Adi is still not gaining weight (13 lbs 0 oz) so at our biweekly visit with Dr. Kendall suggested it was time to have another NG tube placed. The 31st we took her to the office at 3:30pm and Dr Laurie Anderson was supposed to place the tube. The only tube they had in the office was a 5, which was not big enough. The Dr’s LPN was asked to go find the right size. While she was gone I decided to ask if home health had been ordered for all the supplies we needed. The Dr asked her RN to call Infusion Innovation to check if they had orders. The RN left and came back to ask if I had their number, I told her I didn’t and she just needed to look it up on dexonline.com. I mentioned where Infusion Innovations was located so she could enter that information. Not having anything to do I followed her to the computer. She spelled Infusion wrong and didn’t put in a city location so she got frustrated she hadn’t found the number and told the Dr. She finally found the number as the LPN came back with another tube. The tube was an ok size but it had a sleeve at the end bigger than Adi’s nose. I asked if they could just add to the home health order a nurse to place the tube at home. The Dr agreed.
As I was walking out of the office at 5:30pm the LPN came running after me saying she didn’t have the phone number to our home health company. I got frustrated and told her not to worry about calling- if she faxed the order over I would call and coordinate my daughters care. I told the girl at the front desk I wanted my Dr to call me.
When I got home the home health company called and told me they wouldn’t be able to send out a RN on a Friday night. Right as I got off the phone our pediatrician called and we discussed the situation and decided we needed to take her to Primary Children’s Hospital to have the right size tube placed. I mentioned to Dr Kendall I felt inspired we needed to pursue getting Adi’s heart checked out. She said we could go in the next day, (Sat., May 31) to have an EKG and chest x-ray taken. When we got to Primary Children’s they took us back and Scott voiced our concern that she has only 12 lbs 12 oz and tried to explain to the ER Dr that we needed to check this out. Dr Nelson had the nurse place the tube. When the nurse checked placement he only waited to see bubbles and not stomach bile. Then he did a swoosh test and claimed everything was ok. Adi cried for 2 hours after placement which she had never done before. When we got home she started chocking which was not normal. After a minute on the pump the pump would beep indicating something was wrong and nothing would go into the tube.
The next day when we got the chest x-ray, the tube was coiled and kinked in her esophagus.
We immediately headed up to Primary Children’s with an order to get the tube replaced and Scott insisted on doing an upper GI barium swallow at the same time to check the nissen. Sure enough the nissen was too tight and we had finally found an answer to why Adi hadn’t been gaining weight. Scott and I are so grateful for inspiration given from a Father in Heaven who hears our prayers.
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