Sunday, January 29, 2012

Q and A #1

How is Xander handling the hospital stay (laying in bed all day) and all of the pokes and prods? I imagine its hard for him to understand why this is happening...

Interestingly, he isn't laying in bed all day and isn't expected to. He is not allowed to leave his room, but if he wasn't contagious he could leave his room and go to the Child Life room where there are toys and activities for the children.

Xander spends most of his day snuggled in the recliner with either Brandon or I watching TV. He has been brought some toys by the Child Life Department, so he plays too.

He's not been poked since he was in the ER. They drew blood there and put in a heplock in case he needed an IV, but we lost that line on Monday afternoon. So far, we have been blessed to keep him hydrated enough with sprite and pedialyte although there have been moments that it looked like we were headed down the IV road.

The prodding he takes like a champ. The one thing he hates is having his temperature taken under his arm. He willingly allows them to take his blood pressure, listen to his heart, chest and belly sounds and even feel his tummy. How long he tolerates them pressing on his tummy is dependent on how distended his tummy is, of course.

The staff here is fabulous and understand that he is a child, not a tiny adult. For instance, when he was triaged in the ER, the nurse did the entire exam with Brandon standing and holding Xander. Many exams have taken place in our arms, or snuggled in the recliner.

Why didn't you guys go to DC National? It would have been a closer commute for Brandon.

Honestly, we hadn't heard much about DC National. I'm sure lots of people have had a positive experience there, but we also wondered if it was "too close" and if they would just consult the gastro that refused to treat our son. So instead we are 3.5 hours away from home at DuPont.

How did you choose DuPont?

It was the next closest Children's Hospital to us. I also have two friends that highly recommended it, as they have come here with their children. CHOP (Children's Hospital of Philadelphia) is about 30 minutes further than here.

Why didn't you go back to Augusta? Your children are there.

They are there, and they are being well cared for. But it is also 8+ hours from home, and Brandon wouldn't have the ability to go back and forth between work and the hospital. Also, we were concerned we couldn't make it all the way there, in the condition that Xander was in on Thursday night.

How long do you expect to be in the hospital?

No one can answer that yet. Xander is already showing improvement from the cdiff. But, as that clears up, we are going to attempt to address his chronic diarrhea and lack of growth. At the very least we need him to be eating a better diet than what he currently is willing to eat. For example: His current diet is terribly deficient in a variety of vitamins and protein. He is also very low in Vitamin D, so that will need addressed.

Are all of his issues due to the Cdiff? / Great! Now you finally have an answer!

No, all of his issues are not attributed to the Cdiff. Our doctor's best guess is that Cdiff has only been an issue since this past Wednesday and does nothing to explain his lack of growth since June, the chronic diarrhea, food reactions or the previous weight loss so we only have an answer for the acute issues, not the chronic ones.

Did he get Cdiff because of antibiotic use?

Not likely. He's only had antibiotics twice in his life. Once when he was a very small baby due to an ear infection. And again this past October for fluid in his ears. Most of the time we don't use antibiotics for fluid (our doctor's preference), but we were headed out of town for vacation and after we didn't see improvement we went ahead and got the antibiotic called in. According to Dr. Swami, if the antibiotics caused the cdiff, then it should have showed up within 3 weeks. This can be caused by overuse of antibiotics though this doesn't seem to be the cause for Xander.

Instead, our doctor has told us that some people naturally carry Cdiff in their GI tract. Everyone has good and bad bacteria in their GI tract. He thinks that because his GI system was so out of whack, it provided an opportunity for the bad bacteria (cdiff) to take over. In the case of antibiotic use causing Cdiff, the antibiotics kill off the good bacteria, allowing the cdiff bacteria to take over.

Of course, Cdiff is also highly contagious, so there is a possibility that he was infected at the previous hospital. We will most likely not know.

Why are you seeing genetics? I thought this was a gastro issue.

We were originally scheduled to see genetics in Richmond to follow up on the neurofibromatosis work up. We missed that appointment because we were in the hospital. But when the emergency room doctor here heard the whole history, she wondered if maybe, just maybe, a genetic issue or syndrome can tie all of his issues neatly in a bow. The issues include: vitamin D shortage, the diarrhea, the lack of growth heightwise, the losing weight/not gaining, the high TSH, the birthmarks, the fact that he rarely has tears and doesn't seem to sweat at all. He also had a small blood vessel anomaly mentioned in his MRI radiology report and has a small mass in his stomach. She just thought there are too many things "off" and they seem to be spread over several of his systems. She is curious if they are all related.

I have one more thing I'd like to address. It has been hinted around by various people that this is a downfall of adoption. That we didn't know what we were getting into. Or if we would have known, perhaps we wouldn't have matched with him.

Brandon and I have learned that even with biological children, you have no idea what you are getting into, even healthwise. Our girls have their orthopedic issues. Julianne had respiratory issues as a baby. Health is NOT guaranteed even for biological children.

Even if we knew about Xander's issues beforehand, it wouldn't have made a difference. If you recall, we adopted him knowing that his birth circumstances were less than ideal. We knew that his birthmom's health history was questionable. Also, we thoroughly understood Annalise's issues and we were willing to make that walk as well.

Adopting Xander was NOT a mistake. We have ZERO regrets and we can't imagine our lives without this little guy. He has taught us so much and I can't wait to see what other lessons we will learn through raising him and watching him grow.

Nothing makes me turn into a ferocious mama bear quicker, than to suggest that adopting Xander was a mistake, or using this as a case against adoption. Adoption is beautiful and we are so blessed to have Xander in our lives. We can't imagine our lives without him. We committed to him in April of 2009 and that commitment stands. I will always be his mama, always love him and always fight for him in every way I can. Nothing can change that... ever.



Lesley & Brooks Brendle said...

Once again, God reassures us you are in the right place. We continue to pray for the doctor's wisdom as they piece together this crazy puzzle.

For those of you don't know us, Brooks and I also have an adopted son. He is a precious 8 year old from Haiti who has been with us for 3 years. He also has issues we did not know about until after his adoption. He is EXTREMELY ADHD! Our doctor explained that his hyperactivity places him in the upper 1 percent of children with the condition.
Do we regret adopting him? NO!!!
He is a wonderful blessing and totally exhausting all in the same breath. It's not easy, but like Stephanie said, "I cannot imagine life without our little energizer bunny."

What many don't understand about adoption is that God can and does choose adopted children for parents as much as he chooses biological ones. Lucson is our son. I knew it from the first time I saw his picture. Out of a list of 28 children, he grabbed my heart and never let go. We prayed, God led and we followed Him to Haiti even though that was not our original plan. I honestly believe God intended Lucson to be our son from before birth. The fact that he was born in another country, spoke a different language and has a different color skin than us changes nothing. Lucson is our son. He always has been and he always will be.

Thank you for allowing me to step on my soap box. I will happily get down now :)

Love in Christ,
Lesley Brendle

Ben and April said...

So glad you are in a place where you can get some answers! Praying the Lord will give you clear direction as to the next steps for Xander.

Danielle said...

Thinking and praying for you often, Stephanie. Hoping today was better than the one before and that pattern continues. I am glad you are getting good care and finally some answers. I wish I was a bit closer. Take care of yourself as best as you can. I know when Asher was in for a longer period of time, I would just take walks around the hospital while he napped, taking the stairs instead of the elevator, trying to get that numb feeling to wear off a bit. I know it is hard, but you are doing a good job.
The thought that your son was somehow a mistake for your family is ludicrous, and totally against anything in God's word. He makes no mistakes. This was not an accident. This is exactly His GOOD and PERFECT plan for you and your family. HUGS!!