It seems that every time I update the Olivia page something happens that is different than what I wrote. So, here we go. It has been a month since I wrote anything about Olivia and us. I think that the very next day after the last update was a Friday, and Adrienne had to take Olivia to see our Pulmonary specialist. On first view, with X-rays and such, her lungs looked much clearer. They just need more time to clear up. But, they took some blood and found what appeared to be an elevated white blood cell count. The Doctor wanted Olivia to be admitted to the hospital so they could keep an eye on her. So, Adrienne packed up her stuff and moved in for the weekend again. Every time she has had to go back in, we have had to retrain the nurses and staff. One nurse was going to give Olivia some of her meds orally. Well, she doesn't take anything by mouth at this time, she is all through the G-tube (now the Mic-Key Button ). She still has no strong rooting reflex, and her small and underdeveloped mouth and tongue make it too difficult to swallow consistently. She has had such a hard time with the phlegm and the reflux, that if she is moved too much or agitated she will probably spit up.
So, That weekend I was also doing the BIG 5th grade Seder Dinner at the church, where we cook dinner for about 150 people. This was my 4th year to be the “Chef” and it is always hectic and crazy and fun and well worth it. We have a traditional Seder plate for the ceremony, and we make a full meal to go with it: Brisket, new potatoes, carrots, and green beans and an Apple/Walnut salad. (we go through the Seder, which is part of Passover, and then end with Communion to show how things were done and then changed with the coming of Jesus; his last supper was basically a Passover meal; this way we link the old with the new) Anyway, the kids went to Gramama's and Poppy's house for the day and evening, and I was wrestling with the Crud that was going around, and it was generally and exhausting weekend for all of us.
We caught the Crud from Andy (who brought it home from preschool; they have learned to share nicely) and we passed it around the house, and thought that maybe Olivia has ended up with a touch it herself. The doctor had ordered an upper GI series for Olivia and that ended up not being done correctly at all. He wasn't sure if he believed that reflux was the culprit with her spitting up all the time. They were to have put 90cc of the Barium solution in her G-tube while “filming” it in the radiology lab, but they ended up only using 30cc which was not enough for her to display the reflux at all. We were not happy and the doctor was not pleased either. Well, Adrienne brought Olivia home Monday the 28th and we started our routine over again. Olivia seemed to still have a bunch of junk clogging her nasal passages, so we suctioned several times a day, and she would still sound junky.
Adrienne took her back to the hospital on Friday the 4th of March thinking that her lungs had fluid in them. She sounded really bad on Thursday night. We thought that she was getting really sick. So, again we were able to trade off staying with her. I was able to see the doctor as he came by during his rounds. I was able to explain why we felt that she was not just gagging on phlegm in the back of her throat (which was also happening), but that it was truly reflux. Our one bit of proof was the fact that Olivia was given some pediatric Tylenol via her G-tube and she spit up bringing the pink medicine with it. So, our doctor (the pulmonary specialist guy) decided that she may have had the fundoplication too tight and perhaps nothing could go down her throat, like saliva and mucous, and that it may have also herniated, causing an occasional spurt of fluid up the esophagus. So, Olivia seemed to do fine that weekend and she was scheduled for another upper GI series on Monday.
This time, they were able to do it right. Our doctor went with Adrienne and Olivia this time. First they put some fluid down her throat to see if it would go pass the fundoplication. It did, so we knew that her fundo was not completely closing her stomach. Next they did the “barium swallow” which for Olivia is just pushing the solution into her G-tube. So, they did a full 90cc and she promptly had the reflux and spit up and probably aspirated on it as well. Well, we knew then that we were right. The doctor realized that her fundo had failed. They have pondered whether we want to redo the surgery. So far, that is a big NO. She would be in the hospital for at least a month again I am sure, if we did that. We decided that we would try tackling it with meds.
So, after coming home again that time on the 7th, we had an appointment with an ENT coming up. Adrienne took Olivia along with our other advocate, Nancy, who works full time with special needs children who have trouble with development like Olivia. Learning to eat and on upward to other motor skills. She had a scope done on her esophagus, which showed us that it was pretty well inflamed and thus producing much mucous to try and heal itself. This doctor decided that we should put Olivia on Previcid and Regalin (two reflux meds, not sure of the actual spelling). We started this regime and Olivia seemed to have a much harder time. The Previcid is a tablet that we had to dissolve and give her. It would never fully break down. So, we were also in line to see the GI specialist soon too.
After the GI specialist, we went back to Zantac and Bethanocal, one for reflux and the other to help calm the stomach muscles. She still has had reflux trouble day in and day out. She was on 6 different meds for heart, lungs, reflux, antibiotics which we were giving at just about any time of day and night. During all this, Olivia has shown signs of slowly getting stronger and more developed. She likes to hold onto those connecting plastic baby rings. She will try to move around, like holding her head up and trying to sit up. She weighs around 10lbs and 14 ozs as of March 21st . She still is on Oxygen, although we are slowly weaning her of it now. (hope to have her off it by summer) We are still doing continuous feeds and have switched from the Lacto-free formula to something more expensive, the predigested, milk protein-free stuff. Also, our cardiologist took her off two of the meds. The heart med (Digoxin) and the Spironolactone (a diuretic). She has still been spitting up, maybe a bit less than before, but it is still spontaneous and not always predictable. The cardiologist gave us her latest diagnosis on Olivia's heart the other day....PDA remains closed and the clamp is holding up nicely. She has a moderate sized VSD and a mild to moderate pulmonary valve stenosis. Both of these may require surgery when she is 2 or 3 if they don't heal themselves....I suppose they could take care of both at once, although I am not sure what they can do for the stenosis.
In the meantime, we have tried to keep Andy and Sara busy and involved with us as much as possible. We will keep Roger in our thoughts as he has been sent off to training camps before being deployed to Iraq (it was going to be Afghanistan, but that has changed) for 12 months. Let's hope it goes smoothly and he brings back just memories and pictures when he comes home. We hope Aunt Yvonne recovers from her medical tribulations and last but not least, we hope and pray for Grandma (Elfrieda) for a full recovery after her last bought with illness, as well as all the Schultz family over there in Georgia.
be seeing you, Andre
