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.  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.

Since Dr. Wolkoff would like Olivia to receive at least one more synagis dose, we have started the ball rolling on that.  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).  So Dr. Friedman had to send them a new predetermination letter and a letter stating why Olivia needed the shot.  Dr. Friedman was taking care of that and hopefully we’ll be all set.  Olivia is due for the shot this Thursday so I’m hoping we’ll be set up by then.

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.

She weighed in at 23 lbs, 5.8 oz (10.6 kg). Her oxygen sat was 81 before the shot and 85 – 86 after.

Arnie said she was SO cooperative with them. Held out each hand for the numbing cream for the blood draws). She was just wonderful.

So this is her last shot for the study. Olivia and I will go back in March for a followup appointment with Dr. Wolkoff. Arnie said they may recommend that she get a synagis shot outside the study next month depending on what the RSV situation is like here in CT.

Her right eardrum was “dusky” … this is the same ear that we had labelled an infection earlier this month.

Our fourth RSV prevention appointment was today.  We met with Lee Sullivan, as Renee Richard has moved to the ER department.Olivia weighed in at 23 lbs, 1.5 oz.  That is a 6.5oz gain from last month!  Her heart rate, blood pressure and respiratory rates were all excellent.  Her oxygen sats were in the mid 80’s.

Dr. Wolkoff examined her and is just thrilled at how well she’s doing. He said she’s very smart (naturally). She needed blood drawn and he was able to get it on the first stick. He did comment that her ears looked slightly infected but since it’s not bothering her, they won’t treat them.

We have one more appointment for shots at the Clinical Trials dept which will be next month, Feb 23 at 8AM. Then we’ll have a final appointment in April just to tie everything up.

We had our RSV prevention drug trial / shot / appointment this morning.  I’m doing this from memory as my notebook is in the car and it’s pouring outside.

We got there on time but had to drop off a urine specimin at the lab and nephrologist’s office for Maddie. She’s had some problems with blood in her urine and they *think* she has high amounts of calcium in her urine.  We got started with the appointment around 8:15AM.

First was weighing Miss O in. She is 22lbs even! Woohoo chunky monkey! Her oxygen sats were 84%, resp rate: 32 and her blood pressure was 104 / 87. (That bottom number is a bit high and I have a call into Renee to confirm that it was better after the shots were administered).

Dr. Lapuk (cardiology) came by and examined her.  He was pleased with how she is doing.  There was discussion as to whether or not to document Olivia’s bruise (head met corner of fridge door last night during tantrum) as an “adverse” something or other.  Renee described it as “typical toddler knows mommy just booked christmas photos bruise” – Amen to that 😉

Today it took TWO attempts to draw blood and Olivia was NOT too thrilled. She cried and cried. It didn’t hurt (she didn’t flinch when they stuck her) but it was upsetting to her because she doesn’t like being held down.

Of course as soon as we calm her down we have to get stuck again twice (Numax / synagis have to be administered via two shots once they get to a certain weight).

After Renee brought in a beautiful blue fleece blanket for Olivia. It has yellow duckies on it (to match her duckie pacifier).

Overall it was a great appointment and I’m sure Olivia is sleeping it off at Diana’s this afternoon

Arnie took Olivia to the marathon RSV prevention drug trial appointment on Monday, October 24.  Here’s how it went:

Arnie arrived around 2pm.  Before they did anything, Renee put a numbing cream on Olivia’s hand to help numb the area before the blood draw. Olivia spent a lot of time attempting to take off the tape but was unsucessful.  45 minutes or so were spent going over the consent form.  Arnie felt it could have gone quicker had Olivia been a bit less demanding but she’s 15 months so it’s to be expected.

Her exam showed that she weighed 21 lbs, 9 oz and her oxygen sats were 82%.  Although her lungs sounded quite clear, because she’s been nursing a cold for a week or longer, they chose to do an RSV test on her.  They sprayed saline in her nostrils and then sucked a bunch of junk out to be tested.  Olivia was not too pleased with that part of the appointment.  They noticed that Olivia’s right ear seemed a bit red, as if she had a minor ear infection.

After the RSV test came back negative, Renee was able to get the blood draw done on the first try! I believe that’s a first for Olivia who normally gets poked multiple times before they get a “good” vein.

She received both shots at the same time (one in each leg).  She cried for a minute and then was fine.  They kept an eye on her for a bit after to make sure she was fine before sending them on their way around 6pm!

I thought Arnie would be crabby for having been there all day but he said Renee and Dr. Wolkoff made it pleasant for both him and Olivia. Olivia got TWO new toys! A blue carebear that has a bell/rattle in it and a driving console toy. Both new right out of the box.

They both said she is HIGHLY intelligent because of her precociousness and her ability to do things most children her age couldn’t do. Renee had used her keys to open a cabinet in the room. Olivia reached for the keys so Renee gave them to her. Olivia walked right over to the cabinet and attempted to use the keys to open it! She also was using Renee’s photo album (attached to her keys) as if it were a phone – putting it up to her ear and saying “hi”.  They were also impressed that Olivia can maneuver her sippy cup into the holder on the side of the diaper bag.

All in all it went extremely well.

Renee called me today (10/26) to check on Olivia.  She again commented on how intelligent she was. She asked how Olivia did that night and since. I told her that Olivia had a rough night on Monday evening (for Olivia anyway).  She had a rough time going to bed and so we gave her some tylenol assuming her legs might be sore from the shots. Then Olivia woke up around 2AM and was super fussy. She normally sleeps straight through. It took a few sips of milk, a diaper change, a dose of tylenol and some cuddles and hugs from Mommy to get her back to sleep (with a blanket).

Our next appointment will be Tuesday, November 22 at 8AM.  This time I’ll get to take her 🙂

Another fall, another go around regarding RSV prevention.  While I don’t want to wish away Olivia’s toddlerhood, I look forward to the day when she’s old enough to not need these shots.

When we last covered this topic I was in the process of getting Dr. Friedman’s office involved in getting Olivia’s synagis.  I have spoken with both nurses, BC/BS of IL (insurance) and Professional Health Care (pharmacy providing the Synagis).  Long story short, Professional Home will not be shipping synagis until the last week of October. Hmm, if I can get the same (or better) drugs for free via CCMC for the same timeframe – I’d rather go with FREE.  Saving the insurance company approximately $10,000 in drug costs and myself about $1200.

I spoke with Renee Richard today. She’s the nurse in charge of the RSV drug trial at CCMC. She is getting her supply by October 19.  Arnie was already taking a half day on Monday, October 24 so we scheduled Olivia’s first appointment for that afternoon.  I’ll  be so relieved when we finally have the first dose in her.

Flu Shots

By Monday evening the entire Belfonti household (minus the cats) will have been given their flu shots.  Arnie and I have appointments at a local grocery store for Friday, October 14. And Olivia and Maddie are scheduled for Monday, October 17 at Dr. Friedman’s office.

Yesterday was Olivia’s appointment with the cardiologist.  We last saw her in June.

We drove up early because we wanted to stop in and meet a family that our cardiologist had “referred” to us.  Their daughter had her second heart surgery on Monday.

Since visiting hours aren’t until 10AM we had to do a bit of a song and dance to get into the ICU. We checked in at the front desk and told them we wanted to stop up to say hello to the nursing staff on the floor.  That got us in.

Oh how weird it is to be back at CCMC, especially on the 3rd floor where the PICU is located. Arnie said as soon as we stepped off the elevator he felt his heart jump and his pulse race.  Mine did as well.

We first stopped over at the nursing station and saw Jess (who used to be a night nurse), Kathy (who has been with us every single PICU visit from day 2 of Olivia’s life), Emily and Claire. They all oooh’ed and aaah’ed over Olivia who wasn’t too sure what was going on and kept her “serious” face on the entire time.  Then I asked them if Kim (mom to heart baby Noelle) was available.  She was and we got to peak in on Noelle. Oh, she’s just precious! And Kim was so nice! I wished I could have stayed and chatted but I knew we were pushing our luck and so we scampered out before getting thrown out.

Next was our appointment with Dr. Heller. Oh, how I LOVE this woman!  She was wearing the pin Laura (Lily’s mom) & I got her (three people holding hands with hearts on them).  Olivia looks GREAT. They did an EKG and it was perfect. Olivia didn’t fuss at ALL with all those stickers on her and wires.  Then they weighed her.  21 lbs, 2 oz! And she’s 29″ tall.  She gained 1 lb, 2 oz and grew 3/4″ since July!

Her heart and lungs all sounded great according to Dr. Heller.  She had a hard time getting an oxygen read on her but the machine wasn’t cooperating. Finally we got a read of 83% which is higher than the 80% she read back in June.

Dr. Heller did an echo on Olivia as well. Everything looked great and she noticed “mild regurgitation” from the valve which she said did not worry her.

I asked about the Fontan (3rd surgery) – she said we’re no where near ready to even think about that. She has to be over 30 lbs and she’s just doing great so it’s not even on the horizon.  Music to my ears!!!!

We don’t go back until MARCH of next year! That’s 5 months from now!  And so far out that they don’t have next year’s schedule yet.  I need to call and make the appointment next month.

Clinical Drug Trial (RSV prevention)
We had an appointment with Renee from Clinical Trials to go over the consent form for the Drug Trial for the RSV prevention drug.  That all fell through unfortunately, although it wasn’t for the reason I had expected.

There are two children in the PICU with RSV.  This is very early for RSV season. Normally they don’t start vaccinating until November. (However, Olivia’s first synagis shot was October 18 last year so the season started early last year as well)

The drug company can’t guarantee that they’re going to have the drug trials ready for the week of October 17.  Renee was concerned that Olivia needs to be vaccinated now and not in 2 more weeks (or more depending on how long it takes to get the drugs shipped and ready).

So Renee suggested we start the ball rolling with Dr. Friedman’s office to see if they can get us the shot earlier.  Renee said we’re perfect for the study, however her first priority is keeping Olivia (and all the kids) healthy and out of the PICU for the winter. She felt that was in Olivia’s best interest medically.  Olivia really took to Renee – climbing on her and hugging her. I’m disappointed that they won’t be seeing each other every month, but I completely understand and appreciate Renee’s concern for Olivia’s health which is the number 1 priority of everyone.

Synagis
So now we’re on the fun rollercoaster of getting the synagis shot approved for another year.  Arnie and I both talked to Dr. Friedman’s office yesterday. And today I spoke with Dr. Friedman’s office, the insurance company and Professional Home Care (who is the supplier of the Synagis).  At this point Professional Home needs to call our insurance company today and we might be able to get Olivia the Synagis as early as next week.

We’re hoping to be able to have the visiting nurse meet one of us at Diana’s (daycare).  It’s very close for either of us to get there and would save some time off from work.  I will have to check with the visiting nurse to make sure that works for them.

More teeth!
Olivia’s finally got all four molars in. She now has 12 teeth! 4 in front and two in back on the top and bottom.

Big girl at daycare

Earlier this week I went to pick up Olivia and was in for a shock.  Olivia had taken a nap with the big kids!  Diana has a bedroom dedicated to the baby’s nap room (has a crib and pack & play in it).  Olivia had been napping in there with Jenna.  However Diana has been having problems with Jenna screaming when she wakes up which then wakes up Olivia.  So Diana decided to try Olivia on the sleeping bag and she’s done exceptionally well! For the meantime Olivia’s using Maddie’s princess sleeping bag but I’ve ordered Olivia a “nap mat” from Lillian Vernon.

Feeding
Olivia is now demanding that she feed herself everything. We have to bring two spoons to the table – one for Olivia to feed herself and one for us to feed her. She’s growing up so fast!

Olivia’s One Year Checkup / Fever

Olivia’s one year checkup was on Monday, July 25.  She got 4 shots and was poked twice for iron level checks.

Olivia weighs 20 lbs and is 28.5″ long.  There was a question about her iron level.  They poked both girls at the same time and one came back low so they had to poke both of them again. But on the second reading Olivia’s was 16 which is GREAT.  Maddie’s was also within the normal levels the second time they poked her.

Olivia received her normal 12 month shots and also received one of the shots that a child normally gets at 16 months. This was done due to her aspleenia.

There was a discussion about whether or not Olivia needs synagis in the fall. Dr. F believed that since Olivia is so stable, maybe it wasn’t necessary. The idea didn’t go over well with me, so we agreed to talk with the cardiologist.  I emailed Dr. Heller who stated that Olivia needs to be protected from RSV this winter.  I am relieved.  Dr. Heller also mentioned that Dr. Lapuk (another cardiologist at CCMC) is going to be doing a study on a new anti-RSV treatment. We are interested in finding more about this study and it’s highly likely we’re going to participate in it.

Olivia ran a fever over the weekend and Dr. F discovered Olivia had a sore throat virus.  Olivia had another fever on Tuesday (100.2º) so I kept her home from daycare. She was very fussy which is unlike her. Thankfully she’s feeling MUCH better since then.