Saturday, September 12, 2009

Of surgery and kidneys

This Saturday finds us trying to get everything in line for next week. Besides just trying to get things together for a few days in the hospital, I'm trying to do a few of the extra things that don't get done on a daily (weekly!) basis since Glen's cousin Fern and her husband Allen will be here next Saturday night through Monday morning, and Glen's brother will be in town for training as well. We are very excited about seeing them all, but as you can imagine, I am wondering what my house will look like by the time I'm in the hospital with Maddy for a few days. We talking about switching out one night, if she's still in the hospital on Friday.

In the mean time, while I hate it that Maddy has to have to be in the hospital at all, I am definitely looking forward to some quiet time in the hospital! It's crazy busy in the hospital, especially in PICU, but there's no cleaning to be done, AND, I'm done with my schoolwork for another month. So I can play with Maddy, visit with all the hospital personnel, and READ. (Oh, and catch The Office on Thursday night!)

You may have seen on FB that Madeline has had a new procedure added to the list. So now it's a five-in-one: ear tubes, feeding tube, Nissen (wrapping the stomach around the stomach), vesicostomy, and bilateral club foot correction.

If you're not into urology, you may want to skip this paragraph. What? No one left??? Ok, I'll just pretend this is Madeline's medical journal. Madeline's nuclear kidney scan on Thursday produced some interesting results. The test was supposed to show kidney function. They gave her nuclear medicine through an iv, and then watched the blood flow through the kidneys. Very good news on that front. Her kidney function is just fine! So why the continued hydronephrosis (swollen kidneys) that we keep seeing on ultrasound? Why this little wonder has a horseshoe kidney. Normal kidneys are positioned like this, like tipped teacups. A horseshoe kidney, a congenital anomaly, occurs when the kidneys are rotated and fused to look like a horseshoe. This causes them to fill quite a bit more before spilling, thus causing them to appear swollen. Nothing really needs to be done for this, but it's interesting to know. This morning, I had a sudden flash of brilliance. Dr. Cain said that it wasn't related to spina bifida. BUT, I wondered, is it related to DiGeorge syndrome (a.k.a. 22q11.2 deletion syndrome)? DiGeorge is the chromosomal syndrome that Madeline has that they think caused the spina bifida (a very rare presentation). It's main presentation is usually major heart issues, and thankfully, that is not the case with Maddy. She has the characteristic facial features (low-set ears), immune system deficiencies, hypocalcemia (resolved now), possible hearing loss, severe dysphagia (swallowing difficulties) and suspected submucosal cleft palate. And look at this link for DiGeorge, and what do you see??? Horseshoe kidney!!! :) I should be in the medical field.

Ok, if you're still with me, we're doing one last paragraph about Maddy's lovely little plumbing system. She has grade IV-V reflux from the bladder to the kidneys (vesicoureteral reflux). The pressure is significant and could cause damage in the long run. Vesicostomies were standard course 10 or 15 years ago. Now urologists recommend aggressive catheterizing to try to combat the reflux. Madeline is one of the few for whom Dr. Cain believes this surgery is necessary. The vesicostomy brings a little of the bladder through the abdomen to empty directly into the diaper. This will stop the reflux to the kidneys, and we won't have to cath her anymore. Obviously Maddy won't want to be in diapers for life, so in a few years, when she's ready to learn to cath herself, Dr. Cain will most likely perform surgery to give her two stomas, one to flush the bowel and one to cath the bladder, right in her side so that she'll be able to be independent (and in a much better social situation). I am in love with Dr. Cain. He treats me like I'm smart enough to understand what he's saying, appreciates my questions and takes his time with us. On top of that, Dr. Cain has literally written the book on stomas in spina bifida kids. He teaches the procedure around the world and is currently filming about it. We feel very blessed to have him on our team.

Ok, Glen is wanting the computer back (mine is in the shop). Please continue to pray for Maddy during this next week--that she will tolerate the anesthesia well, that she will heal quickly, and that we will not pick up any infection, flu, etc, while we're in the hospital. The reason why we're piling on so much at once is that we definitely don't want repeated hospital stays during flu/RSV season, and of course, every surgery with anesthesia presents risks. We are having Madeline anointed on Sunday morning regarding these concerns, and we are grateful that we can put her in our Father's hands.


Jeanne said...

Thanks for the detailed update. Will be praying for Maddy!

Love ya, Jeanne

Theresa said...

Keeping Maddy in my prayers =]

Esther said...

IF I ever thought of forgetting to pray for my special little niece -- Makayla would remind me I'm sure! Every morning as we are praying (in school devotions) Maddy is Makayla's # 1 request! Of course we'll beef it up a bit this week since she'll have extra on her plate to deal with!
Lots of love from
Esther and Makayla

Scrapingirl said...

I just found you from a fellow homeschooler. I also have a Madeline, so it will be easy for me so remember your dear sweet baby's name. God bless.

Anonymous said...

I will be so happy when this is all taken care of and behind you! Love you, Maddy Kate! Granny is praying and so is our church.

Lori said...

I pray all goes well for your Maddy and the rest of your family. I know that waiting on lengthy procedures won't be easy either. May the God of Peace be with you.

Amina said...

Hi Pam,

My Name is Amina. I live in Toronto Canada. I have spoken once with you via Daily Strength.

I have a little SB boy and he has many other non SB related issues just like Maddy.

PLease have a look at this forum: A lot of the children in it have issues very similar to Maddy. They are not regular SB kids, they are called Vacterl kids.

Every letter of the word Vacterl stands for something. And quite Frankly Maddy has most of them.

Vacterl is the diagnosis that was given to summarize my son's condition, since it wasn't just SB.

Read my profile on the the same forum, under username Luckyme.

Good Luck and feel free to contact me.

PS: I have two other kids the same age as yours!!!

Lisa said...

Such a lot for Maddy to go through! And Mommy too! I'll be praying for you all this week. Maddy is a tough little girl, and I know she'll come through with flying colors. Call me if you get bored (or tired of reading) in the hospital.

Lady Jen said...

Will be thinking of you all and little Maddy! I just now found your blog again and saw that you are homeschooling this year. Good luck!