Eli is moving forward again! I haven't updated the blog b/c sometimes it's hard to post when everything seems to be going backwards. Now E has a good update, so I can start our re-cap from two weeks ago.
The downhill slide-
Eli has been battling a nasty virus since 2/19. It started with 2-weeks of GI symptoms, which for Eli meant major stooling out episodes. I adjusted his formula rate and concentration in attempt to avoid another ER trip for dehydration. Eli was able to maintain his fluid balance at 20 cal/oz Elecare running at 24 ml/hr, but his weight gain once again came to a halt. He bounced around 3300 grams for 3 1/2 weeks w/o any significant gains.
Return of the preemie lungs-
The week of March 5th Eli's evil virus turned respiratory. Our poor little guy was coughing all the time and working so hard to breathe. His respiratory rate was above 70 breathes per minute, and when we took him into the ER 3/6 his oxygen stats were hovering around the low 80's. An x-ray in the ER showed Eli had pneumonia, so we spent most of the day doing nebs every 20-minutes in the ER and watching his O2 stats jump from high 70's (before neb) to low 90's. We were released late in the afternoon w/ three new prescriptions to add to E's 9 daily meds: prednisone (steroid), strong antibiotic, and albuterol nebulizer treatments every 4-hours.
Eli's breathing improved over his 3-day steroid treatments. We went to E's ped appt Friday 3/9 and he was just wheezing (actually this was a good sign b/c it meant he was getting air into his lungs). Eli had his 9-month well-baby check Friday, even though he was sick, we didn't want to subject him to more sick kids @ the clinic for another appt. E weighed in at a whooping 7 lbs 5 oz, 21.5 inches long and 15.75 in head circumference. He officially "fell off" the growth chart at this visit. The ped went to plot his weight and had to draw the graph lines down into the box where you are supposed to write the measurements (I don't know if this makes sense, but Eli is 4+ lbs away from making the 3rd percentile for his weight for his adjusted age of 6 months).
We didn't talk much about his growth or development, as his ped now classified Eli as hospice care. I really hate this term, but she explained it b/c E is at a point where there is not much more they can do with his treatment, except wait for him to grow so his tolerance to therapies increases. I know E has hit the end of the road with his enteral feedings, but it still hurts when docs point it out.
His ped did discuss E's lungs and wants him to be on Pulmocort twice a day. It's a preventive neb treatment that hopefully should decrease the severity of his lung issues when he gets sick. We really don't want Eli to be on steroids if at all possible. They cause a lot of problems with mineral absorption, and E really doesn't need any more malabsoprtion issues. So, our grand total of daily meds is now up to 11 (all are between 2-6 times/day).
We also discussed Eli's evil pressure sore. I noticed a sore on Eli's backside on 2/16, but after talking to the ostomy nurse on the phone, they told me to treat it like a diaper rash. We have an extensive buttocks care plan, so we went back to our 6-step diaper changing process for 2-weeks. Well, the sore didn't heal. It is about the size of a dime, about 1/4 inch deep and right on Eli's coccyx.
We brought Eli into the hospital to be evaluated at the wound clinic on 2/27. They took one look at his bottom and said "poor little guy has a huge pressure sore". I was so upset, here I had been treating it like a rash and Eli continued to sit right on the sore for 10 days. We got a new plan of care for his backside, with attempt to keep the sore clean & protected (a near impossible task for a boy that has completely liquid stools 15-20 times a day). The nurse wanted Eli to stay off his backside at all times. Ha! Tell this to the boy that only lays on his back or sleeps in his swing (on his back). Well, we've been trying two different egg-crate mattresses and trying to encourage E to lay on his side. As of Friday (3/9) the sore hadn't gotten any better, but it wasn't any worse either.
Eli's ped wrote a referral to Gillette Children's for E to be evaluated for adaptive medical equipment. This was another hard thing for me to swallow. I know that E is behind, but it's hard to come to terms that your child needs more special medical equipment. We don't have an appointment yet, but hopefully will be in sometime early next month.
I think that's all the updates from the past 3-weeks. Now I can finally get to the good side....
The uphill climb-
Eli started to slow his stooling from 20/day down to 10-12/day over the weekend. I watched his output (we weigh every diaper) and started to work back up the calories in his formula. As of Tuesday, I got Eli to his highest formula tolerance, 30 ml/hr of 26 calorie Elecare. He is receiving 4.5 times the amount of calories he should need for his weight, so please pray this means E can gain some weight!
The best news of the week- Eli had great weight gain for 2-days now on his super-thick Elecare milkshake. He gained 78 grams Tuesday and 66 grams today. Eli's all-time highest weight today (3516 grams).....
7 lbs 12 oz
I swear our little guy got word that he was going to see his ol' pal the GI doc this afternoon. We made the appointment the first week in March when E was still doing so poorly on his feedings, and now he is a new boy. I'm so glad that I'm taking Eli in this week when he looks great, so I'm not anticipating any bad news at our appt.
The two things we were going to discuss is additional antimotiltiy agents (yeah, more drugs) to help w/ Eli's water absorption and more labwork. Eli has a lot of malabsorption (which we already know by his high calorie needs), so there was some discussion into doing a fecal study to determine more accurately exactly what he is absorbing. I'll try an update this evening if we have any major changes.
And now for the sweet stuff-