Thursday, September 30, 2010

Heart Cath in 1 Week


Yesterday afternoon was the kind of afternoon I want forever etched in my memory.  It was a beautiful day…temperature in the high 80s, sunny, green grass, with blue sky.  Matthew and I sat outside while we waited on Darren, Alyssa and Jackson to return from work/school.  As we were sitting in the grass, shaded by a big bush, the birds were chirping and flying overhead which made Matthew squeal with delight in between grinning his big, ear to ear, dimpled grin. I close my eyes now, trying to picture it in my mind.  I don’t ever want to forget that moment. 
I learned an important lesson yesterday when I called cardio hoping to get more detail about the date of the procedure.  The nurse I usually deal with was out, so another nursed asked “can I help you?”  When I explained that Matthew was scheduled for a PDA fix on Oct 20 but they were trying to get him in next week, she proceeded to tell me that Matthew isn’t on the schedule until November.  I almost blew a gasket.  So, I learned the important lesson to only talk to the person who I know has the answers. Everyone else is just guessing and confuses/frustrates the situation. 
This morning the cardio-nurse-in-the- know called and we are on for Matthew's heart catheterization on October 7!  While we wait, Matthew seems to be doing pretty well on the heart meds.  His coloring looks good, his appetite is slightly improved, and he seems happier still.  It is hard to watch him eat seeing/knowing how hard it is for him and his big heart but we are counting the days until it is improved.  Hopefully one week from today!  Unfortunately, Matthew is still hanging on to this cold/virus, which he’s had for 2 weeks.   We pray --Oh please, oh please let him be well enough for the procedure next week!  Thank you for the continued prayers for sweet baby Matthew!!

Tuesday, September 28, 2010

Surgeries Scheduled


Last night, I spoke to our original cardiologist (Dr L), who doesn’t think Matthew’s throwing up is a result of the heart meds so we started up the meds again yesterday.  So far, so good.  No vomit and Matthew seems better than he has been in weeks. 
Dr L said the on call cardiologist from the weekend had called TCH to discuss Matthew’s case and heard that Matthew was scheduled for cath on Oct 7. My response to this news: “Really?!?!”  I called and left a message to find out if this was misinformation or (hopefully) true.  I received a message back at noon today, and it is (hopefully) true.  The scheduler is looking for a room (OR?) for October 7 (or earlier) and will get back to us with all the details when it is confirmed.  Wo-hoo!!  Prayers are answered!
Today was our second cranialfacial appointment.  For info from our first appointment, click here.  The surgeon (Dr T) showed me Matthew’s CT scans, and no surprise, Matthew’s metopic suture is closed tight. All other sutures are open, which is good news.  This skull surgery is not urgent, but it is optimal timing now.  Dr T wants to wait a few weeks between the heart cath and the cranialfacial/neurosurgery to allow Matthew to heal so they are looking to fix Matthew’s head in early November.  Dr T’s scheduler will call me this week with a firm date and then we will schedule a multitude of pre-operative appointments (neurosurgery, anesthesiology, helmet, pre-op pictures, etc). 
So, it sounds like Matthew is moving toward his much needed surgeries for his heart and then head in the next 6 weeks or so.  These are surgeries we wish Matthew didn’t need, but because he does, we are thankful they are soon.  We are excited and scared at the same time.  Thank you for the continued prayers for our sweet baby Matthew and for his skilled surgeons. 

Monday, September 27, 2010

Happy 7 Months!


What a roller coaster the last 7 months have been, full of surprises.  Matthew isn’t doing everything a typical 7 month old would be doing (sitting/crawling) but he’s unique and will get there in his own time.  My biggest worry 7 months ago was that Matthew would never be able to show joy and thankfully that worry was for naught.  Throughout everything he has endured and is enduring, Matthew is a sweet and happy baby.
Matthew 7 months
This weekend, I spoke to the on call cardiologist to discuss Matthew’s medicines.  He was originally prescribed 2 meds, 2 times a day but he was only taking one of them once a day because we only needed to manage his symptoms of congestive heart failure for a week and a half (between diagnosis and the 1st scheduled heart catheterization). Now we have to manage the symptoms for almost another month.  So, we have moved to the original prescription of 2 meds, 2 times a day balancing the needs of his heart with the function of his one kidney.  We are to watch out for vomit, which would indicate that Matthew’s kidney is not properly filtering one of the meds. 
Yesterday, a day after starting the two meds, we noticed an improvement in Matthew.  He was eating more, he seemed happier, and he had better coloring.  We were encouraged.  And then he threw up…twice.  Of course!  Matthew’s road is never straight and narrow.  It is not the easy one.  Now we’ve got a call into the cardiologist again to determine our next steps. We appreciate the continued prayers for sweet baby Matthew! 

Saturday, September 25, 2010

Juggling


I feel like we are juggling.  I’m calm and relaxed when I don’t realize how many balls are in the air, but as soon as I realize just how many balls there are or another ball falls from the ceiling, I start to lose my composure. 
We are managing Matthew’s congestive heart failure with meds until we can get in for the heart catheterization to fix his PDA.  We are managing his reflux with meds.  And we have to weigh the benefits of all of these meds versus the risks to his one kidney.   So many balls to juggle.
We will discuss the skull surgery with our cranialfacial surgeon on Tuesday.  If he believes Matthew needs the craniosynostosis surgery and therefore the PDA fix earlier than Oct 20, hopefully he’ll have the pull to get it done.   Crossing my fingers.
Matthew still can’t seem to kick this cough/congestion, which is making his breathing more labored and causes his big heart to beat faster.  He’ll be more susceptible to illness as long as he’s got the PDA (and fluid in his lungs) but we can’t fix the PDA until he’s over all the illness.   Catch-22.
We have moments of despair, not knowing when or if we’ll turn the corner, when life will get less difficult.  But then Matthew shoots that ear to ear, dimpled grin, showing off his two new teeth and all 4 of us melt.  And tonight he actually seems a bit more active and feeling better!  Hope grows in our hearts. 

Thursday, September 23, 2010

No Cath Today


Matthew and I journeyed to TCH this morning when the moon was still high in the sky.  After several hours of assessment, the doctors determined that today would not be the day to fix Matthew’s heart.  The risk of bad outcomes from the anesthesia mixed w/the tail end of Matthew’s cold was way too great, outweighing Matthew’s congestive heart failure and need to fix the craniosynostosis.  It was not a quick or easy decision for the doctors, but they felt it was in Matthew’s best interest overall to not proceed today.  We are grateful for the doctors’ prudence, though admit we are disappointed Matthew isn’t well enough for the procedure. 
I have to believe this is all part of the bigger plan for Matthew, but it was extremely hard knowing that we have to wait almost a month to reschedule.  Another month of Matthew enduring the symptoms of CHF.  Another month plus before skull surgery.  Another month plus of rapid brain growth with a skull not ready for it.  Another month of poor eating.  Another month of worry.
The new heart catheterization date is tentatively October 20. Right now, this doesn’t seem optimal, but we have to keep believing that it is all part of the grander plan for our sweet baby Matthew.   Thank you for the continued prayers for Matthew and for us. 

Tuesday, September 21, 2010

What I'm Lovin'


Since Matthew has been on house arrest since Thursday of last week, I’ve had lots of time to concentrate on just Matthew.  I’m lovin’…
-the way he clasps his hands together.
-that since he can roll over, he will no longer participate in ‘tummy time’.  I just put him on his stomach and he’ll be on his back again before I can count to 5.
-that I can make him laugh by squeezing his puggy thighs.
-how he’ll rake anything that comes near his mouth past his two sharp, very white baby teeth.
-his crooked smile when I pretend to suck on his pacifier as if to say “silly mommy”.
-the way he wraps his arm around my shoulder when I carry him.
-that I can entertain him just by clapping my hands.
-watching Alyssa and Jackson play with him.
-those big dimples when he smiles all of those sweet baby smiles.
video

Heart Cath Thursday


Just got a call from the Cath Lab nurse…we are on for Thursday.  They will assess him when we get down there Thursday morning for the final determination but right now it sounds like it will happen.  Thank you for the continued prayers for sweet baby Matthew. 

Monday, September 20, 2010

Que Sera, Sera


I called the Cath Lab nurse this morning to give an update on Matthew… who has been fever free for 48 hours but still has congestion.  The nurse will talk to the cardiologist and they will determine whether Matthew will have the heart catheterization this Thursday or in 3 weeks.  I am anxiously waiting by the phone, but keep reminding myself that we have to trust that whatever the decision, it is part of God’s greater plan for Matthew and for us. Whatever will be, will be.

Sunday, September 19, 2010

Not the Meds


4 out of the 5 of us at the Hoy House have come down with Matthew’s ailment.  Jackson is the only one seemingly unaffected by this bug.  We can now definitively say it is not the meds.   
The good news is that Matthew’s been fever free for 24 hours & his demeanor has vastly improved, he’s even smiling and ‘talking’.  His cough and congestion linger on and we don’t know what that means for the Heart Cath.  I just keep repeating…whatever happens is meant to be, it is part of the bigger plan!

Saturday, September 18, 2010

Good News- TSRH


We got great news in the mail today!  Matthew was accepted as a patient at the Texas Scottish Rite Hospital in Dallas.  TSRH is a premier orthopedic hospital and I found their information when I did my research for best places for thumb pollicization (moving the index finger to a thumb position).  Unfortunately, the appointment for initial hand consultation is mid-October.  Hands are at the bottom of the surgery priority list, so we’ll reschedule if necessary. 
This news is a ray of hope and light.  It is nice to think about something other than the immediate, about something positive that will improve Matthew’s life in the long term. 
We are thankful for our friends, the Kleinfelders, who helped us with the signature needed for our application and to our pediatrician for his referral to TSRH! And of course, TSRH for accepting him!

Fever Free


Yesterday was a rough day for Matthew, fighting whatever ailment he’s fighting (a cold?).  Poor kid…not only is he breathing heavier because of his big heart, he’s congested and having a harder time breathing.  His fever continued through the day, hitting 103 mid-day.  He’s been miserable and making sure everyone around him knows it. 
We did go ahead with Matthew’s 3rd dose of diuretic.  But first I called renal to make sure we could give him a fever reducer with the diuretic.  Because they don’t want to tax his one kidney, absolutely no Motrin with the diuretic and only Tylenol up to 4 times a day.

Yesterday, we also visited the GI for our follow up from a few weeks ago.  Now, knowing about Matthew’s CHF, he recommended feeding Matthew less volume, more frequently with higher caloric concentration (27 calories/ounce instead of our previous 24). We’ll adjust again after the PDA fix.
Last night, we became hopeful that Matthew’s ailment is on its way out while I began to feel like I might have caught it.  His nose stopped running and he actually slept while my throat started hurting.  At first, we thought “Oh no! Mommy can’t go down!” and then I realized that if I get what Matthew has, my body will create antibodies that will end up in Matthew’s milk.  Maybe that will put him on the road to recovery earlier! 
This morning, Matthew woke up ultra congested, but fever free.  We pray he’ll be well enough for the heart catheterization on Thursday.  I called the Cath Lab yesterday to find out our options.  If Matthew’s still not 100% on Monday, the cardiologist will make the call whether to reschedule.  If we have to reschedule, the first opening is the 3rd week of October.  Not ideal since that will further push the skull surgery but it is what it is.  We have to trust it is all part of God’s bigger plan for Matthew and for us. 

Friday, September 17, 2010

Diuretic + Fever Day 2


Matthew got his second dose of diuretic yesterday at 3:30p.  He wasn’t running a fever at that time but he was still within 4 hours of his previous dose of Tylenol.  By 5:30p his fever was 100.5, and by 6:30p it was 101.3. He got another dose of Tylenol and his temperature dropped to a low of 100.7.  He spent the afternoon and evening fussy, screaming or asleep. 
We have been cautious to use Motrin (although it has always worked better for fevers on our kids) because it is harder on Matthew’s one kidney, which we are already taxing with the diuretic.  But when we awoke to Matthew screaming at 1am, again at 2am and then at 2:45am, we knew it was time to try it.  Thankfully Motrin did the trick.  Matthew’s fever broke and he fell asleep for a beautiful 4 hours. Since waking, Matthew has been a little lower key than usual, but he’s not crying.  A big improvement from yesterday! 
We still don’t know if Matthew has an illness (all tests point to negative so far) or if this is a reaction to the meds.  Whichever it is, we need him to be fever, cough and congestion free at 6am on Monday morning otherwise we’ll have to reschedule the heart catheterization.  I’m sure everyone knows how much we don’t want that to happen.  Thank you for continued prayers for our sweet baby Matthew!

Thursday, September 16, 2010

More Tests


Again, we don’t know what is going on w/Matthew.  We spent another hour and a half at the pediatrician’s office today.  What we know or tested for…
-Lasix (the diuretic) can cause fever in infants.  It is a known side effect but our original cardiologist has only seen it happen when given by IV.
- We checked for…
       flu—negative
       RSV-- results tomorrow
       blood counts-- normal
       chest xray—some fluid in lungs, but no pneumonia
       pulse oxygen levels-- normal
So we don’t know a lot more than when we started today, but hopefully Matthew will rebound soon.  On one hand, we hope it is a side effect of the meds.  This would give us a fix (stop giving him the med) although he won’t get relief until they fix the PDA next week.   If he’s sick, we might have to postpone the heart catheterization, which would postpone the head surgery further. Not something we want to do.
 I just gave Matthew his 2nd dose of diuretic so we’ll see how he does with it.  Matthew still has a lot of congestion and coughing as well as the inconsolable crying.  We’ll continue to watch him closely. 
I’ve been frayed since Tuesday.  Besides the crazy day at TCH on Tuesday, I made 7 calls to doctor’s offices yesterday.  Then at every turn we’ve been reminded that not many infants have congestive heart failure.  Multiple pharmacies do not carry the liquid diuretic.  The nurse looked shocked when I told her about Matthew’s CHF and issues.  The pediatrician admitted he didn’t know the diuretic could cause fevers in infants because it is so rare for him to see an infant on them.  We are not experiencing the normal.
As I sat there during today’s blood draw, I mourned.  I miss the days when we went to the doctor for ear infections.  But just as quickly as my nerves frayed, I feel like I have regained my composure.   The mourning is over. We have an amazing baby…who is fighting everything that is thrown his way.  We are his biggest advocates!  We have amazing friends and family who have supported us all along the crazy way, for 6+ months. 
And although I may not have known much about physiology, anatomy, genetics, or medicine six months ago, I sure do now!  In fact, I’ve learned so much it has literally filled a book. 
Matthew's Notebook-Volume 1- Birth-6m
We’ll continue to update the blog with new developments.  Thank you for your continued prayers for Matthew’s comfort and our strength. 

Diuretic + Fever


We gave Matthew the diuretic last night and an hour later he spiked and maintained a fever of 101.  Since then, unless he’s asleep, he’s crying or screaming inconsolably.  It could be (a) a reaction to the diuretic, (b) a coincidental cold bug that Alyssa has had the last 2 weeks or (c) unknown something else.  We have an appointment with the pediatrician this morning so hopefully we’ll know more soon.  Our poor, sweet baby.  Please pray for his relief! 

Wednesday, September 15, 2010

Dysmorphic


I was reading over the urologist's shoulder two weeks ago, looking at Matthew’s file, and saw “patient has dysmorphic facial features indicative of genetic disorder.”  I know this is medical speak, but it was heartbreaking to see in print. When I look at Matthew, I see my sweet baby.  I no longer see his differences.  I don’t see his hands with no thumbs, I see his sweet little fingers that rub my arm as he eats.  I see his cute dimples and that huge grin.  I see the beautiful blue eyes and long eyelashes. I see his cute, little unique ears.  I’ve stopped noticing that he’s different, but seeing this doctor’s comment in print was a harsh reminder that others will see Matthew as different.  I pray that the world will see beyond his differences and see him as the unique, amazing kid that he is.  
Matthew 6 months

Tuesday, September 14, 2010

Crazy Day at TCH


I was as frustrated today as I was relieved yesterday.  This morning Matthew had his appointment with nephrology.  After fighting rush hour traffic to make it to the medical center, we had to wait about an hour for our appointment.  Thankfully the nephrologist (Dr F) is a great guy and I didn’t mind waiting for him (too much anyway).  We talked through all of the developments since I saw him last (when Matthew was 6 days old).  Whew…we had a LOT to talk about.  Dr F thinks Matthew’s one kidney is in great shape and his function looks good too.  (Good news!) His biggest concern for his kidney is – the PDA !  “Fixing the PDA will be the best thing we can do for his kidney right now.” He agreed with our cardiologist that Matthew’s symptoms should subside with the PDA fix.  And thankfully, our nephrologist has some pull!  Dr F called over to TCH cardiology and we were worked in this afternoon. Which meant another couple of hours of waiting, but the ball was moving. 

We had a 3:00p cranialfacial appointment which I had to cancel since we were still waiting to be seen by cardio at 2:45p.  I don’t know why calling to cancel the appointment set me off, but tears started streaming down my face when I spoke to the receptionist.  I was annoyed that we were seeing yet another cardiologist, not a cardiac surgeon. I was tired after waking at 5am w/Mattie and not being able to turn my brain off. I was sick of waiting. I needed to pump.  I needed to eat.  And Matthew had all he could take of me holding him or him sitting in his car seat so he was fidgety and mad.  It was not my finest moment.   

Not 2 minutes after I hung up, we were called back and I had to go through Matthew’s entire history again w/this TCH cardiologist.  I completely lost it when he tried to tell me Matthew’s issues could be allergies or asthma.  I was not very nice in saying “I KNOW what Matthew has...he has a PDA that is flooding his lungs and causing his heart to pump harder and get enlarged. We saw it in the ECHO he had done YESTERDAY!” I think the TCH cardiologist finally got my point and figured it would be easier to punt us over to the Cath Lab and let them deal with the crazy mommy. 

Thankfully the sweet Cath Lab nurse came over to explain to me how they will fix Matthew’s PDA and I calmed down immediately.  This is what I needed, for us to be talking about the fix.  The nurse had the visual aids and went into great detail about what they will do and what we should expect.  We talked about schedule and the first big opening they had in the Cath Lab was in mid October.  I felt anxious as I told her ‘No. No.  Matthew needs other surgeries, and heart trumps head but head needs surgery soon!’  Thankfully the sweet nurse understood and worked magic.  Matthew is scheduled for heart catheterization to fix his PDA on Thursday, Sept 23.
 
It’s a day procedure (but I’ll pack a bag), only about a 2 hour event.  Basically, the catheter will be inserted through the groin up to the heart and a small, coil-like device will be inserted to close off the PDA.  For a more detailed explanation, click here.  I met the cardiologist (Dr P) who will perform the catheterization.  Dr P was delightful.  He wanted to hear Matthew’s history, which is the 3rd time today I had to give it, but he was apologetic and nice when he asked.  Thankfully he agreed with our original cardiologist, that it sounded like the PDA is causing Matthew’s symptoms and this will fix it…he could fix it! 

So, today didn’t go quite as planned, but it ended well.  We are scheduled to fix his heart!  We’ll reschedule the appointment w/the cranialfacial surgeon and hope we can get that surgery scheduled shortly after the heart cath. 

Now, it is time to take a breath and relax.  It’s been quite the roller coaster the last few weeks.   Thank you for the continued prayers and positive thoughts!

Monday, September 13, 2010

Mattie's Big Heart


What is causing all of Matthew’s seemingly random symptoms lately? Our cardiologist believes he knows the answer!  Matthew has a moderate to large ‘patent ductus arteriosus’ (PDA).  His pulmonary artery never disconnected from his aorta, as it should have after birth.  This heart defect has caused his heart to work overtime sending lots of blood to his lungs and back again, causing his heart to enlarge. As well, it is flooding Matthew's lungs with fluid making it more difficult to breathe & eat and it is starting to fill his other organs with fluid.  Though seeing the words ‘congestive heart failure’ is scary…it is okay!  We have an answer, and it’s fixable!

In the short term, if nephrology signs off, Matthew will start diuretics to ease the fluid retention and a calcium supplement to help strengthen his heart.  This should give him immediate relief.  Then he will need to undergo a procedure to close the PDA.  For this, our cardiologist has referred us to TCH cardiology.  We had already scheduled an appointment with them for Oct 11, but we pray that we will be seen earlier than that. 

Heart trumps head, so we most likely need to get this PDA fixed before we can schedule the cranialfacial surgery.  We have appointments tomorrow with nephrology and cranialfacial, so we’ll know more then.

On a side note from the cardiology appointment, Matthew’s ASD has all but closed up and is now in the ‘normal’ range for his age and his functional bicuspid valve is still working perfectly.

Thank you for the continued prayers for our sweet baby Matthew!

Ready for the Week


Thankfully we had a busy and fun weekend.  It kept our minds off Matthew’s poor eating and our nervousness about what the underlying issue is and the upcoming appointments this week. 
Cake by Tiffany
Saturday we hosted a small get together for a friend from high school.  He just returned from service in Iraq and it was great to see him and several of our friends we’ve known for 20+ years now.   It was great to be busy, to celebrate and to think about someone/something else.

It was yummy!
Sunday we had lunch at the Denks (Darren’s folks), where Alyssa and Jackson had a grand time playing dress up and running around.  Sunday afternoon, we went over to friends’ house to watch football.  It was delightful to spend time with friends and distracted from our current concerns. 


Matthew has blessed us this weekend by sleeping through the night both nights.  This is fantastic, given the last few weeks (before this weekend) he’s been waking upwards of 5 times a night.  The sick irony is although I’ve been exhausted, if I’m woken in the middle of the night, I can’t get my brain to turn off.  So with the additional sleep, I’m rested and ready to take on the week and anything that comes our way. 

Right now, we are just nervous.  We don’t know the answers, but know something is going on.  We pray the appointments this week give us those answers, and we hope they are easy answers.  Today is our appointment w/the cardiologist.  We’ll post an update when we know more.  Thank you for the continued prayers and positive thoughts for our sweet baby Matthew!

Friday, September 10, 2010

CT Scan Results


Matthew wasn’t approved for a sedated CT scan, so my mom and I spent the morning praying Matthew would be compliant and sleep while getting the scan of his abdomen and head.  Thankfully, our prayers were answered.  Matthew drank his contrast filled pedialyte and promptly went to sleep. He woke up when we strapped him to the table, but only long enough to look at me, grab my finger and drift back off.  They got good scans of both his head and abdomen.

Granny playing w/Matthew while we wait

The baby footprints
After several hours of waiting…again, not my strong suit, our pediatrician called and there wasn’t anything of concern (or answer) on the abdominal CT.  The GI is reviewing and he’ll call us if he sees anything out of the ordinary but the initial report indicated nothing.  So as long as Matthew has regular urine output, we’ll continue to monitor and wait for the cardiologist appointment on Monday and reassess after that. 
Today, I saw the silver linings of 2 Matthew quirks.  
1.       I’ve always wondered why Matthew would only drink from a bottle with the nipple from the hospital.  We’ve gone round and round with our GI about changing bottle types.  We know that the one he uses puts more air in his belly and aggravates his reflux.  If Matthew would take ANY other bottle, we would gladly switch.  Unfortunately he won’t.  The upside of this battle… getting Matthew to take contrast or barium (for CT scans/xrays) is much easier given they use the only bottle type that Matthew will take. 
2.       As well, at 6 months, Matthew still loves to be swaddled. That came in handy today as we needed him to sleep AND we needed to strap him to the table. 

So, we continue to mark things off this list that are not causing his symptoms (enlarged spleen, poor appetite, unconsulable crying).  We are hoping to find the cause soon and (greedily) we hope it is easily fixable.  We are planning on a fun and restful weekend to recharge us for the busy next week ahead with cardiology, nephrology, cranialfacial (where we'll get the head CT results), OT, and ECI appointments.  Thank you for the continued prayers and positive thoughts! 

Thursday, September 9, 2010

And We Wait


Patience isn’t exactly my strongest virtue.  We know something is going on with Matthew…and I want to know what it is NOW.  My imagination continually conjures up the worst and I have to remind myself constantly to calm down, now is not the time to freak out, we don’t know anything!  Plus Matthew is mostly still his sweet self, smiling and ‘talking’, so he can’t be too sick, right? 
Unfortunately , as with everything, the answer isn’t an easy one.  We haven’t been cleared by the charge nurse to have sedation for the abdominal CT yet, so hopefully we can get that tomorrow.  We won’t know the results from the viral cultures until Monday. We have a cardiologist appointment on Monday.  So…now we need to be patient and wait.   If we still don’t know any answers on Monday, it will be time to be more aggressive if his symptoms haven’t subsided. 
The beauty of having 3 kids is there isn’t much time to sit and worry.  Matthew needs to be coaxed into eating, Jackson needs to have someone celebrate his potty victories with him, and Alyssa needs someone to help her with her homework.  Although Matthew care and worry is intense at times, it cannot be all encompassing…too many other little beings in our house need care too.  That is a very good thing right now.