Caelum had his hospital follow up appointment on Wednesday and we got to meet his new Pediatric Urologist who is wonderful....I actually like him WAY better than his doctor in Texas. I believe Jason will like him to when he gets to meet him at Caelum's next appointment.
Some have asked if we will sue or if we can fight against all of this since we are military and of course have TriCare. The answer is yes we can. We are starting by contacting the Patient Advocate at the hospital on base, since this all originated in the Pediatric Clinic on base. Our next step is to contact an attorney in that we make sure Caelum gets full compensation for this as there is no timeline for when the urethra is completely healed. Dr. Routh said something may come up 10-15 years from now and we want to make sure that is one less thing Caelum will have worry with financially when he is an adult.
Instead of typing everything again, I just copied an excerpt from the letter we are sending to the Patient Advocate.....
On Wednesday, September 23, 2015, we made the almost 2 hour drive to Duke Children's Health Center in Durham NC for Caelum's appointment with Dr. Routh. We arrived and he was already aware of Caelum's case as he had been speaking to Dr. Robertson (the head Urologist who took care of Caelum in the hospital) on and off since Saturday. The plan for this visit was to remove his catheter and see if Caelum would urinate on his own and empty his bladder completely. He was also ordering Pyridium for him to take for the next 7 days. Dr. Routh explained that after talking to Dr. Robertson about where the trauma was from the incorrect placement of the catheter. Dr. Routh said that where the place of the trauma of the urethra was is the most difficult place to operate on due to all the other important things around this area. The area was at the top of urethra near the junction with the bladder. Dr. Routh stated there is no time frame for healing of the urethra. He stated we may not know for another 10-15 years if there is more damage than what is showing up now. He stated he may be infertile or have ejaculatory dysfunction or other issues may arise. If surgery is needed it is the most difficult portion of the urethra to operate on. After discussing the potential effects from this trauma, he then removed his catheter and asked us to hang around the hospital as he wanted to make sure he was able to urinate and then do a bladder scan to make sure all the urine had emptied out. Caelum was very afraid of urinating as he was afraid it would hurt. While we were waiting for Caelum to urinate we received a call from Caelum's PCM Steve Gay, as he had seen we had been to the ER. He was just calling to check on Caelum and ask if we needed anything. I just expressed we would most likely only need a referral to continue to see Dr. Routh and Mr. Gay stated he would put in a referral. After about 3 hours and much pleading he was finally able to urinate. We headed back to the exam room and the bladder scan showed he had emptied his bladder completely. Dr. Routh then came in and told of signs and symptoms to look for and to make sure he urinates at least every 2 hours and to follow up with him in 6 weeks. We left his office and headed back to our home in Raeford. After leaving Dr. Routh's office he has been very afraid to urinate or have a bowel movement in he toilet. He has had many changing of clothes and bedding. As of today, Friday, September 2, 2015 he has finally starting urinating and having bowel movements in the toilet.
I did ask Dr. Routh if we needed to go back for the test that was not able to be completed (the VCUG) and he said no he will never need that test again. He stated it mainly will show about reflux and since Caelum has never had any urinary issues until the botched up catheter insertion, he is not concerned about reflux...it is not something you generally worry about much. He did say that the nuclear medicine test he had seemed ok without seeing the actual disk, he only saw the written report. He stated that for a Pediatric patient he does not worry about the number it is given but he worries about how well it actually drains. He stated the report stated it does drain well and he is not concerned about his kidneys at all. We will have to make frequent folllow ups in regards to the Urethra trauma, but in regards to his kidney he stated we just have to go once a year for an ultrasound for about the next 10-15 years.
Thanks again for ALL the prayers! And Thanks again to Teddy and Gramm's for all the loss of sleep and time you have given up to be up here!
And here are a few pictures from this week....
Trying to keep him busy at the play area at the hospital so he will go pee. And yes he still has part of his PJ's on......some things this past week have not been worth the battle. He was scared to take baths, scared to pull his pants/undies off, scared to change his shirts as that meant we were going to the hospital and more owies!! And the list goes on!
Finally after peeing at the doctor with a lot of screaming, kicking, spitting...he got to get a toy out of the treasure box.
After getting home from the doctor on Wednesday, we had to change clothes once again for an accident...so the boys both wanted to hang out in their undies.
Caelum received a special surprise from Big Daddy and Gimma....an edible arrangement!! He LOVES it!!
Here is Teddy working in the yard for us!
Here is Kerrick rocking Caelum!
Here is the card all of Caelums friends and teachers from school made him. They also gave him a gift bag FULL of goodies for him! It was too sweet. I took him to see everyone yesterday afternoon and the minute he walked in they all came running to him screaming, Hi Caelum, We missed you Caelum and they all kept surrounding him and hugging him!
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