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.

cancelled cath

Maddie's heart cath was scheduled for this Friday but unfortunately, we've had to cancel it due to her having a little head cold. I know...sounds crazy. Our life has become so normal with her but in preparing for her 7th heart cath, we knew keeping her healthy was a priority. Easy to say, hard to do. I teach preschool, I have lectured those mother's enough and they are all very respectful of the "well-child policy" so we tried there. We tried limiting her going into grocery stores, public places, etc. but she still came down with a stinking cold. It's frustrating and times like these remind me that I am raising a child with a chronic illness. Her heart will never be fixed. Catching a simple cold then having a heart cath is not good- her risk for infection increases and the policy is to cancel. I'm grateful they always have Maddie in mind, her medical team is amazing.

As of now, her cath is rescheduled for Dec. 11th. Dr. Johnston is calling it an interventional cath as he's hoping to close her fenestration (hole created in her heart used as a pop-off for blood flow), as well as looking for & taking care of any collateral vessels as well as making sure her pulmonary arteries are wide-opened and growing well. After her Fontan, we knew she'd need to go back to the cath lab...just the timing was the question. After three open-heart surgeries and six heart catheterizations, we should be pros at this but it doesn't get easier. She knows she has to go back and when we've talked about it, she's anxious and tears up. I swear the older she gets, the harder this is.

She needs to have a good 2-3 week window of health- being clear of any illness. It feels impossible. We have four children, two of which attend public school. I teach 11 other children two days of week, preschool in our home. She takes ballet once a week. We spend lots of time with family and cousins. Can we just put her in a bubble and carry on with life? Bryan and I differ on how much we want to expose her...wished this was easier at times. What a balance it is between having her experience a normal life but compromising her health in achieving that goal. Prayers for keeping Miss Maddie healthy are always appreciated. Just want to get this cath over with. 28 days to go.

Miss Maddie's back...

Our Maddie is back after spending the last couple of weeks under the weather. For about a week and a half, we couldn't figure out what it was. She was really blue, had a lack of appetite, was so tired, and was a super needy girl. When she began running a fever with no other visible symptoms, I took her in. She had a thorough exam, a urine cath, Dr. Milnes started her on Tamiflu just as a precaution, and she also had blood work done which was pointing to something viral. But what? We were stumped, her sats were low, the fever kept hanging on and she just felt crappy. After 5 days of fever, it finally ceased and a rash covered her belly and back. Voila, it was Roseola! The boys both had this at around her age and I hadn't even tripped to her symptoms being this. I tend to panic and think it has to be something with her heart instead of focusing on the normal illnesses. She's now rash free and back to her normal self. Since we're still a little stumped to what's causing her increased blueness and low sats, we've bumped up her next cardiology appointment and head over to see Dr. Vernon in just a couple of weeks. In the meantime, we're happy to have the little girl back who loves to...

shake her little booty!!!

mystery rash

So Maddie and I took an ER visit late Saturday night to Wenatchee...she was admitted and observed in the hospital's peds wing until late yesterday afternoon. It's a mystery what is causing this rash/fever thingy that she's had off and on.

Remember the mosquito bites + hospital stay the first part of June? Well she's had 2 more bouts with this rash and each time she breaks out, she's itchy, feverish and then ends up with a virus of some sort. Metapnemovirus the first time, a stomach bug the second time and this time only a fever and loose diapers. We thought it was bites originally, now I know it's not. Tuesday morning she was covered with them, itching like crazy, and it's like her body gives us a little forewarning each time she's coming down with something OR she's allergic to something OR she's had this virus 3 times in a row OR it's chicken pox (which she's been immunized against and they're not quite pox like) OR some type of bug or spider, a "cantseeum", as I've been calling it keeps attacking her since another little creature wouldn't be capable of eating her up like this plus she sleeps about 6 feet from our bed OR ... IT'S A MYSTERY. Every doctor and nurse we've seen or talked to in the last month and half has a different take on it but they all agree that it's just weird.

So back to the ER visit, her fever was up to 104 (it had been low grade that day off and on and she hadn't had one yet with this breakout which began on Tuesday) and she was so irritable and fussy. I was thinking a bladder or kidney infection since she hadn't been peeing, or eating well, and the diaper I'd changed was pretty hot so I called Nephrology (her kidney docs) and they wanted her to get right in since she deals with the kidney reflux issue. She'd been off of her antibiotic for 3 days since at a doctor visit on Wednesday, Dr. Hourigan was thinking the Bacterim was causing the rash...like an allergic reaction. In the meantime, a new antibiotic was ordered for her kidney reflux, Nitrofurantoin, but did not get delivered to our local pharmacy by the weekend and wasn't shipped directly to us due to the heat wave we're having. Note: we live in the boondocks so her meds get shipped directly to us or to our little pharmacy here in town. So after waiting in the busy ER for an hour, she was taken back and amazingly, it only took 1 stick to get a peripheral arm vein and she was on her way for blood draws, IV fluids and a round of antibiotic. She was also cathed and urine was cultured since we were leaning towards a UTI, but the initial urine test came back fine and so were her labs. What?!?! So, Maddie is a mystery. This has not been contagious, we're all fine here at home (or immune to it) as well as the cousins and extended family we've been with here and there haven't had it either. It has really come and gone, lasts about 5-7 days then she's healthy and perky and then in the next week or so...it happens again. Could be coincidence or something we just haven't put our finger on yet.

As of now, the Infectious Disease Dept. at Children's is being informed of Maddie's mystery symptoms and hopefully we can get a consult with them at our appointments in Seattle this week. She's seeing the Nephrologist, Cardiologist, Ophtamologist, as well as has an echo and renal ultrasound scheduled, and I'm just praying that this gets resolved as something treatable! I'm sick of her "wearing it out" only to have it come right back again!

Maddie and the rest of us are officially on the mend. She is doing so much better, off of the oxygen since Sunday (she kept ripping it off of her face and her cheeks were paying the price for it!) and she's been maintaining her sats in the mid-70's. The cough is really the only part hanging on still. She's eating much better...but according to the dietitian at Children's, she isn't getting enough and her weight has just plateaued at 9 kilos (right at 20 lbs.) for the last few months. Their recommendation is to stop her formula and start giving her 2-3 Pediasure bottles a day since it's 30 cals/oz. Maddie's only been taking about 15-18 oz. of formula a day plus whatever additional milk or juice she gets in her sippy cup and meals and snacks. I've been trying different Pediasure flavors, diluting it with whole milk, etc. and she's just not liking it. Any ideas on how to get her to take this are surely welcomed as well as any ideas for boosting those calories!!! I wasn't really worried about it until our over-nighter last week at the hospital...those dietician's always get me in a twit! Thanks :)



Enjoying her favorite...homemade mac-n-cheese smothered with butter and cheese!

Home with O's

After monitoring Maddie for 24 hours at Children's, the consensus was she needs O's (she's on 1/2-1 liter of oxygen depending on her sats/coughing episodes/pucking) and just needs to have time to get over this bad virus. She did have a pretty good night last night and after a chest x-ray this morning, it was ruled out that this is affecting her lungs or heart. It's just a respiratory virus and leaves her hypoxic (looking blue, low sats, w/ harder time breathing). So the decision was left up to us: oxygen at home or stay in the hospital until she could come off it......so we're home. I did go back and forth on this but she kept pretty stable with the support of oxygen and is drinking and peeing enough for now. I don't feel so hot myself and I know we can all get well faster here at home without the risk of catching something else while in the hospital! Here's a few pictures of our girlie from this week.

We all looked/felt like this last night...a little tired maybe?!?

Here's the weird rash (and a little food she was saving for later I guess). This is after the hives/mosquito bites had tamed down. Her arm in the above picture is the aftermath of itching it sooo much- looks awful.

Thanks for checking on us and thinking of Miss Maddie. Please say extra prayers for a sweet little heart friend of ours, Lindsay. She's getting her angel heart tonight!

We're in the hospital...

After another trip to Seattle Children's this week (we came over here on Monday) Maddie was admitted this afternoon to the floor. She caught the yucky virus her big brothers have had and after labs were run Monday, it was determined that she has "Metapneumovirus" which is very similar to RSV. It affects the respiratory system, usually bronchial, and it typically just runs you down. She's had a fever off and on, very irritable and can't keep much down due to the horrible cough. We also learned it's common in warmer seasons. It really was hard on the boys so we were just waiting for little miss' turn since it was inevitable she'd get sick with two brothers hacking all over the place! They're feeling much better now after a full week of recoup.

We came back to the ER this morning after finding that her sats were in the mid-low 60's with dips in 50's with our pulse ox at home. She has typically been running around 78-80 lately, even on Monday when we were here, her sats looked great. She also woke up quite puffy, much more "blue" and pulling quite a bit when she was breathing. Luckily, she's hydrated (enough). They just want to keep an eye on her and watch what she's going to do in the next 24 hours or so...and we need to figure out what is causing her sats to be so low! Heart wise, she looked fine on Monday so it's really stumping us. She's not that congested, they suctioned her really well and hardly got any mucous out. So it's weird. Maddie's on oxygen and is still trying to pull of all of her leads and nasal cannula, so I see this as a good sign. On top of all of this, she also has a horrible rash which is a combo of old mosquito bites and hives. Yes, she does look quite lovely and if Iwasn't typing this on the hospital's computer, I'd post a picture. Sorry for no updates lately...we're going on 10 days of kids being sick, Maddie being the caboose and feeling so crummy. Poor little love.

Daniel

I got a very sad phone call that Daniel, a heart buddy, will be withdrawn from life-support this evening. I've mentioned Daniel in a few other posts...he's 2 days older than Maddie, has HLHS and they shared an ICU room their first week of life as well as after their first surgeries. They don't have a blog or carepage so we've kept in touch a little through email and when we've been over in Seattle for appointments. He had a heart transplant about a month ago and had a difficult time, he'd been on ECMO, came off of it, and he was just starting to rally. I visited with Leah (Joshua's mom) this afternoon and she said that Daniel and his parents had a great day together yesterday. Unfortunately, he coded this morning and too much damage was done, so he is on ECMO again until all of the family arrives to say their goodbyes. Please pray for his parents, Heather and Mark. Daniel never left the hospital due to his broken heart, but he will finally be HOME now... God bless you sweet boy, we won't ever forget you.

HEART CATH CANCELLED
Also, Maddie's cath has been cancelled...it was supposed to be tomorrow morning at 7:15 but she was warm and cranky after lunch time so I took her temp and low and behold, she's funning a fever of 102! Came on quick. So, it's now rescheduled for April 22nd. Her fever has come down with Tylenol but she's just not herself. It's best to wait and get everyone healthy before her procedure...we're sick of being sick around here! But it's nothing in comparison to what others are going through- our hearts go out to those families.

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!

Sissy's sick

The cold bug hit our house again...Maddie coming down with it first this time. She's been fighting this for 9 days and just didn't seem like she was turning the corner. Last Monday she looked fine at her drs. appt. for her Synagis shot but as the week progressed, she became more miserable and the symptoms got yuckier. After a couple of very fussy evenings, a low-grade fever, tugging at her ears and a lack of appetite, I took her into the Urgent Care Clinic to have her checked out yesterday(why is it that these things always worsen on weekends?) Luckily, we were the only ones in there. She had 1 ear that's infected as well as her eye, so she's now on amoxicillin for 10 days and eye drops. So that's the skinny on little sissy!

Battling bugs

These past couple of weeks have been rough...head colds, coughs, and the tale end to this bug was diarrhea! Cade was finally on the mend (after being sick for 2 weeks) when Maddie started running a low-grade fever yesterday. She'd had the cough but that was about it for her symptoms. After sleeping pretty much all day and refusing her bottles, I talked to the cardiologist on call and we put the NG tube back in to get her hydrated. It was either that or an ER visit since she had only taken 240 mls (8 oz.) all day. Putting the tube back in was torture for Maddie (and us) and she made sure to let us know by coughing, gagging, dry heaving and crying for most of the hour after it was placed. Poor girl...although we do love her feisty nature. Today she's been fine, no more fever or yucky diapers. Few! The plan is to take the NG out after she's back to eating better, so hopefully that shouldn't be too long. I'm just praying that we've got all of this out of our systems now! Winter's not even here yet and our family has been sick way too much! So much for my germ-a-phobe ways and being on house arrest...these viruses are still finding us! UGH!!!

Feeling so much better today...still cute as ever, even with all that tape and tubing! She also enjoys playing with the ports at the end of it, it's her new toy to explore and chew on!

Three babies!

The boys keep me hopping these days...here they are, after waking Maddie up from her nap, playing "baby" in her crib. She thought it was great though. Love the bed head too, oh wait, that's how Maddie's hair looks all of the time! We've been staying at home, Cade has been sick all week with a horrible cough and cold. I took him Wednesday to the doctors office and his chest x-ray was clear. His nebulizer treatments leave him WIRED but have helped. Maddie's been showing little symptoms here and there of it, hopefully she won't get it to the extent Cade has it. She's teething on top of this. Also wanted to announce that I'm officially done pumping now too!!! I quit on the 1st of November, said goodbye to my friend, the Medela Symphony Pump, and I have so much more time on my hands now...enough to change the look of the blog :) I was barely getting 1/2 of what she needed in a day so I slowly cut the number of times I pumped. It was a gradual process to lessen the pain! Almost 8 months of pumping was enough and we have frozen breast milk stored to last a while too, although she's been preferring the formula over the frozen milk. She's doing ok with her solids, it's hit and miss, and she's still very much a "snacker" with her bottles, only taking around 20 oz. a day, 3-4 oz. per feeding. I guess as long as she keeps gaining, I'm not going to stress about it! Wish I had her little appetite!!!

Bi-Directional Glenn Surgery Information

Here's some information on Maddie's surgery on Tuesday. She's having the Bi-Directional Glenn, 2nd stage in the repair for her heart. She is down the single ventricle path called the Fontan Procedure. Basically, at the end of the surgeries, she will function with only half of her heart, hence "single ventricle." At one point we had hope that Maddie would be a good candidate for the 1.5 ventricle repair, getting some usage out of her right ventricle and opening up the pulm. valve but since the cath, our team feels that she would not be able to sustain this type of repair. It was a let down since we always had hope that there would be some usage in her right side and not just let it "be" there. After the cardiologist explained that once we head down that path though, we can't turn back. We're much safer to do the Fontan for Maddie's future. He called the 1.5 repair the "circle of death" if it doesn't work and it looks like Maddie's would not work, a huge gamble if we tried it. She just doesn't have enough to work with there to do this type of repair. Bryan and I had always hoped for this because it eliminates that last surgery and if it was successful, her health and stamina would be better throughout life than with the Fontan. So it was disappointing to hear that it's no longer an option. But in the end, we want our baby girl to have the best possible chance and if things are bleak with that type of repair, we don't want to go down that avenue. We're very fortunate to have options and there are many kids and some adults who live today with the Fontan.

According to Maddie's surgeon, our risks have been cut significantly since making it to the Glenn. 25% of babies don't survive to the Glenn and now that number has been cut in half, post surgery and recovery after the Glenn. A big relief yet still scary at the same time. Here's the info. about the Glenn surgery. Really it's just replacing what she already has and cuts down the work load of her heart since it's not having to pump blood to the lungs now. Her O2 saturations (sats) should hang in the low 80's (healthy hearts are 99-100%) so she could still look blue but a big improvement from where her sats are now. Our dr. did say that babies typically really take off after having their Glenn since they don't feel so tired. They start eating better, growing and hitting those developmental milestones. What wonderful news to hear. My baby having some energy...amen!

The aim of this operation is:
• To maintain the flow of deoxygenated (blue) blood to the lungs by attaching the superior vena cava directly onto the pulmonary artery. This is called a cavo pulmonary shunt.
• The Gore-Tex shunt that was inserted in the operation for stage one may be removed.
This operation is necessary as the baby's heart will have grown but the Gore-Tex shunt will have remained the same size. The shunt will therefore no longer provide the baby with oxygen it needs. Since the cavo- pulmonary shunt is made from the baby's own tissue, it will grow with the rest of the heart. It is passive blood flow to the lungs, not pumped since the right side of the heart cannot function in this manner.
The baby will probably be in hospital for a shorter time than for the first operation as this operation is less complex than the first.
The final operation is called the 'Fontan Operation', which is often done at between two and four years of age.

In "Maddie News," she feels ok- still desatting throughout the day and still very tired. We do get some smiles but overall, she just isn't her happy self. When she desats, she gets a panicked look and starts really fussing, which doesn't help the matter. This worries me with her, although if I felt like I was suffocating, I probably would do the same. I've been so proud of her, she's a tough little thing, a true blessing. Here's one of her "looks" when she isn't feeling so hot. Still my pretty girl.

Discharged for now

Today was SUCH a long day. After much contemplation and talk with our team, we were discharged to the Ronald McDonald House. Yeah! A break from the hospital will do us some good until Tuesday. We have all of the monitors and oxygen we need here. Maddie has done well the last couple of days so I felt much better about leaving Children's until surgery day. So our day was very busy and tiring. The process started early this morning and we finally were able to leave at 7 pm! Crazy. We took care of a lot of the pre-op stuff so all that is left is labs on Monday. Met with Dr. McMullan, Maddie's surgeon same as her first surgery) and he went over everything then I signed those dreaded consent forms. He feels very positive about Maddie's heart responding well to the Glenn. What great news and encouragement to hear going into this. During our long wait today, Lisa and Ava came and visited us. They were here for Ava's appt. and dropped in real quick to say hi (plus we treated ourselves to a coffee and brownie!)

So we're here at the RMH, House A, until then. It is really nice here...what a wonderful facility for families. We're laying low though...avoiding contact with other people in order to keep Miss Maddie healthy and strong before surgery. Hers is scheduled as 2nd case on Tuesday (around 11am?) so we'll just bring Maddie over Tuesday morning for it. I'll post more later on the details of the Glenn. My mom came over to help me out while Bryan went home to take care of some things, so she's getting a crash coarse in Maddie's world! We've enjoyed our time together, a fun "girls trip" we're having!

We're here...early

Yes, Maddie's in the hospital. Yesterday after her refusal to eat, extreme sleepiness and her dusky look, I called her Cardiologist and the decision was made to get her over here. So Bryan and I drove over to Seattle to Children's ER. Her sats were 60 when we got here then hung in the upper 60's to low 70's. Maddie's color was very poor and she had a severe mood change- FUSSY! I've been lucky with my laid back baby girl, so this was a signal that things were not quite right. Over the last week she'd really tapered off of her eating and was having more low sat episodes. I'm thinking our last ER visit was the brink of what we're seeing now. So she's been fighting this off and on for 2 weeks.

Many tests were done last night (urine, blood, chest x-ray) that all came back fine. A culture was also grown to rule out any of the "5 bad viruses" and that also came back negative. She'd been sneezing and coughing but nothing has really manifested from it. Overall, little sis just doesn't feel well. So she's on 0.8 liters of oxygen with a nose cannula to help bring up her sats and that good ol' NG tube was put back for feeding after 6, yes 6, attempts (3 different nurses, even the "big dog") at getting an IV in her arms/legs failed to help get her hydrated. It was horrible to watch!!! I've never seen a baby cry harder and consoling did not work. We've now learned that Maddie has really crummy veins that blow every time they'd get the IV threaded in. We were admitted to the floor and the perk of our stay has been we're in isolation since she could be contagious with her teeny cough and sneezing. So we have our own room: G4001. I'm so happy about this part.

An echo has been scheduled for tomorrow morning and we are in the books for her cath on Tuesday morning. If she's not feeling well though, I don't think they'd do the cath. It could be a minor virus that's causing this or a heart problem. Hopefully the echo can show if it's heart related and the cath will be the best way to see what's going on. So we're playing the waiting game.

On another note, Maddie is 4 months old today! Not so fun spending her 4 mo. birthday in the hospital, poor baby. She's looking a little beat up too... She did gain pretty well, even with her sporadic feedings the last few days, she's up to 11 lbs. 10 oz. which 5 kilos is the minimum weight they like them for the Glenn and she's hit that. So if she has to have surgery sooner than we thought, I think she'll handle it fine. We just need to get her healthy and feeling good again. Keep our sweetie in your prayers. We'll keep you posted.

The ball is rolling...

After talking with our doctor in Seattle a few times this week, it was decided this afternoon that Maddie will have her Pre-Glenn Catheterization done next week. We had a cardiology appt. scheduled for next Wednesday but Dr. Seslar (and we) believes that Maddie's behavior and sats show that she's ready for her cath procedure and she's just telling us that surgery time is close. A cardiac catheterization procedure is done prior to surgery to help the doctors determine the best way to treat more complex conditions. The information gathered during the cath is used to figure out timing for surgery or to plan for the operation itself. In Maddie's case, the doctors will be able to clearly see her shunt and how it's functioning, as well as the rest of her heart. From this, the shunt may need some tweaking which would hopefully buy us some more time before surgery by bringing her sats up as well as her energy level, eating, and her color. They would do this with a balloon procedure in the cath lab. If no tweaking is necessary then she's clearly outgrown her shunt and ready for the Glenn. So scheduling will be calling first thing Monday morning with our date, time and details. Looks like the ball is rolling now!

Better Days

Just an update that Maddie is feeling much better. These last couple of days have been good. Her sats are running normal for her again and she's making progress with her appetite each day. Her symptoms are hardly visible! She's been discovering lots of new sounds that she can make...so close to giggling as well (with the help of tickling her under her chin). It's so fun watching her new tricks!

Feeling Yucky

Maddie has officially caught the bug that her big brother Caden has had. I'm thinking its a viral thing: fatigue, coughing, hoarseness, stuffy head (no drainage yet)and sneezing. Cade has ran a fever with it but Maddie hasn't shown this symptom yet. This explains her past few days of ups and downs. After talking with the doctor and the cardiac nurse, Karen, over the last couple of days, they are not concerned with Maddie's heart. She's running pretty low sats (68-74), she's much duskier in color, so I've been putting the blow-by oxygen on her which has helped them come up and be more stable. They commented that if she doesn't get over this within a week then we may need to get her over there. She had no appetite yesterday, which was scary and she was completely out of it. Today she's eating much better and she even likes some Pedialyte in her bottle. The thickness of her bottles is probably not the tastiest right now so this helps that out. My mom, mother-in-law, and sister-in-law helped out and took the boys yesterday and overnight so I could get some much needed sleep (when it was possible!)

I do think I'm going a bit delirious... I seriously thought the pulse oximeter screen was talking to me last night. My nerves and anxiety are completely shot. It's so hard watching our children when they're sick and even more difficult when your little one is already taxed! I worry about her heart function enough as it is and since this is her first time getting sick, I'm just on-edge of what to look out for. We do know she's a fighter and should whip this in a couple of days. So please keep our little Maddie in your prayers to beat this "summer complaint" bug.

Change of Plans (for now!)

Our instructions this morning were to call Children's and report to the cardiologist of our game plan for coming over there. Miss Maddie "got wind" of having a hospital stay...guess what, her sats are back up to her baseline (77) and she looks and acts fine, since being home from the ER. She did lose her midnight bottle, but vigorously ate her 3 am great and has tapered off again this morning on her feed. But after talking to the doctor this morning, we agree that we can do the monitoring we need here at home vs. being admitted to Children's for now. I'm very on top of it (poor Maddie) and the plan is to go over and be admitted if she starts having/staying at low sats again. So Maddie continues to call the shots around here...she has since her surprise entrance into the world!