Through out everything going on these past 3 weeks my one crutch has been the make shift Starbucks on the first floor at MAC. Now that I’m able to use the underground parking I can pick up a grande Chai Latte on the way up to the children’s ward.
I was just coming around the last bend before my daughter’s room – took my first chai latte sip of the day and was intercepted by a porter pushing my daughters crib out of her room. We were off to radiology for the barium x-ray, not before putting in the NG tube that my little mastermind had intricately worked away the super strong tegaderm tape on and had finally managed to pull out just before I arrived that morning.
The barium x-ray was again a very interesting procedure to watch, once it was put through the NG tube we had to keep turning LB onto her right side to help the barium move through the intestines.
That being said it also meant more radiation exposure to this already delicate little body.
Only about 1/2 hour into the procedure a charge nurse from the ward came into the x-ray room with a bag of O-Neg blood in her hand. Here we go again. We just can’t break out of this endless cycle.
My little ladybug’s hemoglobin had plummited down to 74 and she had to be transfused for the 4th time. How much more of this could her body handle?
Once the x-ray was complete we returned to the room and were followed in by her team of doctors. They were unable to see anything that looked unusual or would warrant concern. An ECG Holter Moniter was put on this afternoon as well and will monitor her heart for 24 hrs so the Cardiologists can get a better understanding of the arrhythmia.
There is still no clear set reason or cause for the GI bleeding, but, they were able to tell me with the utmost of confidence what wasn’t causing it. At this point I don’t think I could even attempt to pinpoint how I was feeling. Tired, frustrated, sad, hopeless? There isn’t a word that could ever describe ones feelings after all of this.
I want them to find the cause of the GI bleed and stop it, I want them to diagnose whatever syndrome or disorder my daughter may have and if possible help treat it, and I want them to give me answers!
I’ve been patient, I’ve listened and waited while they have exhausted every test availble to try and solve this mystery. I know all the Doctors and Nurses are doing as much as her little body will allow them to do, and I know that they are all nearly as frustrated as I.
We are now at the point where every possible non-invasive test has been done and if the GI bleed still progresses my beautiful little ladybug will be taken to the OR for exploratory surgery. All we can do is wait and see.
I’m definitely invisioning a relaxing vacation as soon as my little princess is 100% healthy and out of the hospital.
Little Ladybug Hugs 
You don’t know me but i am a very good friend of Janevieve (brides’man in her wedding party) who brought your situation to my attention. Upon reading your situation, my wife’s and my heart and prayers go out to you and your family. We fully understand what you are going through as we have a 3.5 year old son who has undergone his own very special and extraordinary journey.
Our son Ethan spent his first 3 weeks in the NICU as he was noticed to be very low muscle tone. He was also thought to have a genetic disorder known as prader willi but testing during our stay was negative (fed by NG tube as well). To provide a short readers digest version –> we have been seen by genetics, neuro-musclar at Sick Kids, Metabolics, GI clinic (still follow), Neurologist (still follow) and the list goes on and on. Furthermore, the testing has been relentless from MRI’s to EEG, to a one week stay at the EMU for seizure monitoring as well and the testing list goes on and on and on… Three years later… we still do not have a diagnosis for our son who is currently classified as Globally Developmentally Delayed, Non verbal, Non mobile). We just had a follow up with our Neurologist yesterday and we are heading back to Sick kids for another MRI and muscle biopsy. Why am I saying this? To let you know that there are others out there that know what you are going through. Know what your feeling. Know what your worried about.
Janevieve asked if I could give some advice and that I am gladly willing to do, if and when you are ready for some assistance. My wife and I joined a local community support group for parents with special needs children. At first we were very unwilling to attend or participiate but 2.5 years later I can assure you this has been one of the most rewarding experiences of our lives.
As for advice, the best I can give over an electronic forum is that you are your child’s best advocate. You know them best. You know what to push for, what to not back down from. Don’t hesitate. Ask as many questions as you can. Ask what other tests can be done so to get answers. Don’t let them say they don’t know and leave it at that. Don’t be afraid to ask for support. Don’t be hesitant to let others help you. Don’t be afraid to cry. Don’t be afraid to be worried about the unknown and the future.
I truly do hope that some of this provides you assistance. If I can offer any more assistance, or attempt to answer any more questions I will glady do so.
Chris, thank you so much for getting in touch with me. I am amazed at the similarities of what we have both been through. I do have so many questions to ask you, and will certainly get in touch with you within the next week or so.