Posted (The West's) in All Posts on October-4-2009

Ella has been doing much better since her return from the hospital. Overall, she is less fussy and irritable.  This just means that the pressure from her occluded SVC must have been causing some discomfort.

Every morning, we’ve had bloody noses since her procedure.  This is a side effect of her new medicine, Plavix.  It was so bad this morning that we finally called the cardiology department at the Children’s Hospital to ask for some direction.  The on-call doctor advised to skip her afternoon dosage today.  If we do not hear from a doctor by tomorrow at 2pm, we were instructed to call back for further direction.  We know that Plavix, along with her daily dose of Aspirin, is intended to help Ella from tissue re-growing into her SVC stints.  However, really bad bloody noses are not a great side effect.  We’re hoping to hear back tomorrow to see what we can work out.

Ella visited the pediatrician this past week.  We discussed her weight gain.  She went from 25.5 pounds in late July to 28 pounds at the hospital.  However, we weighed her again this past Thursday and she was 27.5 pounds.  This means that she likely had a bit of fluid on board prior to her SVC procedure.  In any case, Dr. Perry was happy with her weight gain.  At her 2 year check up, he stated that if she gained 4 pounds over the next year, that would be good.  However,  he tracked her weight on the growth curve and stated that for Ella, this increased weight gain is good.  So, he wants to keep her calories each day the same.

From there, we discussed changes to her food plan.  Dr. Perry would like to see her switch from an infant formula to a toddler formula, which has more of the minerals and vitamins that are age appropriate.  However, most of the toddler formulas are 30 k/cal per ounce.  Right now, Ella is on 26 k/cal.  When we’ve tried increasing the density of her food before, her tummy has given her grief. But it has been a year since we have tried and a year since her nissen surgery, so we think the time is right to try again.  We wanted to wait until her SVC was re-opened, but otherwise think that this is a good time to work towards this transition.

I suggested that we keep her on the same food and slowly increasing the calories, to see if she can tolerate the increased density.  This way, we know it is the density and not the food itself. One good part: since her caloric needs are sufficient, this means that her fluid volume will decrease if we can make it to 30 k/cal formula.  Just yesterday, we tried increasing the Ele-Care to 28 k/cal (1250 ccs).  So far, so good.  This is the first time that she has remotely tolerated a higher calorie food.  It is 100 ccs less than her 26 k/cal formula.  We’ve continued with 6 g-tube feedings per day.  Her body seems to like the smaller amounts, spread apart during the day.  With reduced volume, we can likely try 5 feedings per day when we’re ready to try 30 k/cal formula (1170 ccs).

We’ve still battled granulation tissue around Ella’s g-tube, so Dr. Perry took care of that for us.  Ella also received her flu shot.

We have an appointment later in the month for another follow-up echocardiogram, to check the flow of the SVC and make sure things look good.  Also, we have an appointment with an Ear, Nose, Throat specialist to check the fluid in Ella’s ears on Nov 6th.  We have a feeling this appointment might lead to another procedure, placing tubes in her ears.  But we also don’t know if the fluid in her ears might be causing discomfort along with less-than-perfect hearing.  So we’re hoping that this might be a way to eliminate this problem, especially as it relates to her hearing.

One time of day that Ella is still incredibly fussy is the morning. When she was younger, even 4 months ago, she would wake up happy and kicking in her crib.  She would smile at you.  Not any more!  Each morning now, she wakes up screaming and will not tolerate anything.  Not even a diaper change.  Once you pick her up or give her something she wants, she stops.  Wow, I know that these are terrible twos.  But I’ve also heard that age three can be even more challenging.  Yikes.

The last week, Josh was kept busy with contract work.  We’re thankful for the income and pray for continued guidance on His plan and will for our lives.

An excerpt from my devotional the other day that resonated with me:

Psalm 119:71 – It was good for me to be afflicted

It is a remarkable occurrence of nature that the most brilliant colors of plants are found on the highest mountains, in places that are the most exposed to the fiercest weather.  The brightest lichens and mosses, as well as the most beautiful wildflowers, abound high upon the windswept, storm-ravaged peaks.

One of the finest arrays of living color I have ever seen was just above Saint Bernard Hospice near the ten-thousand-foot summit of Mount Cenis in the French Alps.  The entire face of one expansive rock was strikingly vivd yellow lichen, which shone in the sunshine like a golden wall protecting an enchanted castle.  Amid the loneliness and barrenness of that high altitude and exposed to the fiercest winds of the sky, this lichen exhibited glorious color it has never displayed in the shelter of the valley.

As I write these words, I have two specimens of the same type of lichen before me.  One is from the Saint Bernard area and the other is from the wall of a Scottish castle, which is surrounded by sycamore trees.  The difference in their form and coloring is quite striking.  The one grown amid the fierce storms of the mountain peak has a lovely yellow color of primrose, a smooth texture and a definite form and shape.  But the one cultivated amid the warm air and the soft showers of the lowland has a dull, rusty color, a rough texture, and an indistinct and broken shape.

Isn’t it the same with a Christian who is afflicted, storm-tossed, and without comfort?  Until the storms and difficulties allowed by God’s providence beat upon a believer again and again, his character appears flawed and blurred.  Yet the trials actually clear away the clouds and the shadows, perfect the form of his character, and bestow brightness and blessing to his life.

Laura Blackwell on October 4th, 2009 at 10:37 pm #

It was great to catch up on Ella tonight. The pictures are so sweet. An amazing scripture you closed with. Prayers for the journey-

Steve and Joan on October 5th, 2009 at 7:59 am #

So good to hear from you – Ella, you look wonderful and so glad everything is going well. Josh, praying for soluations and guidance in your job needs. Hugs and prayers – Steve and Joan

Jennifer Harris on October 6th, 2009 at 3:33 pm #

We continue to pray for this sweet beautiful gift from GOD. Great to see her resting!
Peace & Blessings

Racheal Morris on October 7th, 2009 at 7:49 am #

Hello West Family!
Ella is looking cute as a button as usual!!
I can sympathize with the screaming rage she gets into because Daniel gets into a fit and starts his super scream and won’t stop until he gets what he wants. I swear people think I am abusing him when he starts screaming while we are out and about! I hope once he can verbalize better this will stop, I am going to lose my hearing if it doesn’t. Daniel had persistent fluid in his ears and he just got tubes in Jun 09 and got his super huge adenoids taken out as well. He started babbling a lot more about 4 weeks after the procedure and I hope his sense of taste was increased as well now that he can breathe better. He eats a lot of small meals too and he hovers around 23lbs. We have been using Kid Essentials Boost 1.5 cal which is 350 cals for 8 oz. Love it! I have become a bit obsessed with his weight and feel like I am always thinking about ways to make food more calorically dense. Now if I can get him to sit still for 2 secs he might gain weight.
Thinking of you all often! Take care and God bless.

Joel snyder on March 7th, 2010 at 12:14 pm #

Ella, Glad to hear that you are voicing your opinion like all normal two year olds. Keep up the good work. Love you!!! Grandpa.

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