01 May 2013

This Guy

says hello and thank you for all your continued prayers and support.

Sitting by his side right now, talking about what he's feeling and experiencing. He's cognitively aware of where he is, what he's going through and what has happened thus far. He was extubated in the wee hours of this morning and the nurse that I spoke with said he started out in full conversation with them. He's moving his limbs well and actually sat in a chair today with the help of the PT. This afternoon he had his chest tube removed and was fed a decent lunch by my mom and brother.

We're continually amazed at this progress and are grateful to you all for your prayers but also to the miracle of modern medicine. I do believe this is a way God answers our prayers because without these advancements and practices by gifted medical personal, lives would not be saved.

Prayer Requests
1. Continue to gain strength
2. For no residual infection in the heart.
3. No more clots or potential stroke


30 April 2013

We're Not Out Of The Woods, But At Least We're Still In It.

Stole the quote from my wife.

Dad's out of surgery and in the ICU in recovery.  The surgeon was quite pleased with the way that the procedure went with few complications.  The valve itself was 98% functional so he did a repair rather than a replacement.  He said that the part that was infected wasn't as large as initially thought.  He cleared the part that was infected out and stitched the part of the valve that was torn.  He said part of the concern was that a section of the vegetated heart was missing and was floating/lodged around in the body somewhere.  It happened sometime between the previous TEE scan a week ago and the TEE scan they performed before the surgery today.  He doesn't believe that it went to his head because we would have seen some sign in his cognitive state.  He is concerned with the stitched area that it might become infected but with as many antibiotics that they are treating with the surgeon feels that it should be ok.  They are trying to figure out where his infection is stemming from because the part that he cleaned out didn't seem like it should have been causing the high temperature.

And now we will continue to walk through this journey in the woods and see what comes next.

Prayer Petitions

  1. Discovery of the infection and treatment of it.
  2. Continued weaning off of ventilator and extubated.
  3. Continued watch of bleeding and possible signs of a stroke, post surgery.
Thank you all for standing in the gap and praying for my dad.  The calm that has been with us has been incredible.

From before...
  1. No excessive bleeding. Dad has a strong reaction to heparin (blood thinner), which is necessary since his blood will leave his body and move through a machine and then back in to his body again. 
  2. No throwing clots. Because the blood is leaving the body there is a much higher chance that it could clot and cause a stroke.
  3. No broken off vegetative pieces of heart. This will act like a clot and cause a stroke as well.
  4. No bleeding in the brain. The neurologist said that he feels that the previous stroke area won't be an issue for the surgery.

The Calm Before The Storm

The road has been slow and steady since my last post and that's a good thing with the current state of health for dad.  The less changes, the better because it means that his heart is staying steady.

Since my last post:
  1. We were told that the surgeon had wanted to take my dad asap to the operating room to repair his heart.  My mom was uncomfortable with that because my brother had gone back to his home and it would take a day for him to get back to us.  So the surgery was postponed until Tues (04.30.13)
  2. During his stay in the CVStepDown, dad had a small spell where his heart rate, blood pressure and temp all went down (brady episode and hypothermic) and was moved back upstairs to ICU.
  3. He decided that just to mix things up, he'd convert himself back in to sinus rhythm again and has currently kept it for the past day.  This is a good thing but doesn't mean the surgery doesn't still have to happen, it's just a good sign that his heart is working properly right now and any little positives are good.  
This is a short and sweet post because tomorrow holds a lot in store.

Around 1pm tomorrow (04.30) my dad will have his heart surgery.  We would be honored if you would pray for all the people that will be involved in the procedure because it is a complicated one.

Prayer Petitions:
  1. No excessive bleeding. Dad has a strong reaction to heparin (blood thinner), which is necessary since his blood will leave his body and move through a machine and then back in to his body again.
  2. No throwing clots. Because the blood is leaving the body there is a much higher chance that it could clot and cause a stroke.
  3. No broken off vegetative pieces of heart. This will act like a clot and cause a stroke as well.
  4. No bleeding in the brain. The neurologist said that he feels that the previous stroke area won't be an issue for the surgery.
Thank you all again and we are so grateful for you all.

24 April 2013

Hope Will Lead Us On

Another dear group of friends, the Barlows of BarlowGirl wrote,

"So lift up your eyes

Cause we're not forgotten
And hope will lead us on
Oh we pray for the dawn
and we reach for the mornin'
And hope will lead us on"

Today dad had his TEE scan early in the morning, much before we were expecting otherwise I would have posted something about praying for it but sometimes that's the way things go at the hospital.  Take it when you get a chance.  


Unfortunately, the results that we were hoping and praying that it would not be, is the answer. There is vegetation of dad's mitral valve which means it's his heart that is infected.  This is a more concrete answer but now most of the paths that we choose, now have some negative outcome.  As much as we want to be hopeful and we will be, having surgery on his heart leads very heavily in to having another stroke because of the blood thinners that he will have to go on.  If we don't do anything at all, the vegetation that has already started, could begin to fall off and cause another stroke.  The hematologist is wanting to see from the ID doctor whether there might be a way to treat the heart infection without having to do the surgery, in hopes of sparing him to go in to surgery.  Also, his valve is swinging so violently, the hematologist believes this is why his blood count continues to be dropping and his need for more blood is present.  The valve is bursting the healthy blood cells as it regurgitates around in the left side of the heart.  

He did get two more units of blood (for those of you who donate, thank you. thank you. I'll be making my trip to donate soon so please keep going.)  He also got some physical therapy today and through their assessment, will continue to come help him with some rehab.  He was struggling to see properly today, he was trying to explain how the clock on the wall was missing things and he couldn't tell what time it was.  He was also having some strange mumblings and visions before we left for the night. A long grey haired Scottish Terrier was sitting on the counter at one point but dad quickly said that was a dream.  We're not sure what those moments were about but hope they subside.

I didn't get to speak to any of the caridac docs today but hope to see one tomorrow or at least the ID doc to get an idea of how bad the vegetation/infection is in his heart.  

There's not much more to tell today, mostly because I don't have the information.

Prayer Requests
  1. Proper treatment for his heart infection.
  2. For vegetation of the heart to NOT break down and fall in to the blood stream
  3. If surgery is decided upon, for there to be minimal collateral damage.
  4. Wisdom for my mom in choosing the best health options for my dad.
Thank you again to so many of you who have commented or written.  We appreciate all your prayers and thoughts.


20 April 2013

One Foot In Front of The Other



I love the song from my friends, Building429

"That's how I'm going to discoverOne foot, one foot at a timeOne foot, one foot at a time"
The past few days have seen some ups and downs, brought a lot of questions with little answers and lots of prayers and tears.  Since my last post on Tues. a number of things have happened.



  1. Dad's MRSA infection is gone but his white count is still up and he's still losing blood somewhere. The ID (infectious disease) doc is still trying to figure out why. Yay for no more yellow coats and purple gloves! We don't know the state of his heart and whether or not it might be infected still.
  2. After days of confusion and very cloudy conversations, dad's finally having full thoughts and conversations, remembering most of the recent experiences and people that have stopped by.  The timeline is a little fluid, hours feel like days, days feel like weeks. Speech Therapy will be working to see how his higher cognitive abilities are working
  3. For a hot second, dad's heart converted from afib back to a normal sinus rhythm. Ok, a little longer than a hot second, more like five or six hours but sometime overnight went back to afib.  We were told by one of the cardiologist that if we can catch it again in sinus rhythm, they can chemically keep it steady, the trick is catching it when it does.
  4. Dad has been moved from ICU to CVStepDown (my mom's floor) again because his CT scan came back showing no more bleeding or other worry spots.  There are some residual effects that the ID doc said might have caused an unexpected fever spike last night (06.18.13) as well as the tiredness and confusion due to the stroke pattern appearing wedged shape (i wish i could see this?!) There are also some signs that, probably due to age, small sections of his brain probably aren't working.
Now, to give information about today.

  1. A test that the cardiologist tried to perform on Thursday but couldn't because my dad's neck was bothering him too much, will hopefully be performed on Tues (04.23.13) afternoon.  This test, a TEE (trans-esophageal echocardiogram) will give the doctors are very clear view of the status of my dad's heart.  What they are most interested in seeing is: first, is there any vegetation of the heart (how much, how bad) and, second, what is the status of the ruptured mitral valve and does it need immediate surgery or could it be postponed?
  2. The next part of treatment after the TEE is tricky and multifaceted.  If the heart is infected, the means in which to treat it is necessary before they can even consider doing any operations on my dad so finding the right antibiotic and dosage will be key.  After that is done and the heart needs to be repaired soon, a surgeon, as well as us, will have to take the risk of putting him under knife and blood thinner (which is necessary for open heart surgery because the blood is ran through the heart-lung machine) to repair the valve. This is risky because the blood thinner might cause another clot to break off and cause yet another stroke, one much worse than he had.  He hasn't been on blood thinner since the last major episode. If the heart isn't infected but the leak is bad, again, same as last - surgery. If the heart is infected but the valve doesn't look very bad, they will have to do surgery to fix the part that is infected - thinner is still involved.

    All this to write, the
    ultimate best case scenario: no infection, no vegetation, mitral valve has minimal damage.
    There outcomes to the others are either, stroke, heart attack or the end. the word i'm refusing to speak of because I'm choosing to be an optimist rather than my usual pessimistic self.

And so... this is where we are at the end of the day, er... morning.


Current Prayer Requests.
  1. stay stable for the TEE (on Tuesday)
  2. no more afib! catch the sinus rhythm and medically help it stay
  3. no infection of the heart
  4. mitral valve tear is minimal
  5. discover where he's losing blood
  6. start some PT as to get active
  7. start being more alert and awake
  8. Justin - he has to travel and get back to work on Sunday in Hawaii.
Thank you all for your continued prayer and support. It is incredible how the community has gathered around to pray for us and we hope that we can be a support to you all in your journey.  We feel the comfort of His grace around us.




16 April 2013

The Battle Is Thick Today.

Yesterday was a stable day with more tests for my dad. Today those results came in and they are not what we wanted to hear.  My dad's heart has a number of issues at hand that are all odds stacked against him.

The echo that was performed yesterday showed... a whole large explanation with lots of big words that I don't understand. The main words that we currently are concerned with are "prolapse of posterior leaflet" and "flail mitral leaflet w/ ruptured chordae" which in short means that the mitral valve is not functioning properly and needs to be repaired. This valve rupture is probably what caused the stroke.  Having had the stroke, being a heart attack survivor and having had work already done on his heart, greatly affects whether they would consider doing the surgery to repair it.

There is some concern that the infection of the blood might be due to endocarditis, an infection of the heart. They aren't sure on this yet but if so, this is not a good thing. They are also noticed possible "vegetation" in his heart which is also not a good thing.  It means that those parts of his heart are no longer working.  His heart is also in AFIB still and that doesn't help with anything.

I don't understand a lot of what's going on right now, but I wanted to write the things that have transpired today.

Prayer Requests

  1. Pain Management for his back so that he can stay comfortable.
  2. Choosing the best path of care.
  3. Comfort for our family. Thankful to have my brother here from out of town to be with us during this time.
It's hard to request a miraculous repair of his heart but that is my selfish request. 
I also trust that our God is Sovereign and in control. May He be the comfort to my hurting soul.

"O God, you are my God;  earnestly I seek you; my soul thirsts for you; my flesh faints for you, as in  a dry and weary land where there is no water. So I have looked upon you in the sanctuary, beholding  your power and glory. Because your  steadfast love is better than life, my lips will praise you. So I will bless you  as long as I live; in your  name I will  lift up my hands." - Psalms 63:1-4

15 April 2013

Stroke... And I'm Not Talking About The Masters

My dad had a stroke Sunday (04.14.13) morning after being admitted the previous Thursday for what we assumed was a pinched nerve or problem disk in his neck.  Before I get in to current details, let me recap what has happened thus far.
  • Thur. (04.11.13) morning, my dad felt like he had slept funny and went to sit in his recliner he has set up as a massage chair/heating pad chair and while sitting there, lost feeling and strength in his limbs and ended up sliding to the ground. My mom couldn't get him back up so she called the ambulance and had him admitted, unsure of what was causing the issues.
  • At the hospital, he was administered pain meds in the ER and then moved to a room.  MRI and CT scans were done and we waited for doctors to come and round.  Consult for Neurologist and NeuroSurgeon requested. Still no answers by that night.
  • Fri. (04.12.13) Had seen his PCP and his CV doctor, still no neruo teams. Still in pain because of his back and weakness in his hands. no answers by that night
  • Sat. (04.13.13) AM, Dad starts to not feel well, de-sating (low o2 saturation) and signs of AFIB (arrhythmic beating of the heart) and he is moved to the CVStepDown unit (the same floor on which my mom is a nurse) and watched. By this point, we still have not seen any of the neurology team.  He's not lucid and doesn't know where he is, who people are.  Still in pain and we assume that the pain medication is causing the cloudiness.  He gets a bunch of scans (MRI, CT, ultrasound of his arteries in his legs, lung scan) He has a blood infection, low hematocrit level, kidney levels are not good, UTI and it seems that he might have had a mini stroke. He is started on an blood thinner that evening. Neurology is reconsulted and still no visit by that night.
  • Sun. (04.14.13) Dad has a full swing stroke and moved from CVStepdown to the main ICU.  They feel that the blood thinner has caused this bigger stroke and another CT scan of his head is done to compare with his previous one.  It is confirmed that he has bleeding in the lowest part of the right side of his brain.  Blood thinner is stopped and by the afternoon he is having short conversations with us and singing along with some of his favorite southern gospel tunes between his naps.  A neurosurgeon arrives and explains this was a stroke and as a surgeon can't really give us more answers than that, no surgeries on his back or neck can be done until some more answers are found.  He does feel that the blood thinner caused the clot and bleeding and because it has been stopped the body has a chance to do what it needs to do heal. He has weakness and slight blindness on his left side (right side of brain controls left side and vice versa.) Finding the source of the clot is now the game and finding if it came from his heart somewhere is the first place they were going to start looking (because of former heart attack, bypass surgery and stint.)  He has another scan at the end of the night but results hadn't come in yet.  Unfortunately his pain medication has been but on hold until he becomes more clear headed and in this has a rough night.
  • As of this morning (04.15.13) he is stable still, given a dose of tylenol for pain management but after consulting with another doctor says he can have something stronger.  He's currently resting and we're waiting on an echo of his heart to see if there are blockages that caused/could cause more damage. 

Thank you for your prayers and thoughts as we journey this path.  There are a number of compounding issues that are making this situation very tough, his back being the biggest issue.  At this moment, we aren't taking visitors outside of family and clergy.

Prayer Requests
  1. Find area of clot and determine if it might do more damage.
  2. Find reasonable and agreeable pain management option for my dad's back.
  3. Blood infection and blood loss to be discovered.
  4. Healing in his brain from the stroke.
  5. Comfort and strength for my mom as she has to take care of home and work.
  6. Doctors, Specialists, and Nurses in care community.

21 May 2012

First time NICU Parents

I wrote this for a friend who's sister in law just had a micro preemie (25-28 weekers) and was asking us for advice on the process.  I thought I'd share this on to anyone who might google preemie help or NICU information.  A little back history, my wife delivered our twin girls at 28wks. Baby A registered as a 25 weeker (550g) and Baby B registered as a 28 weeker (640g).  Baby B had a 2.5 month NICU stay at Le Bonheur Children's Hospital and Baby A had a 9.5 month stay, leaving with a G-tube and a trach + vent support. Both babies have been home since Oct. 12, 2011 and we are currently still on vent and MIC-KEY but in active trach trial procedures.

Here's a blog on NICU parental advice:

Advice.

1) Don't be afraid to ask questions and have doctors explain what something means. If they aren't willing to explain things, find another nurse or doctor who will. You are your child's best advocate and you should try your best to understand what things are happening to your baby.

2) Don't google everything they say. Most of the things that might come up in some of the growth and development of the baby will be generic terms or broad diagnosis and when you start to google things that are that broad you get lots of general explanations and or really gruesome pictures that don't apply to your baby.

3) Do google things like medicines and specific diagnosis. You will gain a better understanding of why and how certain things work and affect your child.

4) Get to know your health care professionals and build a relationship with them. They WILL become life long friends. You WILL see them a lot. Be attentive to those that work well with you and those that don't and figure out why to both.

5) Be available as much as you can when it comes to being interactive with your child. Use compression care as often as possible whenever they are doing ANYTHING in the Giraffe Beds. Ask to help with changing linens, fixing minor things in the bed, and asking to Kangaroo Care as soon as possible. The more interactions you get with your child in this fragile state not only helps your child grow and get to know you but it also helps you keep sane, mentally, emotionally and connectively with your child.

6) Get to know some of the other parents around you. Strength in numbers. Everyone in the NICU has a sick baby, learn what other parents are doing to help their babies grow.

7) If the hospital allows, bring comforting things from home for the baby to know you. Sleep with lovies, blankets, swaddling, bedding. Keep them in ziplock bags until the day they allow you to use it in their Giraffe Beds. Your scent is an extreme comfort to them. Also, if it's family centered care rooms, bring speakers and soft comforting music to play every now and then. No AC/DC yet  Mozart for babies is a GREAT start.

 Do spend some YOU time outside of the hospital, especially if it's family centered care rooms. We lived in the hospital, almost a month before going to see a movie together. The nurses had to kick us out bec. we hardly left the room. It's important for your mental stability to do things for you as well because your baby needs you to be healthy. Your baby is surrounded by the best team that can be taking care of them and they will notify you if you need to be there.

9) Leave a disposable film camera / old digital camera in the room just in case something funny happens while you are out on said date. Our nurses would dress the girls up in cute outfits or pose with the babies when a big accomplishment was made like finishing a whole 2 cc's of milk for the first time. (it's a big deal... i promise.) Those little moments are fun to have.

10) Blog/Journal/Keep a Diary of this journey. (you can read ours at http://iamknittogether.blogspot.com/ - start around 12.13.10 for the hospital journey or 10.28.10 for the whole journey) because it is therapy. We have over a year's worth of writing that we are now turning in to a book to give to our daughters when they get old enough to understand it to show them the amazing miracles that they are. It's also an easy way to keep your family and friends informed about what's going on bec. a lot of them won't be able to see them at this phase of life. Also keep a notepad and pen in the room for when therapists, doctors and specialists stop by and work with your baby while you are out. Have them leave a note, their pager numbers or contact info so you can contact them about anything they might have done.