Tuesday, January 4, 2011

1-4-2011 11pm

So it starts again - Riley had 2 doctor appointments today around 1pm: Pulmonologist for her RSV preventative shot and then to the Cardiologist to start planning her heart surgery. These were my first solo doctor appointments (I had been to a speech therapist, but no doctors just Riley and I except for in hospitals) - I don't think Mom will be letting me go alone again.

Well Riley has had her 2nd mucus issue 13 days now. Her first bout with mucus lasted for 14 days and ended up with her having an ear infection. Michele and I were watching this one closely and there was no fever, but lots of mucus and some trouble getting it out every once in a while.

So both doctors are in the same building and both of them found really low O2 levels (88-92 and they want 96+). Additionally when the cardiologist looked at her she had a high temp (101 or so) and her heart rate was 220+ beats per minute (we want around 160). So they stated that her elevated breathing and fever could be from the cold, but when they checked her liver it was very very swollen - which is a sign of heart failure. So the doctors confired with me about what to do and they suggested that she be admitted to Egleston. This way they could monitor her closely and we could get her in front of the surgeons and we can make some decisions about her surgery. It could be as early as this week/weekend. Which would be great for Riley's health, but certainly scary.

So we got to the hospital and they have her breathing rate lowered to the 160-180, her fever is mostly gone, and they have sucked every ounce of mucus out of her. Her liver is still swollen and her O2 is still around 88. So they are running lots of blood work, X-rays and checking to see if this is just a cold or something more severe (pnemonia, croop, etc.). So we are going to be in the hospital for a couple of days. I am staying the night with my baby as I don't want her waking up and not at least seeing a familiar face. Since she has started to feel better this evening she has started to talk (what we call her cooing) and smile at me, which she didn't do all day.

Also - tomorrow was supposed to be Riley's first day of daycare, but the cardiologist told us something today that they had never told us before. Riley's heart issue normally leads to more colds and longer more severe colds. So her going to daycare will lead to more sicknesses and with those she can't get her surgeries as they don't like to do something like open-heart when a child is sick (normally they make people wait for 6 weeks after a sickness). With an older sister in pre-k I don't know if we will ever have 6 consecutive weeks without sickness, so Riley will probably be in this hospital till she gets her surgery. Michele and I also were leary of the comfort level of the folks at the daycare we went to with Riley's situation. We don't blame them in any way, it would be scary for anyone, heck we are her parents and it scares us some time.

Due to all of this, Michele and I have accepted my mother's incredibly selfless and generous offer to move in with us to take care of Riley. Her move was planned for after Riley's surgery, but that may need to be moved up now. She will be leaving her husband and hometown of 40+ years to help us raise a hopefully heathier baby. Michele and I will never be able to say thank you enough to her and my father for this. Hopefully the daily love of her family will help make up for her incredible sacrifice.

We thank you all in advance for your love and thoughts the Jacobs' are unfortunately going to need a little more in 2011.
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