Our dealings with Children's Hospital New Orleans

Jordan is our youngest son, the third child down the line. Jordan's pregnancy was a difficult one to say the least. Gestational diabetes kicked my butt, the distance to the dr appts and hospital visits were a pain as well, but all in all, when that kid finally made his appearance it was well worth the wait.

Jordan had been sick since birth. In fact, his first infection was at 5 days old, the next one at 7 weeks old, both required hospitalization and IV antibiotics. The infections just kept coming, but since Jordan was a good baby, only crying when he was hungry, I often didn't know he was ill until the infection had gone far beyound being ordinary. The infections continued.

Finally when Jordan was about 18 months old, he had a severe bout with diarrhea and pneumonia at the same time. Well I was treating the diarrhea with the BRAT diet, bananas, rice, apples, and toast with lots of cheese, per doctors orders. Well the more we gave him the sicker the poor kid was getting. He was hospitalized at children's hospital for treatment and evaluation. The drs did all sorts of tests on my baby, eventually the gastro dr figured out that Jordan was stomach allergic to milk, the reason for the diarrhea only getting worse, but the dr had no clue on the pneumonias which only made his asthma worse.

So we stayed in the hospital for about 3 weeks seeing about every darn specialist that could offer any type of advice on what to do about his infections. Finally, one sunny day, Jordan was on his way back to health because the right antibiotic had been found to cure his pneumonia,This was back in late '94, when Aids was still hot on everyone's mind. The life altering news was handed down to me and I sat there stunned, gazed, dumbfounded, choose your adjective here. Some young dr walked into Jordan's room and told me that Jordan had immune deficiency. SO you know dumb me asked "what are you telling me he has AIDS?" The doctor said "no unless there was reason to think he had AIDS."

So Mommy instinct took over and I immediately called my husband to tell him what the dr said, and he said the same exact words as me. I knew I hadn't been in contact with anyone with HIV, and my husband knew the same thing about himself, but where the heck was this coming from. So I went on over to the nurses station, a place I had grown to know quite well and asked to see a dr immediately that I needed to know what the heck was this diagnosis and where the heck did the boy get this from.

So the head dr of immunology showed up, and explained it all to me. Said that this is mostly likely something that relatives of former generations died of, and never knew what they had. So Jordan was started on infusions, which gave him man-made antibodies to built up his system. Well that went well for awhile, then his viens were collapsing, these infusions were once a month at the time. He took these infusions until about the age of 5, when the supplies went rancide and the good supply was only to be used on patients on the critical list. Jordan was taken off of the infusions, but the infections never stopped coming, they may have slowed down some, but never stopped.

Well when Jordan was about 10 years old the dr determined that he was going to need the infusions again on a monthly basis. So once a month I was missing school and work to drag him out to children's hospital in New Orleans.Everything went well, until the manufacturer changed the makeup of the meds. I will remember this day as it was yesterday. The nurse started the infusion on Jordan and left the room. I say about 30 minutes went by when Jordan started saying he was cold. So I went and retrieved him a blanket. Shortly there after he started sweating and I noticed that he was burning with fever. So I paged the nurse, no one came. Then I paged again, still no one. Then the boy starting having a seizure, that was it, I ran down the hall screaming. In the room came a dr with a crash cart, a nurse with all sorts of stuff in her hand, another one bagged Jordan and yet another one had the paddles in her hand. I was standing there watching my son die, or so I thought. I had no clue as to what the hell just happened and even though my mouth was open, no words were coming out.

The drs told me that the boy had an allergic reaction to one of the new ingredients in the meds. Jordan stayed overnight and the drs vowed we would never get that med again. Darn skippy we weren't. So the drs ordered that Jordan was to receive Gammaglobins by another manufacturer and that kind did fine with our son, but once again all his viens had collapsed. So we saw the surgeon to put a port a cathe into his chest. For the next year the boy lived in a bubble because of the thing passing so close to the lungs and the heart, no one wanted to break the lead.

Finally a manufacturer had come up with another version which would allow Jordan to get his meds subqutaneous, I believe the whole word means through the fat of his stomach, but that's where he gets it in case that's not what the word means. So every week, Jordan gets his meds through his stomach, done by either me or my husband. The infections have all but stopped completely, knock on wood. When he does get an infection, he has a blood test and it's always a viral infection which is fixed by bed rest, fluids, and love. Jordan is now 13 years old, he will be 14 next month. He still is allergic to milk and milk products, but with modern technology in the food development department, he eats like most others. His diet does vary at times from the rest of my family, but it has gotten so much easier in recent months. Jordan was getting his vitamins through Isomil until he was 6, you wanna talk gross try making mashed potatoes made with Isomil. It looked and spread like cement.

I just wanted to share in case I ever pass comment about Jordan needing his infusion, everyone here will already know what I am speaking of.

Well now ya'll know the next great chapter of my life's story, I hope that everyone can grasp what I was trying to get across, sometimes my brain thinks faster than my fingers type. My son is still alive today because of the great drs and staff at New Orleans Children's Hospital. I will be forever in debt to you.

Thanks,

Stephanie