Monday, January 10, 2011

JoJo's woes...

Photo courtesy Rachel at Savor Photography
It's crazy to believe that in his 13 months on this earth, our little guys has been as sick as he has. Even his pediatrician says that he is the sickest full-term baby she's ever had. I was wondering really how much he had been through, and then I read the letter that our pedi had written to the Infectious Disease/Immunology specialist at UNC. And it hit me like a ton of bricks: This kid has been really sick. Here's a brief history of Jordan's medical history:

It first started right after we took him home from the hospital. He developed physiological jaundice at day 3 of his life, and required photo-therapy with a bili-blanket. We went every day to the doctor for the 1st 2 weeks of his life. His pedi is a good friend of mine and knew that it was important for us all to be at home with each other, and allowed us to use the bili-blanket at home. (She said if it was any one other than us, she would've admitted him to the hospital, but she knew she could trust us to follow the strict schedule of photo-therapy. Eventually it turned into breastmilk jaundice and finally it went away. We called him our little glo-worm.

He was admitted to the hospital for bronchitis and respiratory distress three times this past year. The 1st time was at 3 months of age. Then he decided to give us an anniversary present we'll always remember and then 3 weeks later was readmitted, this time with RSV. He has been diagnosed with Asthma and sees a pulmanologist at UNC to help manage this.

In between his hospitalizations, he was also having recurrent double ear infections and eventually had tubes placed at 5 months. So far he has not had any ear infections since, so we're very thankful for that.

Shortly after 8 months, he stopped nursing, so we switched him to formula. We began with Enfamil, but he had projectile vomiting and diarrhea so we decided to switch to soy, since that is what Braydon had used. He was fine with this, but then he started again with the diarrhea. So we tried AR, Nutramagen, etc. Nothing worked without causing vomiting and chronic diarrhea. We were referred to an allergist to have food allergy testing done, which showed no food allergies. He suggested that perhaps JoJo had a protein sensitivity, so he decided to try him on Alimentum. Just as with the other formulas, he was fine for about 7 days, and the diarrhea returned. We still deal with chronic diarrhea today.

The allergist also decided to start some immune system testing to see if his immune systems levels were okay, since he had been so sick. The levels all fell within normal, but there was an abnormal result in regards to his responses to his vaccinations, which might indicate his immune system is not functioning the way it should. He suggested we go to the immunologist at UNC.

He also suffers from what is called as "fevers of unknown origin" where he'll have high fevers with absolutely no explanation. His ears look fine, throat is fine, strep culture negative, urine & blood work look normal. But yet he still has a fever. It was because of this and the allergist's recommendation, our pedi referred us to UNC AIRID department (which stands for allergy, immunology, rheumatology, and infectious disease). We have this appointment prior to the MRI this Wednesday.

Then one day, I was just finishing up feeding him lunch when probably the scariest thing I've ever dealt with happened: JoJo got stiff as a board and he started shaking. I was not expecting it at all, and it wasn't very long at all, maybe a minute, tops. But we took him to the ER, and he was still very subdued and just laid in my lap. He had no fever and no other symptoms. After a few hours of observation they sent him home. We followed up with our pedi, who again referred us up to UNC pediatric neurologist. They saw him and did an EEG, just to make sure everything was okay. From that 1st EEG, they showed nothing irregular, but she did mention they did not get to see him sleeping, which they would have liked to. But we set up a follow up appointment and left the clinic with a "wait and see" point of view.

Then the weekend before his birthday, he had 2 subsequent seizures. When we called his neurologist, she suggested we come back to her again. At that appointment, she ordered a 3 day amblatory EEG. He was fitted for the backpack & all the wires at the next appointment and for 3 days, we had to be really careful about how he slept, because of the wires. I was so worried he would choke himself.

After the test, we didn't hear anything back right away, which I was thankful for. (A dear friend of mine who works in the medical field told me that most of the time, if there is something grossly irregular, I'd hear from them right away.) I remember when the neurologist called me back, as I just happened to be in our regular pedi's office (again!) for another fever that couldn't be explained. I knew right away that she had found something because he tone was different than it was when she called me to tell me the results from the 1st EEG. Then she told me they had seen abnormal spikes in the right frontal lobe of his brain when he slept and that they would need to do the MRI. But since he has respiratory issues, he we need to be sedated.
Photo courtesy Rachel at Savor Photography

Hopefully this will all be nothing, and we'll look back and saw how silly we were for worrying about it. But if the path that God has for our family, and for my precious little man, take us else where, we trust that He, like always, knows better than we do. Thank you for your prayers for healing, for wisdom & discernment for JoJo's doctors!


Ken said...

Seeing everything together really hits home. But you are right about what you said about God's plans for Jordan. We remain by your side and pray without ceasing for all of you.
Love forever,

Krysten @ Glors Galore said...

So sorry you guys have to all go through this. I can't even imagine. I hate dealing with low weight/no weight gain, and even though we're not finding our answers, it's definitely not in the scary range that you've been in. Will keep you guys in prayers!

Have you seen the "Noah Steven" blog? Tragic and sad, but the baby had all these symptoms (way sicker than Jordan, not trying to scare you!!) and they couldn't figure it out until a long time after he passed, it was Lyme disease! It's like it's always something that they're missing but doesn't seem "reasonable" is what might be the answer. Good luck!

He's been tested for hyperthyroidism? I'm sure you've had blood draws and tests up to your eyeballs. My ped did a "sedemetation rate" in Karter's blood draw that shows if there is any inflammation in his systems...his was negative, but he never has fevers just diarrhea and trouble gaining weight. I had never heard of that before, but I think you get to the point you will test and try anything!

Wish you could get Dr. House to take it on ;) Have they done stool samples? We had a few done on Karter for parasites and infections, bacteria, etc. because of the diarrhea all the time.

What about intestinal issues? Could irritable bowel or crohn's be causing fevers? Sorry, I am NOT trying to sound like a know it all, but I've had to do so much research and trying to figure things out on my own and I'm sure you know what it's like!
We also consulted with Naturopathic doc jsut for some outside ideas. What about some supplements (natural) to boost his immune system?

We also found that probiotics (any brand, or there's Culturelle) has helped Karter's diarrhea from being excessively nasty.

Is milk a common ingredient in all those formulas? Lactose intolerance?
Ok I'll really stop now ;) I get on a research kick and I can never stop myself!

KT said...

Wow, Christy. What a journey you have all been on with your lil' man. It is so hard and sad to see lil' ones hurting and sick, know that I am standing with you in prayer for JoJo. He is a beautiful boy, fearfully and wonderfully made and God has such a plan for him! Praying.

Tricia said...

Christy, I am a reader of your sister's blog and came by to read about JoJo. As you sit in the doctor's office today, please know that I will be lifting Jordand your dear family in prayer. I can't imagine how scary this must be for you.


Christina Hill said...

Wow! Father in heaven, that's a lot for such a little one to go through. We are and will be in prayer for your sweet baby boy. I'm so sorry to hear about all the unanswered questions, I pray that they turn out to be nothing and this little guy has a long and healthy life.

Farm Fresh Jessica said...

Praying for you guys today : wisdom, and comfort and answers and most of all the peace that passes all understanding.

Anonymous said...

Christy, I hadn't read your blog in awhile but I knew that JoJo had been sick...I didn't realize just how much he had gone through. I believe the Lord placed him with just the perfect family to love and care for him. Praying for you all, Love in Christ, Mandy