Friday, October 29, 2010

Bureaucracy

The cranialfacial surgeon's scheduler (De) came back in town and called me on Wednesday.  She is working on scheduling our craniosynostois pre-surgical appointments and then surgery (most likely early to mid-Dec).  The appointments are with the neurosurgeon, anesthesiology, pre-op pictures and the helmet consultation.  My to-dos are to get cardiology to send over their notes and release, and get the notes from anesthesiology from the PDA fix.  

So, I began my calls, first to anesthesiology.  They sent me to the medical records office.  The not-so-nice person at medical records told me repeatedly they have "legally 10-15 working days" to release that information.  When I calmly said "Please help me. My son is going to be scheduled for a complex surgery soon and he had a very hard time with anesthesia at his last procedure. How can I get these records as soon as possible?"  Her response was "we legally have 10-15 working days to release that information".  Helpful!  

So, next I called cardiology.  Thankfully they said they would fax the cardiac release over.  (I will follow up next time I talk to De. I hope they actually did so!)  I also needed to schedule Matthew's 2 month follow up and was told "Your doctor is booked for the rest of the year and his calendar isn't out for next year. You will have to be worked in as an overbooking. Please call back in a few week."  Again, helpful!  

I've been thinking that we should go back to our original cardiologist (Dr L) for a 2nd opinion and that latest phone call just cemented my decision. It was amazing the difference. I call over to Dr L's office and gave them an update of what's happened with Matthew since we saw them last.  They booked us for an appointment early December, but said if his skull surgery is earlier and we'd like to make an earlier appointment, to just call.  No problem. It was a stark contrast to the TCH cardiology experiences of late.  

Back to the medical records. To expedite the process, Matthew and I went down there this morning, checkbook in hand.  It costs $1.39 per page, payable by check only! (Yes, to get a copy of our own medical record!)  I was expecting to pay $100 in copy charges today, but paid less than $20. The woman was much nicer, but I still didn't get the information I was looking for. Supposedly anesthesia wrote extensive notes, and all I received was a 1 sentence blurb.  Not exactly extensive.  So, I'm gong to attempt to track down said anesthesiologist and hope that he can help me get what I need.

All in all, I feel very lucky. Through this 8 month journey, we have rarely dealt with bureaucracy or unhelpful people.  It has happened, but it shocks me when we encounter it because more frequently every one has been beyond helpful and nice.  I am very thankful for that!  

Wednesday, October 27, 2010

Happy 8 Months


What an amazing 8 months it has been! Happy 8th month to my sweet baby Matthew!

Monday, October 25, 2010

Sweet Hands

Yesterday I was feeding Matthew and he reached up and stroked my cheek with his hand.  He does this pretty frequently but yesterday it struck me how much I love his little hands.  They are as unique and beautiful as he is.  I love the way he touches my face, the way he links his hands together, the way he grabs his toes, the way he sticks all 4 of his fingers in his mouth at once, and even when he plays with my hair.  


These hands began our journey into the unknown.  I'll never forget the pediatrician saying "you know about his hands, right?"  Ummm...no.  His 4 fingered hands took us totally by surprise.  I'm thankful we found out in the way that we did, with this totally strange pediatrician (it was the on-call, weekend pediatrician). It didn't taint our relationship and fondness for our midwife or our regular pediatrician.  Matthew was born in a very quick 2 hours and had a hard time regulating his temperature.  (After reading brain development books, this isn't a surprise as temperature regulation is kicked off by time in labor.)  So instead of counting fingers and toes, we kept him swaddled, next to my chest, sitting in front of the heater.  If my midwife had noticed his hands, she would have made us go to the hospital.  I'm thankful that she was concentrating on his temperature!  In the end, we did end up in the hospital, but we had 2 beautiful days with the 5 of us adjusting to our new family and dealing with this shock. That time and that discovery transpired just as it should have.  All part of the bigger plan.

If Matthew had been born with thumbs, I'm sure that we would have uncovered his uniqueness but it would have taken much longer.  Without thumbs, we knew right away, and we've been able to get care and services that Matthew needs from day 1.  

Matthew has good function in his hands and has been using his index finger as a thumb in many instances.  He'll wrap 3 fingers on one side of a toy and his index finger on the other.  We call it his 'index thumb'.  He's a good candidate for pollicization, which is where they reposition the index finger to a thumb position.  Matthew has been approved for that surgery through the Texas Scottish Rite Hospital in Dallas and we'll decide whether it is right for him when he turns 2.  We had the initial consultation there a few weeks ago and it was nice to think about quality of life issues instead of the current life issues (heart, head, etc).  


These hands have taught us so much, but I think most importantly they have taught me that the imperfect is unbelievably beautiful...in hands and in life. 

Saturday, October 23, 2010

Freezing Time

As I've said before, I'm typically an optimist.  Though, our experiences with Matthew are requiring that we have to be prepared for something other than the best case scenario.  There have been too many surprises.  It is a balancing act, praying for the best but guarding ourselves from the worst.  But we can't live waiting for the worst to happen, so we've been living our lives as if there will be unlimited tomorrows for all of us, and we hope and pray that will be the case.  On the flip side, I also now have the need to make sure we'd have no regrets if this journey doesn't end according to our plan.

So that I don't have regrets...

1. I want to make sure that before Matthew goes into the hospital for any procedure we have a special family night.  Before his PDA fix, we had a fantastic picnic at the park. It was a beautiful evening and a lovely memory.  I hope this becomes our family tradition before all big days. 

Jackson & Darren
Jackson, Katie, Matthew & Alyssa
2.  I need to have updated family pictures, of the 5 of us, before Matthew's head surgery....badly. I need to capture this point in time, our family, as we are.  It's the closest I can come to freezing time in its tracks and the last few days, it is all I can think about.

Knowing we are under a time crunch (surgery should be in the next month or so), and knowing this is prime-time for photographers taking holiday photos (and our family friend/photographer under the weather), I assumed we wouldn't be able to get professional photos done.  Thankfully, a dear friend of ours volunteered to take some pictures and I was thrilled.  I just need all 5 of us in a photo, with smiles on our faces. The picture can be as real (and flawed) as we are, but I need it! 

Today we went to the park to snap some photos and we were surprised by our dear friend with a professional photographer (whose card I had in my pocket to call if we had enough time before surgery).  I was speechless.  I am blown away by the generosity of our friend and this beautiful photographer.  We are so very blessed!  I pray that I get to take millions of more photos of our family, but I needed to have this one now so there would be no regrets.  A million thank yous to Brooke for blessing us with your talent and Kirsten for hamming it up so there were many smiles!  


There are a few more pictures posted on Brooke's blog-- brookemartinphotography.blogspot.com.  She did an amazing job capturing our family as we are, and yet making us look better than we really do. 

As I posted yesterday, I'm awed by the love, support, generosity, and compassion we are continually shown as we navigate this journey with Matthew.  We thank God every day for it and I could never express in words the thanks that we have in our hearts but thank you!!

Friday, October 22, 2010

Thank You!

Throughout this journey with Matthew, I am continually humbled by our friends, family, co-workers, fellow parishioners, neighbors, those caring for us and for our kids, and just about everyone with whom we come in contact.  Each is going through his/her own journey, his/her own trials and tribulations, but always we are shown deep care and compassion.  Every kind word, hug, every prayer said for Matthew, every smile, text, email, and phone call gives us comfort and propels us forward.  Thank you!

Thursday, October 21, 2010

No Change = Good News

Today's cardiology specialist appointment was not newsworthy.  The echo showed no change in the last 10 days. Matthew has a type of cardiomyopothy called left ventricle hypertrophy (LVH) which means that his left ventricle is thicker than it should be. Matthew also still has bradycardia, which means that his heart rate is low.  

The smartest guy in the room with the letters after his name pretty much told us that he doesn't know what is going on.  Matthew has stumped the doctors.  The doctors don't know if this is permanent or will get better or get worse. They don't know what has caused this or how to treat it.  Meds typically used for the LVH make heart rate lower and are hard on the kidneys, so they are not something we want to use on Matthew at this point in time.  They have no idea what Matthew's prognosis might be.  All of it is just wait and see.   

Matthew is currently wearing a halter to record his heart activity for the next 24 hours and we'll get the results in a few weeks.  Then we'll have a follow up appointment in 2 months for another echo. Just wait and see.

In our un-medical opinions, Darren and I are speculating that all of this is related to the PDA.  The PDA was causing the heart to work much harder than it should have been for a very long time.  We speculate and hope.  If it is from the PDA, it wouldn't worsen or become dire.  The only question would be if the thickening was permanent or temporary.  Even if permanent, it wouldn't be bad as long as it doesn't get worse.

The cardiologist did sign off on future surgeries.  It's a bit frustrating, as the Nov 1 cranialfacial/neurosurgery was already canceled but we suspect it might be good for Matthew to have a few more weeks of recovery from the PDA before undergoing the craniosynostosis surgery. It was not reassuring to hear the cardiologist say "we'll just want to let them know to be ready to shock him just in case".  Hmmm..not reassuring at all but as Darren said, that could happen to anyone in the worst case scenario. 

So, we spent another 4 hours in the TCH cardiology department and came out knowing pretty much the same things we did going in, which isn't a lot.  But we believe that the echo 'no change' is good news and will celebrate that and be thankful!  Thank you for all of the prayers and well wishes for our sweet baby Matthew! 

Wednesday, October 20, 2010

Adjusting

Today is the 2 week anniversary of my last day.  The first 8 days were either at the hospital or at appointments, so really it hasn't even been a week in our new routine.  So far, I think Matthew and I have adjusted well.  Matthew hasn't been able to go to daycare since early September, so the only change for us is now I don't have to balance him and work.  I just have to care for him and that has made life easier, as we hoped!

Jax and Mattie at our snack picnic
The one major change is that Jackson is home on Tuesdays/Thursdays.  Jackson loves this, as he's not a huge fan of school but it's a bit of a shock for Mattie and I.  We are used to our daily routine (feed, pump, nap, etc) and we just haven't acclimated to having another being to play with/care for.  I also struggle with wanting to have fun when Jackson is home but not wanting it to be too much fun (and making him dread school even further).  Yesterday we went to the park in the morning for a snack picnic and we went to the library in the afternoon.  Jackson and Matthew were both in a great mood, and I have to admit, it was fun!  

At the park, Jackson helped me sing the A-B-C song for Matthew. It is Mattie's favorite!

video

A big thank you to my friends and neighbors who have helped me with this latest life transition.  Thank you Kirsten, Cindy and Liz!

Tomorrow is the cardiology specialist appointment.  We are nervous, but pray fervently for good news.  Thank you for the continued prayers for our sweet baby Matthew!!

Monday, October 18, 2010

Best 30 Minutes

Now I'm not sure if Matthew's fussy disposition was because of his ear or his teeth.  He's cutting his 3rd tooth and it is making him quite annoyed.  Thankfully he does seem to be on the mend.   Matthew's eating is also improving, better but not perfect.  We are thankful for better!

We anxiously await Thursday, to get more information about this newest heart issue (aka shock #4).  

In chronological order,
-shock #1= Hands.  We went in for a standard newborn pediatrician visit and found out Matthew was born w/o thumbs.  Definitely #1 both chronologically and in magnitude.
-shock #2= Intestines.  We went in for an upper GI to formally diagnose reflux and found that Matthew's intestines were malrotated and more prone to twisting requiring surgery.
-shock #3=Head.  We went in for an ear infection and the pediatrician referred us to a cranialfacial surgeon for craniosynostosis.  I would rank this 4th in magnitude, because I had noticed the ridge forming on Matthew's forehead, though I didn't know it was an issue.  Darren would probably rank it higher. 
-shock #4=Heart.  We go in for the routine echo after the PDA fix and instead of being told all is well, we were told he has yet another heart issue (start of cardiomyopothy).  


As you can guess, we are so done with surprises.  We've had a few other suprises that I didnt list...like the possible urachus and Matthew not waking after anesthesia during the PDA fix.  Speaking of, I think the best 30 minutes we've had in a very long time was the 30 minutes between our surgeon telling us about the successful PDA fix and the recovery room calling to tell us Matthew wasn't waking up and heading to the ICU.  It was the most relaxed, most optimistic, least stressed 30 minutes we've had in a very long time.  Hopefully we'll have another stretch of time like that very soon!  

Saturday, October 16, 2010

The Zebra

Thursday-- We should know more about Matthew's diagnosis, prognosis and treatment on Thursday when we speak to the cardiologist that specializes in the heart muscle and electrophysiology.  We pray for good news but we are preparing ourselves in case it is not. 

There is a basic principle for doctors that says 'when you hear hoofs, expect horses not zebras'.  It seems to always be the zebra with Matthew.  The zebra always takes us off guard and knocks us down when we find out it wasn't the horse we were expecting. 

Thankfully having 3 young kids helps keep us so busy that we don't have time to think.  We know deep down that our journey may not end the way we wish, but there is very little time to concentrate on that.  Alyssa, Jackson and Matthew keep us in the moment.  That's not to say that life isn't a little different now.  I lose my sunglasses more often. I forget whether I shut the garage door several times a day. (Thanks to Cindy for checking!) I check to make sure I locked the car multiple times a day.  I forget to take the cloth bags to the store.  I take more pictures and more video.  We shed a few more random tears. But all in all, we are living like we always have, moment by moment in the craziness.

Matthew still seems to be in a bit of pain from his ear infection and is making sure we know it.  We are trying to manage it w/his antibiotics and tylenol.  We'll take him back to the pediatrician on Monday if it doesn't improve.   He does have periods of happy baby, which we relish.  Additionally, Matthew is starting to get separation anxiety, which is good because it is developmentally appropriate, but it is frustrating nevertheless.  We just keep reminding ourselves "developmentally appropriate is good."  We pray for patience...so that we can be kind and loving to our kids and one another. 

Thursday, October 14, 2010

Hard Night

Since Sunday, Matthew has slowly been getting back to his old self...happy and active with a sweet disposition, but a frustrating feeder.  Last night something changed.  He started fussing, and then screaming, and not sleeping.  Last night was rough and we knew something was amiss, but didn't know what it was.  

I called the pediatrician this morning, and they were thankfully able to get us in 20 minutes after the call.  I rushed to get Jackson (his first day at home with me) and Matthew in the car to hurry to the appointment.  I cannot explain how happy I am with our pediatrician. He's a caring guy who has helped us all along the way and I trust him to tell me like it is.  When I updated him on Matthew's latest, he hugged me and kissed Matthew. He affirmed what we are suspecting, that this newest heart issue is not good at all.   But that is not today's issue.  The doctor examined Mattie and had the biggest grin on his face when he told me that Matthew has yet another ear infection.  Ah, an ear infection, we can deal with that!

I'm planning to call cardiology today to find out when our appointment might be since we haven't heard from them yet.  Hopefully soon!

Wednesday, October 13, 2010

Making Thumbs

I'm thankful to be able to blog.  Not only does it keep our friends and family up to date, but it helps me organize my mind, which these days is a crazy mess.

Yesterday Matthew, my dad and I went to Dallas to talk to a hand surgeon at the Texas Scottish Rite Hospital about making some thumbs for Matthew.  I know it was a bit silly to go to the appointment given that Matthew's dance card is full of more serious issues. But I needed to go, to think about making Matthew's quality of life better when the time is right...to be hopeful.  

Matthew is a good candidate for pollicization, where they can repurpose Matthew's index finger to position and function like a thumb.  The surgeon described the surgery as 'beautiful', typically 3 hours, with a day hospitalization.  The doctor recommends doing it when the child is around 2 years old.  So, when Matthew's cleared by the long list of specialists, we can call and get on the schedule for the surgery.  It was a nice, hopeful day. I enjoyed the road trip with my dad, which I haven't done in probably 30 years. 

Unfortunately yesterday I had to call cranialfacial to let them know Matthew isn't cleared for the skull surgery.  The November 1 surgery has been canceled.  When Matthew is cleared from cardiology, cranialfacial/neurosurgery will reschedule the craniosynostosis surgery.  It was a hard call to make.  We are sad that he won't be ready and worried that his brain continues to grow rapidly in a skull not ready for it, but we know this is for the best. We are no longer playing beat the clock to figure out the heart issues.  Knowing it in our heads doesn't make it easier on our hearts. 
 

So, now we wait for the cardiologist appointment to find out our next steps.  Until then, we will enjoy the beautiful days with our 3 kids and live in the moment. We are so grateful to our family and friends that have reached out to us, lent an ear, sent a note of encouragement, lifted Matthew up in thoughts and prayers.  Thank you!

Monday, October 11, 2010

Cardio Update

What a day!  First Matthew and I fought rush hour traffic to make it to TCH by 9:10 for our 9:30 follow up with cardiology. I got there, signed in and waited. And waited. And waited.  Finally at 11:15a I asked "Did you guys forget us?"  and was told we were being rescheduled because we missed an 8:45a echocardiogram appt.  After I told them I wasn't even told we had an 8:45 appt, they brought us back for the echo.  Then we went back to the waiting room and waited...and waited.  At 12:45 we were called back where they took blood pressure (still high) and heart rate (still low).  

I know by now we should expect the unexpected, but since it is the "unexpected", we don't.  The fellow came in and let me know they've been discussing Matthew's case and there are some concerns from the echo.  Matthew's left chamber is thick.  He threw out terms I'd never heard before... moderate dilated hypertrophy, left ventricle hypertrophy, cardiomyopathy, noncompaction.  Matthew also has it mild on the right.  The attending came in to let me know they believe that this is all interrelated...the high blood pressure, the low heart rate and the hardening.  They have referred us to the expert cardiologist specializing in the heart muscle and electrophysiology.  

The first appointment they had w/the new specialist is Oct 29 which is the Friday before our head surgery. When I explained that, they are trying to work us in.  We'll see.  We are playing beat the clock 3 weeks to head surgery, and I am pretty sure we will have to delay. We have to get cardio sign off before cranialfacial/neurosurgery will get anywhere near an OR.  So many balls to juggle and heart trumps them all.

If you've read our story for very long, I'm sure you've read between the lines.  You know what we don't say.  We are scared.  Thank you for continuing to pray for our sweet baby Matthew and for us!

Sunday, October 10, 2010

Home Again- Yippee!

Dorothy was right--there is no place like home!  We've had a great afternoon at home...spending time with neighbors and friends, eating a very yummy dinner (thank you Kleinfelders!), decorating pumpkins and enjoying being a family of 5 under the same roof.  

Thinking about Matthew's issues the last few days, I actually think it all makes logical sense (though I'm not a doctor and don't play one on tv).  Before Thursday, he was in heart failure, with a large heart, pumping a large amount of extra blood through his lungs which had much higher pressure than they should have.  After Thursday, his large heart didnt have to pump as hard to get the blood through his body (explaining the low heart rate).  The blood is no longer flooding his lungs, but going through the rest of his body (explaining the high blood pressure).  And his lung pressure has dropped by 4x (explaining the hard time breathing after the anesthesia).  

This is in alignment with what our heart surgeon told us on Friday, but we lost track of that with all of the doctors panicking about him the last few days.  Today's attending cardiologist admitted they are stumped, they don't really know the cause and they don't know if its temporary or Matthew's new 'normal'.  The good news is they doesn't think Matthew is in any danger and it should not impact either his upcoming surgeries or his quality of life, hence why they sent us home.

What is concerning us is we haven't seen the immediate relief for Matthew that the doctors thought we would see after the procedure.  Matthew still has the same symptoms of heart failure that he had before the procedure.  The fussy, bad eating with the sweating, bad coloring, and swollen feet. Though he does seem to be in better spirits.  Tomorrow's appointment should give us some insight as we'll ask more questions and get a peak at his heart again on the echo.  I'm guessing heart failure doesn't reverse itself in 3 days but I'd like someone much more educated than I to conjecture.

Matthew is celebrating my lack of employment by keeping me amply busy.  We were in the hospital Thursday-Sunday. Monday is cardiology. Tuesday is a consultation w/the hand surgeons.  Wednesday OT. Thursday is cranialfacial/neurosurgery.  Whew....then Friday I'm going to celebrate the first day of no appointments and no work 9 days after my last day of work!  

Thank you again for keeping up with Matthew's journey, and for the love and support.  We feel it all over and it gives us light in dark times. Thank you!

PDA Recovery Update- 1p 10/10

We are heading home. Although Matthew's heart rate is low and classified as 'irregular', it has a typical pattern and there isn't anything they would do here that we can't do at home.  We had a scheduled appt for tomorrow (the same appt we made over a month ago before we knew about the PDA) and there they will do a follow up ECHO.  Matthew's new 'normal' heart rate may be low or this might be a temporary thing.  We'll have to wait and see.  The doctors do not believe he's in any danger and we're best at home. Yippee!!  Now, we've got to be released before the Texan's game lets out.  Don't want to fight the game day traffic! 

A huge thank you to everyone who has followed Matthew's journey, has come by, called, sent us notes, and thought and prayed for Matthew!  We are so thankful...a million times over! 

PDA Recovery Update- 9a 10/10

Happy 10/10/10!  On Thursday when we came in for the PDA procedure, I was hopeful we wouldn't be spending today in the hospital, but alas, we are.  

Matthew and I love the 15th floor.  Everyone we've come in contact with has been great!  Matthew is hooked up to a box that sends his vitals to a centralized system, so the alarms don't go off in our room but someone is still keeping an eye on them.  This box also allows us to move around, so he and I have made a few laps around the floor this morning.  Additionally, he and I got almost 8 hours of sleep last night (with a few interruptions for vitals). It felt great!  Matthew even shot me a few smiles this morning to show me how much better he's feeling. 

Matthew's heart rate is still low but last night it didn't drop down as far as it has been. The doctors and I are hopeful that this is just a temporary issue caused either by the PDA fix (his heart getting used to the new flow) or an after effect of the anesthesia.  But today we'll have to start asking questions about the impacts if this doesn't correct itself shortly.  

Thank you for all of the prayers, well-wishes and special thoughts for our sweet baby Matthew.  They have given us great comfort and we are so very grateful!

Saturday, October 9, 2010

PDA Recovery Update- 7p 10/9

Good news... We are out of the ICU and on the cardiac recovery floor.  No swelling of his brain!  We've noticed a marked improvement in Matthew today.  He's typically comforted best by being held and the last 2 days he wasn't having any of it, but today he was again comforted by being held.  (Makes him and us feel good!)  The last 2 days he's been moaning/crying/fussing when awake and now he seems more like himself...he even smiled and laughed a little today!  And his blood pressure was normal the last time it was taken.  All goodness!

We have lots to celebrate, but aren't all the way there yet. Matthew's heart rate is still very low and his pulse oxygen levels are erratic.  Speaking to the cardiologist when we got on the floor, we have to figure out why he's got such a low heart rate before we can go home. Her estimation is it wouldn't be until at least Monday.  Hopefully its just taking Mattie's heart a little time to get acclimated to its new flow and nothing more.  We continue to wait and pray.  

ICU Update 3p 10/9

We really dislike the weekends in the hospital. It is quiet and not a lot gets done...so not much new to report.  Matthew's heart rate is still low & often irregular, his blood pressure still high (though coming down off the high), and pulse oxygen level is still variableThe critical care docs ordered a CT scan of Matthew's head to see if his brain was swelling due to his craniosynostosis.  We are still awaiting the results.  If the results are negative (no swelling) then we were supposed to head to the cardiac floor.  No telling if they released our room already though.  If there is swelling, we have to meet w/neurosurgery to discuss.  So... we continue to wait and pray. 

Although the days we've sat at Texas Children's waiting and praying are some of the scariest, it has always been a reminder of how lucky we are and what an amazing life we have.  We are thankful for our parents (who have lovingly cared for Aly and Jax when we were here loving on Mattie), our families, our friends (old and new), the caring & smart staff at this premier medical facility, and all of the people that have lifted Matthew up in thoughts and prayers. Thank you!

ICU Update 8a 10/9

My brain is getting a little fuzzy from the lack of sleep, so I apologize if today's posts are rambling non sequiturs.  The random updates...

-Matthew has been off the oxygen for 12 hours now but his pulse oxygen levels drop and the alarm has gone off every 15 minutes throughout the night.
-His heart rate is still very low (50s) and a bit irregular.  Our cardiologist would like his heart rate to be a steady 80s/90s.  Hopefully its just that his heart is still figuring out its new pathway. 
-His blood pressure is still high (110/80 instead of 80/50).  They are hoping it will go down on its own w/o meds.  We'll wait and see.
-Matthew still doesn't seem to feel well.  He moans/cries the majority of the time he's awake and he's yet to crack even the smallest smile. 

-He is back on breastmilk, though still taking small amounts more frequently.
-They stopped his fluid IV because he's taking adequate volumes of milk, but it caused the IV to fall out.  He's unfortunately on IV meds so they had to reinsert.  I wasn't thinking straight in the middle of the night or I would have fought the reinsertion.  
-Now that I have had 4.5 hours of sleep, I let the day nurse know that they need to keep that IV line open or they need to move to oral meds as they will not be inserting a new IV if this one falls out. 
-I was not a fan of the night nurse, so was very excited for the day shift to come on at 7am.  Even if it means the return of Dr Mumbles.  
-I'm hopeful that today we'll move to the cardiac floor. 

Friday, October 8, 2010

ICU Update 6p 10/8

I was hopeful we'd be moving on up to the 15th floor this afternoon, but alas, there was no room available.  So, we are in the PICU again tonight.  Pro-- Good, attentive staff providing the care Matthew needs.  Con-- Very uncomfortable chair in which I attempt to sleep and listen to the 25th-36th hour of the Backyardigan's dvd Matthew's roommate has on.  Oh well.  

The critical care docs are a bit concerned about Mattie's high blood pressure/low heart rate.  We were hoping that being on the cardiac floor would be a good thing, closer to the doctors in the most know about Matthew's particular issues.  Given that we aren't going, they decided to have the cardiologists monitor Matthew's vitals via the 'EKG Lab' (where a group of cardiologists sit reviewing the monitors of 'heart babies').  Knowing that Matthew's case is getting special review gives us comfort.  

Matthew has been sleeping/fussing off and on today.  When he fusses, it's more of a whine with his bottom lip stuck out.  Sad and cute at the same time.  I can't wait till he feels better and shoots me the sweet, ear to ear Matthew grin.  I miss it.  

ICU Update 2p 10/8

Matthew's heart rate is still low and blood pressure is still high.  He's been setting off the alarms every 15 mins or so but the cardiac surgeon thinks that it is all part of Matthew's body adjusting to his new heart flow.  Although its not the typical path, it isn't really surprising given how large his PDA was and how different his heart has to pump/blood has to flow. 

Some good news-- we are being moved to the cardiac floor, meaning Matthew no longer needs to recover in the ICU.  Matthew's respiration has continued to improve, so they put him on a low flow oxygen (just one step away from breathing independence).  As well, he is no longer NPO (no food/drink).  Matthew finished his pedialyte in no time flat...with no sweating!   

And just like we've spent so many days/nights since Matthew's birth, now we wait, pray and look forward to taking our sweet baby home again.  

ICU Update 7a 10/8

2 steps forward:  Matthew became more awake and more active throughout the night.  So, he was extubated at 3am.  He's on a little oxygen to help him out, but he's breathing on his own and is picking up respiratory strength and frequency.   He does have a bit of stridor (swelling of the vocal cords) and they ordered a breathing treatment for him but decided he really didnt need it right now.

1 step back:  Matthew's heart beat is still 'irregular' and much lower than it was before yesterday's procedure and his blood pressure is a bit high.  Cardio has been called and an EKG and chest x-ray have already been completed.  This seems to be the next big thing to get figured out.

We are happy with the positive trajectory as is our critical care team.  We've had a bunch of great nurses and PAs here in the PICU, as well as the night attendings.  I've been dreading the day shift because the attending yesterday was a mumbler.  So much so that even the nurse asked "what?".  Hopefully we won't be on his service today.  We are so thankful for great care!

It's weird, not in this situation, I'm pretty pollyanna.  But here, in these harder times at TCH, fear creeps in.  Thankfully Darren's faith that everything is going to be okay never waivers.  Today I'm going to be more like my beloved.  I'm going to have faith that the really smart people here will figure out what's going on, and help our sweet baby Matthew.  Thank you for your continued prayers and well wishes!

Thursday, October 7, 2010

ICU Update 9p 10/7

Matthew is still stable but still intubated and in the ICU.  The doctors would like him to be more active with better stats before pulling the breathing tube. He'll need the tube removed and good stats for a period of time before we can go home.

Matthew's been on quite the roller coaster... Irregular heartbeat one minute, regular the next.  Heart rate good at 120 and then drops to 57.  Respiratory rate of a low 11 to a great 35.  He has a good few minutes and a rough minute or two.  We've been cycling like that since we got to the ICU (and I'm sure that is what it was like before).  It is probably because he's still really groggy, rousing for a few minutes and then sleeping for the next hour. The critical care team tells us that this is not uncommon.

Matthew is a fighter and just needs to shake off the sleep and get mad.  I keep telling him that this is just the bad before the good. We are looking forward to hearing him cry, as then we'll know he's well on the road to recovery.  I pray it happens before the light of day.  He's going to feel so much better with his heart fixed!

Thank you for praying with us and for thinking of our sweet baby.  We are lucky to have an amazing support system. Thank you!

Roller Coaster

Shortly after I posted, the nurse came to speak with us. First and foremost, Matthew is okay and still stable.  He's having a hard time breathing on his own so they are reintubating him and sending him to ICU where we will thankfully be able to see him.  Please say a prayer for our sweet baby Matthew. He seems to be needing an abundance today.  Thank you!

Unexpected

Mattie's path is never the easy one.  We should always expect the unexpected with him.  First and foremost, Matthew is okay, he's stable.  Unfortunately, he's had a hard time coming out of the anesthesia. When it usually takes 20-30 mins, he has taken 2.5 hours plus. This is very rare.  Though he's breathing on his own, he's still getting a little oxygen to help.  The good news is that he's no longer intubated and his vitals are good. 

While we are here, they will likely check Matthew's liver function because they suspect he is having a hard time metabolizing the anesthetic.  We will want to investigate this further and get to the root cause because Matthew is scheduled for a more in depth procedure (fixing his craniosynostosis) on November 1.

Matthew will be moved to recovery shortly where Darren and I will be able to see him. We can't wait to cuddle our sweet baby boy.  Thank you for the prayers and well wishes for Matthew's recovery! 

PDA Closure= Success

Thanks be to God!  Matthew's PDA was fixed by his talented heart surgeon today!  

Notes from the discussion w/the doctor:
-Matthew had a large PDA... a big deal.
-He was in heart failure, but this procedure will reverse that.
-Matthew had lots of blood going to his lungs making the blood pressure high in his lungs and dangerous.
-He had 4x the blood going to his lungs as he had going to his body, should be 1x.
-Normal blood pressure for a 7 month old is 80/50, Matthew's was 80/20 before the PDA fix and is 80/50 now after the fix. 
-Matthew's veins are a bit atypical, with bilateral vessels (like there would be in the womb) which caused the dr to have to use a balloon to inflate one of the vessels to get the cath through. 
-Thankfully Matthew's vein healed after the balloon, not requiring a stent. 
-Matthew has a small aortic arch...just something we'll need to keep our eye on w/our regular cardiologist appointments.
-His surgeon is very pleased w/the way the device blocked the PDA and is happy w/the procedure.

-If Matthew recovers well from the anesthesia, we'll be released in about 6 hours and follow up with him in a few months.
-Matthew is cleared for his cranialfacial surgery on November 1.  

Darren and I are both touched by the outpouring of love and support from our family and friends. Thank you for the continued prayers and well-wishes for our sweet baby Matthew!   

Cath Lab Update

We’ve been updated twice from a nurse in the cath lab.  Matthew’s procedure is going well. They have inserted the device and are currently waiting to make sure it is firmly in place.  The next call should be for us to talk to our surgeon in one of the consult rooms.  We continue to wait and pray but so far, so good. 

The Cath is On!

Matthew is currently getting his PDA fixed in the heart catheterization lab.  Matthew and I journeyed down to Texas Children’s before dawn and repeated all of the preparation we did 2 weeks ago, and thankfully today our heart surgeon said “We are doing this today.  It’s time.”

I was anxious until seeing our surgeon and his fellow, both of whom give me great confidence that Matthew is in good hands.  During my most anxious moments, I was reminded and comforted by all of our friends and family (and friends and family of our friends and family) who are praying for and thinking about our sweet baby Matthew.  We will update when we know more. Thank you!!

Wednesday, October 6, 2010

Job Description


Today is the last day of my 9.5 year career at Accenture.  I accepted another job 7 months ago and have been pulling double duty since.  Below is the job description for my (now) only full time job.
1 Matthew Mommy Wanted

Must be
-on call 24 hours a day
-patient and loving
-organized
-willing to make a fool out of self for grins and laughs
-able to sing the ABC song time and time again
-able to understand medical terminology or be willing to research
-able to produce milk and/or cook
-willing to worry several hours a day
-able to drive (to the medical center and back, time and time again)
-agreeable to alternative pay (smiles and love instead of $)
-all of the above for 2 fun-loving pre-schoolers at the same time
My new boss is very cute, but sometimes screams at me in a language I don’t understand.  He's not a great conversationalist.  He also seems to root for my team’s archrival (but that isn’t new to me, most people at my old job did too).  
Though I joke a bit, today I have mixed emotions. My Accenture friends are smart, fun people and I will miss working with them on a daily basis.  When I think about my decision to take the voluntary separation package, I’m confronted with the realization that life is so very different than I planned for and it makes me a bit sad.  But since it is what it is, this change is the best decision, the only decision.  Being mommy to my kids has always been my first priority and Matthew has made that a full time role plus, plus and plus. This change will make life less complicated which will be a big relief after the months and months of things that have made life more complicated.
Tomorrow I’ll celebrate my first day of having only the one job (mommy) by taking my boss (Matthew) to Texas Children’s for his heart catheterization to fix his PDA.  We pray that he’s well enough to undergo the procedure and it goes exactly as planned.  I will update the blog as we get updates tomorrow.  We appreciate the continued prayers and positive thoughts for our sweet baby Matthew!

Monday, October 4, 2010

Countdown to Thursday


Thursday can’t come soon enough.  Physically, Matthew has been better.  He still has a little congestion, his breathing is a bit labored, and his coloring is off again.  Oh, and for the last week plus, he has thrown up at least once a day.  Each night has gotten progressively worse, where last night he spent the majority of the night moaning/crying.  Not fun.
 There are too many variables to be able to say what is going on--is it the heart issue, the meds (if yes, which one of the 6!), his head, his kidney, an unknown something?!?!  After Thursday, we will be able to eliminate some variables.  His heart will be fixed and he’ll be off 3 of the meds and hopefully all of these symptoms will disappear.  Only 3 more days!!

Sunday, October 3, 2010

Exiled


Jackson has been quarantined away from Matthew and spent Friday night, Saturday all day/night, and this morning in exile.  While he was lovingly cared for at his Grandma & Grandpa’s , and even though he’s still ill, we thought Jackson should come home.   
So, Matthew and I packed our bags and came to my folks’ house.  (Thank you, Mom!!)  Matthew and I will stay in exile until either (a) the Hoy House is fever free for at least 24 hours or (b) the heart catheterization on Thursday.  We miss being a family unit and aren’t huge fans of having to tag-team parent, but Matthew’s health trumps our wants and desires.  Only 4 more days until the cath! 

Saturday, October 2, 2010

Poor Jackson


Darren must have been right when he thought Jackson had a fever Thursday night because he had one yesterday when he returned from school.  After 20 minutes of trying to decide how to quarantine Jackson from Matthew, Darren called his mom.  Although we feel unbelievably guilty shipping our sick son to his grandparents house, we just can’t risk Matthew catching any new ailment this close to the PDA procedure.  We know Jackson is well cared for at Darren’s folks’ house and will have a great time despite feeling yucky.  (A million thank yous to Joy and Larry!)
We hope that Jackson has the same ailment the rest of us already had/have or it is something non-contagious (like an ear infection).  We know that kids get sick, and it is all part of being parents to 3 little kids, but right now the risks of exposure for Matthew are dire.  Matthew needs his heart fixed…soon. 
I think I’m going to stop praying that things get less complicated and just pray things don’t get any more complicated.  We are acutely aware that things could be worse, much worse.  We are thankful for all we have and where we are today! 

Friday, October 1, 2010

Germaphobia


I’ve always been a bit of a borderline germaphobe.  I remember realizing that I wasn’t a good example for my kids when I found myself yelling at them to not touch anything in public bathrooms.  “Hold your own hands and don’t touch ANYTHING!”  Not wanting to give my kids my psychological issues (at least not this particular one), I’ve tried to tone it down the last couple of years to varying degrees of success. 
With Matthew’s ailments and upcoming surgeries, I think I’m losing the germaphobe battle.  I’m ready to put Matthew in a bubble.  We are an affectionate family and now everyone is relegated to blowing him kisses.  No touching Matthew.  Antibacterial (in the diaper bag, the car, the bathrooms, my pocket, etc.) must be applied before getting near Matthew.  I wipe down anything that goes near Matthew.  I worry about going out because I don’t want either airborne germs or anyone touching Matthew.  Whew…I’ve become a full fledged germaphobe.
Before the last scheduled cath, Matthew was on house arrest and that didn’t do us any good.  Unfortunately, we don’t have to leave our house to be exposed to crud.  We think Alyssa brought in the last, long lasting ailment.  And Darren thought Jackson felt warm last night.  Oh no!  I contemplated packing up Matthew and heading to my folks house but this morning Jackson was just fine so Matthew and I will stay put (for now).
We had a pediatrician’s appointment today in preparation for next week’s heart catheterization.  The doctor today understood the need for my germaphobia.  We were whisked into an exam room instead of waiting in the waiting room, and we left out the back way.  Our pediatrician has come down with the yucks as well.  I shivered when I saw/heard him but felt a little better when he put on a mask before coming into the exam room and when he applied antibacterial twice during the exam. 
I’m thankful the anesthesiologist recommended this appointment, as Matthew does have a double ear infection which we can now treat in advance of the cath instead of finding it the day of the cath and having to postpone.  Add antibiotic to the long list of daily meds.  Monday we’ll add steroids as well, to help strengthen Matthew’s lungs. 
For the next 6 days I’m going to try to manage my over the top germaphobia and pray that Matthew gets/stays healthy enough for the procedure.  We are so thankful for the love, support, prayers and well wishes of our family and friends.  Thank you!