Hello and to the point…

The Seizures: As of today, the seizures have (for lack of a better descriptive word) gone down, to the point that we don’t think she has had any the past few days.  My guess is that they will simply come in waves.  Several for several days… and then we won’t see any for several days.   We know that the medicine that they have her on now will likely not stop or control every seizure, just a majority of them.  The docs are still looking into all the anti-seizure medicine options.

GI situation:  Yesterday they performed another abdominal X-Ray and they can’t see any evidence of an obstruction.  I guess this is “neutral” news for the very simple fact that she doesn’t have an obstruction.  But it does not offer any clues as to what the underlying cause of the GI complications.

EKM is still having problems with her distended stomach so they have stopped her feeds.  Her stomach went down but as of yesterday it became distended again, after a few days without milk.  So this is yet another troubling turn of events.

There are only speculations as to why her stomach is starting to behave like her intestines and not push air through her GI Tract.  We know from the biopsy that it is not Hershprungs Disease.  

Miscellaneous updates: We aren’t sure when our house will be put back together.  We have been in constant contact with insurance adjusters, agents and repairmen.  We aren’t even sure to the exact extent of the damage.  Yesterday we learned that more of our kitchen is likely damaged than expected.  So maybe we’ll get some new cabinets and such.  At least that could be a positive.

We aren’t sure exactly when we will be leaving the hospital either.  We are going to speak with some of the doctors about home care… what to look for, what to avoid, what to expect, etc.

The following quoted material has been taken from a message sent by one of Ryan’s sorority about a March of Dime’s Walk:

"I am sure you have all heard about Ellie Kate.  Our thoughts and prayers are with her family. As a way of helping we are going to be participating in the March of Dimes on May 6, 2006 and will be walking in her honor.
We also have baby banks located all over campus to help raise money. If you would like to help out please send donations to the Alpha Gamma Delta house or call Sheena.  …  We appreciate everything you do and we hope to see you soon!"

Everyone is welcomed to join us as we walk next Saturday in honor of Ellie Kate.  The walk begins downtown at the Myriad Gardens.  Registration is at 8:30 and the walk begins around 9:30am.  Our family will be there and we look forward to seeing anyone who would like to attend.  For more specific details and for t-shirt info, contact the ladies above.

Lastly, thank you for your unwavering support and prayers.  We are blessed to have such friends and family that love us and care for us.  I think everyone desires a pat on the back.  You know you deserve it… come on, start patting yourself.

 - MFM

Though He slay me, yet will I trust Him.  Job 13:15

April 13, 2006

The last 2-3 days have been very difficult.  Elizabeth has experienced some seizures.  They are partial or focal seizures... lasting anywhere from 5-20 seconds.  That could be a reaction to some of the new medicines she is on or an advancing of her condition.  It's too difficult to tell right now.

The other difficult news has been that her veins are growing tired faster and faster from the many IV sticks.  So much so that she had to undergo surgery today to place a catheter style main-line in her chest.  This will allow her once again resume IV feedings and IV medicine.

The bigger news of all this is that we are trying to get her transferred to OU Children's Hospital.  Her specialists are there and being a college, they naturally have more specialists in all the other areas as well.  The reason why we haven't been there the entire time is, bed space.  OU Children's bed space almost always fills up faster than Baptist so we always get diverted to Baptist.

We'll keep you all updated as soon as something changes.

April 10, 2006

This is going to be one of the weirdest and funniest posts ever but... Ellie Kate pooped last night.  She did it all on her own, with no help from Glycerin, enema, suppository or the like.  Her stomach was battling all night last night, causing her quite a bit of pain and discomfort... but after a few hours, she finally got some relief.  Hopefully this is a sign that things are not only moving around in her system but moving through her system.

This may or may not be a news flash but Ellie Kate is a fire cracker.  This morning she decided that she was tired of where the IV was so she pulled it out. This isn't the first time she randomly started pulling at her tubes and lines.  So she spent a good part of this morning being held down by a team of nurses while they found another place for her IV (her foot).  I'm not sure if there is a weight-lifting competition for 4 month olds but EKM would win if there was such a thing.  She is ridiculously strong.  But she is way cute, and by way cute, I mean totally beautiful.

Once again, we'll meet with our handful of doctors and update this page as we get updated.

Here are some prayer suggestions for those with the time:
(1) pray that EKM will continue to have movements, which in turn will eliminate all the barium in her system.
(2) pray that her system will return to its normal motility and function.
(3) pray for her momma, Ryan Elizabeth... this has been a long and grueling ordeal for Ryan.  She is very tired and wants to take EKM home.
(4) pray for Conner, he's tired of not having his parents at home.

 - MFM

April 7, 2006

What we've learned up to this point is that something is wrong with Ellie Kate's small intestine.  The word that is used to describe what is wrong is "ileus"... meaning intestinal obstruction.  We don't know if this is an intermittent obstruction, partial obstruction or (as one doctor has hypothesized) a showing of poor muscle tone related to NKH.  The last possibility is something that I dispute, based on no literature that I've found to support it but he is a doctor and might be smarter than me.... might.

Anyway, the treatment regime is consisting of TPN, reglan, and 1-2 ozs of milk every 3 hours.  We'll try this approach to see if it (A) stimulates her small intestine and (B) the reglan helps the ileus.  If this doesn't work we will probably transport EKM to another facility... possibly back to Houston.

Pray that Ellie Kate's small intestine will start to clear up and function properly again.  We'll keep you updated once we receive updates.

 - MFM

April 5, 2006

Ellie Kate has endured a battery of testing during this hospital stay... and it looks like we may be getting closer to knowing what is causing all the GI problems.  Yesterday, a "lower GI" was performed and with no signs or evidence of an obstruction.  This morning, an "upper GI" was administered.  This test took much longer to perform, for reasons not germane to this post (ask your doctor about the diffrence between and betwixt the two.)

From the upper GI, the preliminary feedback is that something is not right.  This created a melancholy reaction from Ryan and I because we don't want anything to be wrong with EKM.  But, since something is wrong with her, we want to know what it is.

After we get a definitive answer to what it is, we should then learn what treatments and remedies are at our disposal.  Tomorrow has promise.  Promise in that we are one step closer to relieving EKM's pain and discomfort and one step closer to her and her mommy sleeping in beds under my roof and not Integris's roof.

Thank you for the prayers, emails, phone calls, carrier pigeons and the like.  In all seriousness, I enjoy reading this website because of the uplifting nature of your thoughts and prayers.  You are evidence that God is real and working in my life and the lives of my family.

Thank you and Good Night Now.

 - MFM

April 4, 2006

A lot has happened since the past update.  The cliff notes version is that Ellie Kate is and will be undergoing some GastroIntestinal (GI) testing.  They performed a lower GI tonight that the GI specialist will look at in the morning.  The preliminary analysis of it is that she does not have any blockage in her large intestine.  Ellie Kate should undergo an upper GI tomorrow at some point.

The bad news is that she had her first seizure this morning.  We have her in the PICU (our home away from home)... she has not had any since the morning, but she has resummed her myclonic jerks.  They have lessened in intensity and frequency as the sun moved along the sky.  Though she is in the PICU she is stable.  She is not on the ventilator or any other life sustaining device.

Tomorrow we should know more than we know right now so we will update this site as soon as we can.  Thank you for your prayers and offering of support.  Once we stop going 100 mph we will return all the calls and make time for our friends.

 - MFM

April 3, 2006

Well, its becoming routine that whenever we need to take Ellie Kate to the Hospital... its on the weekend.  This past weekend (March 31-April 2) Ellie Kate started throwing up and her stomach became distended.  We later learned that she had "an incredible amount" of air in her intestines creating gas and extreme discomfort.

All that to say, Ellie Kate is back in Baptist Hospital undergoing testing and evaluation.  The good news is that she is not in the PICU and is not critical or life-threatening.  She will undergo some GI tests today.  They have taken away her medicine and food and that has helped the problem.  They will re-introduce her food and medicine slowly to see if she can handle them.  We will post an update when we know more.

The short-version:  EKM is in the hospital with a GI problem and will undergo some testing.

 - MFM