4 days post surgery. My little princess is resting comfortably for the first time in weeks.
The surgery went great. It was a little over four hours but they managed to put in a G-tube, a Port and did a laparotomy. (a surgical procedure involving an incision through the abdominal wall to gain access into the abdominal cavity) During the laparotomy they found a portion of my daughters small intestine that was inflamed and looked abnormal. After consulting the GI team the decision was made to sent it to pathology so they did a 15cm resection and away it went.
Shortly after we returned to the ward the wonderful Dr. B. (surgeon) came in with a big smile and told us that the entire portion of small intestine removed was an ulcer. An ulcer that was most likely caused from stress. Crazy isn’t it – a 9 month old baby getting an ulcer due to stress. I guess a million and one x-rays, ultrasounds, poking and poking and poking for any type of vein for an IV or to get blood. Would be more than stressful to a grown adult let alone an infant.
It was a huge relief that they found and removed the cause for the bleed. No more transfusions. At least I thought.
The morning after her surgery was a nightmare. My little princess just had a major surgery for an adult never mind for a wee 9 month old. Initially I was extremely irate and was all set to go into great detail of all the mis-haps that came about that day; however after having some time to cool down I’ll just give a brief synopsis. Somehow the orders were “mis-read” “misinterpreted” “missed” (I know what happened but out of respect for the nurses that are fabulous I’ll just leave it at that.) In any case my daughter hadn’t had ANY type of pain medication for well over 5 hours. She grew very irritable which was inevitable and became tachycardic(high heart rate). Eventually everything got cleared up and she was given a morphine infusion. Once that little crisis cleared up yet another one arose. She had started bleeding through her NG suction. Dr B. just happened to be checking up on our little ladybug and noticed that someone had turned her suction to over 100 when it’s supposed to be 40. Sooooo my little princess ended loosing a fair amount of blood was moved to the PICU and needed a 5th and what I’m hoping will be final transfusion. She is being taken care of extremely well there.
Now that she is on her regularly scheduled pain meds I am finally starting to see signs of my daughter again. She is beginning to coo again and even smile. It could just be that she is stoned off the morphine – but I’ll take it. š
My little princess has started a small amount of Pedialyte through the G-tube, and will eventually start on formula.
All in all our little ladybug is beginning to recover, and hopefully we will be home in a few weeks.
Little Ladybug Hugs 
Hi there – I saw your blog link posted on JC’s wall and thought your name looked familiar. I was then going through some emails and found your name from when we did a fundraiser with ML’s for the Down syndrome association. I’ve spent some time in that NICU myself with my baby girl – it’s such a difficult time. There’s nothing worse than watching your child in that environment. It’s interesting because at the time, someone said we were lucky to have a diagnosis – I didn’t really get that at the time – after all, who wants a diagnosis? But I now I see how hard it is when there are no answers and you can’t move forward. Anyway, I just wanted you to know that others are thinking of you and your little girl and we’ll hope that you’re all home soon. Hang in there….
I remember you as well. I hope you did great with the fundraiser.
I can certainly relate with whoever said that you were lucky to have a diagnosis, it’s so hard knowing that there could be one syndrome that ties everything together. However, that being said if we do find out the syndrome/disorder that my daughter has it will then become a reality rather than a ghost syndrome.
Melissa,
I just found this blog, didn’t even realize you were writing one!! You’ve done an incredible job. Your an amazing mother š
I’m so happy to hear things are moving up.
Thank you Lisa, I’ve also created a facebook page if you “like” it the you can get an update for when I have new posts.
Little Ladybug Hugs
Geesh, I think if it can happen to a CDG kid, its going to happen!
Keep strong and I will continue to pray for your family.
xoxo