Surviving.

As I write this, I am sitting on the sofa watching a movie with Emerson snuggled on my lap with Malachi in his seat on the floor only feet away. I LOVE IT! It took me forever to fall asleep last night, probably zonking out close to midnight. And John woke me up at about 4:45 for "shift change". He did great through the night and all that, so that's great! But I'm ready for a nap! Even though he doesn't seem to require TOO much messing with throughout the night, I know I will be thrilled when night nursing gets here at 11:00 PM so we can get some sleep! We will get into some sort of routine... eventually. Someone is stirring. Will probably need some suctioning... Good times.

An Amazingly Wonderful Day

We made it home!! All four of us. Under one roof--the same roof. Together. A family. Perfect wonderfulness. I'm super tired, so here's the quick rundown, in pictures--they're the best part anyway. *WINK*

A happy mama... dressing baby for the ride home!

On the way home...Calm and collected the whole way...



What? A smirk when we came through the front door!!

John getting him all set up at home...
Missing: Pictures of us meeting with home nursing and respiratory therapy and nurse training.


Chi quickly became Emma's work of art... typical big sister [torture] play.

sweetly sleeping in [the dining room] HIS OWN ROOM!!
God is so, so, so, so, so, so, SO good!

God has a way

God certainly has a way of using my life's circumstances to bring me to a point of overwhelming humbleness. I need to remember that I can't do this on my own. I can't be a devoted full-time Christian, full-time wife, full-time mother, and full-time nurse. Yet, I try. I try and I fail. I will learn. God will continue to humble me. I will press on. Tomorrow marks a new transition. A new phase. Pray for me. Pray for us. We need it.

It's Up To Malachi

If he behaves through the night and morning, then he gets to come home!!! It's up to him, don't tell him what's on the agenda. Tomorrow will be a crazy busy day. I feel completely unorganized from a paperwork standpoint and have a ton more papers coming my way. I'll get organized when he's home.... Right?!?

Still on for Tuesday

John and his mom were the only ones to go visit Mr. Malachi today. I am sick, and did not want to compromise our little man. Tuesday is still the plan for him to come home. Guess I'll be disinfecting the apartment as well as I can before he is discharged and wearing a facemask until I get better--among the other things remaining on my to-do list. His heart was doing some funny business while John and Teri were at the hospital today, but cardiology was contacted, a 12-lead EKG was performed, and it was ruled out as sinus tachycardia--not SVT. He's still stable enough to come home.

I have not handled transitions very well when it comes to Malachi. Please pray for us as we transition to home, transition to have home nursing care (aka strangers in our house for multiple hours a day), transition to ordering supplies and transitioning to being full-time nurses as well as John working a normal day and on top of my regular wife and mother duties.

My thoughts feel very disjointed. I'm sick and distracted. Please continue to pray for us. We need it!

Two Working Cars!

Bonnie (our 1992 Pontiac Bonneville) has some revived life in her and hopefully we can get a few more thousand miles out of her. Not only that, BUT Maggie (our 2006 Dodge Magnum) isn't squeaking all over town anymore! The church body has an amazing way of taking care of one another's needs. For that we are SOOO thankful!

Candy shopping with Daddy

Mommy, Mommy!! Daddy got me some marshmallow chickies! I share with you.

marshmallow chickies = peeps

Bowling for Joy

Well, for her birthday at least ;) A fun night out with the Sharbaugh's was had at the bowling alley.

I had to document that my first ball was a STRIKE!! John ended up beating me the first game, but I basically legitimately won the second. (I say almost because technically we had bumpers in our lane with Emma and Elyssa, but I'm pretty sure I only got like 4 or 5 extra pins and I won by 10).

They even had shoes for Emerson!

Happy Birthday, Joy!

Emma was pretty proud of herself for finding the blowers.
All ready to bowl!!

FIVE MONTHS!!

Today marks five months! Can you believe it??? It's been two and a half months since we had discussion with the doctors concerning their suggestion to stop aggressive treatment and switch to comfort measures only. We've come a LONG way! Not only is the new medication helping to regulate his heart rate, but he is also only requiring 25-30% oxygen support! Translation = he can come home on Tuesday!! The cardiologists want to him to have one more EKG on Monday to be certain that two of his meds (new heart med and one immune system med) aren't both having the same negative effect (prolonged QT interval) on his heart. So far, so good! Hopefully, when we get him home we will be able to stay home for a while. Miss Emma just can't wait to have him home and be able to play with him on her pooh blankie. She has it all planned out

On that note, good night.

funny sayings

When we get to our floor on the elevator, Emma states, "This is us!"

---

toilet paper = poilet taper
chocolate = cha-lock-o-late
cinnamon = cin-min-a-min-a-min

---

While talking on the phone...
Me: Emma, who are you talking to?
Em: Baby Chi.

Em: Hi, Baby Chi. I need to talk to your nurse.

Em: Baby Chi, it's me! and mommy! and daddy! I love you! I miss you!

---

When visiting Malachi, she calls him "little buddy".

--

We've been working on sign language with her since Malachi is most likely deaf. We have refreshed signs we used with her before she could talk and have also added quite a few to her vocabulary...

please, thank you, eat, more, sorry, mommy, daddy
"signing time with alex and leah", emma
kitty, bird, dog, fish, snake
blue, yellow, red, purple, pink, green, white
sit, stand, swing, swim, come, play, share, your turn, my turn, go, stop, yes, no
potato, grapes, cookie, carrot

it begins...

We recently got Emerson a piggy bank...

Me: Emma, what are you going to do with all that money in your piggy bank?
Em: Clothes.

A New Day

Malachi got a visit from Grandma Kathy and his favorite sister this morning. It was so exciting, in fact, that he was asleep by the time we got around to taking a group photo.

Emma had to give him some "knuckles."
I love that you can tell that they already love each other to pieces. I think that just the immense love that Malachi will receive at home will help him more than any of his medications will. This morning Malachi was constantly trying to find Emerson and keep her in his line of vision. I love it. She will be SO INFLUENTIAL in his physical and mental development.
I'm sure, for her, the novelty of having him home will eventually wear off. But boy oh boy will those first days be amazing! Speaking of home... The new day is set for Tuesday, March 30. With the switchover to the new medication and the decrease of some of his other heart meds, his heart rate is much more consistent, mostly hanging around in the low 100s. Also, he is consistently requiring 30% oxygen, even when sleeping! This is much better than 30% when awake and up to 55% while sleeping. (He needs to consistently be less than 40% to go home).

Also, John had a chat with the clinical manager of the Peds and Infant ICU this afternoon. He was able to voice some of our concerns. I don't think it will necessarily affect the rest of his hospital stay (assuming we go home soon), but maybe it will bring some things to attention--especially from a communication standpoint--to set a better standard for other patients and their families. There just isn't a good time to expect "rounds" and that sort of thing to meet with the doctors and those making decisions regarding the care of these babies. Enough of that. It was a good day.

Stupid finances...

So we're really trying to figure out what's best for us especially in regard to our pocketbooks. Quite frankly, we would LOVE to build and have a house that's new. BUT, we don't have the time or the manpower to do a lot of work ourselves, so we would have to completely pay a builder. Even a new small house is probably realistically out of our price range if we don't want to be married to our mortgage. We would also be fine with another foreclosure, IF we had the time, money, and energy to put the work into it to make the house livable. Besides $$$, another problem we are running into with buying an existing home is that we don't have the time to look at a bunch of different houses. John and I will be the only ones able to take care of Malachi except for a nurse and we're technically not allowed to run errands while the nurse is here. We, obviously, would like to stop renting again--as quickly as possible. Our lease technically isn't up until January, but we're trying to keep these things on the radar and be on the lookout for a good deal. Or maybe we just stay in an apartment.

On the bright side, some guys from church tweaked and tinkered with Bonnie and we're super thankful that she's going to last us for a while longer. We definitely won't be able to get any money out of her by selling now, so we'll drive her 'til she just won't drive anymore.

Kind of makes us think we shouldn't have necessarily paid off 1/2 of John's school loans with our tax return. Thankfully, we don't have any credit card debt and the only debt that we have is a small loan from my dad and the rest of John's school loan.

When Malachi comes home, I really won't be able to continue working much with my MT stuff from home. And now that insurance benefits and things like that are being taken out of John's checks, we're definitely cutting it close. We are thankful for what we had built up in our savings and that we had a bit of a cushion. And we are even more grateful for the generosity of people who have given gifts of money or gift cards for food and gas to help us in our current situation.

All that to say, pray for a raise... soon.

Some Pics from the PICU

He wasn't too thrilled at the time, but I was glad that the nurse wanted to clean him up a bit and change out the linens on his bed. You can't really tell from this picture, but the boy has got some curls!

All snuggled in with his loveys.
Poor little man with his blood pressure cuff and pulse ox probe on his left leg and a board and cover on his right leg to protect his IV.

Transport--The Process

So while Malachi was snoozing in PICU the other night, I was trying to figure out the best way to load all his "stuff" up in the double stroller. Here's what I think will work best for us..

Step 1: Put battery on footrest of the back seat.
Step 2: Place ventilator, making sure that the side is free for proper airflow.
Step 3: Place suction machine.
Step 4: Place Pulse Oximeter (tells heart rate and oxygen saturation).
Steps 5 and 6: Place cardiac/apnea monitor (will alarm for rates too low and too high and if Malachi stops breathing) and oxygen monitor (tells us how much oxygen support he is getting through his tank).
Step 7: Place car seat.
Steps 8 and 9: Hang oxygen tank and emergency bag on back of stroller.
Step 10: If switching Malachi to a different ventilator, I would first run a vent check to make sure there were no leaks. I would also need to make sure the oxygen flowing through the ventilator tubes reads appropriately before connecting Malachi to the machine. Oh, and I would need to add a humidivent (shown below). This just attaches to his tubing to act as a filter/humidifier for the air blowing into his lungs.

I think that's all. I may have left a few little things out, but that's the main jist.

Frustrated Momma

When I got to the hospital this morning, Malachi was laying so he was facing away from the nurses station where his nurse was seated. I went in to his room and found that his face was covered in snot and he was crying and uncomfortable in a poopy diaper. It wasn't horribly poopy, but poopy nonetheless. He was crying his silent cry. This unit in the hospital should know better than anyone that kids with trachs quite frankly don't make much noise. They can't get your attention the normal baby way by wailing. He needs lots of suctioning--that's common knowledge. I just get frustrated when he's not checked on as often as I feel he should be, especially since people are being PAID to care for him and he's obviously still sick enough to be in the hospital.

My one last rant for the day regarding Malachi's care. Also when I got in, I realized there was an extra connector piece on his ventilator tubing. That extra piece is used for breathing treatments (albuterol, etc.). He has NEVER had these types of treatments. I asked the Infant ICU resident about it who replied she was unaware of any treatments. I ALSO asked Malachi's nurse and she was unaware of anything. So, I didn't think too much about it. Then later on, the RT came in to start a treatment. I said, "No. He's never had breathing treatments and I was told he doesn't have any." She looked at me and then checked the wall for Malachi's name and then left. She returned with a second RT who very sternly informed me that he gets treatments every eight hours. Sure enough, they were started yesterday at 5:00. WHY WAS I NOT INFORMED OF THIS? Why did I ask two people who specifically are directly involved with his care and they were unable to tell me that he was getting treatments.

We will be speaking with the unit manager because on multiple occasions we have made it clear that we want to be intimately involved with Malachi's care. We want to know any and all changes to his medications/treatments. We want to know of any upcoming procedures and their results. WE WANT TO KNOW! When John briefly spoke with our nurse about the whole ordeal, she passingly said something to the effect of, "Oh yeah, there is that little note up by his bed..." Both John and I's cell phone numbers have also been posted on the whiteboard in the room for easy access. Unfortunately, this has never seemed to help. I should not have to ask the staff if my child is on any new medications. I should be immediately informed of these things.

Just frustrated and ready to be home.

Taking things too literally

Emma has been spending the first part of the week down in Georgia getting spoiled rotten with Grandma Kathy and her great-grandparents...

After an eventful afternoon, Emma's great-grandma sat down in her recliner, kicked her feet up, saying "I'm pooped! You wore me out, Emma. I'm just POOPED!"

Emma replied, "You poopy like me??"

big financial decisions

The more we get Malachi into and out of his stroller (on transport), the more we are realizing that neither of the two vehicles we have will be adequate to fit John, myself, Emerson, Malachi and all of his equipment. With a normal seating arrangement, it would probably work. BUT, I will need to be sitting in the backseat to monitor Malachi and be able to suction him or attend to him in any other way that he might need while we are in the vehicle. A very tight squeeze with Emma's carseat in the back as well. So if anyone has any tips or suggestions or advice for a minivan or minivan type vehicle, we are all ears.

Also, you can be in prayer for us as we venture back into the world of home ownership. With all of Malachi's medical needs, we will no longer be heading to China and therefore sticking around the area. We will be meeting with a realtor and building agency tomorrow.

Definitely not sure how all of this is going to play out, but God does. I ask that you might be willing to pray for us and that we make the proper choices and follow the right path as we move forward in both of these respects.

Back to Infant ICU

Well, Malachi didn't have any crazy bad reactions as of yet to the flecainide. This is obviously a good thing. He is still having desat episodes when he is in a deep sleep due to his heart rate dropping into the 60s. We will see what becomes of this over the next few days. I haven't forgotten about those pictures I mentioned before. Hopefully, I will get around to it tonight. I've got some cleaning house to do yet before John and I's date tonight! If there is energy left over, my plan is to update with Chi pics and the "how to put Chi in his stroller" process. Always exciting ;).

The Plan

We finally were able to meet with the cardiology team. Here's the rundown for medication switchover.

9:00pm--stop procainamide.
10:00pm--start flecainide (three times a day-10p/6a/2p)

9:00am--begin weaned dose of atenolol (should be weaned by end of weak)

So, we wait. One more day to see how our little boy's heart will respond to this new medication. Everything else, thankfully, is mostly stable.

Morning Update

In the early morning, Malachi's heart converted out of his SVT. They do still have him on a continuous drip of procainamide and his heart rate is hanging out in the 75-85 region. They should be moving forward with the flecainide today. Pray that John and I will still be able to meet with the doctors today as originally planned before he was moved to the new unit.

Midnight Update

I was at the hospital all evening. When I left around 12:15, he was still in SVT. They had increased his procainamide drip and will see how he does. If he has not converted in four hours, they will take another blood sample to check the level in his bloodstream. If the level is still low, they will increase the amount again. They will continue this every four hours until he has converted out of his SVT into somewhat of a normal rhythm. When I left, his heart rate was bouncing anywhere from 90 to 190 beats per minute. Pictures will have to wait until the morning when I've got some sleep behind me.

Right now, the plan is for him to keep being increased on the procainamide until he converts out of SVT. When that happens, they will begin weaning his atenolol and adding on the flecainide. From what I've read, we should see in a matter of hours/days how his little heart will respond to this medication.

We will be heading to the hospital tomorrow morning to see how things are going and we plan to meet with the cardiology team as well as the pulmonary team who is following him. John and I want some sort of a tangible plan as to where we go from here and what we need to do to get home.

Good night.

A New Room

Unfortunately, I'm not talking about a new room at our house. Today, Malachi is being moved to Pediatric ICU. This afternoon he started having SVT. They tried the following to try to convert him out of that rhythm:
*vagal ice to the face maneuver which didn't work (it never does).
*an extra dose of atenolol which didn't work (it usually helps).
*an oral dose of procainamide (they couldn't get IV access).
*a couple doses of adenosine (after an IV) which didn't work.

Because his normal medication regimen of atenolol and digoxin (he also takes aspirin, sildenafil, and lasix for heart issues) isn't working, the cardiologist felt like it was time to switch him over to a new drug. The two drugs that they were thinking were flecainide and amiodarone. Because he is having such frequent drops in his heart rate, amiodarone was ruled out. We are left with flecainide. As like all drugs, flecainide comes with its risks--primarily that of new or worsened arrhythmias in patients with "normal" heart structure. Because Malachi does not have normal heart structure (he has two artificial shunts providing bloodflow to his lungs and his pulmonary artery and aorta have been combined to act as his new aorta), these risks are greatly increased.

Malachi is moving to a more critical unit as he is switched over to this medication because of the following:
"The relatively high frequency of proarrhythmic events in patients with sustained VT and serious underlying heart disease, and the need for careful titration and monitoring, requires that therapy of patients with sustained VT be started in the hospital." (drugs.com)

"In pediatric patients with structural heart disease, Flecainide has been associated with cardiac arrest and sudden death. Flecainide should be started in the hospital with rhythm monitoring. Any use of Flecainide in children should be directly supervised by a cardiologist skilled in the treatment of arrhythmias in children." (drugs.com)

Needless to say, I will be spending most of my evening at the hospital as they prepare to make the switchover. Pray that all goes well.

Losing the Battle

Right now, I'm losing. I'm losing sight of the big picture. I'm overwhelmed. I'm sad that Malachi isn't coming home on Monday. I'm praying the doctors can figure out what to do to find out what is specifically causing him his oxygen saturation problems. I'm getting caught up in the fact that I have no clue what things are going to look like when he comes home... if he comes home... no, when he comes home. I'm tired of watching life just go on around me as if nothing has happened. Why can't time just stop and Malachi can get better and we can just all be home as a family? Nobody wants or expects there child to have so much to overcome. He's such a fighter. He's so much stronger than he should be at this point. Just a bit more and he can come home. And when he comes home, I want him to be able to stay home, at least for a few weeks. But, most likely, that won't be the case. I want to be optimistic, but I need to be realistic. Most importantly I need to get back to leaning day by day and moment by moment on the only One who can and will give me strength. Every day I am reminded that I can't do this on my own. Why do I keep trying? It doesn't work that way. It's not supposed to work that way. I don't even know what to pray most of the time--"Just help." I very much feel like no one understands what is going on. Even John, who is very much going through this right alongside me, I find myself being short with and almost "naggy." He knows better than anyone what life with Malachi is like. I need to remember: we're on the same team... He's such a good man and I am thankful that God gave him to me to fight this battle. I don't even know what else to say.

BUT...
God is Good.
God is Faithful.
God is True.

With that, I'm going to try to wipe away the tears and get some sleep tonight.

Just Waiting

Well, John is doing his 24-hour shift tonight. Malachi is still requiring plenty of additional oxygen when he sleeps. Praying that the doctors receive wisdom beyond their experience and can figure out what is going on in my baby's body. Hoping to meet with a group of doctors on Monday and get a feel for where we go from here because obviously just going along with the status quo isn't cutting it. So until then, I guess we wait.

Feel Free to Unsubscribe

So I am reclaiming my blog. It's mine again. I realize that many of those who subscribe to this site did so in order to keep up with Malachi. If you don't want to follow along with my random thoughts and perspectives on life as a wife, mother, and most importantly as a Christian, feel free to remove yourself from the "followers" or unsubscribe or whatever you need to do. Really, I won't take it personally. I promise. You can definitely still follow along with Malachi's story by subscribing to his site--there is a subscription link on the left sidebar. All that to say, thank you for joining our story, but don't feel bad if you only want to keep up with the Malachi side of things ;).

Home Will Have To Wait

Malachi's oxygen needs are still trending upward (mostly). Today when Emerson and I came to visit, he was requiring 40% oxygen while he was awake. Usually when he is in a deep sleep, his heart rate drops and he may require even more. He must consistently be on under 40% to be discharged. All this to say, pray for a miracle. We want our baby home. We are SO CLOSE!

John does his 24-hour shift tomorrow starting at 8:00 am. After he completes that and I do the transport part of my training, we will have finally completed all of the training on our end to go home. Monday's discharge is officially postponed, but it is still possible that he'll be home next week. On Monday, we will be meeting with the cardiology and pulmonary teams to try and get a gameplan together with a new discharge date.

For those of you bringing meals next week... if you want to postpone to another day, that is fine, but if you want to keep things as is the meals will still be greatly appreciated!

a good day

Malachi's blog is in better shape...
Met with a fellow trach parent a new friend who is a few years farther along in this trach journey...
I was accepted into a Blogging for Books program (translation: free books for Marissa!)....
The sun was shining and it was gorgeous!
Miss Emma came to the hospital with me and was completely adorable with the nurses and more importantly with her brother...
For the first time, she told me she wanted to bring Malachi home...
March Madness began, and I even picked a few correct upsets...
Malachi smiled at me...
We're getting close to all being home... under one roof... together.

Negative is a GOOD thing

Blood and urine cultures that were drawn while Chi's heart was acting up during my 24-hour shift came back... NEGATIVE!! This is great news that his body isn't having to actively fight something other than the ear infection. The bad news is, this is how his body will respond to something as "simple" as an ear infection. He is still having episodes of heart arryhthmias, but nothing as fast as his SVT. However, when he sleeps, every now and then his heart rate will drop down to the 50s before bouncing back up to 80, 90, or 100. Cardiology still believes that this is better than heart rates jumping up to the 250-300 range. Understandable. For now, they will not be switching any medications, just keeping an eye on his weight gain and adjusting appropriately. The plan for discharge to home is still MONDAY!

Speaking of weight, Malachi is now tipping the scales at just under 16 POUNDS!! It's a good thing he's so stinkin' long or we'd have quite the chunk on our hands!

We got our first delivery of home supplies the other day--most of it was related to suctioning his trach and our back-up vent stuff. Not going to lie, I was expecting more "supplies". I still need to figure out how to get trach and g-tube dressings. I need someone to inform me of where his prescriptions will be sent and when I can pick them up and all of that. Our massive oxygen tank will be dropped off tomorrow. Still gotta figure out where we're going to put that.

I also spoke with our home nursing agency. They have one nurse to open Malachi's case and one nurse to start training for him. For whatever reason, they will only be here on days at first and then eventually transition to nights. We're not exactly thrilled with this. At first the one nurse they have assigned to us will work five 10-hour shift and then when they hire more nursing for us, she will switch to four 12-hour shifts during the week. Please pray that we get the nurses that fit Malachi's needs and work best for our family from the beginning. It would just be so much easier! Also, pray that the nursing help gets transitioned to nights quickly so that as a family we can adjust to this type of a situation.

On a good note, Emerson was ALL OVER Malachi tonight. It was great! In the beginning, she was pretty leery of all his wires, cords, and tubes--I don't blame her! But now, she is careful not to touch things that she shouldn't, but always wanting to play with his feet or rub his head or hold his hand. She even laid right down there with him on his bed and giving "BIG hugs!" It was so super precious. See for yourself...

Sleeping boy when we arrived...
His sister quickly took over his tumbleform chair and starting playing with his musical therapy instruments...
So precious...
Someone soon started waking up...
and bring toys to his mouth!
and smirk (smile) at Mommy!!
Emma couldn't wait for her turn to get some Chi time, too!
So loving and (mostly) gentle....

(video as promised)

Malachi is moving!

So, we're not quite home YET, but we're getting close. I also figured it was about time to move Malachi's story to it's own entity.

Visit http://malachisharbaugh.blogspot.com/ for future updates regarding our sweet, sweet baby boy.

It's definitely not where I want it, but the tweaking will have to wait until I'm more coherent. It's late!

New Look

Still lots to do to get to where I want it, but Malachi's story has a new home!

Meals

Many people have asked for tangible things that they can do to help us out during this time. Up until now, prayer really has been our only major request. Now that we are transitioning to home, one huge help would be that of providing meals.

By using TakeThemAMeal.com, I have been able to create an online meal schedule/sign-up. This will allow us to organize meals three times a week and not have to worry about multiple people bringing meals on the same day. There is also the ability to write a brief description of what you are bringing so as to avoid a week of the same food.

If you would like to sign up for a meal time, you can access the meal schedule by clicking here or by visiting TakeThemAMeal.com and locating the schedule by last name (Sharbaugh) and password (1027).

If you have any questions, please let me know!

Also, the default length for a meal calendar is 2 months. If we are still receiving interest regarding help in this area, just let me know and I will extend the calendar!

Meals

Many people have asked for tangible things that they can do to help us out during this time. Up until now, prayer really has been our only major request. Now that we are transitioning to home, one huge help would be that of providing meals.

By using TakeThemAMeal.com, I have been able to create an online meal schedule/sign-up. This will allow us to organize meals three times a week and not have to worry about multiple people bringing meals on the same day. There is also the ability to write a brief description of what you are bringing so as to avoid a week of the same food.

If you would like to sign up for a meal time, you can access the meal schedule by clicking here or by visiting TakeThemAMeal.com and locating the schedule by last name (Sharbaugh) and password (1027).

If you have any questions, please let me know!

Also, the default length for a meal calendar is 2 months. If we are still receiving interest regarding help in this area, just let me know and I will extend the calendar!

.......................

Well, the care that Malachi needs is certainly more than one person can do my themselves. Thankfully, there will be more than one person tending to Malachi's needs. On a regular basis, he will have three: myself, John, and an evening nurse. On top of that, he will also have therapists (speech, occupational, and physical) coming to the home as well. I really don't think in the current unit that he is in at the hospital, he is able to really get the attention (and most importantly, the LOVING CARE) that he will receive when we are all home as a family.

There have been some complaints that nursing staff just can't keep up with his secretions. John and I were both able to on our 8-hour shifts, and I was able to on my 24-hour shift. It just requires checking in on him more often than usual and taking the time to really suction while he is coughing it up. It takes that extra bit of care that John and I will put forth as his parents. Instead of just staying on top of it, they are asking us to restart the robinul. Frankly, I don't think more medication is the answer.

We are just ready to have him home so that he can be constantly supervised. He won't simply be dependent on an alarm going off, or time for meds, or time for food for someone to come in and check on him. Regular babies CRY OUT FOR ATTENTION when they are not happy. With the trach, Malachi cannot do that. So at times he is stuck with a dirty diaper or with spit up all over himself until someone comes to his rescue. Now, I know that we won't be perfect caregivers, but we KNOW that God has instilled in us the love and motivation that Malachi requires for the ability to thrive.

Even with his crazy episodes of SVT-like beats and other arrhythmias yesterday, the plan is still for him to come home on MONDAY. He is fighting an ear infection at this point. The echo that was done yesterday did reveal some narrowing of his sano shunt (which was placed at the time of his open heart surgery). The theory is that he is again not receiving as much blood flow as he needs from his heart to his lungs and back again. They are hoping by increasing his sildenafil, that this will improve. If the two main heart meds that he is on (atenolol and digoxin) are unable to adequately control his heart rates and rhythms, then really our only option is to consider riskier heart meds or a surgical repair quicker than anticipated. At this time, none of the cardiologists really want to even entertain those options because of how risky they are for Malachi. Please pray that his current meds can keep his heart under good (enough) control.

I will be taking Miss Emma up to the hospital with me in the morning. Hopefully Malachi will be feeling a little bit better and enjoy a visit from his big sis!

I made it!

Transport will wait for another day.

Now to go home, get to bed, pray for Emma to sleep in!

6:30

Still at the hospital. Hoping that they will continue to let me do all the "normal" meds/feedings/etc stuff that is required on a 24-hour shift. He's too sick at the moment to get him out of bed and put him on transport. Hopefully, they will just let me make that part of it up some other time. The plan is still for me to carryout my shift through 6:00 am tomorrow morning.

Currently, his heart rate is still elevated even with an extra dose of atenolol on board. They are drawing blood and urine cultures to see if his little body is fighting some sort of an infection. He's already on preventative antibiotics as well as another one they just started for a minor ear infection. He is also on some sort of medication to help protect from viruses. We will see. If all of these cultures prove that he's not fighting anything and that it might be a heart issue, there will be talk of changing medications. There is good and bad to that. The good is that this new medication might control his heart rate better and just overall put him in a better state of health until his heart repair coming up in 7 months or so. However, the meds he is on now are the "safe" ones. To switch to the new med, he will have to be completely weaned from his beta blocker and then started up on the new med and closely monitored throughout at the hospital. Obviously, if Malachi is not "stable" enough to come home, then we want him at Riley... BUT, selfishly, we want our little man home!!!

Okay, 15 minute "break" over. Back to Chi's room. Please keep the prayers coming.

Prayer

Malachi has gone into a very irregular rhythm. Heart rates are ranging
from 110 to 250. His blood pressure has dropped to the 50s. He has
started working harder to breathe and requiring 40% oxygen to maintain
his sats around 80%. please pray. He doesn't get to go home unless
this is under control.

quick post

Just a quick post this evening. I've got to be at the hospital by 6:00 am tomorrow to start my 24-hour shift, so I need to GET TO BED!

A couple of not so good things in the realm of Malachi is that he's developed a crazy diaper rash turned yeast infection--not pretty and also painful for his tush. Also, he was tugging at his ears a lot last evening (which I would kind of consider "normal behavior" for him). He had a new nurse and she was thinking he was messing with his left ear enough that he might have an ear infection. She had the doctor take a look at it and we're now on ANOTHER antibiotic to try and fight the ear infection. Also, lately Malachi has been requiring a lot of extra oxygen both asleep and awake--even up to 55% at times. (before this, he has mainly just required some extra help when he sleeps). The pulmonary NP ordered an echo of his heart to be sure he looked fine from a heart standpoint because his lungs seemingly looked okay. We were also reminded today that he will need to only require LESS than 40% to be discharged to home. Come on Malachi!

Like I said, tomorrow is my 24-hour shift. Because I'm planning on being there ALL day, I wanted to try to catch up with some of the different departments handling Malachi's care and upcoming discharge. I should be able to catch cardiology and pulmonology and I should be able to meet with the social worker helping us with all of the paperwork and outpatient follow ups and also the woman helping to get all of our home care nursing situated. I'm really hoping to also be able to meet with neurology. Apparently they had stopped by a couple weeks ago, but neither John or myself was there to speak with them. I really want them to stop the seizure medication that they have him on (he's still vomiting with each dose and it's been two months) as I really do not think it is doing anything for him. I know they want to wait until he's six months old, but I don't want his little body to have horrible withdrawal after being on it longer than he needs. He did have legitimate seizures a while back, but that is when we were unable to keep is oxygen sats over 50%. It's bound to happen when your brain doesn't get the oxygen it requires though.

I definitely want to end with a good note! Malachi was awake for most of our visit today. He LOVES his big sister! It's amazing to watch her with him. She's obviously intimidated by some things, but she loves touching his face or rubbing his head or playing with his feet. I think she gets more smiles out of Chi than anybody! She likes to sing to him and tell me what he's "saying" with his hands--Emma is picking up on her sign language pretty well! Anywho, he hit a "normal baby" developmental milestone today! He actually was reaching for and grabbing his toys. He doesn't do well with it sitting up, but if you have him laying on his side so he doesn't have to work against gravity so much, he actually does it!!

Okay, that's all for now. Wish me luck on my shift!

8 down 24 to go

Today was my turn to be a nurse. Marissa and I have done most if not all training we will be getting from the hospital. And now both of us have completed an 8 hour nursing shift taking care of Malachi at the hospital. When I first learned about these shifts we would have to do before he could come home my first reaction was... Since the nurse wont be needed to actually take care of my child then do I get paid whatever the nurse gets paid for one day? Alas... this is not the case. We/Insurance still pay for a nurse to be there while Marissa and I are the ones actually doing the work. I say this partially in jest because I know they were there to answer questions, observe us, and to help out if any emergency arose. Gladly they weren't needed for any emergencies, because it went pretty well today.
When I first arrived he was on oxygen support of about 35% but his sats were in the mid 90s. He went down to 25% and stayed around 85 for his saturation. I was pleased. This remained basically until he fell asleep after his bath time. The poor little man seems to always puke when he gets all his morning meds. Marissa had thought I should probably just wait till after his 9:00 am feed to do the bath. I am glad I listened to her. His little tummy can't take getting 6 meds at one time.
He was definitely tired after a bath time that he tolerated well. He zonked out and even had a slight moment of apnea. His Respiratory rate dropped, Heart rate dropped, and then therefore his Oxygen Saturation levels dropped. I had to have him at 55% oxygen support to keep his Sats barely above 75. He finally woke up but sadly his condition didn't really change... I was constantly by his bedside trying to do anything I could to help him/make him more comfy. It wasn't until he had his trach collar trial that he improved.
I was a tiny bit nervous when they said they wanted to start. He wasn't doing all that well on the vent, so I figured his doing all the work by himself would make the situation worse. On the contrary, he not only improved while he was awake but also when he slept again with the collar on. He fell asleep and had a more consistent heart and respiratory rate. He didn't go apneic and his sats stay in the mid 80s. It was a blessing to see him sleeping peacefully and not have to worry about whether we was going to stop breathing or about a monitor beeping every few seconds.
As far as I know I "passed." Marissa has her 24 hour shift on Monday and I have mine next Saturday (the weekend before he comes home). We are nervous and excited. We believe that no one will be able to take care of him with the same love and attention will we will give him. We also know we are already really tired and can't really fathom how tired we will get when he comes home.
I can tell you with out a single shred of doubt that any strength we have is not of ourselves. Any inkling of patience we have or tidbit of hope that is in us comes from our great Father, the Lord Jesus Christ. If anyone has appreciated the testimony of my wife and I during this time that is a blessing to us. But anything worthy of honor or appreciation needs to be directed to Christ. Without him Marissa and I both would have given up on each other and Chi already. And I know we would understand even less than we do now about what is going on in our lives. We are weak both in mind and in spirit and need so much help. And the Lord keeps providing for us. I've heard God described as a crutch for those who are too weak to get by without Him. I actually don't find a lot of fault in this assumption. The ones that think of this as a negative thing just don't really understand how broken and weak they are as well. I guess the only thing false about the idea of God being a crutch is that a crutch is a far too weak comparison. He doesn't just prop me up. He lifts me up and carries me. I may lean on Him but He doesn't need me at all to help Him help me like a crutch does.
We are broken... all of us. All have sinned and fallen short of the glory of God. Humanity has been broken and in need on a Savior since Adam and Eve first sinned. And from that moment humanity has blinded themselves from the reality of their brokenness. What do people say about humanity? They say that people are basically good. The Bible says no one is good. That includes me... especially me! From the moment I was born no one had to teach me how to sin. No one had to teach how to put myself and what I want above everyone else. I was born a sinner and quickly proved that to be true.
I am different now though. Not because of anything I did but because of what my Lord and Savior Jesus Christ did on the cross for me. He took the payment or wage I deserved. I had earned that penalty. It was mine and it was sending me straight to Hell. Christ came to Earth to seek out and save the lost, the dying, the condemned. And why? did He think He was finding a hidden treasure? No! He knew he was getting a wretched sinner when He purchased me with His blood. He gave up so much for US. I implore anyone out there who has not already repented of their brokenness, their sins to please let go of any pride that is keeping you from seeing how broken you are, or let go of any guilt of knowing how broken you are but that guilt is making you think you are beyond help. Please repent. Accept what Christ did when he took your place on the cross. Let him lift you and carry you. Marissa and I have been blessed by so many and the only thing we can give back right now is the most amazing thing we could ever give. We want you to know about Christ. If you are curious and want to talk please let either one of us know. If I have confused you more than before you started ready then also please let us know. We would love to talk to anyone about the only way of Salvation from the broken state that is humanity, Jesus Christ.

videos and learning

Proof that Emerson isn't ALWAYS an angel... just mostly. This was how most of dinner went the other day when she missed her nap.

Emerson love, love, LOVES going to the hospital to see her baby brother. A quick clip of our visit this morning. Be warned, I had to abruptly stop the camera due to some upchuck action. I thought about not uploading it, but let's face it, puke out the nose is a Malachi reality.

I spent the night catching up on Revive Our Hearts and the 3/1/10 (You Can Finish the Race) message spoke loud and clear to me. It was just the encouragement that I needed to hear. More importantly, it spurred me on to check my thoughts, attitudes, and motivations regarding our new life with Malachi. For those of you who aren't familiar with us, before Malachi's birth we had planned to move to China as missionaries leaving Summer 2011. Our house had sold two weeks before Malachi was born, only being on the market for three months! We were ready--or so we thought. We were certain that China was our calling. We were certain that God had sold our house so quickly and that we made a profit on the sale as confirmation of us heading in the right direction. On October 27, 2009, God shut the door on that calling. Among other feelings, we were confused. But, God, what do you have planned for us instead??? I guess I kind of removed the "long-term" from the forefront of my mind. We've since been living day by day. I'm learning that God still has purpose for John and I. We KNOW that we would not have been blessed with the tragedies and triumphs that come along with a kid as complex as Malachi if God didn't have a purpose. But what is that purpose? What is that calling?

Your calling and mine is still to testify by our lives and by our witness to the gospel of the grace of God.

God put you here for a purpose... to make a big deal about God, to testify to the gospel of the grace of God.

Nothing in life works out the way we had hoped, but here’s the point: God’s kingdom and God’s purposes are often furthered by His children (that’s us) being willing to accept the imprisonment and afflictions—hardships—if necessary and to glorify Him in and through those circumstances.

So when it’s hard and you respond to it with the grace of God, with joy, with strength and dignity as a woman of God, you are giving the world a right opinion of God. You’re drawing them to the gospel.

Tonight, I got a good idea of what that looks like. I pray that, one day, this would be said of me. A life lived as a testimony of God's grace, a witness to His saving gospel. That I would make a big deal about God. That I would accept the hardships that life with Malachi are sure to bring. That I would be considered a strong, joyful, dignified woman of God. Most importanly, that I would draw people to Christ, my Savior.

video from 3/11/10

regular beats

So nice to walk into Malachi's room and see regular beat after regular beat after regular beat on his monitor (the top strip). Not only was his heart rate hanging near 100, but his oxygen saturation was also perfectly in his 75-85 range. He was awake and mostly content. A good day. John and I asked them to stop the Robinul that they started last week (which we weren't really informed of or asked for our opinion in the first place). Since they had started it, his secretions became too thick to suction them out through his trach, he was requiring more oxygen to keep his sats up, he was sleeping all the time, and he was having a much more irregular heart rhythm. Since the Robinul has been stopped, things have gotten much, much, MUCH better. I need to start trusting my gut instinct and the wisdom God provides to John and I as Malachi's parents.

Gotta love baby feet.
He tolerates me holding him in a sitting position pretty well. I can't wait to have him home and really start letting him explore--the hospital gets pretty old, pretty fast!
Trying to get him to stand up a bit, you can tell that he's definitely NOT used to it. He just needs more practice.

(video is coming)

Jump!

just informed

Emerson doesn't really have an earache. Her "hair is hurting."

an off day

Malachi seems to be doing better from a heart standpoint. He is still requiring more oxygen and sleeping quite a bit (more than usual, I think). I just don't even know what questions to be asking. Knowing that home is on the horizon, I'm currently in the state of mind that something is going to happen to cause his homecoming to be delayed. I'm tired of going to the hospital every day, especially when he's sicker than normal. I'm tired of not being a family of four yet. I feel like even when I accomplish things on my "to do" list that I'm not very productive. I'm flat out tired. Just a down moment.


On a separate note, I wanted to clarify that his "schedule" the other day was specifically his hospital schedule. I'll update again when we get home and into some sort of usual.

"normal" for now

Just got off the phone with Chi's nurse for today. He had a few short runs of SVT through the night, but he's been SVT-free this morning so far! They weren't able to draw enough blood for his labs again this morning, so he's still not perfusing well. Hoping this sorts itself out. Thank you for your prayers.

rough day

Malachi has had better days. Not sure if he's sick or if his meds weren't adjusted soon enough as he's been gaining weight or if this started as a reaction to his immunizations from yesterday or what's going on. With his cares this morning, his heart rate starting hanging out in the 220-240 range. His temp was like 36.7 (a tad high for him, normal 98.6F is 37.0C and Chi usually runs about 36.3C) so they were keeping him cool with ice packs and things to hopefully keep away a high temp as well as help jolt him out of the fast heart rate. It's never encouraging when above his rhythm strip on his monitor it says "irregular HR". Cardiology was hoping that an extra dose of his beta blocker would help completely resolve his little runs of SVT. Well, no such luck. Malachi's heart has a will of its own. The entire pediatric cardiology department cannot come to a single conclusion regarding a definitive name for his "condition." Each cardiologist has their own ideas and the following terms have been thrown around: ectopic atrial tachycardia, supraventricular tachycardia, tachy-brady syndrome, and (my favorite) chaotic atrial rhythm.

When I left the hospital around lunch time, they had just given him a dose of ativan to calm him down. He was getting pretty unruly because they had to stick him four separate times to try to draw up some blood for his labs, but even when they had the needle in his artery (the needle would pulse with his rate) it wouldn't draw up blood. Before then, I had to leave my position holding Chi's legs down to go sit by Emerson because I was about to pass out. I called in every few hours and he slept through most of the day.

It was a blessing to have a nurse normally from the PICU today as they are more used to heart kids and that sort of thing. For instance, if Malachi were to get really sick he would be transferred to the PICU until he got well enough to be back in Infant ICU. It was a good mix of her and then the other nurse that gives Chi some extra attention (she was able to relay some of his "norms" and that sort of thing). Most importantly, I was very thankful that she kept the doctors and cardiology informed all day regarding Malachi's condition and didn't just brush it aside as "that's just the way Malachi is."

John and I stopped up to see him before and after our impromptu/unexpected date (free suite tickets to the pacer game and parking pass). His heart was pretty much still consistently inconsistent. It was still bouncing from 70 to 180--all over the place. I hate how inconsistent it looks on a monitor. Pray for the doctors to have wisdom regarding what we need to do in order to get better control of Malachi's abnormal rhythms. It's stressing his mama out.

I had set out to stay home and get a lot done today, but still trying to relax. Unfortunately, God had other plans and instead of just relying on Him, I became stressed. Hopefully tomorrow is a better day.

A day in the life...

... of Malachi Sharbaugh.

I'll do another "snapshot" schedule when we get into somewhat of a routine at home, but this is the run-down of Malachi's hospital life. Those marked with an ( * ) are things I got to do today.

6:00 A
medication (2 meds)

8:00 A
medication (1 med)

9:00 A
*bathtime, change monitor leads, change bedding, trach care
*medication (8 meds)
*get vitals (temp, resp rate, BP, heart rate, change diaper and weigh)
*weight
*start feeding (lasts one hour)

(first round of meds)

(feeding pump-which we will have at home too)

10:45 A - 11:15 A
*physical therapy (I was a bystander)
-supported sit, head turns, extremity range of motion, sucking on paci (gotten worse), grip, transfer, etc.

11:30 A OUT LIKE A LIGHT!11:45 A
*cardiology rounds

12:30 P
*medication (3 meds)

1:00 P
*start feeding (lasts one hour)
*get vitals (temp, resp rate, BP, heart rate, change diaper and weigh)

(daily medication list)

2:30 P - 3:00 P
*Photo shoot. (So this isn't a normal occurrence. A group from Riley who handle carseat/transport for special needs kids won an award and they need to submit a photo for the awards conference held in Philadelphia. They--I have never met ANYONE in this picture--asked if Malachi could be in their photo. I mean, who can blame 'em? I wasn't aware that I was going to end up in the picture as well though... oh well.
After they finally got what they wanted, one of the occupational therapists stayed behind to get my written consent for the photo and talked to me about the car seat. A few minutes later she handed me the registration card and it was then I found out WE GOT TO KEEP IT!
4:30 P
*medication (1 med)

5:00 P
*trach care
*start feeding (lasts one hour)
*get vitals (temp, resp rate, change diaper and weigh)

6:00 P
medication (2 meds)

8:00 P
medication (1 med)

9:00 P
*medication (4 meds)
*get vitals (temp, resp rate, BP, heart rate, change diaper and weigh)
*start feeding (lasts one hour)

12:00 mid
*medications (2 meds)

1:00 A
*get vitals (temp, resp rate, BP, heart rate, change diaper and weigh)
*start feeding (lasts one hour)

5:00 A
*get vitals (temp, resp rate, BP, heart rate, change diaper and weigh)
*start feeding (lasts one hour)