January 24, 2013

Guest Post again, Thursday update

Friends -

It's Elizabeth DeHority again, from http://keeponspinning.wordpress.com ... Adéye is swamped with all the medical folks at the hospital and asked me to post for her just one more time to let you know all the news.  I am a retired family practice doctor, so please forgive me if all these details are excessively medical, but those are the things I have been so worried about.

So Adéye and Hasya are at the Children's Hospital in Denver.  Anthony and the other children are back home, and unfortunately Anthony had to go back to work today.  They have local friends who are caring for the other children, but it would have been so much easier if he could have had more time off...

There is a constant stream of medical staff in and out, at least eight different sorts of specialists, as I can count, and PT, OT and all sorts of other folks.  Adéye is so very tired, and feels REALLY guilty that she's not been able to keep up with all the emails and messages, but the traffic is constant, and she has to talk to and learn from all these people, and make decisions about so many things.  

All of Hasya's labs are now normal.  They are following things closely, but are amazed at how perfect her heart, liver and kidney function is, and how fast things normalized.  She is still on IV fluids, but they also started NG tube feedings, at a very slow rate.  Neither Adéye nor the occupational therapy staff could get her to swallow anything, so NG feedings were required.  They have to do testing tomorrow for reflux, and the can't even do a swallowing study, because she just won't swallow, so they will do a different sort of scan, using her NG tube.

The plan is that she will need an implanted G tube until she is able to take enough by mouth to heal and grow.  Depending on the results of the reflux test, she may also have a Nissen surgery, which is a procedure in which they wrap the top of the stomach around the bottom of the esophagus to stop reflux.  They will do this surgery next week when she's a little stronger. At the same time, to avoid an extra anesthesia, she will have extensive dental work.  Adéye is so happy that the hospital is working hard to coordinate everything together, to get it all taken care of.

Let's see, what else.  She had lots of X rays, that show bilateral hip dysplasia, and a 33 degree scoliosis curve.  Because we know that Hasya will have a big growth spurt now that she is surrounded by so much love and has good nutrition, they will be taking care of this scoliosis right away.  The physical therapists are also looking at how bracing and splinting her legs and feet might help with her contractures and her pain.  One thing to be grateful for - she actually has some mobility in her ankle joints, so they may be able to let her start in a stander, to get her upright and get some weight bearing started.  They brought in a tiny, tiny wheelchair today, but they are going to wait about 6 months to fit her for her own because she's about to grow so fast, and custom wheelchairs need to last a couple of years, so it's best to wait.  Colorado has a used equipment lending exchange, so Adéye will probably be able to get a temporary wheelchair and stander for her there right away.

What is a stander?  A stander is a wonderful piece of medical equipment that allows even a totally quadriplegic person with no head control to stand upright.  Standing upright makes breathing and digestion much, much more normal.  Plus, when you are in a stander, you put your body weight through your bones in your legs.  Weight bearing is important because she probably has severe osteoporosis  - weak and fragile bones - but they haven't done the official testing yet.  Other things have been more urgent.  Like her EEG for example.  Adeye found out only when she picked up Hasya last week that she was on a seizure medicine, they gave her a few doses when she left the orphanage.  There is no information that she has had seizures, though.  They did a new EEG at the hospital here, and it was definitely abnormal, so they are continuing seizure medicine, switching her to an American kind....  the neurologists will be in tomorrow, to discuss it all with Adeye.

The ophthalmologists have been in, too.  She has severe amblyopia (lazy eye) and they are worried that because her brain hasn't had input from that eye for so long, it might not ever work well.  They can do surgery to make both eyes go the same direction, but how much vision she will have is unknown.  We talked today, however, that her brain certainly isn't as mature as a typical 15 year old's, and it's about to have a wonderful growth spurt like the rest of her body, so I think it's reasonable to be hopeful that patching, prayer, and other amblyopia treatment might help more than the ophthalmologists predict.  We'll see.  

So what does Adéye need?  She says she needs you to know how grateful she is for all the prayer and love.  She requests patience, with her inability to return emails and messages promptly (or at all, sometimes...)  She will know much more next week how local folks might be able to help.  With Anthony back at work, she might need mamas who can come to the hospital to sit with Hasya if she needs to go home to manage things there. Unfortunately, she won't know until after the weekend exactly what the schedule will be.  

She doesn't need food or gifts at the moment, but she would LOVE cards or children's drawings in the mail to decorate Hasya's room.  Hasya's story has given Adéye a wonderful opportunity to demonstrate to the hospital staff the value of EVERY human life, and being able to show them that Hasya is loved by so many of us would help even more.  Here is the address:

Hasya Salem  Room 655
c/o Children's Hospital Colorado
13123 East 16th Avenue
Aurora, CO 80045


And finally, prayer.  Adéye is so grateful, she knows that we have all been faithfully covering them at every moment.  But we need to keep it up.  This is all such a stress, and Hasya is so fragile.  Adéye might be upset with me for saying this, but I think that right now she is fragile, too.  She is getting so little rest, and the demands are unrelenting.  I worry that she might get sick, being exposed to all those hospital germs...  

She hopes that over the weekend, the medical craziness might calm down enough that she has time to post heself, but appreciates your patience with me trying to translate her calls and texts into these paragraphs of text.

Oh my goodness, we have to talk about Kael!  He is thriving.  Absolutely thriving.  He has been with Anthony 100 % of the time until today, and also got to be with Adéye for a little while yesterday.  He is doing amazingly well, with very, very normal adjustment.  It just reminds me, how God works everything out,  how perfect it was that the older boys were able to come along on the trip and start their bonding process with their brother... nobody knew then that Adéye would have to be away from him, so it's just one more thing to be thankful for.  

Thanks so much, 
Elizabeth


6 sweet thoughts from friends:

bremorris said...

Elizabeth, you are performing a major task which is a huge relief for Adaye I am certain. The testimony of love and caring for her needs is amazing and God is smiling down at you all and those so diligent supporting with your prayers. God continue to get the glory

Anonymous said...

PRAYING!!!
Joy

Ladyblog said...

I've been fasting and praying today and sweet Hasya has been one of many children on my heart. So thankful for an update, but please know that people understand how difficult this season is and how busy you must be dealing with it all....updates help to tell us exactly how to pray for your family, but they have to be your first priority. I'm so inspired by Hasya's strength and will to live despite the utter neglect she has lived through and I'm so grateful that she has such a wonderful family who is doing the best things for her despite the challenge it must be to manage it all.

Melanie said...

Such a wonderful update on sweet Haysa and Kael!!Thank you!! I can see that Jesus is already at work healing and restoring Hasya to health. I am thankful that her bloodwork is normal and can already see answers to prayer!!! Thank you Jesus! I am going to send a card and pictures for Hasya and Adeye! I am continuing to pray for them both and I put Hasya on a prayer request. I know God is going to do amazing miracles for Hasya for His Glory and show the world The love of the Father!!?

Our mission said...

Just read your updates....thank you for letting us all know. We will be praying!

Anna said...

Elizabeth! What a small world! I "know" you from Ginny's blog "small things" and I think Ann Voskamp linked to you and your Easter egg coloring tutorial. It is such a joy to read your words here on another blog, two different passes of mine that are unrelated. It reminds me of how small the world really is. Thank you for the updates.

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