And Then There Was Joy.

I hadn’t heard from Little Rock yet today so I called them about 4:00.  The cardiology nurse called me back with the results of their discussion yesterday.  She said that Dr. Morrow (Emma’s cardiologist) presented her case to the surgeons.  The surgeons said that there is nothing they can do from a cardiac standpoint to help her situation.  They felt like her diagnosis of pneumonia was probably not necessarily true.  Her lungs probably have a hazy look all the time.  So the basic answer I got today was that we need to look for answers elsewhere.  They said at this point they are thinking we will get those answers either from neurology or pulmonology.  We have another MRI February 28, so after that we can begin discussing how her neurological condition (which hopefully they will be able to tell from the MRI) could be affecting her respitory issues.  As far as pulmonology (lung) I don’t have an appointment with them until March 7, which seems like a long time.  I asked if we could see them sooner and they said they could check, but that they probably didn’t have any appointments in February.  I may  make some phone calls tomorrow to find out which doctor she is assigned to and make sure he knows what is going on.  If she really isn’t actually sick then her condition may be worsening and I don’t really want to wait until March.  On the other hand she has been very congested so perhaps she does just have a cold.  Whatever the case, please pray that the doctors will have wisdom to deal with Emma’s very unique case and that I will have the patience to wait for appointments and trust that God knows what He is doing.  What we heard today wasn’t bad news, in fact it was good from a certain point of view.  They are not planning on sending her back into sugery and we have a clearer path to look for answers.

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Emma is doing well tonight.  I just thought I’d let everyone know.  She slept all day and has been awake for the last few hours breathing fine, smiling, and active.  She just fell asleep again so hopefully she will have a peaceful night.  I will write again once I know what the word from Little Rock is.

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As many of you have probably heard, Emma had a short trip to the emergency room this morning. She went into one of her spells this morning and so I took her in. By the time we got there she was actually calming down well on her own, so all they did was check her vitals and do a chest x-ray and blood tests. She still shows some signs of infection, but her chest x-ray didn’t look too bad. I talked to her cardiologist and the er doctor called him as well. They decided to up one of her doses of diuretic and let us go home for now. Her cardiologist will present her case for review tomorrow to the other cardiologists at Little Rock to discuss if they have any more options to help Emma not have these spells. He will call me probably tomorrow then to let me know what they decide. It will probably involve going down there for more tests.

Please pray that Emma will hold her own (no more spells) at least until we go down to Little Rock. We have a genetics appointment scheduled for Thursday so I don’t know if they will overlap those or if they want me to come down earlier. Hopefully we will find out more tomorrow. Also pray that God will give the doctors wisdom as they discuss and look for the cause and correction for Emma’s problems. Hopefully there will be a correction, though if they decide there isn’t and Emma will just deal with this for now then that is OK. We would just like a good plan of action for home to avoid going to the er every time, as they don’t do much we can’t do at home.

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We are home again.  Emma was having a rough time this morning, but after coughing some stuff up on her own she did fine the rest of the day.  They said her lungs were sounding clear and she had some very active playful times.  We will keep her on an increased schedule of breathing treatments for awhile and she will also continue on antibiotics for a week.  The doctors say that this sickness may not have been the same pneumonia she had last week, but that she could have easily caught another bug. [...]

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Miriam and the doctor agreed it would be best to leave Emma in the hospital for at least another night.

Miriam says Emma has been doing better this aftenoon – more playful and relaxed. So long as she’s doing at least as well tomorrow, and her lungs clear up a bit more, they may be able to come home tomorrow.

Please pray that she won’t relapse again. This may be something we have to fight all winter, but it would be nice to keep her at home most of the time.

The pneumonia hasn’t been affecting her growth though – she was up to 12 lbs 5 oz on Monday! That’s about double the normal growth rate, and if it continues for another couple of weeks she’ll be back on the charts in the “normal” weight for her weight (though at the very bottom of the range).

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Well, we didn’t quite make it to Little Rock. Emma started having a little more breathing trouble just outside of Fayetteville around 7:00 am, so we turned around and headed to Washington Regional Medical Center. Miriam and Emma are now settled in a room there for observation overnight.

If Emma’s condition worsens, she’ll be taken down to Little Rock, but for now we’re happy to be closer to home. Last I heard from Miriam, Emma seems to be doing better, so hopefully this won’t be a long stay.

Emma didn’t actually have a breathing attack this time, but had enough labored breathing and distress to make it very likely to have one. This pnuemonia is really hard on her already weakened lungs.

I’m sure Miriam would welcome visitors if anyone is in the area, though probably call first. The hospital main desk should be able to patch you through to her room.

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I really thought Emma was doing so much better, but it turns out that she is still struggling with something.  She had a couple mini-spells last night and this morning.  I was sort of in denial and didn’t make that big of a deal out of them.  But then during her afternoon nap, she woke up in an attack.  It didn’t last too long, but it was enough for me to realize that I needed to get her checked. [...]

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I thought everyone would enjoy seeing some more recent pictures of Emma. Enjoy!

These are pictures of Emma practicing being on her tummy. She usally hates it, but with her new boppy pillow she was all right with it.

Her boppy proves usefull for just hanging out as well.

Here she is out of her crib and “playing” with toys. This is the first day she felt better after her last cold. She didn’t want to sleep most of the day and it turns out that she is probably teething, which will be her second tooth if it comes in.

Here are a couple pictures of her eating. Notice her smile in the second picture. If you look closely you can see her feeding tube.

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I thought I should write so that I am not only writing when there is bad news to share.  Emma is doing well.  We had several days after we got home of pretty bad congestion and little energy, but she appears to be doing better since last night.  She has been awake a lot as if she is tired of sleeping.  She has been looking around at things (even turning her head to the right, although not usually sleeping on that side).  In fact this morning she had a very normal reaction to being put back into her crib-she threw a fit, albeit a short one.  It thrills me to see her want to be out and around.  In fact yesterday John told me she was crying so I went to check on her.  It turned out she wasn’t really upset, she was just yelling.  I think she was trying to get some attention.  I think we are past the worst of her cold, but keep us in your prayers that we won’t have a reoccurence.

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Emma had a follow-up appointment with Dr. Youmans today. She has been sleeping a lot lately, but when I woke her up to go to the doctor she stayed awake the whole time. She looked like she was feeling a lot better and even flashed us a few smiles. She has made good weight gain this week (about 1 1/4 oz a day). For being sick that is really good. She is now up to 12 lbs 1.5 oz. So everthing is going well at this point. [...]

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