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CURRENT UPDATES

Non-Profit Foundation in the works!

Please remember these …shirts can be worn for the walk but they are ACTUALLY the representation of the nonprofit organization (still in works) ALL proceeds after cost will go straight to foundation…
This means we most likely won’t change the design much throughout the years but keep the same one for a while.
Only one color will be available and that is white but they WILL be bleach safe, so no worries about stains.
We will also be selling survival bracelets, same as shirts all proceeds after cost will go to foundation
since T’s favorite color is orange, each survival bracelet will be orange plus the option of a different color too, pics of those and shirt design coming soon like hopefully tonight…

July 14th, 2014

OAK GROVE, Mo. — A farming accident claimed the life of an Oak Grove man over the weekend. Fifty-eight-year-old Rick Timm died Friday evening while working on a baler.

It happened on East Howell Road at about 6:30 on Friday night. Family members say Timm loved two things: His wife Jacque, and tinkering on his tractor.

That night he was working on his tractor when the baler killed him.

“He loved this,” Jacque said as she looked around the small farm. Day after day, year after year, Timm spent his free time on the farm.

“This was, I mean it is so tranquil. And he built an arena,” Jacque explained.

From building a chicken coop with windows, an arena for his grandkids or stone steps for his wife, family says his heart was always with family on the farm.

“This was where their world was,” said Timm’s daughter Christy Molby.

“It was like, I never thought I would lose him this young,” Jacque said.

After spending his day at work in IT for the Blue Springs School District, Timm spent Friday evening raking the pasture.
Once complete, he hooked the baler up to the tractor, his wife said he never made it in.

“He died doing what he loved best, which was putzing on his tractor,” Jacque said.

Family says while oiling the chains underneath the baler, the lift fell, instantly taking Timm’s life.

“He loved this place. He loved my mom. He told me that if all he had was mom, he still had everything,” Christy said.

It was his wife of 30 years who found him.

“He would tell me we were gonna live till we were 100, but I’d have to live until 101 because I was a year older,” she said.

Taken too soon, Jacque says she doesn’t question what happened. Now everywhere she looks, there’s a memory about the man who loved her and loved his farm.

“He was my best friend, the love of my life and I’m so blessed to have had almost 30 years with the best man I’ve ever known,” Jacque said.

Jacque said Timm was an organ donor. She said someone received his eyes, something she has found peace in as she now knows someone is seeing the world as he did.

Memorial services will be held at 7:00 p.m. Thursday, July 17th at First Baptist Church, 1405 W. Main Street in Blue Springs. The family will receive friends from 4:00 p.m. until service time at the church.

A fund is being set up in Timm’s name at Community America Credit Union.

July 11th, 2014

Tristans Papa “Rick Timm” passed away in a tragic farming accident.

Here is an excerpt from facebook posts:

We lost part of ourselves; Rick Timm was taken from us too soon, he was the light the hope and the way. He was our role model, our mentor, loving husband, father and grandfather. One of the few good men left in this GOD forsaken world. I know that I could never begin to understand the lords grand design, but I have to ask, once again… WHY? Why are children born with disabilities, why do children under the age of innocence, suddenly develop a terminal illness? Are they somehow being punished, disciplined for their parents actions. I cant help feeling personally responsible for Tristan Molby ‘s heart condition, I don’t understand why all of the good people are taken from us and the greedy hypocritical, power hungry individuals succeed. I know that GOD is present performing miracles; we have witnessed this first hand. Rick was involved in a tragic accident yesterday working on his farm, he was one year away from retirement and worked tirelessly his entire life. He always took the selfless view and just knew when to give the right amount of support. Rick was a simple man that was emotionally gifted; he was passive yet supporting, his support and reassuring hugs were enough to overcome everything, he is the light shining through the valley, he guides everyone that his soul touches, giving them hope and reassuring that they can make this journey. I have to believe that God has bigger plans for Rick and that he has been chosen…We love you Rick 
Please pray for our family 
~God Bless

Christy Nickerson Molby feeling broken

How does one recover from the unimaginable? With all my family has been through it always seemed that things would be okay.

My world was shattered last night at 7:03pm. I feel like everything inside me is broken
That was the moment Sean came upstairs, while on the phone with my mom. That is the moment he told me my dad was dead..

I am not sure what words I should be saying right now other than the world is now a darker place without him in it. He was everything. He wasnt the dad given to me he was the one I chose. The one that chose me. He was laughter and light. He was generousity and kindness. He never met a stranger. And everyone that knew him was a better person for it.

Right now I feel like my heart is in pieces. And life will never be the same. He was my mom’s soul mate. and everyones best friend.

I dont get on FB anymore or very rarely… but I dont know how else..what else to do. I dont know how our family will go on. He just always knew what to do. He always knew just when I needed to be held or hugged. He just was

The only comfort we seem to have is knowing that even though it was a horrendously tragic accident- he didnt suffer. It was instant. And even though we are all trying to figure out what we could do. we keep being told it would not have mattered. and those are the most helpless words one can ever hear.

Our journey with Tristan has taught us so much. But even that never prepared me for the pain I feel now.

Please pray for my mom, for my family, for me. Pray for my siblings and his grandkids. Pray for evey person that knew him.. because this death runs far and deep. There are so many he touched and no one he wasnt willing to help.

I love you daddy…so much- I dont know how to go on. i dont know how mom is going to go on. we just love you so so very much

Thursday Feb. 13th, 2014

I don’t exactly know where to begin, there has just been so much that has happened since the last post For us 2014 was suppose to be a fresh start after a rough and rocky 2013. Sadly that has not been the case. Now it hasn’t been all bad of course there has still been a lot of good but there has still been a lot that has happened in the short 44 days of 2014.

First of all I want everyone to know that Tristan is doing well. He had a rough recovery after his Fontan but we made it through. He was able to finally start preschool, about 8 weeks post op-we had to wait till he could get his flu shot and then started him a few days after that. So his first official day was Monday, October 28th but he is still trying to figure out if he likes or not LOL.. He is great being there once he get there but doesn’t like having to leave mommy at home while he goes to school and he absolutely doesn’t like his therapies-so Mondays and Tuesdays are hard for him, but he loves his teacher and the aides and even has a best friend from his class. He rides the bus and for the most part enjoys the experience, but like I said just still fighting being a mommy’s boy and leaving her to go to school. He is now potty trained which started out with fear it would NOT happen but as usually he surprised us all and completely potty trained himself in 3 ½ days. Since October 26th he has been accident free except for two accidents which were in his sleep. I tell you this kid amazes us hourly!! And..he is FINALLY  weaned off his binky-that was a bit trickier and mostly just luck. He was always losing them so we finally told him if he couldn’t find it he couldn’t have it because the binky fairy doesn’t let us see them anymore… lol, he finally started sleeping fine without them. Every once in a while he finds an old one but doesn’t really use it he mostly just likes holding it and having it with him.

Unfortunately, we all have been passing around multiple sicknesses since November and it has been tiring, Tristan has not been immune to these illnesses however he has recovered quicker than most of us. He is still hanging on to a bad cough, which is scary enough. We recently lost a beautiful little boy whom had the same condition, was the same age and even lived in the Kansas City Area as Tristan. He went to the emergency room with a cough similar to Tristan’s and didn’t get to come home. It is really difficult knowing so many that have lost their babies to a Congenital Heart Defect and we can’t help this feeling of desperation and uncertainty knowing that we could lose our baby boy at any time. Bacteria and Viruses are everywhere, we cannot see them or avoid them, exposure is quite literally a timing issue. This is what passes through my mind with every handshake, every event, every time I travel through an International Airport, every day that Tristan attends school or goes to a birthday party. It is for this reason that he saw the inside of a department and grocery store for the first time at the age of 3 ½, you should have seen his face J as he was in total awe! So what is the answer? We can’t keep him in isolation forever; school is one of the worst places to pass around illnesses.

As we try to slowly regain some normalcy in our lives by integrating Tristan’s exposure to the elements and the outside world, we keep getting knocked back down; thankfully Tristan is doing good and has been the glue that is helping us through this whole mess. One week before Conklin National Convention (for me that means a week of travel) my wife; Christy started out with the stomach flu that quickly turned in to repeated trips to the hospital, multiple CT Scans, lithotripsy and finally surgery to remove four large kidney stones. I feel terrible for her having to go through all of this, me missing so much work, using all of my available time (already) and then leaving her to recover from surgery and also take care of the children for a week. Don’t get me wrong, I really enjoy seeing everybody that I work with throughout the year, helping others to achieve their goals are highlights of my job that I love! I just hate doing that under such stressful situations. There are several other compounding factors that happened during this week, some of which I am not going to discuss on this forum. Others that need to be discussed, during the CT Scans, they discovered a small cyst on my wife’s liver and a small nodule on her lung as well. After meeting with her primary doctor, we were not so concerned about these. However, Christy also noticed a lump below one of her breasts and this is of grave concern. We scheduled a Mammogram and an ultrasound to access this abnormality, and that took place yesterday 2/12/14. The results were less than optimal and the look alone on the physicians; face struck fear into both of us. This concerning look was soon followed by “we are going to have to perform a biopsy”. They say that God only hands out what you handle, and we are both desperately trying to understand this. Dear Lord, WE CAN’T HANDLE ANYMORE! Please help us with this burden; please help us understand why some children have to be born into immediate and terminal hospital care? Why…. Dear Lord, why??? 2014 was going to be a new beginning for us, Tristan is successfully past his long awaited Fontan procedure, and now we have to deal with the dreaded “C” word! Why??

I am trying to remain thankful and positive, I really am. Just having a difficult time understanding the why?

I know that this was a long rant about our family and less about Tristan, for that I offer my apologies. If you are still reading this please honor my wishes by sharing to your time line and leaving a comment either to help raise awareness for CHD’s or Brest Cancer. Thank you for all of your prayers and God Bless.

~Sean Molby

Tuesday December 3rd

Short Holiday Update

I want to send out a very special thank you to everyone as we approach the holiday season we are grateful for many things most of which are things we overlook every day. Tristan is doing fantastic since surgery he is now potty trained and has started preschool, all of this happened 6 weeks post op so that was kind of a trying time for him and very stressful. We are still working on weaning his binky, which has been his security blanket since the beginning. However he’s doing very well at school and is now looking forward to attending every day. Riding on the school bus is still a challenge but he is adapting every day with routine. All of this is very exciting for us as we are starting to get a little bit of normalcy back into our lives. Financially this has been one of the toughest years on our family, yet we are thankful for all of the blessings that you have bestowed. As we move forward, Christmas this year will be spent learning and spending time with family and less about presents. Please take this time to remember whats most important in your life, be thankful for what you have and take nothing for granted. ~Blessings to all

Thursday Oct. 10th

Brief Update: Tristans follow up visit yesterday went extremely well, our next visit will be in 6 weeks! Full Update to follow soon>>> …

Saturday, September 28th, 2013 | 18 Days Post op

HOLY COW…. LOL Talk about a whirlwind of a weekend and week. I am not even sure if I can include all that transpired.. Simply because the past several days, especially including T’s last few days in the hospital, have been one scary, crazy, insanely fun rollercoaster ride…  I will start off with WE ARE HOME!!!!! It took a day of arguing, debating, huge discussions, and predicting scenarios before that miracle happened, and let me just say a miracle it kind of was! But of course what else can you expect from our Super Heart Warrior T!!!

I know we are a week behind on an update and the most I can say is we are so sorry for those of you that do not have Facebook as we did a few simple updates there, but we were literally too exhausted to do much else. So for all of you that have been on pins and needles, I apologize we were not trying to be insensitive it has just been insane the past week, as you will soon learn. I will try to do my best to play catch up and I will start from our last post here.

So the last week of T’s hospitalization was a constant up and down mess. T had fluid covering the lower half of his right lung which, for anyone; but especially a heart kiddo AND one that is so soon post operative, is a TERRIFYING thing… just some of the complications and dangers of that is kidney failure, pneumonia, congestive heart failure, and dry drowning-the majority of these would be fatal, so getting the fluid out is an ABSOLUTE MUST!! In order to do that we had to hit Tristan hard with diuretics, which are good cause they dry up the excess (and sometimes the necessary) fluid in the body. BUT diuretics have their own downfalls, those being: losing too much fluid therefore causing dehydration, depleting the body of the necessary electrolytes that help it function, and dramatic loss of weight. In T’s case the diuretics did their job, we FINALLY after 9 days of massive diuretics got the fluid out of T’s lungs BUT in doing so dangerously depleted his body of sodium, chloride, and potassium. His sodium levels got as low as 127, his chloride was 93L and his potassium went to under 2.7 for those that don’t know. THAT IS NOT GOOD! The optimal numbers for these are; sodium 135-140 and potassium should be 3.9-4.5 so this has been our battle. Hanging in the balance; our daily chest x-ray, sodium, chloride, potassium levels, and then morning rounds to discuss the progress and what tweaks need to be made. I’m sure this sounds all too familiar with other heart families that have gone through this procedure.

Finally getting the fluid out of T’s lungs turned out to be the easier part; getting his electrolytes back in good numbers has been a whole other ordeal… The sodium chloride tastes 100X worse than a mouth full of ocean water and the potassium chloride is a very bitter gritty med and BOTH of them cause severe stomach upset. ( I know because I tasted them-I do that with all his meds). So after a couple of days of giving T his meds orally, watching him throw up constantly, and then stop eating and drinking, we had to make the hardest decision in a long time…to drop an NG to give T his meds for him. Some may think this would have been an easy choice but it was far from it. We had to work extremely hard and be even more diligent to get that NG tube out of T’s nose as a baby AND keep him from undergoing another surgery for a GTube-it is a huge thing that T does not have a G-Tube as prpoably close to 95% of HLHS and heart babies in general get them. Anyways, we chose to do this, as Tristan had lost close to 7 pounds in less than a week, a lot was fluid but not all, he was also having constant emeisises from gagging on the medication. He started to not eat or drink, in fact did VERY little for over two days and would start screaming whenever meds where due, it didn’t help that he was being giving anywhere from 1-4 meds EVERY hour from 4AM to midnight. So dropping an NG would allow him to not have to taste the meds or have the constant taste of them in his mouth so he would “hopefully” start eating again, give him a chance to sleep, and just give him a break in general. Aside from continuing to throw up from gagging on the NG tube, the tube itself worked the way we had hoped. He started eating and drinking again and after a couple of days we slowly started adding back in meds one at a time orally. Now the problem with this was all the vomiting and reinserting the NG tube caused a lot of irritation and swelling to Tristan’s throat and nasal passages causing a slight case of larigngitis and a dry cough.  Due to the constant cough and then the addition of these strange hives shown in an earlier post, the doctors decided to do what is called RVP (respiratory virus  panel) this tests for all known…. RV’s. He tested positive for Para Influenza, and where he contracted this remains a mystery. It took nearly three days to find the lucky combo of drugs to help this bizarre rash. All the while we had been put in isolation so as not to possibly infect the other patients on the floor. It took several more days but T eventually responding well to the 3 different antihistamines/allergy medications he was put on and the hydrocortisone cream. BUT we were all going slightly insane from being trapped in a 10X10 cell (as we so lovely ended up calling our room) At this point T’s xrays were good, his echo was quote “textbook perfect” and his labs had FINALLY came back normal-well close to normal for two days in a row, but T always needs to throw in a twist and this time it was his usual, we lost a 4th IV in less than a week. Vascular was called to get labs and after a few tries (with ultrasound) and no luck we were told T had NO usable veins to place another IV and only one possibly two that they could draw blood from. Luckily we were able to get blood from that one vein two days in a row but on the 2nd day a trifecta of possibilities came into play that made a few of the doctors nervous. So they wanted another lab pulled to do a whole blood test to check his levels to make sure it was 1-20130914_162108correct…..down came vascular again to try and pull from our lucky vein, only it finally gave and was lucky no more. This put everyone in a very difficult place. Sean and I were frustrated because Tristan was like one huge bruise. His arms and legs were black and blue from all the IV’s and blown veins, he was turning into a frantic mess, screaming anytime anyone that came in the room. He refused to let any of the nurses, doctors, or care assistance touch him and he was TRAPPED in the room and all he wanted was to go home. He would cry constantly “I am done” “I want to go home” “Please lets just go home” It was utterly heartbreaking. So this mamma put on her bear gloves and did what I am known to do best. I argued…. and argued, and debated and argued and refused and debated and then argued some more. Sean did the same. In fact it was an entire day of going back and forth and no one willing to give in, but T was done, the lab they wanted was redundant. They only wanted it to double check, cause it just seemed too perfect that everything went right… Basically T’s potassium doubled and finally went in the really good zone. A few of the Dr’s thought that ‘maybe’ the blood had hemalized (clotted) and that was the reason for wanting a 2nd test-no other reason but that they couldn’t believe everything had worked out so perfectly; everything being- he had been put on aldectone 2 ½ days prior, which is a diuretic known to help hold onto potassium, we had just finished with his NG so he had gotten several complete doses of his potassium plus we had added TONS of potassium rich foods, his lab draws that morning had gone smoother than any before, six witnesses saw a perfect draw providing a near perfect tube of blood so perfect they got twice as much as needed and didn’t even need to use the whole first tube, and lab was called the remaining blood in the originally tested tube was STILL NOT hemalized which meant it was 99% probability the first test wasn’t either… With those odds we were not going to let them continue to try and poke around in his already depleted veins just to ‘double check’ especially when his labs had been good for two days and this was the third. Longer story a bit shorter, our attending came to the rescue and agreed that the test was good. We were just going to take him off the aldactone and do labs in two days and check all his levels again. If they were still good we would go home, this was good news but somewhat disheartening as we were still in isolation and Tristan was feeling better and getting very restless not being able to leave the room. So when the resident came in again we thought it was time argue some more but she ended up giving us the best news ever… they decided that it was ridiculous that he be kept for a lab two days from now so we were asked if we wanted to go home…… I have never packed so fast in my life LOL.

1-20130915_133627This may sound strange but Tristan’s immune system is weakened because of the surgery and not eating, the hives are his response to the virus. Yes an allergic reaction to a virus, so here we are 7 days later and his hives are almost all gone and he is down to just Benadryl. He has been showing some abdominal distension usually at night, and his lungs have been sounding kinda “junky” with some minor wheezing going on. So after long deliberation with the doctors, everyone agreed that it would be in his best interest to go home and return periodically for follow up x-rays and lab work. They always heal better at home… Tristan had his first return visit a few days later, both of us were really concerned about this visit, not only because of the way his lungs sounded but we were also concerned about disrupting the family again, it has been very difficult to split everyone up while in the hospital. Sean just started back to work, Ella and Briah were so excited to be home, finally our family was back together for a moment and the thought of setbacks and being readmitted were horrifying.  CMH had forewarned us that if both the x-ray and the labs did not come back favorable that they would have to readmit him. Tristans X-Ray came back with fluid on the lung, and his labs came back perfect. THANK YOU GOD! They decided to continue monitoring him through outpatient and added one dosage of Lasix to his regimen to help balance the fluid on his lung.

So to end on a positive note we are now at home, back to school and work, making trips back and forth to CMH for continued testing.  We will post another update as soon as anything changes or when we have results back from his next visit.

I would like to say thank you again for all of your prayers and support, as you have seen with the viral outbreak, Tristan immune system is suppressed and it’s the little things that affect him in a big way. As he continues to heal, his O2 saturations should increase to 98 – 100% and hopefully as we introduce him to the world for the first time, he will be able to remain our strong little HLHS Warrior.  ~Blessingslogo_lg

Please help us reach our goal for Tristans “gofundme” project, and thank you for liking and sharing to your Facebook Timeline.


Saturday, September 21, 2013 | Day 11 Post Op

“This is the new issue we are dealing with. These are hives that are now covering T from head to toe but mostly only on his back. It is from an allergic reaction 1238713_10151940306608487_351922562_nbut we are not sure from what so all day yesterday through last night and most of today he has been completely miserable. Screaming from pain and itching  uncontrollably..we lost his IV- the line blew and vascular came up..there are no more useable veins in his arms so no new IV but he really needs one..we were able to get blood for labs (barely) and the possibilities of a PIC line has been brought up but that is not an optimal option… been a really rough week and a REALLY crappy start to the weekend. Both the girls are struggling and well it’s just not been the best of weeks..not the worst but not good…please PLEASE keep him and the girls in prayers we need them a lot now. Sean has to go back to work Monday. . We pushed our limit financially1230037_10151940306793487_766473758_n with him taking off last week.. so up here by ourselves next week my sis is bring the girls up and we really need that but then they go back and we stay here missing my girls.. missing our home THIS JUST ALL SUCKS!” ~Christy

 


Friday, September 20 2013

10 Days Post Fontan

Super rough couple of days, overall Tristan is making desirable progress, just having a tough time. Here are some of the highlights…

 

 

  • Kept fluid off lungs so we pulled blakes (Yeah the chest tubes are out!!!)
  • Sodium/Pot Up, but levels still low-potassium is still dangerously low
  • Added Zofran for nausea
  • Not eating or drinking with excessive vomitting
  • Dropped an NG tube- for meds only-was really hard to do because we worked so hard to get him off 3 years ago andkeep him Gtube free.
  • he has gone from 16.2 kg on surgery day to 14.8 (lost a lot of weight, mostly fluids)
  • not sleeping good at all so we also added his ferrous sulfate back in
  • he is literally taking meds every hour from 4AM – midnight

Tristans Schedule:

4am IV-Zofran and IV pull for labs

5AM Tylenol-oral and then xrays

6AM IV antibiotics  and oral mylicon

7AM  vitals check breakfast

8AM IV lasix, oral sodium chloride

9AM oral prevacid and enalapril and potassium chloride

10am oral miralax and Tylenol ROUNDS

11AM mylicon

Noon- oral aspirin IV Zofran and oral sodium chloride

1pm- lunch vitals check

2pm IV anitibiotics and oral ferrous sulfate

3pm oral Tylenol

4pm oral Zyrtec IV lasix and oral sodium chloride

5pmMylicon

6pm dinner

7pmoral dulcolax- vitals check

8pm IV Zofran oral sodium chloride and Tylenol

9pm oral enalapril and prevacid and oral potassium chloride

10pm IV antibiotics and oral Mylicon

11pm vitals check-weight check

Midnight IV lasix Kabbo_Slider_1

You might think it would be easy and we just get to watch the nurses do it all but this is our sick child.. he wants us just like your sick/ill children prefer you over a care giver or close relative.. T doesn’t let the nurses do much of anything.. we give his meds, change his diapers, bath him, and often end up having to be the ones to get his vitals as he freaks when anyone else touches or comes near him.. the only thing we cannot do is the IV stuff but even then we are the ones helping to hold him down so they can get to his IV without him pulling it out or it accidently blowing because he is being uncooperative.

He misses home, he misses his new bed- so graciously given by Shelly and Mitch Black, he misses his sisters, he misses his dogs, he misses his yard, he misses just getting to be him..he just misses being happy Tristan 🙁

Please continue your prayers for Tristan, there has been a viral outbreak in the hospital and we are super concerned that T may get this. Just the testing requires 5-7 day isolation period, which means that Sean would have to leave the hospital and I would be confined to our room and would not bo allowed to leave. This is super contagious and could bring T down. Please continue to pray; pray that he does not contract this illness and that we can be discharged soon.

~Blessings, Sean & Christy Molby


 

Wednesday, September 18th, 2013

Eight Days Post Fontan

Emotional exhaustion; is a chronic state of physical and emotional depletion that results from excessive personal demands and continuous stress.[1]

And might I add lack of sleep! I’m sure that every heart mom and dad has endured this at one point or another throughout their hospital stays. We were at that point yesterday, my apologies for the delay in posting an update, we just had nothing left. As you already know Tristan’s Sodium is low, we are having difficulties getting him to eat anything with salt on it. Who knew that he didn’t like salt? We don’t usually add salt to his meals, so we have never had this issue or any problems getting T to eat; anyway the aversions to sodium have also incurred difficulty with administering his regular oral medications. He is now Q4 (every 4hrs) on vitals, except at night where he can sleep un interrupted from midnight to 5:00 am when he gets his morning x-ray and blood drawn for lab work. So from 5AM to Midnight, the poor little guy is constantly being pricked and prodded, hooked up to monitors, disconnected from monitors, IV meds, oral meds and in between we are trying to shove insanely salted food down his throat. He is only allowed 4oz of water a day; his liquids are to be gatorade, coffee, juice anything except water. The problem arises when we are trying to dilute his Sodium Chloride with these drinks, he catches on and you can see this downward spiral that has been occurring over the past few days. So…. with that in mind, T is just done, as soon as someone walks into the room he starts screaming “ I want Mommy, I Want Daddy!” or  “I want to watch this for a minute”, “I’m Done!, I’m Done”  It’s kind of comical to see what he’s going to come up with next as a deterrent.

Ever heard of the phrase “Don’t rub salt into the wound”?  And that’s literally what we as parents  feel like we are doing, Tristan responds to us better than the nurses, and we will do anything to aid in his comfort, so for now we are administering all of his oral medications, fluids, etc… basically everything except his IV work. So where does “rubbing salt in the wound” come into play? When Tristan is so lethargic that he cannot get out of bed, walk down to the playroom, ride in his car or anything that he was doing 20 hours post op, and when his medications continue to go up in quantity, dosage and frequency and we don’t see much progress. Yesterday Tristan was hit hard Q3 IV Lasix, and Metolazone, this was effective in removing 1 full liter of fluid! And his lungs were much improved over yesterday. So I guess we are seeing a little progress  CXR 9 18as long as we can

maintain a constant state of dehydration, were good! Well except for the low sodium and now potassium levels! Yes this is all part of the delicate balance, as we continue to pull fluids from little King T, we are also pulling his sodium and potassium levels down. So now back to more of the same. If we are not successful in getting these levels up, he will be forced to go on IV Sodium and Potassium. This sounds great right? Except with this addition also comes more fluid that we are working so fervently to remove. While I am confident that Tristan will eventually pull through this, for now… we take baby steps, one day at a time. This in turn is the struggle for the Fontan Procedure, I have read about many Fontan recoveries with kiddos and Parents going through the exact same scenarios, no matter how you prepare yourself psychologically, this process still wears you down until you reach Emotional Exhaustion.

~Sean Molby

[1] From Wikipedia, the free encyclopedia

 


Monday September 16th, 2013

9:00 PM Six days Post Fontan

We had a better day today, the fluid on his lung was reduced from yesterday and his sodium levels are up in the range where they want them. Tristan was able to sleep last night, and that helped more than anything. We should get more sleep tonight, as they will not check his vitals until morning. I never thought that getting your child to eat sodium would be difficult, looking for some creative ideas???? Any suggestions please leave a comment. We finally had a good BM today, so everything is starting to move again and the healing continues. We were able to go down to the new Chapel today and visit the “Prayer Wall” , this is a neat brick face wall where you can write down your prayer requests and leave them in the cracks of the wall so that others may visit and pray. Tristan picked one out, we prayed and he put it back. It was really cute and he ended with a really loud “AMEN”. Thanks bunches to the wonderful Joy Mountjoy for the visit and goodies. . T has eaten nearly 1/4 of the box already LOL.. and I have hidden the jelly beans- they are awesome and so are you. Please thank Ross for letting me steal you for a few hours   but that he needs to get used to sharing a bit better LOL luv ya girl thanks for everything! …
And we got to see the fabulous Stephanie Myers and the awesome Mr Brayden,  who unfortunately are now trapped here too.. but it was nice visiting Steph. When Brayden is feeling up to it he can come down and play cars with T..
we will be praying for you guys tomorrow

And now… THANK YOU ALL for the continued prayers. It means the world

Overall, today was a much better day than Sat. and Sunday, however we still have a fluid over ½ of his right lung and this is our biggest concern right now.

 

 

Sunday September 15th, 2013

9:30 pm  Day 5 Post Fontan

Well it has been a REALLY rough, long, and exhausting weekend.  And we are really sorry for not keeping the updates as current as we would have liked. We are all TIRED, grumpy, and super ready to go home! No one is getting much sleep and the sleep we are getting is not good. Plus 6 days of hospital cafeteria food is enough to drive anyone insane.
Things took a slight turn for the worse yesterday (Saturday) morning and we have been busy just trying to get T back to where he was at. Yesterday’s x-ray showed some excess fluid in his right lower lung-which is bad, so they upped his lasix (diuretic) from 2X a day to 3X a day in hopes to pull that fluid off. In addition to that, T has been having a really difficult time keeping food down and currently he freaks out whenever any hospital personnel walk in the door- although he did give a smile to Dr. O’Brien when he came in to say hi this morning; but this makes vital checks and meds a very difficult thing to accomplish. HE has an extremely bad cough that is not as productive as we would like. His potassium levels are really good but his sodium chloride is EXTREMELY low so they had to put him on a new med…basically liquid salt that tastes super disgusting, to help raise it. All of this is pretty normal for most post Fontan kids..its a difficult balance between fluid drainage, keeping fluid off the lungs, keeping electrolytes at acceptable levels and keeping food down cause their tummies are raw from all the meds and stuff. And they are just old enough this time to understand, know, and remember, how much it sucks to be here in the hospital. So Tristan is very grumpy, and doesn’t give out too many smiles, and hasn’t given really any hugs or kisses, which is hard to deal with as he is always such a happy little boy. He has just been poked, prodded, checked, and rechecked too much for his taste on this visit and he is just ready for it all to be done.

We had high hopes for better result today but we got worse. His sodium chloride levels are even lower today and the fluid in his lungs has increased. To make matters worse he pulled out one of his IV’s this morning and the other one somehow also got pulled out this afternoon, so poor baby had to be strapped down and held by four of us so they could try to get access..It was really sad to not only watch but have to participate in..He has not allowed me out of his sight, and has a really hard time anytime daddy leaves too so we have to be the ones also helping to hold him down as it actually makes him a little more cooperative (a little).. It took them two sticks to get a new line in so it wasn’t too bad but the super good news about that is it is in a larger vessel and since it is new they should be able to draw his labs from it so that is one less thing we have to fight with every morning- not sure if we told everyone but the IV access we had was for intake only they were too old and weak to pull from so he has had to have daily labs drawn L it has been horrible and his poor little arms and legs are sore and bruised and just pitiful looking.

Good news was we got to see Mawga and Papa (my parents), and Nikki Bri, Ella, and Jake, and also his other Papa (sean’s dad) yesterday and had a really good visit. I miss the girls soooooooooo MUCH and it was so hard saying goodby when it was time to leave- I’ll admit I did break down and cry on the walk back up to the room (I walked them down to the parking garage) also want to say a HUGE thanks to my parents for stopping by the house and getting all of T’s gifts and goodies that everyone has so graciously sent. And for also bringing my blankie up..it has made T really happy! But like I said the sad part was having to say goodbye to everyone, T started crying when they left saying “I want to go home” “I want to sleep in my bed” so be praying we can get this fluid off his lungs and get his labs back to normal so we can start thinking about going home!!

We also got a awesome visit today from one of the most amazing woman I know MS. Lori Schmoll, her mamma, and precious Araianna..who I have to admit I had a hard time letting leave. Love that woman so much. For those that don’t know her she is also a heart mommy and her sweet Izzy B also has HLHS, sadly she went to the angels after her second surgery. Her mamma Lori is the most amazing person I know and she is one of the best people in the world to have as a friend! And thank you Lori for bringing up MINT toothpaste..my mouth and taste buds are very happy for that LOL and thanks for the money to go out and get something to eat, you are such a doll and I was so glad I got to meet your mamma- and I am not lying I may end up kidnapping Miss Arianna as soon as we are outta here.

Also, THANK YOU to everyone that has donated or sent gifts to Mr Tristan.. He has been much more cooperative and HAPPY since we started letting him pick things out after being a good boy. He has so far gotten his Spiderman sheets-which he LOVED, his Dinosaur bedding- also another LOVE, he has picked out his CARS tray and several books and coloring stuff. His flashlight/nightlight Dinosaur and his Dino pillow pal and bubbles… I know who sent some of the stuff but if everyone could private message me or Sean and let me know what you sent I would be eternally grateful, As things are so crazy here the cards got all put together and so I really am not sure who sent/gave what and I would like to be able to send out some thankyou’s…

For now we are going to start trying to get ready for bed..we decided to start fairly early tonight, as xray is at 4AM and labs are usually at 5AM so we are in hopes that we can get as much sleep as possible (as much as a joke as that will end up being LOL I am actually serious) Thanks for all the prayers, love, and concern. We definitely still need it as we are not out of the woods..I guess I should mention if we can’t get this fluid off, well its just REALLY important we get it out of his lungs ASAP..

~Christy

Sunday September 15th, 2013 Day 5 Post Fontan

Prayers  Needed! The fluid on his lung is getting worse, we have had a very bad night, Tristan pulled one of his IV’s out, he has thrown up several times, he is almost to the point of screaming whenever a nurse or care assistant walks in the room. He has had enough! As tensions rise, mom and dad lose sleep, Tristan is restless and irritable and we all just want to go home.  We are trying to add salt to his diet to balance low electrolytes, and pull excess fluid off his lungs with diuretics. Yes his daily

 

X-Ray keeps getting worse. I will post a full update later on tonight, just please know that we need more prayers for Tristan.

~Sean Molby

 

09/13/2013 1:45 PM – Day Three Post Fontan

Tristan is now Q4 on vitals, which means that he does not have to be hooked up to the monitors, this also means that we can go for walks down to the playroom, or just get up and move around if he is feeling up to it. So we tried walking down to the playroom, however Tristan is so weak he didn’t want to play, just kept giving us his somber, evil look. You know the one that screams “why don’t you take me out of here?” He just does not understand why everything hurts and why we can’t go home. His drainage tubes are still draining clear @ 85 mil/24 hour period; typically they like to be in the mid 40’s over a 24 hours period. Question for any heart moms and dads that have been through the Fontan; How long before your child’s chest tubes were pulled? Feel free to chime in and leave a reply below. I am working on 2 hours of sleep, so if I start rambling that would be why. We had to wake up very early to wait in line for his mornings X-Ray, which is the down side to leaving the PICU. In the PICU they bring the X-Ray to you, its ok Tristan enjoyed the wagon ride and a change of scenery. By the way his X-Ray looked great! He still has a congested sounding upper airway but lungs are clear. Oh yeah, I almost forgot Lab was able to draw blood on the first stick and we did not have to call Vascular or IR to help with this J Medically Tristan has had a good morning, personally he looks so sad and is just done! I know this is only short term and we will be home soon with our brave little soldier running around the back yard with O2 saturations at 100%

Tristan’s (“Fontan”) Journey; A short video documentary walking through T’s path before, during and life after the Fontan. This is coming soon!

My goal for this inspirational documentary would be to raise awareness and give some hope to those in the heart community that have walked a similar path. While everyone’s experience is unique, Tristan’s story has changed the medical statistics at CMH and other hospitals across the nation and around the world. Walking along side Tristan has been ever so challenging and even more rewarding. This experience has Re-defined our lives forever and I look forward to sharing. Behold the Power of Prayer

 

09/12/2013 9:30 PM – Two Days Post Fontan

Yesterday we were praying for Pee!, Tristan went all night without peeing, and just as we were thinking that he would have to have the “Foley” reinserted to drain his bladder, he finally let loose! Yay… He went this morning right before I had to leave to do an inspection, so that was a relief.  As far as his meds go, we stopped the Morphine last night at 7pm, and decided against the Codeine too. Tristan has such a high tolerance for pain it’s sometime hard to read him. We elected to manage his pain with Scheduled Toradol (Strong version of Ibuprofen) and Tylenol as needed; he seems to be doing ok with that. Tristan had a real difficult time weaning off of the narcotics from previous surgeries. So any time we can stay away from narcotics the quicker the recovery! Tristan has not really eaten and kept it down; this type of behavior is typical for T post surgery, so not too alarmed at this point. He was able to get up and walk around for a little bit today, although he is still very lethargic and weak, I feel Tristan is on the Recovery Fastrack! Dr. O’Brien is very happy with his results thus far.

Tristan had a couple of visitors today including Bobby Carlisle, Elyssa Dewitt, Sherri and Kathy form Woods Chappell United Methodist Church.  This morning they were able to pull labs form his ART Line, and then had to remove it. Currently Tristan only has two IV access lines. We may have to get Vascular up here to pull morning labs? Tristan has always been a very difficult stick and if there were complications quick access would not be available. This is one of the main reasons why a speedy recovery is so important. His “Blakes” (Chest Tubes) are still draining somewhat clear and with moderate volume. On the upside Tristan got to go on a wagon ride up to the “Floor” and move into a new room! So yes we are officially out of the PICU and one step closer to getting out of here!

He also ate this first meal this evening, while not a lot he has kept it down and continues to pee!  So for tonight we are just hanging out trying to comfort him. Both Christy and I are missing our other kids so much, one of the hardest parts about this hospital stay is trying to maintain balance. I’ve said it before and I’m going to say it again: Take nothing for granted and be thankful for what you have! The time we together is so precious and while I try to live everyday by this motto, it is so easy to slip back into your normal routine and forget what’s really important in life! Thank you Mawga and Papa , Tam & Scott for helping with Ella, Briah and Kayia. Thank You Tara, for helping with Duke, and God Bless everyone that is supporting and praying for our family. We are feeling the healing prayers; while Tristan still has a long road to recovery ahead of him he is making remarkable progress.  Please continue support and prayers for this little guy and God Bless you all!

~Sean Molby

P.S.- My apologies for taking so long on getting this update out, Christy is just wiped out and I have had a very busy day and trying to get anything done in the hospital is difficult.

 

109/11/2013 2:34 PM -Almost 24 hours post-Fontan

It was a super busy and exhausting night. T did get extubated and has remained so. His blood gases ae good and his blood tube drainage is perfect. He really didn’t puff up a lot and the only complaint he really had was his throat was bothering him.. He has not complained about his incision site at all, thank goodness. He has started talking LOL in fact his first sentence was “I cant hear it”.. he was referring to the movie ‘How to Train your Dragon’ that was on.. His second sentence was “Move I cant see it” LOL so ya, he has his priorities totally straight!! We got our FAVORITE PICU night nurse Jacki, last night so we were all SUPER happy and we have had TONS of staff visit as they all saw him on the board and couldn’t wait to come see him again. It has been super awesome to feel the love everyone has for him. Jacki turned him every two hours and he did okay but I had to wake up and help calm him down each time, as he wanted mommy.. So I got snatches of 2 hours at a time from about 1Am till 6:30AM..exhausted has a new meaning again J

They lowered his Dopamine to .3 last night but kept his milrinone the same. They started giving him some PRN moriphine more just to help keep him calm than for pain and then also some Tylenol as that helped his throat (we kept these both up about every 4-5 hours)  and then also four large bolus’ of Albumin to help bring up his blood pressures some. We snuck in sips of water when we could- he wanted them but the Dr’s were more hesitant to let him try..so that’s our little secret J Other than that it was an uneventful night..no surprises and he remained stable

This morning has been BUSY, BUSY, crazy, CrAzY bUsY.

Daddy had to go back to work this morning for some inspections and we really miss him and wish he was here with us but we are remaining stable at around 7am they turned off all his continuous IV meds and they have stayed off.  They finally did rounds around 9:30 and we got the okay to remove his central line and also his urinary cath-speaking of, he does show some blood in his urine but that could be from irritation or just from being on by-pass but they put him on antibiotics so if it is anything more serious those will take care of it.

He had his O2 nose canula removed early this morning and is only on blow-by at 1 liter O2 and maintaining saturation levels at 88-92..so not the 99-100 we can’t wait to see, but totally normal AND awesome for being less than 24 hours post op. They also gave the ok for liquids and within his first hour had already downed nearly 8 oz of apple juice.

They gave him a dose of lasix around 11 to help with his urine output- he is slightly negative but he still is not too puffy or swollen except just a little in his face and a bit more in his feet. He isn’t really fussy and hasn’t complained much as long as he can see me and the TV J.. he is awake off and on but still pretty tired. They started him back on his enalapril and will start him again on aspirin sometime today. They will also be removing his arterial line but he will keep his peripheral until discharge..that is just a precaution cause it is so hard to get an IV in him! They did have to give him some allergy meds as the moriphine was making him super itchy, so far it has helped.

His blood drains are still very minimal and have already started turning clear which is AWESOME.. The only thing we need now is for him to be hungry enough to want to eat so we can watch for the pleural effusions/blood drain discharge after he eats some fat.. but so far it’s a no go with food, he just wants apple juice. There is talk about moving up to step down by end of today he is doing so well..so fingers crossed-although it would not be too bad to stay in PICU as we LOVE our nurse Cali and will miss her when we go to the Floor.

Currently he is resting comfortably with a 93 heart rate, 20 respiratory rate, 91% saturation with blow-by barely reaching him, and BP of 107/55—so AWESOME vitals that are making us super duper happy.

Thank you again for all the prayers and thoughts.. He CAN have visitors now and if you have sent a gift and plan on visiting let me know and I will hold his gift back so that you can give it to him..just text or PM me to let me know. If you visit we are at Children’s Mercy downtown currently in PICU- 2nd floor Room 33- everyone has to check in with picture ID (unless minor) at security and just give them Tristan Molby’s name and they can let you know for sure where we are cause like I said talk of the floor is in the air!

Oh and we could also use some prayers for Miss Ella Bell as her fever returned yesterday and she seems to be getting worse L  and Nikki Bri is having a REALLY hard time with it all as she is extremely overwhelmed with T being in the hospital and Ella being sick- she love them so much and she has been through the worst possible and could also use some calming prayers and lots of love as she feel the stress of us all. Super big thanks

 


 

9:15 PM (6.25 Hrs Post Op, Fontan)

Well…. R.T. had to increase his ventilator settings to 35% (from 21%) Tristan was still breathing over the vent at this concentration, its just that he is not fully awake yet. These settings are still a go for extubation, so as soon as Tristan woke up they were able to extubate he is now breathing on his own!!! Talk about a stressful and tiring day.

For the rest of the night, we will be monitoring his fluid levels, morphine for pain, his Dopamine and Milrinone dosages should not change overnight, trying to get vitals up a little bit. With Tristan it has always been the little things that cause alarm, so being extubated this soon is a big step! Thank you for prayers and support, we will continue to need them throughout his recovery.

 

4:57PM (2 hours Post Op, Fontan)

We are in the PICU…sorry just now posting. Grandma and Grandpa, Nikki Bri, Jake, and Ella all had to have their turns coming to see  him and it took a while. Then we just took some time to just watch him. He looks sooooo good. He is only .3 Dopamine, which helps the heart function, and .5 milrinone..That is IT…. so he is doing AWESOME..he is on room air and breathing over the vent but doesnt seem to be in a hurry to wake up so they still have him intubated. BUT he has responded to a couple of questions I have asked him and it is super funny cause he is so tired and looks completely knocked out but shakes his head yes when he wanted his Dune Duggy.

 

12:36 Fontan

He is off bypass, Fontan is complete and he is doing great! They are ‘drying’ him up right now, (cleaning up excess blood and stuff). O’Brien is closing the rib cage and carefully wiring it shut. They WILL BE closing the incision site after they are done. He has had good urine output and no swelling currently but that will happen more in the next 24-48 hours;vitals remain good and he should be back in the PICU within the next hour!!! We will get to see him hopefully by 2ish!! He is still doing great and they are all happy with everything… This momma is anxious to see her new even pinker (puffy) baby boy..it is going to KILL me to not be able to hold him.. Forewarning next post will have some pics; it is sometimes really hard to see so just wanted to prep everyone.. Hopefully he will do great today and tonight cause daddy has to go back to work tomorrow 🙁 no more paid time off available)  so keep T in prayers so it will be easier for Sean to head back tomorrow!!

HUGS AND LOVE~Christy

 

11:46 am

Fontan in progress

They finally got T’s central and peripheral lines in-they had a little bit of a hard time but he is still doing good. O’Brien was able to get through the scar tissue fairly quickly but spent a couple hours cleaning it all out and as Stacy put it “making it all new and pretty again” 🙂  they just dont like to leave the scar tissue when they can clean it up.. Anyways, so far so good. Tristan has been in surgery all morning, he is doing well. He has been on bypass now for the last 50 minutes and they are just starting the actual fontan procedure. The procedure should take at least another hour (give or take a few min)
On a different note Christy ran into our old social worker from the NICU and Amy, one of our favorite nurses from the heart recovery floor- sadly Amy is in a different department now. But it was very flattering when Dee asked Christy (for the umpteenth time) to please become a mentor. They have been begging her for three years now. She is interested but is just waiting til she can focus better on it.
Thats about it for right now..we will post more when we find more out.. Keep those prayers coming. They are working!!

 

 

Tuesday 9/10/13 8:45am

SURGERY DAY

Just ran into Dr O’Brien in the hall. After hugs and promises that he would take care of T 🙂 he let me know he was getting ready to head in. T is sedated and they have his arterial line but they are still tring to get his central line in. Stacy, the nurse practitione, will come out and update once O’brien starts trying to get to his heart.  T is doing good and all vitals are good

Monday, September 9, 2013 

PRE-OP DAY

Well today our day started out at 7AM and we didnt get home til 3PM so exhaustion has a new meaning for me LOL! We started out in Radiology today. They took xrays of T’s heart and lungs to make sure all look good for surgery.. Then we had ultasound on his legs to check his femoral arteries and veins for good access and good news (two hours later) xray was amazing no cloudiness in lungs and his heart still has good space between the sternum/ribs..this is good because it is safer as they are sawing through the bone and scar tissue.. they also showed great flow through T’s femoral vessels so that is exciting..only took three years for those clots to finally absorb 🙂

After Radiology, we headed to pre-op testing and ran in to heart buddy Aaron and his momma Sara, they are going in tomorrow for a heart cath for Aaron so if everyone could say a prayer for him too that would be GREAT!! Anyways, we got weighed, measured, vitals and sats all taken: T is 35 pounds 1 ounce and 3 feet 3 1/4 inches. His O2 sats were steady at 85. Blood Pressure was a litte high at 134/84 but he has been off his enalapril and aspirin, in preperation for surgery, so that is probably why. Pulse was a strong 108 and temp was a perfect 97.5 degrees!! We got to talk to so many people and T was such a good boy and cooperated through almost all of it. Pre-op always takes a long time so for him to stay good is always a worry..we did take a quick 30 min cat nap while waiting for new nurses and dr ‘s to check him.

And it was agreed as an all go for surgery. We were kind of worried as big sis Ella got really sick this weekend. She was at the dr with Daddy while we were at CMH for testing. They got a good urine sample from T and all looked well there, the biggest bummer of the day was lab for blood draws 🙁  they had a hard time getting blood (no real surprise there). Two different pulmonologists had to try and it took four different PAINFUL sticks (T’s vessels roll so they stick him and then wiggle it around to try and get it in the vein) IT SUCKS!! but we finally got it. T was NOT a happy camper 🙁 and I hated having to be the one to hold him down. But after labs we were FINALLY done and got our pre-op package and then went to the pharmacy for our anti-MERSA oinment and 6 1/2 hours and $40 later we were on the way to pick up daddy and Ella from her Dr…by the way BIG thank you to my sister for taking the time out of her day to run them up to Lees Summit so Ella could be seen (sean doesnt have a safe car to drive, so he didnt have a way to take her).. Ella is doing ok, she just has a very contagious virus but she is already doing much better. The staff at CMH all know and they tested T for the virus in labs and since I didnt get a call I am going to assume it was negative THANK GOODNESS.
After picking them up we headed home for a VERY LATE lunch then I crashed for a few hours as I was EXHAUSTED and I know I wont sleep tonight so figured might as well. We pretty much have the house all clean and ready. Sean steamed cleaned the carpets for me..Thank you honey- and thank you to Tara DeWitt for the loan on the shampooer :)…

So tomorrow will be the start of a new path on T’s journey. We head up at 6AM and he will be taken back around 8 or 9AM.. To say we are scared is an understatement but we have so many of T’s prayer warriors out there to help hold us up and give us strength! Thank you so much for that.

For now I am going to go give T his bath and prep his surgical site..fun; and then I am going to spend time snuggling him until he falls asleep and then I have no clue what I will do but I know sleep will not be involved..
Next update will be when they take T back to the O.R. so maybe around 9:30

Thanks again and PLEASE continue to PRAY..PRAY…PRAY!!~Christy

 

 

Tuesday, September 3, 2013

I am finally getting to a new post, I know one was suppose to be up a couple weeks ago…sorry but I have been kind of avoiding it-not for any other reason than I just didn’t want to have to think about everything anymore than we have already had too, that and well we have just been busy. But here it goes—     BTW-its another long one so bear with 🙂

T has been doing wonderfully for the past several months. I apologize for not posting about it but his cath went wonderfully, he did have to stay overnight for observation but it was a success and he recovered well from it. My initial worries and stress about his Glen Shunt and possible clots developing in it were needless, thank goodness. And awesome news- they were able to get access through T’s femoral veins…so at least one of his clots has FINALLY absorbed enough for them to push through so they didn’t have to go through his neck! Since coming home from his heart cath in early May, he has been so active. Our move finally happened end of May through early June… it was a pain in the caboose closing but we eventually closed on the 15th and got the keys on May 17th!  It took a couple of weeks to completely get out of the other house cause we had to do it on Sean’s time off L as because there was a HUGE disaster with closing Sean took and ended up wasted to days off UNPAID- because the mortgage company and selling bank had issues…well let’s just say it was a long story and we could not afford for him to take any more days off. But we ARE moved even if not completely unpacked yet… struggling to find where to place everything as we lost lots of room and storage space – its hard downsizing from 3200+ square feet to around 1800 but it has been worth it. In fact the only thing we really miss is the extra room and storage- Once we were finally able to move- it did not take long to adjust to our new digs J and T and Ella LOVE playing in our new backyard, which is a lot of what made moving here so worth it. We can’t wait until we can finally get a play set back there but that is a ways down the road, as we just don’t have it anywhere in the budget for quite a while..But they still enjoy going out and riding their bike or cars and motorbikes (both kid sized J ), and playing with his dump trucks and her with her ponies and barbies. Tristan and Ella REALLY love just being able to run around. Nikki Bri is adjusting well. She ended her last month of school in Grain Valley so she wouldn’t feel so out of place the beginning of her freshman year. That and her cheer practices started in May, oh ya she made the Grain Valley JV cheer squad-which is no easy feat so we have been super proud and excited for her. Caleb was able to come visit this summer so he was able to see the new house…of course he made just after we finally moved…hmmm wonder if that was staged LOL… Our neighbors are AWESOME…LOL all three of them, well four now, new ones just moved in across the street. It is an awesomely uneventful and quiet neighborhood and less than a 5 minute drive to my parent’s house!

Although T has qualified for the school’s early childhood education program he cannot attend until after his surgery and recovery but then he will be in pre-school which is a SUPER scary thought for this mamma. But one thing at a time, for now we prepare for surgery, speaking of surgery……….

It is currently 11:06 am on September 3rd as I write this. So, that means in exactly  6 days  18 hours and 24 minutes (give or take a minute or so) we will be loading up the car and heading up to Children’s Mercy so that they can perform Tristan’s Fontan procedure. This is the 3rd staged surgery for his palliative repair on his heart. It will be Tristan’s 4th open heart surgery, his 3rd bypass.

For those just now joining us on our journey and for those that may not remember…this is NOT a cure, this will NOT fix his heart-it will not make it whole..It is just the last stage of a series of three surgeries that they perform to help him function with the half of heart he has; by not so simply re-plumbing or rewiring his heart anatomy. T was BORN with half a heart and he will always have only half a heart BUT he has TWICE the love and determination of those born with a whole heart J

We have known this day would come for the past 3 years 4 months and 23 days…It doesn’t make it easier. It doesn’t mean that my own heart won’t be ripped out as they take him from my arms to wheel him down to the operating room. It doesn’t mean that I won’t be in tears as I sit and wait for the phone calls that will update us on his progress while they are operating on my baby boy’s tiny little heart. It doesn’t mean that we won’t be standing over his bed in the PICU praying fervently that God STILL has a plan for him on earth as we watch him through the extremely critical first 48 hours. And it doesn’t mean that life will EVER be truly normal for us.

 

I miss normal. Well sometimes, I miss normal. Sometimes I wish we were still as ignorant as we were 3 years 4 months and 23 days ago. I miss being around people. I miss uncomplicated family outings. I miss our financial security! I miss not having to be constantly stressed out. But mostly I just miss not having to worry every minute of every day.

It is tiring worrying all the time. But that is the life of a heart parent. That is the life of a parent with any special needs child. We don’t just worry about the health and safety of our children. We also worry about making sure meds are given and that they are given on time. We endlessly worry about germs and what harm they can seriously do to our immune compromised children. We worry about making sure we have all of our kiddo’s appointments down and everything we need as we go to them. We worry about what we might be told at those appointments. We worry about our other children, who although are not special needs-still have to the live their lives with one and they too suffer and worry! We worry, well most of us, about finances and bills we can’t pay and grocery lists we have to perfect on low budgets. We worry and miss being able to afford to just go out once in a while. We always worry about whether we have made the right decisions and choices. We worry what other people think; of us as parents, of our kids, of our way of life-we worry about how we are constantly being judged. Yes, that is a sad fact of our lives…we are constantly being judged and often convicted when no one really has a clue as to what our lives are really like.

Not even other special needs parents know our lives; because although our children have disabilities and may or may not have the same diagnosis NONE of us travel the same journey through it. Our journey’s can be similar but NEVER the same. All that worry is what makes us MISS being ignorant of the blessing that have been brought into our lives. And in reality, they are blessings!!! It’s when we remind ourselves of that…well that’s when we DON’T miss being ignorant. But we still miss normal.

 

The past three plus years has been a constant state of ups and downs. We have been enormously blessed with how well T is doing and how much he has accomplished. He makes me speechless more often than not! I don’t regret a single decision we have made to help him through his journey. Quitting my job and closing my business was the absolute best decision we could have ever made, in regards to T’s health…admittedly not so much in the financial scheme of things but I have always said from the beginning. “I would rather lose my house than my son”. We didn’t really lose our house but we did have to move out of it, BUT I still have my son!!! We have had to give up a lot but we still have our amazingly, awesome Super Heart Hero Warrior, Tristan Drake!!!

And now we prepare once more for this next step in our journey. We covet your thoughts and prayers. And we beg for you to continue to cover T in them. We will be updating the website as we get info during his surgery and then probably every few hours or so 48 hours post op, then it will go down to once or twice a day once he is on the heart recovery floor. We are planning on at least a two week stay BUT he could be discharged as early as 7-10 days or he could be there for several months. With recovery we just never really know.

Today, along with prayers we do ask for those that are able if you would consider making a donation for T. We have never had a fundraiser for him in the three plus years we have struggled. It has taken that long for me to understand that it is okay to ask for help and also that long for a dear friend to help me/us understand that sometimes that is what others need to feel that they are helping with more than just prayers.
As hard as it is to be honest, we have lost out a lot financially since T was born and I had to stop working to care for him (and yes I really did have to stop…that was the only thing his doctors would agree to tell us to do. T was just too critical to be placed in childcare and we had no one else to help watch him-it is because of that-he is alive AND doing as amazing as he is today!)  But the financial stress on us has been very significant. So that anyone who is interested can understand and know where the money is going…it is a unrelenting sum that has been growing for three plus years now-here it goes: Along with my loss of income Sean has had to take, in all almost three months of unpaid leave-that loss has totaled over $10K (this is over the past three years- two weeks just this year-plus the time to come next week) to be there for T; and for me when I have needed the help. We have been in a constant state of catch up for over three years. T’s medical expenses for his first two years were mostly covered but when I started having my major health issues a year ago we had to get private insurance, as my hospital bills were huge without having insurance at all. So with that we could not afford T’s Medicaid-which usually paid 100% plus the private and now we have the loss of the insurance premium-which thankfully is low-Sean’s employer provides great coverage. But we have reached and still owe our deductibles from last year and this year those total over $5000. In addition to T’s monthly medication which thankfully is not great but it is about $30-40 per month. Now because of T’s condition he eats A LOT- oftentimes it is about every hour he needs a large snack, this is in addition to the three major meals of the day…allowing him this has helped him remain as active as he is. Now WIC started covering pediasure for him starting this past January which has helped a lot but I still have to buy tons of healthy snacks for him as he is constantly eating. He consumes nearly as much food as Sean-no joke. We had a stroke of bad luck with my car this past spring and we had to replace the radiator ($350+), the fuel pump ($450) and a tire ($185) these were all unexpected expenses that were simply NOT in our budget so in order to get it done other bills (electric, gas, water, etc) are in a constant state of late pay rotation. We have been working hard to catch up but it isn’t easy and it won’t happen anytime soon…we are truly behind THOUSANDS of dollars. Moving helped and will continue to help slowly but for those that would like to help out with more than just a prayer –and please don’t feel bad if all you can do is pray, I completely understand, and we take those prayers with love but if you are able to donate PLEASE consider helping T and us out.. Even a dollar when given by dozens adds up…we would be truly grateful for any donation or prayer given!

 

Lastly I want to thank everyone for your support, patience, and love. Thank you to my sister who will be taking in Ella as one of her own once again and who will be driving her to school daily until we are home. Thank you to my mom who will be taking in Nikki Bri and helping her while we are at the hospital and taking her to and from practices. And thank you to everyone who has sent T gifts-We have had a lot of get well gifts sent to T and we will be giving them to him as he progresses in his recovery-I will send out thank yous as I can! Nikki Bri’s cheer teams (all of them) have banded together and are donating several meals for us post hospital and have given several gifts to T as well. I am speechless by this generosity and want to thank you all for your kindness. And thank you to those that have all so already so graciously donated to Tristan’s fund and thank you to those that will be. You have provided us with a light and a map to guide us through this maze of a tunnel we have been in for so long! To donate just clink on the gofundme logo or here I.HEART.TRISTANFUND to contribute via PayPal.

Thanks
Please continue to provide those prayers for
T and our family.

Love and Hugs to you all~Christy

Friday, August 30th, 2013

Tristan’s Fontan has been rescheduled for Sept. 10th, 2013 because his doctor was sick. We are going up to CMH to consult with him today and discuss the precedure details. Please continue to keep Tristan in your thoughts and prayers.

Sunday, August 11, 2013

I know a lot of you are waiting another post..I promise it is coming soon. We have just been extremely busy with T’s cath, testing and prep for upcoming surgery, MOVING 🙂 and unpacking 🙁 ,  getting acquainted with our new home and getting everyone enrolled in schools and getting T set up for home services…and sooo much more. BUT we will have a new update up by next weekend..until then God bless you all and please remember to keep T in prayers!


New Beginnings….

‎Thursday, ‎April ‎04, ‎2013, ‏‎12:52:38 PM |                        

So it has only been forever since we last posted   anything… I truly am sorry, things have just been CRAZY here in casa de Molby   J but as the saying goes no news is good news and for us that is without   exception the case!!! So much has happened in the last several months but through it all T has been   a rock star! He did get supremely sick right after Christmas, in fact it was   the sickest he has ever been but we still managed to stay out of the hospital  (barely) – we did have to go back into our self imposed “quarantine” which we   hate but it has allowed Tristan to stay healthy and aside from a lingering   cough he has been doing fine. We have been slowly venturing out since mid-March… he has gotten to go to Chic-Fil-A a few times (for those that   didn’t know-they gave us their play equipment cleaning schedule, so we are   able to let him play in the tunnels like a normal little boy without fear of   those scary germs J ) and we have gone to the park several times. He is super   anxious to start being able to ride the horses at Papa and Mawga’s farm   soon… HE LOVES THE HORSES!!!Cardiology was in February and after (as usual)   LOOOONG debates and discussion the decision was made that Tristan WILL BE   having his third staged, (his FOURTH heart surgery) this summer. Even though we   knew this was coming we are all sort of numb…how do you really prepare to   send your baby with strangers so they can put him under, slice open his   chest, break his rib cage open, and then stop his heart so that a man with   hands the size of Michael Jordan can repair his little half of a heart that   is smaller than the size of a small plum. As much as we love T’s cardiac   surgeon that concept just NEVER gets easier… and to top it off they want to   do another heart cath, which is scheduled for May2 (it was rescheduled from   April 30, for those that had that date down) the main purpose of this cath is   to coil off all/most of Tristan’s collateral vessels that he grew when his   left pulmonary artery became completely obstructed (the need for his third   open heart surgery) after his Glenn-wood in August 2008. They will also do   intervention work if his LPA has not grown the way they had hoped since last   year’s cath. So if you all could PLEASE keep T in your prayers we would as   always be FOREVER grateful!!!Therapy is going great for T. And he did qualify   for the preschool program BUT the doc’s don’t want him starting till AFTER   his surgery so pre-school is posed-poned until August, maybe later depending   on how his recovery goes but we are all very optimistic, but scared! He will   continue to get First Steps through the summer since his birthday is after   April 1 and he won’t be starting school till August… Speaking of his   birthday, for all those who have so graciously been asking- we are putting   off doing a celebration till after his cath…We just can’t risk him getting   some stray flu bug that would set things behind. The other reason we are waiting his because…wait   for it……… we are MOVING!!! J Although I hate the concept of moving we are   beyond excited for this as we are with the help of my parents and aunts   (THANKS SO MUCH you guys) buying a HOUSE (!!! WOOOHOOOO!!! ) and getting out   from under the home we are in now, which has taken a huge toll on us   financially. As most of you know we got this house before we found out about   T and before we realized that I was going to have to stop working to stay   home and care for him. So this is so exciting for us because for the first   time in THREE years we can finally see the end of the long tunnel we have   been so lost in! The kids are really excited and we finally have a usable   yard again-no more acre forest, LOL!!! J We will be just around the corner   from my parents (and the horses). Bri (who I have to inform everyone is now   going by Nikki-her middle name) will be transferring to Grain Valley and   although she is nervous she is super excited at the same time. She just got
through doing cheer try-outs for her Freshman year, which of course couldn’t   have gone without something weird happening; she woke up Mon, the first day   for try-outs with an excruciatingly painful sty in her left eye, she was   soooo upset (poor thing) and in so much pain but I got her to the doc, and   she went ahead and prescribed some antibiotic eye drops. And Nikki (Bri) true   to her dedicated self STILL went to try-outs despite being in pain and being   so overwhelmed. Unfortunately the pain took over and with not knowing a   single soul there, being so nervous and in as much pain as she was, she had   to leave early but the coaches were very understanding and asked for her to   come back Tuesday if she was able.. Tuesday came and she was doing a little   better and she went again and lasted the entire 4 hour try-out time but she   was still overwhelmed, she new absolutely NO ONE, she was in pain from her   eye (if you have never had a sty, let me just say, it is like having a broken   toothpick rubbing against your eyeball every time you blink)… She is such an   AMAZING young woman and I am BEYOND proud of her. At 14 she has been through   more than most people in their 70’s and has persevered with her head held   high and a smile on her face and remains a constant support for me and anyone   else she knows… No matter what happens, I could not be a prouder mom, BUT I   hope with everything I have she gets this-she puts on such a brave face but she   wants it so bad and I can’t think of anyone who deserves it as much as her.   She said she messed up a couple times in try-outs and despite having her back   handspring, was not able to do it outside of GAGE and without a spot   (something that her private lessons will remedy in no time).. I mean she can   do it, I have seen her but she is still just too unsure of herself- and   feeling so alone at the try-outs just emphasized it. But she feels she did   well and is optimistic… I just hope the coaches realize what a tremendous   addition she would make to any squad, because I know from proof that they   will never find anyone as dedicated, responsible, and deserving as she is..   and yes I am a little biased but really, compared to what most teenagers have   had to deal with Nikki has them all out shined!!! She is so lucky and so   loved; big bro, Caleb has been a big support for her and very encouraging, as   well as Teddy and sooooo many other people…by the way, THANK you all so   much for the calls and texts wishing her luck and offering prayers and   support- she really appreciated them all. K done with the proud mommy moment 🙂
Overall things are going well and are looking up.   We will be moving anytime within the next 2 weeks to month (still don’t have   a definite closing date) packing is slow but we will get it done. I will   start doing at least monthly updates now that T is prepping for another   surgery. As always we thank everyone for their continued prayers and support   and as soon as we have things more definite we will be having a HUGE Birthday   party for little man and Ella after the move at our new house!!! Until then   LOVE and HUGS to you all~Christy

Status Archive 2012

 

3 Comments to CURRENT UPDATES

  1. Alexis says:

    Sending many many prayers today. Tristan seems to be an extremely exceptional blessing to your lives and his story touches mine. I have strong faith that he will come out of this stronger than ever. God Bless your family and Tristan!

    God never gives us anything we can’t handle and there is support in places you wouldn’t even think of, so Stay Strong!

    -Lexi (a friend of Caleb’s)

    Joshua 1:9

  2. I have sooooo much to do but having a hard time wanting to do anything but cuddle with T… we have been playing on the computer and watching YouTube for over and hour and still he keeps wanting to go and watch his own video LOL.. he loves to see himself on the screen- think we may have a preformer on our hands. ~Christy Molby

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