Updates -- Our Victorious Heart 11-23-04
Posted by: lifeunlimited <lifeunlimited@...>
> Hello all,
>
> It's been a long 2 days, so this will be a brief update.
>
> As Jim referred to recently, we took her to St. Louis last week for a
> cardiology check-up. She was retaining more fluid than desirable and
> her lungs were "a little wet" as the doctor put it (sophisticated
> terminology). Anyway, they increased her 2 heart meds significantly.
> Within a couple days she was breathing easier and not near as puffy in
> her face, neck and legs. She also had lots of messy diapers.
>
> Her bad cold also seemed to be improving and Saturday and Sunday she had
> really good days with very little fussing, sneezing, or spitting up from
> all the drainage.
>
> Yesterday, it all started again and she gradually got worse through the
> day and all night. She had an appointment already scheduled for today
> with her doctor in Quincy. A follow-up x-ray revealed that the area in
> her right lung that had been bordering on pneumonia 10 days ago had
> definitely developed into pneumonia. It's still in early stages, but
> things can digress quickly with any infant, especially one with her
> heart and other health issues.
>
> So after a major dose of antibiotics (10 days worth) via injections in
> both legs and a breathing treatment, we brought her home with an
> additional antibiotic and an increased regimen of breathing treatments.
> We had to keep her up on a full liter of oxygen much of the afternoon to
> keep her sats in the 80's - along with lots of suctioning,
> repositioning, etc.
>
> Towards supper tonight, she began to even out a bit and we were able to
> have about 15-20 minutes where one of us didn't have to be attending to
> her in some way. Tonight was our community Thanksgiving service. She
> was doing significantly better when we left and is still generally
> better than earlier today. Her throat gets clogged with drainage still
> and her sats will do a roller coaster ride on occasion, but she is
> resting well and breathing better.
>
> For those who wonder - the doctor saw no need to put her in the hospital
> at this point, due to it being in the early stages, and the fact that we
> have oxygen and nurses in the home.
>
> We also met the new physical therapist that God has provided for her.
> Her name is Karen, she is licensed for infants and for IN HOME care, so
> we don't have to take her to Hannibal every week (or do without). It's
> possible that she may even come twice a week instead of once. She has
> also had experience with a Trisomy 18 patient before. It was a
> teenager, so obviously different, but she understands the effects that
> the condition entails. She also knows the former therapist, so Karen
> can get filled in on all Leli's experiences with Nicole.
>
> My folks got in town tonight and one sister and her family will be
> arriving tomorrow. We will be celebrating Thanksgiving together and
> enjoying time together. Thanks to my Sunday School class, we don't have
> to do any cooking!! They are blessing us with the gift of time to just
> relax and visit, while several of them are preparing our family dinner
> for us. Our wonderful nurses are also continuing their normal schedule
> through the holiday.
>
> Remember to be thankful for all things, the things we take for granted
> and the things we don't.
>
> We are thankful for you all and for your consistency in lifting us up in
> prayer, as well as for your notes of support and encouragement.
>
> Have a great Thanksgiving!
>
> Walk With Jesus,
>
> Jim and Deanna
>
>
>
>
>
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