For those that might not know, Conner went into Texas Children’s Hospital late night on April 10th for some blood in his dirty diapers and has been in the hospital since. What was initially suppose to be a short stay has turned into a much longer ordeal.
Finding the Cause
Last week Conner was “scoped” (they ran a camera scope down his throat, into his stomach, and all the way into his small intestines), to see if they could find a reason for the blood in his diapers. They were able to find that the blood vessels in these areas were enlarged and as a result they did an ultrasound to see if they could find a reason why the vessels were enlarged. The ultrasound resulted in them finding a blood clot. This morning they did a MRI and liver biopsy in order to find out more about the clot and what might be causing it. We should have results of both later this week.
During his stay he has had 2 blood transfusions and at least 1 anti-body infusion in order to keep his blood counts up. Since his blood counts have a history of being both low and irregular they have also been pulling extra blood to run tests on. We have not been given the results of some of the more thorough blood tests yet. The other tests were just to check his blood counts and such.
Hearing Aids
While in the hospital, it is easier to get in for tests. As a result Conner has had the required hearing exam done and his hearing aids have been ordered. He is scheduled for a fitting on May 6th. So come the beginning of May Conner will have his hearing aids.
I will try to keep this site updated once we find out more about the blood clot.
mkoby Conner blood clot, hematology, liver biopsy, texas children's hospital
Conner’s physical therapist told April that he needed an ExerSaucer to practice the whole standing thing, so we ensured he got one.
Today he played in it for a few minutes before getting tired but daddy managed to capture a few pictures before he wanted out.
mkoby Conner
For those that don’t already know, Conner came home 2 weeks ago today. We have since had 2 follow up appointments at Texas Children’s Hospital for
- Hematology and
- Audiology
Conner also starts physical therapy today due to his lack of head movement and not liking “tummy time.”
The results of the follow up appointments were that the doctors are pretty sure he doesn’t have Aplastic Anemia (they couldn’t say for absolute certain because the piece of bone they pulled during his bone marrow biopsy wasn’t a good enough sample). Conner will also have to have routine blood draws so that they can watch and chart his blood cell counts to see what they are like when he is well. The answers from these blood draws will help the hematologists determine what (if anything) he might have and help them better diagnose for treatments.
With regards to audiology, Conner is hard of hearing. He has what is known as “Minor Sensorineural Hearing Loss” which means he’s not deaf but he doesn’t hear things quite as loud. End result, he’ll need to wear hearing aids in both ears and it will make it difficult for him to learn how to talk (not impossible, just difficult).
We would like to thank everyone that prayed for Conner and us while Conner was in the hospital. It was comforting to know that we were being prayed for and thought about by some of our closest friends and family. I (Michael) would like personally thank everyone I know via social networks like Twitter (and might have never physically met), you people are awesome and deserve only the best in life.
mkoby Conner
So first the news everyone has been waiting to hear, Conner is home from the hospital. There are still some unanswered questions, like what is going on with his blood counts (that caused them to do a bone marrow biopsy) but we should find out more on that this coming Tuesday. Also, while in the hospital it was discovered (re-discovered actually) that Conner has some hearing loss. He has an appointment today to find out to what extent that hearing loss is. But overall he’s doing fine, and catching up on some sleep now that he is home. You can see photos of Conner in the hospital on my Flickr page.
Also, I have uploaded new pictures to my Flickr page, including photos for Cloe’s birthday party earlier this month.
mkoby Cloe, Conner birthday, hospital, photos
Conner @ Hospital
This update is for anyone that isn’t already aware…
Conner was checked into Memorial City Memorial Hermann hospital on July 12th for a urinary tract infection. He was still still recovering from the last infection when he was diagnosed with this most recent one. On July 16th, the doctors made the call to transfer Conner to Texas Children’s Hospital in the Houston Medical Center. Conner is still at Texas Children’s Hospital and will be there until at least the middle of this week.
What Happened?
Well, the two infections were pretty serious bugs. The doctors involved (including a pediatric infectious disease specialist) used the phrase “nasty” when describing the two different bacteria behind the infections. Because of the closeness of the two infections (time wise) the urologist decided to do a VCUG on Conner’s kidney/bladder functions, this was the reason he was transferred. A VCUG consist of putting a dye into the bladder so that when x-rays are taken, things become a little clearer and the doctor can get a better idea of what is going on.
The result of the VCUG caused the urologist to call for a
Vesicostomy. A small procedure that should relieve some of the pressure in Conner’s kidneys, hopefully lessening the chance for future infections, and buying time until a more cumbersome procedure can be done (when Conner is older). This procedure was performed yesterday and was labeled a success by the doctor.
What Else is Going On?
So not only is the kidney thing going on, but some of Conner’s blood counts are not where the doctors feel they should be. So, a team (it’s always “a team” at Texas Children’s) of hematologists, have been watching his numbers and are scheduled to do a bone marrow biopsy tomorrow so they can get a better idea of what’s going on with his blood counts. While they don’t have any specific answers for us at this time, they did say they should know more about a week after doing the biopsy.
Keep Praying
So right now, the best anyone can do is to keep praying for Conner. He is already bathed in prayer, but more is always welcome. He is surrounded by family and when he’s not being poked and prodded, he is quite happy and playful given his circumstances. I’ll try to update more frequently. I didn’t update sooner because there was a severe lack of substantial answers. But now we’re starting to see more answers than questions so I will be able to update with more regularity.
mkoby Conner Conner, infection, texas children's hospital
So I’ve got some updates & recent happenings to report. The first is that Cloe went fishing with your “Grandpa Koby” on Saturday and caught her first fish. See pictures below (click on images will take you to Flickr where you can see the full sized images).
Then on Sunday evening, Conner was running a high fever (102.5), so April & I ran him to the emergency room (at Katy Memorial Hermann) to see what was up. Turns out that he has an urinary tract infection, due to his urinary tract reflux that he was diagnosed with at birth. Apparently it was a bad one and his doctor advised that he be transferred to Memorial City Memorial Hermann because that’s where his doctors are located.
So, as it stands right now, Conner will be at the hospital for most of the week, to 1) Rid his body of the infection & 2) to possibly determine the cause. April will be staying with him at the hospital and I’ll be in and out as well.
Hopefully, Conner will be home in time to enjoy his first 4th of July. Please keep him in your prayers and thoughts. And check back here for any updates, I’ll post them as I have them.
mkoby Cloe, Conner
Yes, you read correctly, Conner is now home from the hospital. Everyone’s happy and Cloe (sister) has gotten to hold him already. Sister is anxious to show him off to all of her friends. I have uploaded some new pictures to Flickr and you should see them on the right hand side of this page soon.
mkoby Conner
For those that are not aware, Conner is still at the hospital in the NICU (Neonatal Intensive Care Unit), where he’s been since Friday morning. The reason he is there is because:
- he wasn’t holding down any food
- he was having some reflux issues, and
- his jaundice numbers were pretty high.
As of today he has kept two full days worth of meals down and they are still slowly increasing the amount of food he is being given. He also hasn’t had a reflux “attack” since Friday. Today his jaundice made a slight return, but they’ll put him under the lights a little bit more.
The nurse and doctor told us that Conner is one of healthier babies in the NICU and that if all goes well, they should be able to discharge him in a couple of days (fingers are officially crossed).
All in all he’s doing well. He’s responding to are hands with a nice solid grip (which he sometimes refuses to release) and when mommy and daddy hold him his heart rate drops and becomes very chillaxin’ (yes, I said “chillaxin’”).
Watch this space for more information, and to see when Conner makes his debut appearance at home.
mkoby Conner
Yesterday the latest addition to the Koby family made his debut appearance. Conner entered the world on March 18th, 2009 at 8:21pm and coming in at 19 and half inches, weighing in at 6 pounds and 7.2 ounces. See a couple of pictures below:
More pictures will be uploaded to Flickr as soon as i can get access to them, the hospital’s wireless blocks my access to certain websites. For now, please enjoy these.
mkoby Conner
For those that might not know, Conner went into Texas Children’s Hospital late night on April 10th for some blood in his dirty diapers and has been in the hospital since. What was initially suppose to be a short stay has turned into a much longer ordeal.
