Watching & Waiting

The first 8 months of my princess’ life were very similar to my pregnancy. My darling was in the NICU for a week after she was born, and was kept in for more testing. She had x-rays and ultrasounds from head to toe. We saw Genetics, Endocrinology, Orthopaedic surgeons and the list goes on and on. Aside from the short femurs everything came back normal.

At 1.5 months the little munchkin became extremely irritable and began to refuse feeds. Turns out she developed acid reflux. For the next 7 months she would be fed primarily via an NG (Naso-gastric) tube and began a regimented intake of Ranitidine and Domperidone, meds to help control the acid.

Shortly after genetics wanted to run another test for Achondroplasia and Pseudo Achondroplasia. Again they were fairly certain that she would have one of these two forms of dwarfism. Alas – the results came back normal.

6 months was the first attempt to finally be rid of the pain in the ass NG and have a G-tube put in – a feeding tube which goes directly into the tummy. Around an hour after she went in, the surgeon came out and explained that they were unable to do the procedure. No one on the team was able to find a vein to start an IV line. Which meant she couldn’t be sedated. To say that I was angry was a HUGE understatement. How was it that staff in a hospital trying to build up a reputation for being one of the best childrens hospitals in the province couldn’t find a single good vein in my daughter. I even tried having docs at Sick Kids in Toronto attempt the procedure – about a week later I heard from my family doctor that they declined to do the surgery because our local hospital should have been able to do it.

I would soon learn that our little ladybug would continue to hide her veins.

The most recent hospitalization was at 8.5 months. (We are still here) It took 7 teams to find a vein for an IV line. Finally the anaestheticians were succesful. That victory was rather short-lived though. The line was no longer usable (interstitial) after a couple of days. That’s when surgery jumped in to put a temporary broviac catheter line in her femural area.

This most recent trip was brought on because the little one was breathing very rapidly. What started off as a possible infection soon grew a lot worse. Words were openly tossed around like, septic, arrythemia, tachycardia. It really didn’t take long for me to completely understand this new language. My daughter had a very irregular heart beat, and at times her heart rate would jump to well over 200 beats per minute. We still have no idea where the mystery infection was after a week of an anitbiotic cocktail the fever finally broke and there was no trace of the infection.

Then all heck broke loose. My typically calm, sweet baby became as my husband would call her – Linda Blair. She was arching her back, twisting around and screaming in pain. Our fantastic nurse at the time immediately stopped the feeds. Shortly after I noticed blood in her stool. Then her hemoglobin levels dropped drastically and the first blood transfusion was given.

A couple more transfusions and a week in the ICU later there is still found cause for the bleeding. Which brings us to today.

At the moment I’m gazing at my little princess who is having a video EEG and has a hundred wires attached to her tiny little head. Holding my breath, ready to push the red button to make a note every time there is the slightest hint of unusual eye movement that could be indicative of seizure like activity.

At this point more tests are to be ordered to try to find the source of the bleeding and we will likely be here for a few more weeks.

Like the title says – at this point all we can do is Watch & Wait.