July 22, 2010 - So I thought......

Caden spent a good chunk of his morning catching up on some much needed sleep, but by mid-morning the spastic breathing started back. Thankfully, only a 5 minute episode. By late afternoon I had to make more calls to CHW to talk with our cardiologist on what to do because now it was lasting much longer, and was more intense. Do I get back in my car and drive up to Milwaukee? Just call 911? The cardiology nurse talked about him having croop but he doesn't have any other symptoms so they think (like before) it really is just a virus that has gotten close to that paralzed vocal cord making it very hard for him to breathe.

Yesterday he didn't even act sick, or remotely looked like he had been in the hospital for the last 2 days. Today, a totally different story. Very lethargic, decrease in appetite, and just acting different. It's weird how it comes and goes so quick. One minute we are playing together on the floor with his toys, the next I'm strapping him into his high chair to try to use the pulse ox machine, checking around asking myself...is my phone charged.....do I have his medicines and important things handy in case I have to call 911 again. Ugggh!

The cardiologist gave us 2 baselines to follow for these next few days. Since Caden's O2 sats are again dropping significantly at times now if they don't bounce back up within a reasonable time (or he turns blue) just call 911 (so now O2 sats in the 60's and 70's are acceptable for a short time), or if we start seeing the breathing coupled with the unconsolable crying/sweating/nasal flaring. The doctor doesn't want to prescribe O2 at this time (as having oxygen sats going much higher than his norm which is 82 can actually do more harm than good). In my mind...it seems like more oxygen would be better, but this is why I'm not a cardiologist (ha). So although I'm so happy to be home, I must say my anxiety is much higher. I have been spot checking his O2 sats throughout the day, praying for less spastic, shortened breathing so healing can occur from whatever it is he has.

Love,
Melissa

July 22, 2010 - We are home!

We wanted to let everyone know we are home and Caden is doing great. The docs increased his heart medication which seem to stablize his blood pressure and his oxygen sats are now back more in Caden's normal range. We never really found out what happened and why it affected his breathing like it did but they speculate it was probably an upper respiratory virus that caused some swelling in his throat. That coupled with his vocal cord damage caused the respiratory distress and difficulties breathing. Whatever it was it came on sudden, and hit him hard but he is doing well now.

I asked one of the doctors why this happened now and it hasn't happened before when he has had colds in the past but his explaination is that viral infections lodge in different areas of the body and this one was in an area that Caden's body couldn't fight himself without oxygen support etc....I think what is more scary for David and I is how something that seems so small can land these kids in the hospital. Thank goodness for our team of doctors and nurses up in Milwaukee who once again took great care of Caden (and us)!

Thanks for all the love and prayers ~
Melissa

June 10, 2010 - Unexpected Oxygen Saturations

Hi. Monday's appointment on 6/7 up in Milwaukee for Caden was a little disappointing. At the hypoplastic clinic appointments you meet with Occupational Therapists, Physical Therapists, Speech therapists and the doctor who works specifically with congenital heart kids. All the therapist have there scales in which they rate him on various skills and tasks. The highlight was that he isn't too far behind except for Expressive Language.

Caden is about 15 months and they rated him:

Growth
22 lbs (yeah!)
30 3/4 length
18" head size
Bayley Test Scores (age equilvalent)
Coginitive Play - 13 mo
Fine motor skills - 12 mo
Gross motor - 11 mo
Receptive Language - 13 mo
Expressive Language (talking) - 9 mo.

All in all they weren't too concerned except for the expressive language. They would like us to get him started in speech thearpy to get him caught up in the meantime. We orginally had the birth-3 program come out when Caden was a baby but I think we are going to choose to go to an outside therapist as the process is so delayed and I would like to get a jump-start while I'm home for the summer. Caden still isn't walking but they said that was from his weak trunk strength (which they weren't concerned or surprised). The bad news of the appointment is that Caden's oxygen saturations are lower. Caden normally ranges between 82-84%. You and I would range between 98%-100%. Caden's oxygen saturations had fallen to 76%. This could explain the extra fatigue we have seen with Caden or possible it is something else. Obviously David and I are concerned because the first thing that comes to our mind is more surgery because something isn't working with his Glenn heart procedure. We are hoping to hear other news as the cardiologist wants to see Caden this week so we are making a trip back to Wisconsin today to find out what this means for Caden. We will keep you posted.

Love,
Melissa