Cross One Doctor Off the List

Well, Caleb's urine tests came back fine, so Nephrology has discharged Caleb from their care.  That is one doctor on the list of many that he won't have to see, unless something should arise. 

I took Caleb's heart monitor off when I got home from work yesterday and packed it up to send it back to Children's.  I said a prayer over the package praying for no dropped p waves and for a normal result.  We should know something in about two weeks.

I received an email from Duke that they received his blood and have started tests on it.  Hopefully, we will hear from them in about two weeks, as well, and praying it is good news.

I will call Children's later today to see if the xray or growth bloodwork are back yet and also to schedule Caleb's next surgery.  He has to get his teeth cleaned and capped.  He had such bad reflux when he was a baby from all the medical issues that it destroyed his teeth and he has also ground them down by grinding his teeth a lot.  They will also be putting in a set of tubes during this surgery as well.

I will update more as I find out more. 

Have a great day!!

God Bless you all!!

God Bless Caleb and Camryn!!

The rest of the updates

So after Endocrinology we headed to Cardiology for Caleb to have an EKG and an Echo.  Not only were they checking on his repairs form his open heart, they also were checking on an area of concern that was noted during his last admission.  The heart wave made of P, Q, R, S, and T waves.  The QT wave during Caleb's last admission looked somewhat long and when this happens that can put you at risk for certain arrhythmias.  However, the Echo showed that the QT wave was not long and was probably long during his last admission, when he was in for his shunt, because of the high inter cranial pressure.  The heart was reacting to the high pressure.  So this was good.  The cardiologist also said the repairs to Caleb's heart look great.  During his last admission, they also noted Caleb was also dropping (the wave wasn't always present) his P wave.  We said he did this at Duke when he was there in the ICU.  Therefore, Cardiology decided to send him home on a heart monitor to check and see if he dropped any waves for the next 24 hrs.  The heart monitor stays on until about 4 today, so he get another day off from school.  When I get home from work, I will take the monitor off and then mail it back to Children's and we should have results in two weeks.  If all looks good, Caleb could officially be discharged from Cardiology's care!  Prayers the P waves behave themselves.

Nephrology:  Caleb had to see Nephrology as the kidneys can take a beating after all the meds, abnormal electrolyte levels, and IV nutrition.  However, pending a urine specimen, if all looks good Caleb could be discharged from their care as well.

Opthamology:  Since Caleb is a bit older and a bit more communicative, they did some other tests on his eyes yesterday.  Good news his brain and eyes work together.  Awesome news!  He does have depth perception as well too, which is awesome.  Caleb's astigmatism is worse in his left eye, which means another new script.  They have been changing a lot, but that is to be expected with growth.  We are supposed to continue to patch his eye.  If by age 9 or 10 his lazy eye is the same or worse, they will consider surgery to correct it. 

While we were at Children's, Duke called me to tell me they received the consent for all the immune bloodwork and we were good to go to the lab to get it drawn, so Children's could UPS it.  So the labs were drawn.  Hopefully, we should know a bit more about his immune tests in the next two weeks. 

That is where we are for now.  When results continue to come in, I will update. 

Thanks for checking in.

God Bless you all!!

God Bless Caleb and Camryn!!

Endocrinology

The Endocrinology appointment is over. Caleb has been diagnosed with Thyroid disease, Hoshimoto's Thyroiditis. He has been put on a pill to supplement hormones for this. They will also be doing more bloodwork and an X-ray today to see if the CHARGE syndrome has effected his growth. If it has, he would have to get daily injections. We are now waiting for his heart Echo.

God Bless you all!!

God Bless Caleb and Camryn!!

Steak Fry

The steak fry went so well Friday. It was a huge success. Thank you so much Keith for your hard work and making this such a huge success. Thank you to all the people who donated for the various prizes and to all of our family and friends that were there to show support. We cannot thank you enough.
Tomorrow Caleb has more clinic appointments. He will see Endocrine, cardiology, nephrology, and ophthalmology. Cardiology will be looking at one issue that was noted regarding his heart during his last admission. Hopefully, it's nothing. Please pray these are uneventful visits.

God Bless you all!!

God Bless Caleb and Camryn!!

One Week From Today

In one week from today, the steak fry our neighbors are throwing Caleb will occur.  I cannot thank Keith and Jess for throwing countless others for their hard work and contributions.  I have always said we have been blessed by our friends the past 6 years.  We cannot thank you all enough.  Have a safe and fun weeekend.  Go Mountaineers!

God Bless you all!!

God Bless Caleb and Camryn!!

Happy 5 Year Thymus Transplant Anniversary Caleb!!

I can't believe it has been five years.  Here is my post from five years ago. 

Caleb Paul Hlebiczki: Surgery is Started: Well, Caleb went into surgery earlier than planned. The first case cancelled so Caleb went in at 8:45 and they are planning on a two hour s...


Happy Transplant Anniversary Caleb!!  Keep fighting lil' man.  You are doing awesome.

God Bless you all!!

God Bless Caleb and Camryn!!

Labs

Well the labs from clinic yesterday are already coming back. Good news, no allergies. Not so good new, Caleb's thyroid is really acting up. His thyroid levels are so high his immunology doctor at Children's called me tonight and told me she called Endocrine to tell then he needs to be seen ASAP So we are waiting for Endocrine to call and we will go from there. She said he definitely has Hoshimotos and needs medicine before he starts getting side effects from it.
We are still waiting for his immune bloodwork to come back. I will update when I know more.

God Bless you all!!

God Bless Caleb and Camryn!!

Clinic update 2

Caleb, due to his immune suppression, was not able to have an allergic response to things in his environment. However, we have wondered if he has sinus/allergy and asthma issues due to some things we have noticed. He may have some allergy testing done today. Waiting to c doc.
No scratch test will be done. They will be doing bloodwork to check for allergies.
God Bless you all!!

God Bless Caleb and Camryn!!

Clinic update 1

Update: kinda bummed the hearing specialist was not notified we wanted to talk about the BAHA implant. So, we have to now schedule another appt on top of the day of clinic appointments two weeks from today. Already coordinating docs for his next surgery. So far these docs include dentist for teeth cleaning, cavities (from reflux), caps ( due to him grinding his teeth down), ENT (for tubes), possible brain stem hearing test, and MRI. We will see if any more docs from today or in two weeks will be added on to the surgery. More updates to come. On a lunch break now.

God Bless you all!!

God Bless Caleb and Camryn!!

Clinic Day

Long clinic day tomorrow at Children's hospital for Caleb. One of the appointments, we will see if Caleb could be a candidate for a BAHA implant to help him with his hearing. He has already been denied for cochlear implants. Very hard to be a candidate for these hearing devices, a lot of guidelines. More updates when I can.
God Bless you all!!

God Bless Caleb and Camryn!!

Seeing Some Progress

Hi all, just a quick little update.  In the past few weeks since Caleb has started school we have really seen some progress, which is very exciting as Caleb used to hold back in the school setting.  However, he seems to have really taken to his new teacher and per the school work they are sending home, he is doing some work on his own and is even become a pro at writing his own name.   Wow, my little boy can write his name..

I think I will leave it at that :)

Have a great day everyone!

God Bless you all!!

God Bless Caleb and Camryn!!