Posted (Tina) in All Posts on September-24-2009

One thing I forgot to mention on yesterday’s post was that we were not able to arrange for her teeth to be examined, but they were able to conduct an ABR hearing test while Ella was sedated. They didn’t get much new information, however they did test the auditory nerve that connects to the brain. It tested normal which is good. Ella was starting to come out of sedation so all they had time for was a tympanogram. It tested flat again. This means that she has mid-to high pitch hearing and cannot hear the mid-to-low end pitch sounds. Also, her eardrum was not moving and the eardrum appeared a bit red. All of this indicates what we have been told over and over: she likely has fluid in her ears.

This time, I expressed concern with waiting around for another test to have a different result and asked for a recommendation of an Ear, Nose, Throat Specialist through the Children’s Hospital that can definitively look at her ears for fluid and any other medical issues. Thankfully, she has never shown signs of an ear infection but it doesn’t mean that her ears do not have fluid. More and more, this seems to be the likely culprit. The audiologist explained that this might be why she seems to have “selective hearing”; at any given time she may have more or less fluid in her ears which can impact her hearing. So if nothing else, this test simply confirmed that we need to pursue Ella’s ear health from a medical perspective. This would also mean just making sure that there is nothing medically impeding her hearing and putting the audiology hearing tests on the back burner until we know she is at a point where she will tolerate the sound booth tests.

Last night was a bit tough for Ella. The antibiotics did a number on her tummy and gave her loose stools. The only thing that helped this time: we were prepared. This happened last time she had her cath procedure so we knew to expect it, plus we brought Maalox from home so we could avoid any arguments with the nursing staff. We did tell them that we brought the Maalox and recorded when we administered it. Fortunately, they were satisfied with that protocol. We only used it twice, once after each dose of antibiotic. It was amazing how it coated her tummy.

We had a tough time getting all of Ella’s medications sorted out. We thought everything was fine by 8pm or so last night and then realized that we were still missing meds. I even discovered that her diuretic dose was way lower than what it should have been. So, I gave her the 0.8ml they provided, but she was supposed to receive 8ml. At first, I just thought that maybe the concentration of the medicine was different. But we discovered that it wasn’t concentrated different, so that is a big difference.

Therefore, her numbers started to not look as good as the night continued. We increased her oxygen to 1 liter and hoped that we could resolve all of it in the morning. It wasn’t coming easy, so we became insistent as soon as shift change came at 7am. We were in the hospital for one reason. By not giving her diuretic for her fluid issues, we could bring on another issue. It is so strange because we have never had this much challenge getting Ella correct medicines at the Children’s Hospital. But even today as we left, they still never provided 2 of her medicines. I wasn’t that concerned because I knew we were headed home and they are meds that are only taken 1 time per day, but still. It is easy to see how mistakes and carelessness leads to bad medical mistakes. It can happen to us and yet, we are really involved with Ella. It was not professional and we were surprised to see it happening when they’ve been so good about this in the past.

Once we had an echocardiogram and chest xray in the morning, Dr. Fagan came to check on Ella. We expressed our concerns on the diuretic but also let him know that she seemed to be doing really well. Next thing we knew, the nurse came back to our room with discharge orders. It was about 2pm by the time we left the hospital.

With more diuretic on board and better blood flow in her SVC and to her brain and all of her extremities, her color is so much better. Her eyes are less puffy and her color is amazing. I remember this happening last time – – she just looks better. Especially today, there was such a drastic difference. Even though she is still catching up on sleep, she is happy and feeling better which is a huge relief.

Thanks again for all the support and prayers. It’s nice to be home so we can escape hospital food. Also, we’re looking forward to catching some much needed zzzzs tonight in our own beds.

The Williams on September 24th, 2009 at 9:15 pm #

Welcome home… love you!

Jim and Char Jordan on September 24th, 2009 at 9:56 pm #

Miss curly locks looks great. Have to catch up on the past. Love you.

Jim and Char Jordan on September 24th, 2009 at 10:16 pm #

I just realized that I haven’t been getting your blog reminders except for today. Please check if possible. You are fantastic. We love you all.

Pat Hadden on September 24th, 2009 at 10:18 pm #

With all you had going on, you had to to prepare such a delicious looking dinner? Man, you guys rock. Much love to you all and hope Ella keeps improving.

Loren Lizotte on September 25th, 2009 at 6:28 am #

Ella is getting so BIG! I pray for you every day!

Steve and Joan Odell on September 25th, 2009 at 7:46 am #

Glad to see you smiling and looking better – Love your hair and smile!!! Prayers and hugs – Steve and Joan

Marge (A Friend in Indiana) on September 25th, 2009 at 7:51 am #

Thanks and Praise to God with love and prayers to you all…..glad that Ella is home and doing well; she looks great!

Eve Johnson on September 25th, 2009 at 7:51 am #

Super parents!

Williamsburg on September 25th, 2009 at 8:52 am #

It’s amazing to think back on all the medical ‘miracles’ that have happened in Ella’s life to get her to the point where she is today. Still miles to go, and mistakes happen as well (thank goodness for seasoned, alert parents), but we continue to praise God for the way He has provided for the West family in ways both large and small. Thanks for Ella Renae, Jesus. XOXOXO

Alicia Martin on September 26th, 2009 at 8:03 am #

So glad that you are all back home. As always, praying for you all!

Joel Snyder on September 27th, 2009 at 6:34 am #

Ella, It was good to see you at lunch today. I know that you were sleeping but you really looked great. I am praying that you will be on the mend and making great progress soon. Love,Grandpa!!!!!!!!!

Laura Huene on September 27th, 2009 at 12:57 pm #

What an adventure! So glad you are home and getting settled in…praying for you.


Gloria & Red Jacobsen on September 28th, 2009 at 3:22 am #

Glad to see that your home! Prayers for Ella and the two of you. God bless you!

julie kirk on September 28th, 2009 at 10:14 am #

Ella just amazes me. What a trooper. Blessings to your sweet little family…

Liz Nelson on October 1st, 2009 at 7:18 pm #

Glad you are home. Ella is looking good. Hope you all get some good rest.
BTW, I am so jealous I love hockey and the KINGS! Glad you were able to see a game

Lesli Richards on October 2nd, 2009 at 6:33 pm #

okay……really need Ella fix….time for an update!

Love, Lesli

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