Tuesday, April 25, 2006

I’ll be home for Christmas…


It was 10:42 a.m. on Monday morning and I had just received another call from school regarding Dear Son. He had been vomiting again and I needed to pick him up. Just last week, I had just been called by the school for the same issue however they had taken him by ambulance to the nearest hospital and he was later released. Here it was, only 72 hours later, and the issue was repeating itself for the umpteen time this year. I wondered how I could continue to work until this issue was resolved, but more importantly, how much longer Dear Son could endure all of the vomiting.

Dear Son had been hospitalized nine times this year, four of which were for vomiting. The year had started with uncontrollable seizures that were difficult to stop. I woke one morning hearing Dear Son gasping only to find him seizing. It was 5:30 a.m. and the seizure was escalating fast. I carried him into the kitchen and set him on the floor while I called 911. There was no time to do anything else and I needed to hold him to keep him from choking on his tongue. I called 911 and tried to give them the information as quickly as possible however the seizures began to get more and more violent. Soon Dear Son’s arms and legs were bouncing off the floor and I struggled to remain calm and give them the information. I already knew the routine. The security at the apartment complex would unlock the secured access allowing the fire trucks and ambulance to access my building. The paramedics would arrive, take Dear Son in the ambulance, start an IV and then transport him to the nearest ER. At the ER, they would give him some seizure meds to stop them or if the seizure had subsided, run labs and then administer the seizure meds. There was no time for that. I needed seizure meds stat. I began to cry while I waited for them. It was the first time I had done that, in all these years.

The paramedics arrived and took Dear Son to the local hospital. He was still seizing violently so they administered the seizure meds stat without installing the breathing tube first and the airways collapsed. It was now a Code Blue and a crowd of people had gathered to watch this life saving event. Only, it wasn’t an episode of ER, it was my son. I prayed for him but couldn’t watch. Soon the transport team arrived and he would be airlifted to the Big Prestigious Academic Medical Center.

That was how the year started. After that event, I would be given Diastat (a kind of rectal Valium) to administer at home, in case of such emergencies. In May, we would implant a feeding tube to make administering the seizure meds easier and from September on, he would be hospitalized on and off for this vomiting.

It was early December and Ped Neuro Doc had just admitted Dear Son for his tenth hospitalization this year. It was critical to locate the source of this vomiting because he had just been re-scheduled for his surgery to implant a Vagus Nerve Stimulator (VNS) due to the intractable seizures. The surgery had been cancelled once, due to the vomiting, and time was running out. Dear Son had met his stop loss for the year and the surgery, if it was done by the end of the month, would be paid at 100%.

The vomiting continued at the hospital. Several specialities were called in to diagnose Dear Son. We had Neurology, Pediatrics and GI to name a few but we were not making any progress. Each morning, I would feed Dear Son his oatmeal, and some time later, he would vomit his breakfast. This would continue over and over until he no longer wanted to eat. Dear Son was getting weaker by the day and losing weight rapidly. Each week, a new attending would come on service and there would be a new plan of attack. I was getting frustrated with the physicians since each specialty had their own plan, none of which made much sense.

Dear Son had stopped eating. It was now only a few days from the new VNS surgery date. I stayed with Dear Son 24 hours a day, as I always did. I worried he was hungry. He was getting terribly thin; he was slim to begin with so losing more weight was troublesome.

A new plan was agreed to and soon the Neurosurgeon agreed to implant the VNS. The surgery went well and the Neurosurgeon came by daily, long after he needed to, to check on Dear Son. The vomiting issue had not been resolved however Dear Son had stopped eating several days ago and I now had a bigger issue on my hands. Pediatrics wanted to release Dear Son so we could go home for Christmas. They had not solved the cause of his vomiting, Dear Son wasn’t eating, he had lost 10% of his body weight and he hadn’t had any food in ten days. I told them it was irresponsible and that we weren’t leaving until they knew the cause of the vomiting and until Dear Son could eat. Frantic, I asked the nurse to page Ped Neuro Doc but got no response.

All the physicians had left for Christmas and only the residents remained. I had been coming here for years with Dear Son and knew we were in trouble. Dear Son was fighting for his life and nearly comatose, in my opinion. I demanded they start some IV nutrition. It was Friday night and with everyone gone, there was no one there to determine how much nutrition he should get. I fought with them and they stalled. Christmas morning arrived. I called my church, crying once again, and asked them to pray for Dear Son. Dear Son lay still on the bed, looking helpless and frail. I prayed for him some more. Tired and hungry, I left the room briefly in search of something to eat. The restaurants were closed for the day, so I quietly chose a ham sandwich out of the vending machine, because it was the only one left. My memories of every Christmas would re-play over and over in my head, along with all the memories of Dear Son. I had hoped he would make it through.

Christmas and New Year’s passed and I continued to pray for answers. It wasn’t until early January, that a radiologist would locate the cause of the vomiting. A surgical nurse had installed a too large feeding tube just three months ago that had blocked Dear Son’s stomach opening hence the vomiting. Not only did it block the tube, but it had scratched the back of the stomach thus irritating his poor stomach, that much more. My heart ached for my son and all he had been through. Finally, 32 days after he was admitted, we came home.

*Note: The picture is of Dear Son just a few days after being released from the hospital.

4 comments:

Kelly said...

Poor guy!

That's incredible---that with all that vomiting, they didn't do a floroscopy study sooner. How incredulous! It should've been the first thing they did! It sure was when Michaela wasn't eating....and she wasn't even vomiting!

Just goes to show that all these docs are human. But sometimes I WISH they were more robotic--especially when it comes to our kids hurting, over their mistake!

Cathy said...

What a horrible holiday season you had. I'm so sorry for everything you have had to go through. I only wish there was a magic wand to take all this away. Ya know Dream Mom, Dear Son is beautiful!

Wrkinprogress said...

My dear friend,

I ache for you, reading this post. I spent a Christmas in the hospital with my late husband, our first hospitalization together. You're right -- nothing is available on Christmas in a hospital. NOTHING.

I can't imagine your frustration, fear, anger, anxiety...what DIDN'T you go through, except joy, relief, peace...all the things you truly needed.

From this point forward, may all of your experiences, especially where Dear Son is concerned, be more peaceful.

Sending big hugs to you both across the miles, and much love.

WIP

Danielle said...

Holy Cow! Ugh. I can't even imagine...


By the way, I finally added you to my blogroll. Sorry it took me so long.

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