We took Olivia for her synagis / blood pressure appointment. Olivia weighs approximately 24 lbs (wearing onesie, pants and dry diaper).
Dr. Friedman has a pulse ox machine (to check oxygen sats). For some reason Olivia has decided this is the one thing she refuses to have done. Be it the finger clip or the “bandaid” or even just holding the sensors on the side of her foot. We tried for 15 minutes before calling a truce.Â I’m thinking we’re going to end up having to buy a machine just to get her used to it.
Blood pressure was very good. Dr. F thought it was 85/45 which is perfect.
After last week’s appointment, I emailed Dr. Heller regarding Olivia’s blood pressure reading and heart rate. Â Here’s my email to her:
Dr. Heller, I just wanted to update you on Olivia. She saw Dr. Wolkoff and Lee Sullivan for our last Clinical Trial visit today (post – study visit, no shot).
Olivia’s blood pressure was MUCH better at 102 / 53(?) so the enalapril is definitely doing it’s job. However, her heart rate was 132 which is 12 beats higher than her normal rate. She was coloring at the time they checked her heart rate and she is fighting a cold / cough. She lost a bit of weight since her last visit with them. If I compare the weight from her visit from you on 3/2 to today, she lost almost 8 oz (I’m not sure if she was weighed at your office dressed or undressed). Comparing the weight from our last clinical trial appointment on 2/23, she lost about 4 oz. She had a fever over the weekend and didn’t eat too much on Saturday, Sunday and Monday.
Should I be concerned about her heart rate increasing while her blood pressure dropped? And the weight loss – is that something to be concerned about?
Dr. Wolkoff recommended Olivia get one last synagis shot so Dr. Friedman and I are working together to get the ball rolling on that.
Thank you in advance for your response!
She responded this morning:
Hi Trish – Sorry for the delayed response. I was basking in the florida sun
I’m not too concerned about the HR. It has been in the 130’s on several recent visits with me – which is fine in an awake toddler. What are you basing her “normal” HR on? The HR varies so much from minute to minute in little kids – I wouldn’t rely on one or 2 isolated readings.
Enalapril shouldn’t affect HR, in any case. Did they have an easier time getting the BP than I did? That is an OK reading, but I’d like to see it even lower (if the reading was reliable). Ideally, the top # should be 70’s to 90’s. We have room to go up on the dose, if her BP trends are on the high side. Maybe we can check BP more frequently?
This can be done by visiting nurse, or quick doctor visits. Let me know your thoughts. How is her appetite now? We’ll have to keep an eye on her weight. I’ll be back in the office Monday.
Since Dr. Wolkoff would like Olivia to receive at least one more synagis dose, we have started the ball rolling on that. Â I had to call the insurance company last week to check on the status of October’s request (back when we thought we’d not make it into the drug trial). Â So Dr. Friedman had to send them a new predetermination letter and a letter stating why Olivia needed the shot. Â Dr. Friedman was taking care of that and hopefully we’ll be all set. Â Olivia is due for the shot this Thursday so I’m hoping we’ll be set up by then.
Olivia is 20 months old! Â She had a niceÂ day. We went to church where she played shy with Memere and Pepere. Â We did our typical grocery store run and then she took a VERY long nap. Â After we played downstairs before dinner. After dinner we all played “Cordoroy” which is a game Maddie & Arnie made up a few years ago. Â Olivia is a bit small to play so I carried her. Cordoroy consists of one person being “it” andÂ carrying cordoroy the bear and everyone else chasing after the person who is “it”. Â Picture muchÂ screaming and laughing.
We had our last drug trial appointment today.
Dr. Wolkoff was there along with Lee.
Olivia weighed in at 23 lbs, 3 oz which is down from last month. Odd. Her BP was much better (103/56) but her heart rate was up (132). Need to email Dr. Heller on that one. We couldn’t convince her to wear the oxygen lead, despite our best efforts of begging.
She showed off for Dr. Wolkoff – she was a MAJOR flirt with him. He said he could spend all day watching her play!
Again they commented at how advanced she is – that she’s as advanced as his 24 month old daughter.
He felt we should try and get one last synagis shot covered via insurance because they’re still seeing quite a few cases of it. So I’m working on that today in conjunction with Dr. Friedman. Fun, the insurance dance!
He commented that her left ear was light reflective(?) but red. The right ear was dull, slightly bulged and not red at all. He said if she starts another temp she’s got an ear infection but not to treat her unless that happens.
Olivia spiked a fever on Saturday afternoon. We were at a birthday party and I noticed she felt warm to me. I took her temp in her ear and it was 100.3Âº. Â We left the party and immediately called Dr. Friedman’s cell phone. Â She felt that since we noticed Olivia was sounding a bit croupy that morning, it was probably the start of an upper respiratory infection so we should hold off for now on going to the ER. That was fine with us. Â Olivia wasn’t eating too much on Saturday, Sunday or Monday but today she’s eating MUCH better.
Diana had a doctor appointment and was closed yesterday so Olivia spent the day with Auntie and Cole. Â Cole called me at one point and asked if they could keep Olivia. Olivia had a BALL at Auntie’s and was talking up a storm. Â “Juice auntie!” “Poopy auntie”. Â Her talking is really taking off! Â She even used a three word sentence with my parents over the weekend “Baby drink juice” in reference to feeding her baby some juice from her sippy cup.
She can also say the word “Ketchup”.
We have our last appointment with the clinical trial group on Thursday so I will update again after. Have a great week!
Olivia has added a few new songs to herÂ repertoire. Â She now can sing “Yo Ho Yo Ho” as in “a pirates life for me!” and she can carry the “Peanut Butter & Jelly” song. Â She’s got the tune down but most of the words are jumbled although you can make out “in my belly”. Â And finally … She can sing “Tubby Time” which is a song Arnie and I made up when Maddie was a little girl. It’s to the song “The Right Stuff” by New Kids on the BlockÂ “O-o-o-o-o Â o-o-o-o o-o-o-o o It’s Tubby Time”.
God has a new angel. Â On Friday evening, Aidan Stewart went back to God. Â Aidan battled liver cancer for almost two years. Â
Today we saw Dr. Heller for an appointment. Olivia was happy to show off of course! She weighed in at 23 lbs, 10 oz and was 31.5″ tall. Her oxygen levels were 81% and her EKG looked great. We couldn’t get her blood pressure reading but based on Arnie’s notes from last week’s RSV prevention appointment, it was a bit high. So we reviewed my notes from the past 5 months and realized that all the appointments showed a higher than “normal” reading.
Dr. Heller did an ultrasound. Everything looked great minus a bit of backflow in her valve so she decided to put her on enalapril which is a blood pressure med. She is on 1 ml 2 times a day.
Dr. Heller was pleased overall with Olivia’s growth and developmental progress. She gave us the green light to travel to Florida – we’ll be there from April 28 – May 6.
Our next appointment will be June 8 at 8AM.