RSV

 sweet girl still trying to smile in the ER last night

 

I had other posts in mind...like Maddie's 5th birthday party but instead ask for your prayers as she's caught RSV. After a 6 hour visit to Wenatchee's ER last night, we now know why Miss Maddie became so sick and so fast. Her symptoms only began a couple of days ago...runny nose, watery eyes and a cough which turned into a raging cough Friday. I had first attributed her light cold symptoms to the weather we've been having: so windy and cold but it was the onset of this nasty virus. The fever began Thursday evening and she hasn't had an appetite (which if you know Maddie, that's not her). We visited her Ped's office first thing Friday morning and after an exam, Dr. Milnes mentioned that he thought she looked ok, just for me to watch her closely, give her Tylenol for fever or pain and keep in touch. He figured it was just a virus but also mentioned that it could be RSV but didn't test her for it. Saturday morning came and she was spiraling down with a high fever, sleeping most of the day and overall just had a rough day. Her sats stayed in the 70s, her breathing was rapid and her color worried me...after calling on-call Ped & Cardiologist, it was recommended to get her in again to be looked at as well as to give her some oxygen support.

The ER doctor was great and after knowing her test came back positive, they were admitting us to the floor in an isolation room. I discussed the possibility of having oxygen here at home and whether he'd be ok with that as they'd just be giving her O2 support and monitoring her sats and heart rate if they kept her. He was very understanding, agreed with me that I could care for her at home with the exception that I call if anything changes and get her in ASAP. Our major concern now is if she develops a secondary infection and the hospital is the WORST place to be if we're trying to avoid germs and infections. So, we're home now and staying put as to not spread this nasty virus and allow her time to get over this. I've cancelled preschool for the week and have two wonderful Grandma's on duty for the times that I need to be out.

Currently, Maddie's watching cartoons, she's at 2 liters of O2 to just get her sats to her baseline of 85, otherwise she's hanging at 75%. It feels like we're pre-Fontan again. Ugh, I just hope she quickly kicks this and I'm praying she doesn't develop any secondary infection. I'm just hoping that the two years of spendy Synagis shots she had as a baby are still in her system and will help her kick this quickly. Wishful thinking, I know.

It hit me as I was driving her to Wenatchee that she's not a "typical" 5 year old and she never will be normal...when she gets sick, her heart and body are taxed so much more than a healthy child her age. Reality hit me yesterday.

H1N1 Vaccine

Yesterday Maddie was able to get her swine flu shot! Phew. Our family doc, Dr. Allred (uncle), called and only recieved 10 shots for his clinic...Maddie was lucky to recieve one being she's in the high-risk category and in 30 days will recieve the rest of the dose. The boys were also able to get the H1N1 flu-mist so a big SIGH of relief for us, hopefully we're covered now! We've had our Flu shots, H1N1, and Miss Maddie now waits for her VERY EXPENSIVE, monthly, super ouchie, 2 pokes each time Synagis shots regime to begin. Poor thing.

doctor's appointments=tears

Maddie with our nurse Amanda from Dr. Allred's office. She's always in tears around Amanda which about puts poor Amanda in tears too! She's been our nurse for all 3 kids since birth; every shot, temperature, and measurement has been taken by her. She's the sweetest!

We've spent a lot of time in doctors offices this week with a fussy girl. It's Maddie's least favorite place to be. Tuesday was Maddie's nephrology appointment in Seattle to follow-up on her kidney issues. She had a renal ultrasound and visit with Dr. Jackson and Dr. Hingorani, and thanks to a glitch in scheduling our "big plans" to shop didn't work out due to spending most of our day at Children's. Kidney wise, her left one showed some growth and is now in the range of being "somewhat" normal, which was great news. On ultrasound, they can't really tell the function but due to that it grew, they think it must be working. She is still being treated for reflux with the Bacterim and they don't have any plans of taking her off of that until she's at least 2 years old due to the risk of infection from UTI's and being a cardiac kid. It was a big relief to know that her kidney's look good and the ureters have improved on ultrasound. Yeah!!! She was in tears throughout the entire ultrasound but flirted with Dr. Jackson at the end of the appointment, after she realized there was no "hurt" involved, it was cute.

For the past month, her cardiologist and I have been in touch regarding Maddie's sats. They have been on the low end, consistently hanging anywhere between 76-82. Her sats have never been very high, even after her Glenn, so Maddie has a maintenance heart catheterization coming up in 2 weeks. If you're not familiar with what a cath is, you can read about it here. Dr. Vernon wants to rule out whether she needs a little "tune-up" with ballooning or a possible stent if there is narrowing or scarring from her surgeries. Maddie's pulmonary arteries have always been small and narrow, so they may need tweeking to get those sats up and more blood flow through them. We need them to grow! Of course I don't want to have her go through this, there is always risk with a cath and she'll have to be put under and intubated. She's doing so well and I don't want anything to jeopardize this! But it will be nice to see what's going on in that heart of hers since this is the most accurate way of diagnosis. We may learn that everything is just fine and her sats are just going to hang on the lower end. So, that's where we're at with her heart.

Last but not least, Maddie ran a fever all day yesterday. She also had to go in for her Synagis shots to Dr. Allred's. To rule out whether this was a UTI or not, she also ended up having her bladder cathed to get a good urine sample. It went smooth, came back fine, and she received her 2 shots, which btw, totals $3984.30 a month on our insurance EOB's!!! We get to pay $864.48 of that...yikes, we'll meet our deductible early this year due to those costly shots! (Had to share the real price since back in a December post I estimated the cost). It has kept her healthy from RSV though...especially since so many little ones in our town have had it this winter! The boys were with us as well and Cade also got some attention from Dr. Allred since he's had such a bad cough and refuses to eat lately. Of course, it's a viral thing so we're riding out all of the bugs we've acquired lately and hoping Maddie can beat this too before her heart cath procedure in 2 weeks. So two days in the doctor's offices at 3 hours each was enough for Miss Maddie and the rest of us! She knows what is up now and just cries from the minute we get there... she's still running a fever, is not herself and only wants held, so I had time to post, and one-handed at that!

Sky-high Synagis

Maddie started her Synagis series yesterday. We drove to Ephrata to Dr. Allred's for the appt. and the minute I laid her on the exam table paper, she started crying. Pretty much the entire time we were there, she fussed. Amanda, her nurse, is quite the "bad guy" in Maddie's eyes! It took 2 pokes, one in each thigh since she got a dose of 1.6 ml and her legs are a little too puny to handle that much vaccine in one spot. Her shots are shipped from Central Washington Home Infusion up in Wenatchee to Dr. Allred's office and she'll have her Synagis shot every 28-30 days until the end of April. Our insurance company covers the shot from Nov-Apr but the state of Washington didn't consider us in RSV season until December 1st. The shocking part of this is that it is $1350/50 ml = $4050 for Maddie's shot EVERY MONTH!!! How ridiculous is that!?! I'll be anxious to see what the EOB says and if its price reflects what the home infusion company says it is. Luckily we've met our deductable but starting in January, we're going to have a costly co-pay until we meet our deductible again. We'll do anything though to keep this lil' girl healthy and RSV could be life-threatening if she caught it. We also weighed her while there and the little stinker weighs 16 lbs. 14 oz.!!! She's up 8 oz. in 16 days. That's a great gain for her and needless to say, I'm ecstatic about it!

Shots, shots and more shots

Today Maddie had her 6 month well-child exam and immunizations. She's a month off... I was worried about her weight gain because she's been such a turkey about eating lately! We never reach the volume that the dietician wants her at and she's just been such a snacker. Bad habit...Shockingly, she weighed 15 lbs. 12.5 oz! I even had the nurse re-weigh her because I was in disbelief. So in 30 days, she gained 25 ounces!!! Wow, I know! That's well over the 1/2 oz. a day goal! Eating some solids has really paid off I guess. As for the immunizations, she got a half dose of her flu shot (the boys got theirs too and now we're all taken care of) as well as her DTAP and HIB. In a month we'll go back for the other flu shot as well as a couple of more immunizations. Then she'll be caught up until she's a year old. Starting in November through April, she'll get her Synagis series. This immunization is to help prevent RSV and she'll have the Synagis shot every 30 days. The cost of each shot is, get ready, $1600!!! It's only allocated for "high risk" kids and being a cardiac kid qualifies her for them. Luckily, our insurance will cover the cost. Lots of pokes for our sweet girl. But it will all be worth it if this can help keep her healthy this winter!