As usual I am behind with updates, but will have one soon. In the meantime I have a snapshot of Aidyn life while he had a central line. I did this because a parent from a short bowel syndrome support group asked what the timeline looked like weaning off TPN. This is pretty detailed.
Aidyn was born at 34 weeks (4 lbs 12 oz) and got NEC at 3 days old.
* 3 days, 6 days old - 2 resections, jejunostomy, broviac, left with 15 - 18 cm small bowel and 50-75% of large bowel, no icv, no appendix
* 3 days old - TPN and Intralipids.
* 3 weeks old - started Lovenox because of a clot at tip of broviac
* 6 weeks old - went to Boston for eval, started intestinal rehab, switched to Omegaven (his liver was already bad by then), restarted feeds orally with breast milk (not put on transplant list to our surprise)
* 2 months old - Tpn reduced from 24 hr/day to 22 hr/day
* 3 months old - line replacement
* 5 months old - ostomy take down, successful reconnection, liver healing, started physical therapy 3 weeks after reconnection
* 6 months old - started Elecare (couldn't keep up with pumping)
* 7 months old - introduced solids, Cycled from 7 to 6 days/wk TPN/ 18 hr/day and hydration (saline) 1day/wk
* 8-10 months old ?? - Cycled from 6 to 5 days/wk TPN and 2 day/wk hydration 16 hr/day
* 9 months old - surgery to remove granulation from CVL site, 1st line infection/sepsis (Staphylococcus aureus)
* 11 months old - TPN/Omegaven/Saline reduced to 12 hr/day, 20 oz/day orally Elecare (20 al/oz)
* 13 months old - TPN/Omegaven down to 4 nights/wk, hydration(saline) 3 nights/wk, lots of solids and more oral fluids
* 15 months old - TPN/Omegaven down to 3 nights/wk, hydration 4 nights/wk, surgery for broviac replacement due to 8 month long granulation tissue problem, 2nd line infection/sepsis (staphylococcus aureus in new line!), hospitalized again for low creatinine levels most likely a reaction from Gentamicin and Unasyn combination, hospitalized a 3rd time in 3 weeks for another line infection (different bacteria)
* 18 months old - TPN/Omegaven the same, 2 nights hydration, 2 nights completely off, Elecare 30 cal/oz (from 27)
* 20 months old - blood in stool, allergy testing (allergic to wheat, cow's milk, beef), 4 nights off, 3 nights TPN/Omegaven, tested negative for cystic fibrosis but given pancreatic enzymes (Creon 6000) to absorb fat better
* 22 months old - TPN/Omegaven stopped, hydration as needed, peaches and bananas restricted (blood allergy test)
*23 months old - granulation around broviac again
*24 months old - Broviac removed!! 750 mls of Elecare a day. In addition, another 260 – 300 mls of fluids from ORS and non-dairy milks, Lovenox stopped
Aidyn was blessed enough to not have issues with vomiting, reflux or oral aversions. He also never did tube feedings, which is unusual for short bowel syndrome.
