergarten tomorrow!  *Sniff* I'm having a hard time with this.  We got a 504 plan for her (helps give exceptions for school, makes the teachers and staff aware that she has a health issue, etc.).  I have a detailed, written medical plan of action for the school nurse, front office/principal, teacher, district, and bus drivers, things like symptoms to watch for, how to care for her if she has an SVT or hypothermia episode, the fact that she cannot go long without food or drink because of her Propranolol, special instruction to try getting her into the lunchroom first thing for breakfast to stock up on some calories, allowing a snack and water bottle on the bus in the afternoon to get her home so she doesn't pass out from low blood sugar (breakfast at home will be at 7:00am, she won't get home for lunch until 12:00 or 12:30, that's 5+ hours between meals without these special allowances).  We saved up and bought a FitBit Charge HR for her after extensive research and finding an unbeatable deal on one, this will give me peace of mind knowing I can check her daily heart rate when she gets home and her teacher and aides can see her heart rate right there on her wrist all day, I'm working on getting it insured if possible in case it's lost or stolen.  Despite our constant worry about SVT my main concern is Kimber having a Hypothermia episode while at school.  It seems that is more likely than an SVT episode.  I keep having to tell myself I need to breath, everything's going to be OK.  I'm so happy she gets to go to school like she wants to but I'm really struggling with the thought of keeping her home with me.