Posted (Tina) in All Posts on August-27-2009

Well, we think that it might have happened at the end of last week at the Children’s Hospital. Long story short: Ella got sick and started with symptoms on Sunday, Josh felt them strong on Monday and me on Tuesday. So we’ve all been at home trying to recuperate. The good news: we don’t have fevers or anything. Just sore throats and stuffed/runny noses. But we’re managing.

I still have photos from our Copper trip, so I’m going to pleasure you with those on this post rather than up-to-date pictures of the West family with sniffles!

A quick update on Ella: last Friday we went to Children’s Hospital for another hearing test. The test was pretty much the same: no mid to low range hearing. However, the tympanogram came back “normal” for both ears (testing for fluid in the ears). This is the first time it has ever been normal. They recommended that we return in 6 months to test her hearing again.

I have not appreciated the relaxed approach when it comes to Ella’s hearing. The audiologist is very sweet, but it is this approach of “wait and see”. And that makes me uncomfortable, knowing that if certain conditions do exist in the ears, you can cause hearing loss by ignoring it. So, I made an appointment with my ear doctor to take a look at Ella. By the time he saw her this past Monday, she was already into her cold. So, the tympanogram was not normal and he could see fluid in her ears. Who knows if this was directly related to the cold or not?

At this point, Ella does not cooperate with a regular hearing test in the sound booth. She gets so upset. The only true way to rule out hearing loss is by sedating her for a procedure and hooking her up to a machine that will track her brain waves. At the same time, they could put ear tubes in. This is a low-risk approach to eliminating any fluid accumulation and definitively letting us know that any hearing loss tests from that point forward would not be related to fluid. But we feel torn because we don’t want to put her under anesthesia just to test hearing. We know she can hear some things, we just are not sure how well. Developmentally, she is behind and it is hard to tell if hearing loss is contributing or not…and it would be nice to know…but I’m not sure we want to take that step just yet.

If we knew that Ella was going to have another procedure in the coming months, it would make sense to do it at the same time. For now, we are going to go back to my ear doctor in 6 weeks to see if there is still fluid in her ears. From there, we can make a decision.

As far as feeding, Ella has still been having some challenges. When we came home from the hospital, it seemed the Reglan had kicked in and worked beautifully. Then, we decided to try increasing feeds while we were in Copper last week. After trying the increase for the entire week, we realized that it is still too much volume for her to handle 4 feeds per day. She gets fussy, uncomfortable, and ends up getting the runs. This is part of the reason we had the “violent explosion”. I did not share that there were several days at Copper where I was changing her outfit and bed up to 5 times per day. Yes, I was constantly doing laundry on vacation!

I’ve since spoke with her pediatrician. He thinks that the larger volume is better able to empty from her stomach with the Reglan, but that her intestines cannot process that much food all at once. Therefore, it gives her the runs. We don’t think the runs is from her cold or a virus because we have been dealing with it for a few weeks now, way before she became sick the past few days. And it does seem like the runs initiate if you try and feed her more food during a feed session and/or if the feeds are timed too close together.

Also, she has been more dehydrated. Whenever Ella lets you know that she wants water from the syringe and opens her mouth for more, you know that she has instinctual thirst going on. She did that before our visit to the ER and then started doing it again the past several days. The runs can make you dehydrated.

We returned to 5 feeds per day earlier this week, but it still doesn’t seem like enough. Dr. Perry wants us to go to 5 smaller feeds during the day and the food pump at night, to see if that resolves the problem. Once again, several steps backward. The good news: usually this means that we can take steps forward at some point too! So we’re trying 5 feeds today at 225ccs and then 225ccs in the food bag overnight. We’ll see if her #2 returns to normal in a few days.

Finally, we had an appointment with her pulmonologist a couple of days ago, but canceled since we were all sick. We wish the timing would have been different. Ella’s collateral veins have re-appeared on her chest. They existed there prominently before the SVC procedure, but this is the first time we have seen them visibly return since the placement of the SVC stints. We’re scared about what that might mean. I just noticed them earlier this week. Maybe they would be nice and magically disappear, but that is not likely. This means that going back into the heart catheter lab might be in our near future. We’re trying to reschedule the echo-cardiogram to check the SVC flow and pulmonary hypertension, but have yet to receive a call back with a date.

On a final note, please lift up Josh in prayer. He has a third interview with a company tomorrow. We’re hoping it goes well and if it is the Lord’s will, that He will continue to open the doors for this opportunity.

loren on August 27th, 2009 at 11:02 am #

I can’t stand a sore throat. But Ella sure takes great pictures no matter what!

megan on August 27th, 2009 at 12:12 pm #

Hi doodlebug! I am sorry you haven’t felt well but I love the pics.. You and mommy playing peek a boo is to cute! =) Hugs

Williamsburg on August 27th, 2009 at 12:21 pm #

Sorry you’ve been sick, guys – will be praying for wellness and provision on the job front. XOXOXO

Joan and Steve Odell on August 27th, 2009 at 1:40 pm #

Oh fiddle – summer colds are hard to kick. Prayers for all of Ella’s issues to settle and wisdom for the docs. Prayers for you, Josh to be led where you are to be. Continued prayers for all of you – our special West family. Hugs and love – Steve and Joan

Katy Swiergosz on August 27th, 2009 at 2:15 pm #

She is just too cute. Hope all of you feel better soon!

Meg on August 28th, 2009 at 1:10 am #

I hope you all get to feeling better soon!

Quick note on the audiologist & hearing tests…

ABR hearing tests are not fool proof, so it might not be worth it to sedate her…I personally think they’re not good at all. Everyone’s brain works differently, and depending on Ella’s brain, you can get false reading. I’ve heard one too many stories of children getting false results on an ABR several times, and getting lined up to get an unnecessary cochlear implant. It really isn’t the “true way” to test her hearing loss, but it does appear to be one of the best. I would change audiologists, ask your SLP to recommend one that she knows or works with. The laid back approach is NOT good. Hearing loss is best addressed early on. It sounds like your audiologist is taking it easy because Ella is still under 5yrs, which is the assumed cut off for language development to begin. You NEED an AuD that will be assertive!!!!!

Hearing aids are EXPENSIVE and most insurance companies will not cover them, they’re more likely to cover a cochlear implant (if the person’s HL is sensioneural of course.) The sooner you get an audiologist who will better monitor her HL, the better. Because, if she does need hearing assistance, you will have more time to research getting financial help to purchase them.

Anyways, that’s my limited knowledge on the medical side of the subject… I hope it helps!

Keep working with the SLP and sign & gesture with Ella as much as possible!!

Joel Snyder on September 27th, 2009 at 5:59 am #

Ella, Sorry about the runny nose and sore throat. I am praying that you Mom and Dad all get well soon. Love,Grandpa!!!!!!!!!!!!!!!!

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