Friday, January 16, 2015

Cold and Flu Season is terrible

I hate cold and flu season... C4 is sick again. He gets sick or has symptoms 3 out of 4 weeks. I basically have to avoid interacting with him 90% of the time. Baby Girl and I are confined to the living room and I'm sleeping on the couch instead of in my bed. I feel like we're damaging C4's relationship with his sister and with me. It is absolutely breaking my heart :(

Baby Girl remains on a monitor for apnea and bradycardia. She's had 2 alarms, the latest was yesterday.  I think I'd like to keep the monitor for at least another month.  Last time baby girl had shots she started alarming and had to go back on oxygen support.  I'm worried that will occur again with our next round of vaccinations.

Our weeks are filled with appointments right now.

  • Baby Girl had an eye appointment 2 weeks ago and her eyes continue to develop normally.  Our next eye appointment is in 2 more weeks, hopefully it will be our last.  
  • C4 had a cardiology appointment where we had an EKG and an echo followed by a 24 hour holter monitor.  His overnight heart rate was a little lower than last time, but things mostly stayed the same.  He had some extra atrial beats, but they appear to be an isolated finding.  Overall, he's managing his lower heart rate very well and the rhythm is a standard sinus rhythm.  
  • Baby Girl has weight checks at least once a week and she's continuing to gain about 30 grams a day.  The last 3 days had a slight dip to 26.6 grams a day, but hopefully that was a fluke.  Our home health nurse also gave her the synagis shot so we didn't have to risk the doctor's office while the flu and RSV appear to be peaking in our area. Baby Girl weighs in at 8 lbs, 5oz.
  • C4 had his GI follow up, he's gained 3 lbs in the last 3 months, which is amazing!  He did not grow any taller over that time period.  If he continues to follow his usual pattern, this means he's about to shoot up in height and become super skinny again.  I asked our GI doc about the Autism team's recommendation that we offer only one family meal and make C4 wait if it isn't food he wants to eat.  We have tried this before, both with food and water.  When we tried with food, C4 didn't gain weight, height or head circumference, which is a very concerning issue.  When we tried with water (trying to get him to drink from a cup without a straw) he became dehydrated to the point he stopped urinating.  
  • Baby Girl had her initial meeting with Infant and Toddler Services, she automatically qualifies for services based on her gestational age.  It was good to see the people we'd worked with previously for C4.  He's certainly prepared us well for the services we'll need again for Baby Girl





Saturday, December 27, 2014

Good News! No Surgery for C4

Thank goodness for second opinions!  When the team downtown reviewed the X-rays, they determined the angle of the break was not as severe as previously thought.  There is enough bone left that remodeling should occur without requiring surgical alignment of the bones!  C4 has avoided surgery! We'll still be in a cast for 4 weeks and we've added another specialist to his roster temporarily, but at least we avoided surgery!


C4 is VERY happy about his Bedtime Math book!  Thanks for that KD!  C4 is NOT HAPPY with the cast or the sling.  Hopefully he'll get used to it and we won't spend the entire 4 weeks constantly asking for its removal.


Friday, December 26, 2014

It Never Rains, But It Pours...

It has been a hell of a few weeks and it hasn't slowed down yet.

Three weeks ago I was diagnosed with a genetic condition called Hereditary Angioedema, I also suffered through an intestinal attack of the above condition. Three days later I was laid off from work, six days after that we received C4's official Autism diagnosis with a Developmental Coordination Disorder chaser. Three days after that Baby Girl came home (Yay!) and C4 got his 2nd or 3rd cold virus in a row (boo). Six days after that, The Husband had a stomach bug and I shifted from sleeping in my living room, to sleeping in my mother's living room. Three days after that, we had Christmas.  One day after that at about 9 in the evening, C4 broke his elbow.  Tomorrow, he'll have surgery to reduce the fracture as it must be absolutely perfect if he is to have full use of his elbow in the future.  As always, surgery with a cardiac kid is slightly more complicated and slightly more risky.

Here's how it happened: The Husband brought C4 up the stairs crying and I noticed his elbow was very swollen and just looked "off" to me.  I told The Husband I thought we'd have to take C4 to the ER for evaluation.  C4 said "This is just so uncivilized"  (we laughed, it was funny...) C4 was very upset and very much did not want to go see a doctor.  He's had X-Rays and they have a game plan.  They're going to admit him to the big hospital and will get a cardiac consult first thing tomorrow morning with surgery later in the day.

I'm home with Baby Girl.  This will be the first time C4 is inpatient and I cannot be with him.  We absolutely cannot risk Baby Girl picking up something at the hospital.  She's still very fragile and will be for quite some time.  C4 is also very prone to viruses, so that's something to look out for while he's there.  

I'm so torn, I desperately want to be there, but I know I cannot.  I need to hold my son and I cannot be there, I don't know how to find balance.  I really need things to stop spinning so quickly, it is impossible to regain equilibrium.

Baby Girl is doing a great job of gaining weight.  After a slow start her first few days home she jumped to gaining 73 grams a day on average.  Then, I ran low on Human Milk Fortifier and we had to go down to 2 fortified bottles a day, she only gained 34 grams a day, but that is still more than her goal of 20-30 grams per day.  So that's awesome.  She is just shy of 6 lbs 14 oz at this point.