Progress!

What a long day! First Tomas went downstairs for a liver ultrasound to mark the positioning for the liver biopsy. Then we came back up to his room and waited for OR to call us down. Since it was a rather boring wait Tomas threw some fun at us by dropping his blood sugars while ON the IV fluids. Scramble, scramble, and an increased sugar solution IV was ordered and kept him stabilized. Eventually we were called down.

What can I say about that kiss goodbye? Nature may abhor a vacuum but that kiss does not. Placing your lips on your little ones forehead as they are about to be taken from you creates a nothingness, an abyss that pulsates its emptiness through to your soul. It recedes only after the massive exhale you take when you first see your child post-op.

The first doctor to come out was GI. He was able to get the liver sample with absolutely no problem, and no bleeding, praise God. HE should have the result by my appt. with him on Tues. Now onto the endoscopy. These were his exact words, "Tomas' stomach is very unhappy. It has blood oozing from everywhere." A feeling of giddiness washed over me. I wanted to do the happy dance all over the corridor. Something concrete? An answer to why he has had blood coming from his G port for 18 months? Yes!
He is treating it with some IV zantac and then doubling his prevacid for the long term. Possible causes are metabolic issues or motility issues, both which will be investigated.

Speaking of investigating metabolic disorders: While I was waiting for the oncologist to do the bone marrow biopsy two endocrine doctors came and got me out of the waiting room. We went to a conference room to discuss what has been happening with Tomas' sugars. What a relief it was to have the attention of the right people to help him. We went through everything and they assured me they would get to the bottom of what is going on. I was flying high when I left that conference and bumped into the hem/onc doctor coming to find me. The biopsy went textbook perfect and they will have the preliminary results for Monday's appt.

I went into PACU happier then I have been in a very long time. Tomas was sleeping and came out of the anesthesia perfectly, again praise God. We wheeled him up to his room where he woke up very unhappy from all the prodding in his stomach, began retching, desatting, turning blue, stomach arching, etc, etc... I ran and grabbed his stomach vent and between myself and two nurses, some zofran and loratab where able to get him settled about 45 minutes later. He was fairly touchy the rest of the evening, but has finally fallen asleep, and is on room air!
I am so exhausted, but finally, finally feel like we are making forward progress. He should get to go home tomorrow and then next week is follow up with all three clinics.  Thank you all for your prayers and well wishes. If you have been through it then you know how much it means, and if you haven't, well, it just means a whole, whole lot!