My Summer of Sandwiches

The most recent picture of my little fighter.

The PICU days.

Well, it would seem that I am living proof that a person can exist on sandwiches alone. Oh, and I've also worked pretty hard to eat my own weight in puffed wheat cake. There isn't much selection when it comes to hospital cafeteria food, and the hospital is where I have been every day for two months. I'll go back to the beginning now.

Deklan Jon, my little sweetheart, was born on July 7 at a healthy 8.8 pounds. He came into the world in the usual way, other than this time around I had this feeling like I was scared to give birth. It sounds absolutely crazy, but I just had this feeling of impending doom when I'd go into labour, and those feelings of stress shut labour right down. I actually said to The Lumberguy during labour that I had a feeling like something was wrong.

Fast forward a couple of days of labour stopping and starting and our healthy, wonderful, long awaited baby BOY arrives. A little strawberry blond, blue eyed miracle. Everything seems normal. Perfect actually. He and I had an amazing first day at the hospital. He nursed like a maniac, loved to snuggle, and even slept in my hospital bed with me. We even took our little guy home. That evening at home, day 2 of life things start going backward. He seems fussy, not nursing as well, clammy. In the morning I phone the health nurse. She says everything I am telling her is still within the realm of normal and I could leave it if I wanted. But that sinkin suspicion inside me told me something just wasn't right. I phone my doctor's office. He says to bring him in to emergency in the city an hour and half away if I wanted him seen. I think everyone thought I was crazy. Going into the city again. Even I didn't want to make the drive again after all the labour trips, but something just wasn't sitting well.

By the time we got to the emergency room he was quite lethargic. That was actually the last time I'd hear him cry in 3 weeks, as he slipped into a coma.

The doctor, a pediatrician of 30 years told us he was just dehydrated. And maybe he had an infection. They started an iv and took a sample of spinal fluid. It was really hard for the hippie in me to accept that they were going to start him on two different antibiotics 'just in case'. That night he lost the ability to self regulate body temp. And this started the process of what I loving refer to as the hospital 'fucking the dog' for 2 days while his condition deteriorated. They tested pretty much everything and found nothing.

On the second afternoon I witnessed what may well have been the scariest thing in my life. I saw my baby stop breathing. His little lungs had been working too hard. He had become septic. He was airlifted to a bigger hospital. In retrospect him stopping breathing was a blessing, because it got him where he needed to be and fast.

Within two hours of being transported we had a diagnosis. The doctor came into the little, seventies hotel reminiscent waiting room where we'd been waiting for hours and said theres good news and bad news...The good news is we know what it is, bad news is we don't know if we caught it in time. We pretty much paced a hole in the floor waiting for the logistics to be sorted out...he needed to be transported across the city and it was unclear if he'd make it. A NICU transport team was thrown together, his drugs mixed, blood typed and ordered from the blood bank to prime the dialysis machine. We actually saw the ambulance, his ambulance scream past us as we sped across the city. That was a feeling I'll never forget.

The doctors worked feverishly against time into the wee hours of the morning. I remember the pediatric nephrologist coming out and talking to us, telling us about the CRRT machine and its risks, the only chance at saving his young life. It was the only way to get the unsafe levels of ammonia out of his blood. A good number for an ammonia level is 50. At that point his was 1800. It had poisoned his system, caused seizures and his organs were shutting down. I don't want to go into detail, but they explained he most likely had a urea cycle disorder. http://www.nucdf.org/ucd.htm

I can't even remember now, as the days have all run on into one long never ending blur, but he was on the dialysis machine for about three weeks. Upon coming off he went into septic shock and he was found to have a pseudamonas infection from all the lines in him which had been masked by the machine. It took trying out different medications until finally antibiotic number 7 got it under control. He had to be on that for 4 weeks after his blood cultures started coming back negative. Slowly but surely he started losing lines and his ventilator. He was stable enough to be moved from the pediatric intensive care unit after 4 weeks to a regular ward within the children's hospital.

We have been staying on the ward for over a month now. I hate it. It is so hard and so far from the life I envisioned for myself or my children. In order to be a good mother to him, I am separated from the others. After being misdosed and overdosed, I do all his feedings and give him all his medications myself. Let me tell you, and this is not just the hippie in me talking as I have witnessed it myself...if you or a loved one is hospitalized, you need an advocate, or if you are well enough advocate for yourself. Check your chart, ask questions, call your caregivers on everything. There have been two big mistakes made by staff since we have been in the hospital. They were mishaps with drugs, as well as other mistakes like lab requisitions for another child having Deklan's name stamped on them.

I think the hardest thing in all of this beyond almost losing him was the fact that I'm not able to nurse. I can't nourish my child. He has to be on a very strict modified combination of formulas. Amino acid modified medical food...yum.

It is so late and I am very tired, and there is so much I'd like to say but I'm going to try to cut it sort of short. Maybe if I get back to my computer I will blog more.