Conner
I wanted to give a brief overview of Conner’s medical history since birth. I will come back in and give more details of what doctors have said and specifics on hospital stays as time allows. I may overlap information Michael has put on here previously (so haven’t been reading what he posts) but I hope this will help answer some questions.
Before he was born the found he had bilateral hydronephrosis, a condition that is common in many babies causes reflux in his kidneys essentially, the condition typically corrects itself. Conner was born full term (we induced ten days early but close enough) he came into the world without complication. After he was born they noticed a few physical attributes that led them to believe he may have some kind of genetic abnormality – low set ears, facial assymetry, long fingers n toes. They took some blood and tested for genetic disorders and anomalies. Within 24 hours he had some choking issues that put him in the NICU for closer watch. He developed jaundice, again not a big deal, I had it as well. He also failed his hearing screen which again is quite common. After a week in the hospital and every scan you can imagine from head to toe of the poor boy they sent us home.
We spoke to Geneticist in the months following his birth and found out he did not have any known genetic disorders but did have a chromosome that turned out to be abnormal. His chromosome 9 has a piece that is deleted and a piece that has been copied and put into its place. This exact abnormality has never been documented so they are never going to be able to tell us what to expect or what he will and will not accomplish in his life. They tested Michael and I to see if he had gotten this from either of us and he did not. They also said that it is not likely we would ever have a child with the same issues.
Conner had repeat hearing tests done and continued to fail and was eventually diagnosed with a mild hearing loss in both ears of about 30%. It’s not something he will get back but it could get worse. He has enough hearing to get hearing aids and after many months and many tests and struggling to get the money (insurance does not cover these) Conner’s hearing aids have been ordered and will hopefully be on him before months end. His hearing has gotten worse since last year so its not impossible that it could eventually go sometime in his life but of course we have no way of knowing that. Because of his hearing loss he has not been able to learn to speak, the sound levels he cannot hear are the ones he would need to learn basic speech.
Conner’s kidney condition was considered manageable when we left the hospital but they also knew he would face many Urinary Tract Infections so they put him on a daily dose of Amoxicillin for an unknown amount of time. Conner’s first hospital stay (happened at the end of June) resulting from a high fever and agitation that turned out to be a Urinary tract infection. We spent a week in the hospital on some strong antibiotics but went home feeling good and a new daily antibiotic. A couple of days later we went back to the hospital with similar symptoms and he was admitted for yet another Urinary Tract Infection. Both times his fever spiked at just over 103, it was really scary. The second stay was a totally different bacteria causing the infection one that was even stronger than the last. Both of the bacterias were also immune to the original antibiotic he had been on (Amoxicillin). The hospital discovered that the infection had spread into Conner’s blood stream and called in an infectious disease doctor to help manage our case. The infection was rampant in his body and t?hey ended up having us moved to Texas Children’s Hospital so that we could have the best possible teams of doctors at our disposal if needed. It was decided that although we knew he would keep getting the infections the strength and frequency was not acceptable. Conner’s body didn’t seem to be dealing with infection well so they decided a couple of things, one to do a bone marrow biopsy and two something needed to be done to stop deter the infections. The bone marrow biopsy did not yield a large enough sample but they did see that his immune system was not functioning as it should be. His Urologist decided on a course of action that involved surgery to help with the kidney infections. The X-Rays and various tests they ran showed his bladder to be backing up into his kidneys and they were HUGE, his ureters were so large that they looked like his intestines and were wrapped around his kidneys it was quite awful to see. The surgical procedure he underwent was called a vesicostomy and was a one inch cut below his belly button that stays open and attaches the wall of his bladder to the hole allowing his bladder to directly empty out of his body. He still has the reflux in his kidneys but the surgery has kept the infections at bay. The procedure doesn’t require any catheters as the location allows his bladder to empty into his diaper. We put him in a size larger than he needs and put a bladder pad to collect the extra urine in the location of his cut because diapers aren’t very absorbent near the waist band. That covers that stay I believe, he was in the hospital that stay for three weeks.
There is more info here I just have to remember it all….
November-Conner got a chest cold that landed us in the hospital for a week. He had breathing issues and required inhaler treatments as well as oxygen. Oxygen has been needed anytime he feels ill but until this stay it didn’t seem to be too big of a deal. The inhaler was used on occasion after the appointment for some random wheezing. The pulmonologist ordered a swallow study to be sure that his airways and swallowing were okay.The swallow study showed Conner to be at some risk of getting liquid into his lungs so they ordered that we use a thickener with his formula. He also ordered a sleep study to see if he might have sleep apnea or just in general oxygen levels were okay when sleeping. Conner still hasn’t had this done because the co-pay was too high and when we did meet the deductible we didn’t had the time.
April/May- Conner was admitted because he had three bloody diapers in the course of three hours, like a considerable amount not just a little due to a hard stool or something. We came to the emergency room and were admitted so they could give him a transfusion (sadly not the first he had ever had and far from his last) and an infusion of Immunoglobulin (spelled badly). Conner has only needed transfusions before procedures up until now but the Infusion has previously been needed once a month since the beginning of the year. Once that was completed they had hoped the bleeding would stop and it didn’t. So they started testing his blood for issues, did an MRI a Ct Scan and x rays. They also did a scope and found he had enlarged vessels all down his esophagus starting just ten inches from his teeth. This is probably the source of bleeding they say now they have to find out why the vessels are ?enlarged in the first place. They do another MRI, ultrtasounds x rays etc. and find that he has what turns out to be a very large blood clot in his portal vein, this is the main vein that attaches your spleen, intestines, stomach, esophagus basically your GI tract to your Liver. So its a big deal. While finding this out they also find out that he has a bacterial infection in his intestines thats relatively common but may actually have been the original source of the bleeding, which means that them finding the clot was meant to be. So after much debating, millions of blood tests and a liver biopsy they determined that his liver was healthy, he spleen was enlarged due to the back up of blood ( which also caused the enlarged vessels) that surgery wasn’t best for him. The clot will stay where its at for now and they would begin a course of treatment that would last for a few months most likely. The treatment involves a scope down his throat to look at the worst vessels and then inject them with a glue that causes the vessel to no longer swell. The downside is it can ooze or bleed afterwards and longterm it could cause scaring that would prohibit him from swallowing and could mean a feeding tube eventually. So knowing this Monday two weeks after being admitted they decide to preform the first of these treatments and after while he is under do a double bone marrow biopsy. The procedure itself only takes 20 minutes it takes longer to wake him up and put him out and the biopsy would take another hour, so total they thought 2- 2 1/2 hours before I could see him again. Just over an hour after he went in they called me to meet with the doctor, she said that the procedure had gone well and he was okay but when they went to turn him onto his side to do the bone marrow biopsy blood came out of his nose. So they did not do his biopsy and to be cautious they left the breathing they had in place for the procedure in so that he would not swallow any blood into his lungs. This was scary but something I had been warned about. Because he had a breathing tube in place he had to be ?placed in the PICU for careful watch. He was kept sedated and given pain meds non stop while the breathing tube was in place. The plan was to take it out on Tuesday if he had no bleeding so I went home because the PICU has no beds and I wasn’t to stimulate him too much. I came back in the morning to find out he began having issues with his lungs early in the morning and they didn’t know why. They thought it might be the tube had moved so they repositioned it and it helped but he was still having problems. They did x rays and more blood tests and Wednesday they found out he had a cold ( one he caught while in the HOSPITAL!) which weakened his lungs and immune system in general. So now what was supposed to be easy became very complicated. They did many x rays, tests and platelet and blood and blood products infusions kept him HIGHLY medicated while he began to recover from the cold. He was on five different medications constantly through the IV to keep him sedated and out of pain, he was on multiple antibiotics, he was taking a medication to help with the bleeding and they were still having to give him doses of sedation because he would try to wake up. They also had to administer paralytics so that if they needed to move his breathing tube they could without injuring him. By the weekend they had also inserted an NG tube in his nose to his stomach to get any blood in his tummy out and eventually help feed him if needed. They tried for a couple of days to get him off the ventilator (breathing machine) and he was too weak so they started weaning of the meds and trying daily to get him to take even just a few breaths in his own. In total Conner spent ten days in the ICU and was sent to a regular room only to begin bleeding again and sent back in for another scope and return to the ICU for another day.The bleeding that time is believed to be caused by an ulcer that formed at the injection site from the treatment they gave him ten days before. The second trip to the ICU did not require a breathing tube and they removed his NG tube. He was sent back to a regular room the next day and so far has not had any new bleeding issues. He was also on methadone and adivan for the withdrawl he was going through having been taken off the pain meds and sedation. He is curently not on either of those or any pain meds. He is taking antibiotics, and nutrients via IV as we are beginning to wean him off the nutrients and onto oral feedings again. It is not going ?smoothly as his poor tummy just doesn’t know what to do with the sudden introduction of food after two weeks. If he can eat 20 ounces a day they should clear us for leave but he also can’t have any bleeding and the simple act of digesting is tough on the enlarged vessels.
At this point Conner has the following doctors: Pediatrician, Urologist (kidneys guy), Audiologist/ENT for hearing, Infectious Disease, Gastrointestinal/Liver specialist, Neurosurgeon, Pulmonologist, Hematologist, Orthopedic Surgeon, Orthopedic brace specialist, Geneticist, Optometrist, Occupational Therapist, (pending) Physical therapist, (pending) Speech Therapist, developmental specialist, Allergy/Immunologist.
