More news on Madison

We finally met with the doctor to review the results of Madison’s second ultrasound, and the news is not good.  Her bleeding has progressed more than they would have expected, although the one bright bit of news is that it is still only a Grade 3 IVH.  Still, the accumulation of fluid and the increase in size of her ventricles means that she will likely need some sort of intervention to help resolve the issue.  As you may recall from an earlier posting, this would come in the form of a temporary or permanent shunt.  She is too small to receive a shunt right now, so they will have to wait a few weeks before the procedure.  Since a baby’s skull is not fused together like an adult’s, it’s actually OK to wait a bit since her skull can expand to relieve any additional pressure on her brain.


The other disturbing piece of news we received is that the doctors now believe that Madison did in fact have meningitis at some point.  Her cultures never came back positive, but her seizures have continued at the rate of one or two per day, despite treatments of anti seizure medications.  In our doctor’s experience, if the seizures had been brought on solely by the bleeding, they would have resolved by this point.  The fact that they are continuing means there is something else happening.  The most likely candidate given her history is meningitis.  What this means is further potential of damage to her brain, and further potential of development issues.  When she is a couple of pounds heavier and can handle sedation better, she will undergo an MRI to get a better sense of the damage.


So rather than just meeting with our doctor, she bought along a developmental specialist and a social worker, two people you don’t want to see in that type of meeting.  It is still possible that the impacts of the bleeding and meningitis are minimal, but the odds of that are decreasing.


As if things weren’t exciting enough, Julie is also dealing with some recovery issues of her own.  During a routine follow up visit yesterday, our nurse let us know that some of Julie’s symptoms (specifically, excruciating back pain) may be indicative of a gall bladder issue.  If that is the case, she would need surgery to have the organ removed.


But what would that diagnosis be without some additional entertainment?  While we are meeting with our neonatologist and receiving the news about Madison, Julie’s nurse walks in and tells us we need to be down in radiology in the next 10 minutes so Julie can have a Spiral CT (CAT) scan.  We head down, wondering why she would need a CT scan since the next step on the gall bladder thing was an ultrasound.  As she is walking back for the scan, Julie asks the tech why the scan was ordered.  “The are worried about a pulmonary embolism”, the tech replies.  Super.


The scan came back negative, and the “good news” is that Julie might only need to have her gall bladder removed.  (I’m wondering if this is some way hospitals manage patient expectations, “Great news, you are not going to die later today, but that leg will still need to come off.  You must be so relieved!”)


Julie’s ultrasound is Monday.  Madison has a follow up EEG on Monday.  Also, the neonatologist scheduled Madison’s follow-up ultrasound a day early on Tuesday so we “don’t have to get the results on Thanksgiving.”


We could really use Broncos win on Monday.


P.S.  Noah and Chloe are doing just great.  They are just counting down the days until they are old enough to breath and eat on their own, which is perfectly normal for preemies.  Assume no news is good news on them.

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One Response to More news on Madison

  1. Unknown says:

    Bill – You have a very interesting way of giving techincal information, both good and bad, and mixing in a little humor here and there.  It\’s this gift of finding a moment to laugh during these bits of distressing news that will help to get you and Julie through this difficult time. 
    Please tell Julie that we\’re all (the Arnold family) thinking of her and Madison, and hope all will come out well. 
    Keeping you and your whole family in our prayers,
    Sande Gross

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