Ella weighed in at 15 lbs, 12 ounces and 27 1/4 inches long. She is getting bigger! We discussed the notes/strategy from the nutritionist that visited last week. Until the swallow study is complete, Dr. Perry increased her food intake 50 ccs total. So now she is taking 700ccs of formula each day. Her caloric intake is lower than it should be, so the increase in Alimentum should help. Once the swallow study is done and there are no concerns, we will reconvene and come up with a new feeding strategy. We’re hoping that we can resume with solid foods and phase out Alimentum to a pediatric formula, likely Peptamin Jr.
Retching has been a common occurrence with Ella these days. It used to occur in Gainesville, but seemed to be tied with feeding and volume. For some reason, it has increased since our return to Colorado (several times daily). But now, it is not related to feeding and she is retching HARD. It still seems to be directly related to secretions in her esophagus that she does not know how to manage (they block her airway). So, she coughs, then gags, then retches. Dr. Perry mentioned several ideas including dryness tickling her throat to maybe she is retching more because she is not eating orally and using the esophagus muscles. After discussing all the variables that could be impacting it, he wants her to go see a pediatric gastroenterologist to look at her esophagus and check out her nissen fundoplication. In addition, he increased her dosage of Reglan 50% from .4ccs three times per day to .8ccs three times per day.
A few days ago, I ceased giving her juice because she is retching so much that I am concerned about aspiration. Instead, I am simply giving her water. Dr. Perry expressed that water is good for her and to let her have as much as she wants. The good part is that it does not seem like we have to be as conservative with fluid restriction in her diet. Today, she drank 8 ounces of water – - that’s a lot for her.
Ella had some granulation tissue build-up on her g-tube, so Dr. Perry burned that off. Also, he provided us with some silver nitrate sticks so that we can manage that at home in-between appointments.
We discussed that we are anxious to try weaning the diuretics. We’ve always been concerned about the high dosage that she has been taking for so long. Dr. Perry recommended that we have labs taken in the morning before she sees the pulmonologist in late August, so we have a baseline. Plus, she hasn’t had blood labs done in a while and it is always good to check her electrolytes.
Ella also received her 12 month vaccinations. They did it just the right way – quick, fast. Two nurses came in and gave two shots in the each leg simultaneously and then two shots in each arm simultaneously. As you might expect, Ella did not like this part of the visit. But at least they understood to not take forever to administer 4 shots. I had to increase Ella’s oxygen and do lots of comforting afterwards, but she calmed down within 5 minutes. That’s pretty good for Ella – - earlier on this journey, she would not calm down that quickly when she would get upset.
It is so cute to see Ella interact with Dr. Perry. She likes him. She was rolling around on the table, kicking and grabbing the paper lining. Then, she would roll over and hand her binky to him or grab the hair on his arm! He mentioned that he can see a lot of forward development in Ella since the first time we visited. It is always good to hear that kind of perspective.
Ella, Grandma West and I hung out today at the house. Grandma West looked for projects to do – she found the swing that Grandpa bought for Ella’s birthday and put that together (Ella had a swing in Gainesville, but we sold it on Craigslist before coming back to Colorado). It will be good to put Ella in a swing again. I think we’ll try it tomorrow.
The Bun spent more time in her high chair today. The sessions throughout the day were for 5 -15 minutes, depending on her tolerance. I’m just placing her in it and distracting her the best I can to try and get her used to being in the chair. Eventually, if we get the “ok” to begin eating solid foods again, I’d like to have her eat in the chair! It would be a nice routine as we start that type of therapy again.
Aside from all this info, she had a great first birthday and is still the cutest Bun ever! By the way, is that a thumb I see?
