Tuesday, November 22, 2011

Slow Progress

We've had a wild 2 weeks since my last post.  While everything seemed to be going perfectly, and we were celebrating Davis being off the O2; it turned out to be a short lived celebration.  2 days later, we checked his blood oxygen levels and they were very low (79 when they should be 90).  So we called Dr. Jone and she initially thought his heart may be shunting blood right to left since he was healthy otherwise.  So it was a really hard day for me, and we put him back on the oxygen.  I was thinking he had additional heart issues and was really upset and trying to understand how things took such a bad turn.  But then the next day he woke up feeling truly crappy and showed all the signs of a bad cold (chesty cough and lots of congestion).   Normally this would be bad news, but in our case, it explained everything happening with his O2, so i was thrilled!  No additional heart problems, just a cold.  We called Dr. Jone to let her know and she confirmed that the cold would cause the drop in O2 levels, and said we'd re-assess once he's feeling better again.  :)  Meanwhile, Davis has given the cold to me (so sweet) but we're both feeling much better already.  At an appointment with his pediatrician last week, they did a mucus sample lab test and told us we have Rhinovirus, which is basically a bad cold.  I'm just happy we were able to get better before Thanksgiving, as I can't imagine anything worse than not being able to taste my favorite meal of the year.  ;)

In other news, we signed Davis up for swim class at a local rec center back in early November.  He has been loving the pool and the opportunity to kick, splash and swim around with mom and dad.  He's even gone under the water twice now and didn't seem to mind at all!  He just pops back out...bats his big eyes a few times and looks at us like "what was that!?".  He's definitely a water boy and I imagine he'll be a great swimmer in a few years.  We had to skip a few classes when Davis got sick, but we're planning to go again tonight for the last class.  I plan to sign him up for another round since he likes it so much and it's a great place for him to meet other kids his age too.

We're still working on the transition to solid foods, but Davis isn't convinced yet.  Sometimes he does great and seems to love what we're feeding him, but other times he acts like it's poison.  We've tried rice cereal, oatmeal, bananas, sweet potatoes, applesauce and pears so far.  He's very interested in food, especially what we're eating.  And he likes sitting in his high chair, and playing with the food on his tray.  So i think we're close.  We just need to get him past the gagging reflex which seems to ruin all the fun of snack time.  We may start working with an OT to get past that issue since it seems to be the last hurdle on the road to solids.  Wish us luck!

Tuesday, November 8, 2011

Davis-1, Oxygen-0

Today calls for a celebration!  We had an appointment with Davis's cardiologist and she gave us the OK to take him off the oxygen.  We are thrilled with this good news and Davis seems to LOVE not having the cannula on his face anymore.  At the appointment, they did an echo scan and an EKG and all looked great.  His right atrium is still very large, and they'll keep an eye on it over the next few years, but it's no larger than before.  About 3 weeks ago, Dr. Jone called me with an idea.  She had been looking at some recent studies about infants in the NICU who were on Sildenaphil (viagra) to increase blood flow to the right side of their heart and had great success.  There was no mention of 7-8 month olds using this drug, but she consulted with the team of cardiologists at Children's Hospital and they thought it may work for Davis.  So we've had him on this drug for about three weeks now, and today was the official evaluation on how it was working.  His blood oxygen levels are staying over 90 off the oxygen, so she said he didn't need it anymore.  :)  We'll keep the tanks and machine at the house just in case he needs it at night or when we take him into the mountains, but he definitely won't need it anymore during the days in Denver.  We're so proud of his continued progress and ability to conquer every hurdle he's given.  What an amazing little boy we have.