His first two appointments were urology-related. They were both follow-ups for his issues related to having spina bifida as well as the slight kidney reflux that was detected at birth. Children with spina bifida almost always have issues with bladder and bowel control. I know, he's four months old, of course he's not going to have any bladder or bowel control. What the urologist is most concerned about now is Jax's ability to fully drain his bladder. Right now, he does at a constant dribble. We need to keep an eye out for any dry diapers or fevers which may indicate that he may have a urinary tract infection or issues emptying his bladder.
Today he had a renal ultrasound to make sure there weren't any blockages in the urinary tract, check the kidneys (size, shape, position) and look at the blood vessels of the kidneys. Everything appeared fine. His left kidney is slightly larger than the right kidney but it is nothing that they are concerned about.
He also met with the Urology Department's nurse practitioner (Cheryl) to go over the results of the ultrasound and get a follow-up Cystometrogram (CMG) to test bladder function. Basically, Cheryl inserted a catheter into Jax's bladder and emptied it. She then filled the bladder with saline and recorded both the flow and pressure when his bladder was full and he peed. He still dribbles and his pressure was low. This is in line with what we've been seeing and this is what they would like to continue to see. Even though low pressure usually indicates that the bladder may not empty completely, high pressure could cause the urine to back up into the kidneys which we don't want.
There was a slight kidney reflux present at birth. As a result, Jax has been on a preventative antibiotic since birth. While the pressure in his bladder is low, they would like us to stay on an antibiotic in order to prevent infection that may be caused by the reflux. Hopefully, we will be able to switch to a once-a-day antibiotic instead of the twice-a-day one he is one now.
All-in-all, the two urology appointments went well. Cheryl is going to go over all of the results with the Dr. Hulbert and he will follow up with us if need be.
His third appointment was with the Kirch Center. The Kirch Center has a Physical Disabilities Program with provides a multidisciplinary health care approach to children with physical disabilities such as Spina Bifida and Cerebral Palsy. Instead of making multiple appointments to see different specialists, you make one appointment with Kirch and they bring the specialists to you. Jax is being followed by the Kirch Center for health and behaviorial issues related to his Spina Bifida. They are the experts. They will work with Jax's PCP (Dr. Alling) as well as his EI Service Coordinator (Sue) and his therapists (Carrie - OT and Becca - PT) to make sure that we are doing everything possible to help Jax. We went there before Jax was born for a prenatal consultation so we could learn more about Spina Bifida, but today was Jax's first visit. Today was a initial evaluation, a "get-to-know-you" appointment if you will.
They (Dr. Sulkes and staff) were also happy with what they saw and like at the other two appointments commented on how well he was tolerating all of the poking and prodding. That's right, our tough little guy is a pro! The only areas of concern at the moment is possibly his hearing and his sight. Both the PT and OT had wanted us to bring this up when we spoke to the docs at Kirch. Dr. Sulkes thought that it would be a good idea to get him tested to see if there are any issues or to confirm that every thing is a-okay. So, he will be seeing an Audiologist and a Opthamologist in the near future. In the meantime, just keep doing what we're doing because Jax is a happy, healthy baby boy!
The only issue at this point is constipation. We're working on it. Enough said.
We also met Joanne today while at Kirch. She is a volunteer who is part of the local Spina Bifida Association. She is going to be sending us info about the organization, get us in contact with other parents of children with Spina Bifida and keep us informed of any upcoming events for the association.
His next appointment is with Dr. Alling next week, then he has a follow-up with Dr. Silberstein in early November for his shunt. After that, he will be back in six months at Kirch (unless Urology wants to see him sooner).
By the way...he weighs in at 19 lbs. 15 oz. and is 25 3/4 inches long. His head circ. is 45 1/2 cm.
We ended the day at Red Robin for dinner...Yum! Jax was such a good boy! We are so proud of him. By the time we got home though, he was completely wiped out. We got him into his jammies, fed him a bottle and he passed out the for the night.
If you want more information on the Kirch Center, visit: Kirch Developmental Services Center
Want to know more about Andrew J. Kirch? Check out: Who is Andrew J. Kirch?
Post a Comment