HomeStatus Updates (Archive 2010)CMH Hybrid Stage Two (Glenwood)

CMH Hybrid Stage Two (Glenwood)

Wednesday, ‎September ‎22, ‎2010, ‏‎10:06:09 PM | smolby@gmail.com (Sean Molby)                        

Pretty   eventful week this week. We have had some major ups and downs and thankfully   right now we are at a major UP time…For   the last two days T has managed to maintain his O2 saturation levels in the   mid 70s to low 80s with only being on between ¼ – ½ liter of oxygen. This is   a huge jump from being on 2 liters and barely being able to keep in the mid   70s. AND without having to be deep suctioned!! We are doing a nasal aspirate   suctioning but it is not as invasive so it is much better for Tristan and the   big plus is that is what the docs are comfortable sending home with us.

They   were planning on doing a cath procedure tomorrow for Tristan, and they still   may, but we are waiting on a new echocardiogram to be done to see if they can   try and get another look at the flow through his pulmonary arteries…if the   flow is insufficient than they may have to balloon them open or place coils   in some of his collateral veins- it is really hard to understand, so it is   even harder for me to explain- this is the 2nd possibility of what   could have been causing his low saturation levels…BUT since his O2 sats have   jumped up ( and I have been telling everyone that it is ALL thanks to you   guys and the prayers that are being said) they are back to thinking that   maybe it was just a cold…soooooooo not sure what will happen tomorrow.

The   only other problem Tristan has been having is he has been vomiting lately, we   are all in agreement that it is most likely do to the secretions and mucus   that he has backed up in his nose and throat and that when he swallows or   coughs it is making him gag and then vomit. I would normally be upset over   this but I think it may be helping him clear out all of that junk in the back   of his throat, he has not vomited since early this morning but there have   been several close calls. Even so, he is still doing well and sounds so much   better than he did late last week. They have done another x-ray of his lungs   and stuff and there is no sign of pneumonia-which is often a huge risks with   heart patients- and his lungs still look clear! YEAH!!!

He   had his first physical therapy session Saturday and his second yesterday   (since being in the hospital) and it went AWESOME!! She was very impressed   with his enthusiasm to work and how advance his is for being a heart kiddo   and one post op. They worked on him rolling over, which he seems to some how   have learned all on his own- who knew- and then getting him to sit up   straighter and lift his head up instead of slumping over like he has been.   Then they worked on feet to hands and feet to mouth, simple things that he   just has to learn all over again. She was very optimistic and is excited to   see how much more she can get him to do before he gets released. He will get   PT 2-3 times per week till released and then we will go back to going through   First Steps.

He   had occupational therapy today. That didn’t go over as well but to be fair to   T they were rushing it cause he was supposed to get his echo done and they   needed to get him in like 5 minutes- the echo ended up getting postponed till   tomorrow because they have specific people they want doing this one but OT   had left before we found that out- anyways he responded well but he has lost   a lot of his sucking instinct over the last month. She explained that it is   because since his intubation –and the fact that he was reintubated 3x that he   is now associating mouth stimulation with what they call “BAD” touch so to   help him with that we have to assure him that sucking on the pacifiers or   hands or whatever are “GOOD” touches. So every feeding we are suppose to work   with him with “good touches” and then OT will come everyday till release and   work with him a little more in depth. Then after discharge we will again go   back to First Steps…so get ready Nicole, Tristan wants to show you what he   can do J !!!

Not   to much else that I can think of. …… well, I do have a question for you all   only because I have had some mixed comments… this may sound stupid but I was   curious as to if everyone prefers to have daily updates, even if there is not   much to update, or if you prefer the longer 1-2x a week ones. For the most   part it doesn’t make much of a difference to me. The longer ones take me a   couple hours to type up and eventually post the short ones not so long but   daily. It may sound silly to some but I write these updates not only for my   own sanity-they help me process it all in a way- but also for everyone to   know what is going on. You can either reply in the feedback section of T’s   website or tell me on facebook. I just would like a majority consensus. No   biggie if you don’t say. I am gonna go with majority rules on this one so….

Thanks   again for all the prayers. And for those that also prayed for Quentin thank   you. He successfully had his Glen today and is doing well. He does have a   higher blood pressure than what they would like so they are keeping him on   the ventilator but he has opened his eyes and his mommy, Naomi, got to see   them-which is a HUGE thing- at least it was for me.

Please   keep both these boys in your prayers. And yet again, and I will keep saying   this,

THANK   YOU EVERYONE FOR ALL OF YOUR SUPPORT!!!

REMEMBER   cherish what’s important!!

Time   goes by so quickly- even when you feel like time is standing still; it has a   way of passing you by

To   end this update I got this little story via email and I felt it to be too   good not to share… love you all, stay safe, hug your loved ones ~♥Christy

The Mayonnaise Jar

 

When   things in your life seem almost too much to handle, when 24 hours in a day is   not enough;

remember   the mayonnaise jar and 2 cups of coffee.

A professor stood before his philosophy class
and had some items in front of him.
When the class began, wordlessly,
he picked up a very large and empty mayonnaise jar
and started to fill it with golf balls..
He then asked the students if the jar was full.
They agreed that it was.

The professor then picked up a box of pebbles and poured
it into the jar. He shook the jar lightly.
The pebbles rolled into the open areas between the golf balls.
He then asked the students again
if the jar was full. They agreed it was.
The professor next picked up a box of sand
and poured it into the jar. Of course, the sand filled up everything else
He asked once more if the jar was full. The students responded
With an unanimous ‘yes.’

The professor then produced two cups of coffee from under the   table
and poured the entire contents into the jar, effectively
filling the empty space between the sand.
The students laughed.

‘Now,’ said the professor, as the laughter subsided,
‘I want you to recognize that this jar represents your life.

The golf balls are the important things – God, family,
children, health, friends, and favorite passions
Things that if everything else was lost
and only they remained, your life would still be full.

The pebbles are the things that matter like your job, house, and car..

The sand is everything else
The small stuff.

‘If you put the sand into the jar first,’ he continued,
‘there is no room for the pebbles or the golf balls.
The same goes for life.

If you spend all your time and energy on the small stuff,
You will never have room for the things that are
important to you.

So… Pay attention to the   things that are critical to your happiness.
Play with your children.
Take time to get medical checkups.
Take your partner out to dinner.
There will always be time to clean the house and fix the dripping tap.

‘Take care of the golf balls first —

The things that really matter.

Set your priorities.

The rest is just sand.’

One   of the students raised her hand and inquired what the coffee represented.

The professor smiled. ‘I’m glad you asked’.

It just goes to show you that no matter how full your life may seem,
there’s always room for a couple of cups of coffee with a friend.’

September 17- 3 weeks 4 days post op

‎Saturday, ‎September ‎18, ‎2010, ‏‎12:14:03 AM | smolby@gmail.com (Sean Molby)

So   this has been a week of ups and downs added with ins and outs. For the most   part Tristan has had a very good stay up on the recovery floor. So good that   he was set to be discharged today. Brace yourselves it is another long one JBut   I will start from the beginning of the week. Monday ENT did a re-evaluation   and found and interesting discovery. Tristan has a condition called   Laryngomalacia (also known as soft larynx), and most likely also   Tracheomalacia (this one is not yet diagnostically confirmed) they both cause   airway obstruction that results in what they refer to as squeaky breathing.   In Tristan’s case she fully expects him to basically grow out of it with in   his first year. She does not anticipate any difficulties but this diagnosis   explains a lot and was rather an exciting find. She didn’t find any paralysis   of his vocal cords and his swelling and inflammation is normal for what he   has been through. I still don’t understand much about this myself yet but no   one seems to be worried and it is a minor case that should not involve   surgery.

The   big debate this week was with Tristan’s blood clot in his leg. There has been   lots of discussion on the benefits of his Lovenox injections versus just   continuing aspirin. The doctors have gone back and forth with this one going   so far as to take him off and restart him on aspirin, much to our delight   (the injections are not really painful but the medicine itself can burn and   cause severe discomfort for several seconds-in addition to bruising and small   lumps at injection sights). It is a rather invasive treatment requiring two   injections daily for a total of 3 months with an additional blood draw done   weekly at first, then bi-monthly to evaluate the levels to ensure proper   dosage. Although the majority of the staff seemed relieved when the   cardiology team took him off. In the end hematology pushed enough and   stressed their concern enough that cardiology decided it would not   necessarily hurt him to be on it, aside from the shots themselves, and the   potential benefits outweighed the possible risks. So, T is back on and   getting his two shots a day L I can’t say I am thrilled but only cause I am   the one that has to give him his shots!

We   all have spent most of this week preparing for his return home today. The   doctors ordering medicine changes to help accommodate our home life better,   getting Tristan back to his normal feeding schedule, slowly weaning him off   his sedation meds (still another 2+ weeks for that), and then Tristan’s nurse   practitioner and hospital social worker finalizing all the home details: the   new medical equipment to be ordered, reordering depleted home supplies, and   then also all the new trainings I have had to go through (learning how to   give Tristan his Lovenox shots, then learning how to do nose and mouth   suctioning with a vacuum suction-still don’t have that one down yet- and so   many other little odds and ends to help us better care for Tristan at home.   All the papers were drawn up and everyone was ready to go except, apparently,   …… Tristan…

The   little stinker decided to De-Satlate last night, which in simple terms means   he was not profusing efficiently and started turning blue. Most of the night   last night and into this morning was spent in a frenzy of commotion trying to   figure out what was going on as Tristan was not breathing normally or very   well when he was breathing. It took most of the night and a lot of hard work   with his nurses and respiratory therapist but they finally got him   restabilized and comfortable but with the downfall of a definite delay in his   home discharge. L

The   majority of today was spent having x-rays, an extensive echocardiogram, labs,   and A LOT of different meetings with the attending doctor and the cardiac   team, Tristan’s cardiologist, his cardiac surgeon, ENT, hematology, and then   also the PACT team (this is a hospital staff support group that is basically   for kiddos they don’t expect to do so well, we have been with them since day   2 of Tristan’s first hospital stay, before he did his miraculous turn-a-round   at 2 ½ weeks. But once a member always a member and they have been great to   us!

Luckily   all of the tests they did today came back with the unanimous result of it not   being a cardiac issue- THANK GOD- if it was there may not have been anything   they could have done and that is not something I want to particularly think   about.

The   final three possibilities I suppose you could say are that either Tristan has   a cold, which is ironically what all the docs are hoping- kind of an odd   thought, I know. J

OR…   the simplest way to put it is Tristan has a blood vessel that has widened and   is taking a good amount of the blood flow that should be going out his   pulmonary arteries. This is unusual but not unheard of as often times blood   takes the path of least resistance and this “new enlarged” vein may be   providing that. The last possibility involves another ENT evaluation and that   has not happened yet so I have no info on it.

If   it is the “cold theory” we will just wait it out till Monday and see if his   O2 saturation levels come back up, on their own, without oxygen but with   continued suctioning of his secretions and respiratory monitoring. If it is   the “vein theory” all that should be needed is another catheter procedure   that will result in his doctor placing a coil that will block the new vein   from taking all the blood. And again I have not a clue with what ENT will do,   and I am not sure if they will be able to get another evaluation until   Monday.

SOOOOOOOOOOO,   at the hospital we stay through the weekend. As disappointing as it all is I   can’t be mad or sad cause in the end my baby boy is basically doing okay we   just have a slight delay. And I would much rather take a few more days going   home while he is still in the hospital as opposed to not getting to take him   home at all.

As   always, thank you all for your continued support and prayers. They are still   needed and greatly appreciated. Also, please remember to keep Quinton in   prayers as well as his second surgery is next Wednesday the 22nd.   And if you could also say a prayer for a fellow heart mom, who through   bravery and love fought with her little Isabella who sadly and unfortunately   lost her fight last July. Today was to be her 1st birthday. Her   mama is having a hard time and could use the extra support. She is an   amazingly strong woman who despite her pain has been there for me throughout   all of Tristan’s fight this go around. Thank you Lori, I wore pink today for   Isabella and encouraged all the nurses to do the same, the ones who knew her   all remember her and you and we said a prayer for you both today as well.

Hug   your kids and loved ones tight this weekend all. And be thankful for all you   have been given. Life is precious and our loved ones our most treasured   gifts. ~Christy

September 10 – FINALLY ON THE FLOOR!!

‎Friday, ‎September ‎10, ‎2010, ‏‎10:31:36 PM | smolby@gmail.com (Sean Molby)

Tristan   is now up on the recovery floor. WOOOO WHOOO!!! J He has had a pretty rough   day but doing good over all. ENT   finally managed to come down and scope T –they have been super busy   themselves the last couple of days- the ENT doc said that there was movement   in both vocal chords (a good sign) but that did it didn’t have anything to   reference or compare what he was looking at so we are going to have to wait   until Monday so that the Dr who did the first scope can come and re look to   see if she sees any difference than what she saw when he was extubated. It is   kind of confusing but they just want to make sure that everything is as good   as what they think.

He   has had a little more trouble with withdrawal today, we think but it may just   be the pain he was in from his PIC line. Since they were not sure they went   back to his original dose on just one of his sedation meds in hopes that it   would help.

Since   surgery Tristan has only managed to keep one of his 5 original IV lines and   today it had to be pulled do to a possible infection from being rewired,   resutured, and redressed so often. (His skin is super sensitive and every   time they have to change his dressing-what protects the IV line from outside   infections- it has seemed to make it worse. And today they deemed it unsafe   for him to keep this PIC line and because of his history they had to place   another peripheral IV just so there would still be access if it was needed.

With   everything he went through today with being poked, prodded, scoped, assessed,   and moved he has done really well. They did manage to get him off his oxygen   support-YIPPEEE!!! J They had not anticipated him coming off so early and   that is the main thing that is keeping us still in the hospital. So as long   as all the tests and stuff come back good next week and no new problems arise   (FINGERS CROSSED) he should not be in the hospital for too much longer. I am   not even going to attempt to guess at a release date cause I don’t want to   jinx anything. We are just being optimistic that everything is going as good   as it is.

Tristan   now can have visitors but as always please make sure you are not feeling sick   before you come up. We are in 4 Sutherland room 20 and still at the downtown   Children’s Mercy. Thanks again to everyone and hope you all have a great   weekend! ~Christy

September 1oth – 2weeks 3 days post op

‎Friday, ‎September ‎10, ‎2010, ‏‎1:14:43 AM | smolby@gmail.com (Sean Molby)

First   off, I apologize for the delay in getting up a new update. I have been hoping   to be able to put up some super good news, like hey we are on the floor, but   the staff here is not being so cooperative with that.. J For   those that do not know Tristan is still extubated and doing very well. His   cardiac output is good as is his heart rate, respiratory rate, and O2   saturation levels. The difficulty we are having his still with the swelling   in his throat and nasal passages. They are not causing any problems at the   moment but there is still concern about it and so they are taking things   REALLY slow, which is better than them going really fast like they have a   tendency to do. We have been told for three days in a row now that he was to   be moved up to the 4th floor recovery. Tuesday and yesterday were   not such big surprises when they decided that it was not going to happen but   today was a little more frustrating.

Since   10am we waited patiently for ENT to come by since that is the only thing we   were waiting on for the floor transfer thumbs up. At about 1pm his nurse   called up to see when they would make it down and they said they would be   here at 5PM….disappointing but doable. Tristan was having a great day. Not   too fussy which is good considering they cut all his sedation meds in half,   that is a pretty good decrease….at 5:15pm still no ENT. The nurse went back   out to page them and just happened to catch them in the hall. During a 1   minute conversation ENT asked how T was doing, when they were told good they   said well just go ahead and transfer him up and we will do an evaluation tomorrow   up on the floor. Soooooo we had a 7.5+ hour wait for no reason but hey the   ball was rolling and we were headed to the recovery floor, or so we thought.   Turns out the charge nurse somehow “forgot” to send up the orders for him to   be transferred and by the time the floor got them staffing had already been   assigned and they were not staffed appropriately to take him.

Lets   just say that did not make me such a happy camper and Sean was none too   thrilled either. I am trying to stay positive and remind myself to be happy   that he is doing so well. And I am but it is just hard because the next step   after the floor is getting to go home and I so desperately miss having my   family together at home.

For   now we are still in the PICU but he should transfer up first thing in the   morning. We will see! He has had a pretty good night. Only was fussy for a   little while between 11 and midnight but he is now quietly asleep cuddling   with his bears…all three of them it is really cute.

Thank   you everyone for continuing to pray and keep Tristan in your thoughts….I   would also ask you all to add another little HLHS baby to them as well, his   name is Quinton. He was born a day before Tristan and is scheduled to have   his 2nd stage surgery on Sept 22. His mama is pretty scared, as I well   know, and would greatly benefit from the help of all of you. Thanks again and   Blessing to you all ~Christy

September 6 – 2 weeks post op

‎Monday, ‎September ‎06, ‎2010, ‏‎12:32:55 PM | smolby@gmail.com (Sean Molby)

Yesterday   was definitely an eventful day. Sean and I headed to the hospital early so   that we could spend some time with Tristan before they attempted his   extubation. Eight o’clock came too soon let me tell you. With a total of 17   people in the room, 1 heart surgeon, 1 cardiac nurse, 3 ENT specialist, 1   attending doctor, 2 resident doctors, 1 fellowship doctor, 1 charge nurse, 2   respiratory therapists, 2 room nurses, 1 pharmacist, and 2 very worried   parents, he was successfully extubated at 8:15AM. ENT   (ears/nose/throat) did a quick evaluation and determined that they would have   to come back in two days to re-evaluate because he was really too swollen to   get a great idea of how everything was doing so let me tell ya they were real   helpful! They did say that it “appeared” that both vocal cords were working   but the left seemed floppy, I think was the word they used. So most likely no   vocal cord damage…extremely good news!

He   did fairly well for about 45 minutes and then he suddenly stopped breathing.   Not a fun sight for a parent to experience, especially since this was the 3rd   time I had to watch this happen. Being it was Sean’s 1st I think   he had a slight harder time and realized how difficult last week was for me.   Luckily after a couple of different respiratory treatments and some   successful secretion suctions Tristan started breathing on his own again and   has now remained extubated for a total of 16.25 hours and holding.

Last   night was fairly uneventful, aside from an inattentive nurse he was no worse   for the wear. I made it to a bed finally around 4 in the morning and that was   only because when I left the nurse was in the middle of doing an assessment   and after that he was due for his respiratory therapy and then quickly after   would be shift change so I knew that someone would definitely be with him   while I was resting.

After   AM rounds they reduced his dexmedetomidine (a sedative) to .1mg/kg/min down   from .7mg/kg/min and he should be completely off of that tonight, possibly   tomorrow morning. They reduced his milrinone to .25 micrograms/kg/hour down   from 1.25 micrograms/kg/hour with completely weaning him by tomorrow morning.   After that it will just be a matter of weaning him from the IV sedation drugs   to oral and then up to the floor he will go.

His   vitals have been good since extubation and his blood gases are normal. WOOO   WHOOO!!! They will restart his feeds today; they had to stop for his   extubation, so that may help with his restlessness a little as well.

For   now it is a different kind of waiting game. Mainly the focus will be on   helping him through his withdrawals from being on heavy sedation medications   for an extended period of time.

Tristan   definitely still needs tons of prayers he is a far cry from being out of   danger.

Thank   you all again for everything that everyone has done. All your thoughts and   prayers mean a great deal and have definitely helped pull Tristan through.

He   is a very loved little boy. ~Christy

Sept 4th 2010 ~12 days post op

‎Saturday, ‎September ‎04, ‎2010, ‏‎11:38:16 PM | smolby@gmail.com (Sean Molby)

Okay   so I we really need some powerful prayers and a hefty serving of good luck   for tomorrow starting at 8AM…….They   waited on extubating Tristan today because there is still no air leak in his   vent, but regardless they are definitely extubating tomorrow morning. They   have called in the ears/nose/throat specialist at CMH to evaluate him   immediately post vent to access if there is any paralysis of the vocal cords   or damage to the soft tissue around them that may help explain why the   swelling isn’t going down (that they can see). The ENT specialist came in   today to speak with us, and though he did say that he felt we still have time   that he did want to prepare us for the possibility that Tristan may have to   go through a tracheotomy surgery. NOT what we really wanted to hear this   morning!

Now   there is a chance that he will do fine with extubation even without an air   leak. It has happened and that is the hope I or rather we are clinging to.   Tristan has been on room air and breathing over his vent for almost two days   now while maintaining all his vitals in an above normal range…WOOO WHOO!!! J   so this is a super good sign and means that the only thing that is holding   him back from remaining extubated is if his throat is too swollen to breathe   in air……sssssoooooooo this is where all of your prayers are greatly needed,   yet again.

All   the medical staff needed, will be meeting up at Tristan’s bedside at 8AM with   extubation to start immediately after. Our hope, as well as everyone else’s,   is that all will go amazingly well and no re-intubation will be necessary AND   all of your prayers are gonna be what makes that happen!! I truly believe   that all of you who have kept Tristan in your hearts and minds are the reason   he has fought so hard and remained so strong through all of this. You have   given him the will to fight and keep fighting to stay with us. On behave of   Tristan and our family I thank you greatly for that!

Now   to update you on everything else for the last couple of days; all of   Tristan’s labs look great! His sodium, potassium, chloride, calcium,   hemoglobin, white blood cell, and sooo many other levels are ALL in the   normal range YIPEE (finally)!!! His fluid input and output is also finally in   sync and he pooped again today YEAH FOR POOP!!!

He   is also opening his eyes a lot more and able to stay alert enough to know we   are there but let me tell you his is NOT so happy about that thing being in   his mouth and throat they have had to restrain both of his arms/hands to   prevent him from pulling his vent out on his own L It is actually really sad   looking. The poor thing is 5 months old (in 4 days) now and has both of his   hands restrained to the bed as if he was a mental patient or a criminal and   then to top it all off they have his mouth taped up so much that when they   have a blanket over his head we all joke that he looks like Hannibal Lector,   Sean has pics he will upload tomorrow so that you can see what I am talking   about. It is funny in a way, only because it makes it easier to deal with if   you joke but in all actuality it is just so sad! L But again hopefully all   that will be gone by tomorrow morning and I will have him in my arms again   for the first time since August 24! LET ME TELL YOU I CAN HARDLY WAIT. Sean   is worried I won’t give him a turn to hold him even though I have said I will   …… (but between me and you he is probably right, but I will try to give him   maybe a minute)! J I did get to see and hold my girls tonight so that made my   day today. They are staying with family tonight since we have to be at the   hospital around 6:30 so I am aiming for an awesome day of getting to hold   each of my kiddos and give em all lots of hugs and kisses cause I really,   really miss getting to do that!

Please   remember to keep us in your prayers tomorrow and maybe add us on your prayer   lists at church as well! Thank you all so much and we will let you know how   it all works out by tomorrow night! ~Christy

Sept 2

‎Friday, ‎September ‎03, ‎2010, ‏‎7:28:36 PM | smolby@gmail.com (Sean Molby)

Super   tired so this will be quick…Another   fairly uneventful day, they did pull out all of Tristan’s staples from his   incision which they feel is healing wonderfully. He did okay through the   removal no outward signs of irritation so that is good.

They   think they may have finally got a good mix with his TPNs- everything looked   normal on his blood labs so step in the right direction there. They still   have not gone up on his actual feeding volume. I found out they won’t until   he is extubated.

They   did find out he has a fairly large clot in his right leg. Since it is in his   vein and not his artery they are not sure where it came from or how long it   has been there. They will treat it with a medication called lovenox (not sure   if I spelled that right) that will consist of him getting 2 shots per day in   either his thigh or stomach for 3 months….. L so I am not too happy about   having to do that to him but hopefully by the time he gets to come home he   will be used to them and not mind so much. It is a fairly small, short needle   that the nurse said should not hurt too much….obviously she likes shots!!! J

Other   than that not too much else happened today. They will probably try to   extubate him again tomorrow so wish us luck there. ~Christy

September 1st 9 days post op

‎Thursday, ‎September ‎02, ‎2010, ‏‎12:30:03 AM | smolby@gmail.com (Sean Molby)

Much   better day today! Thank goodness- fairly uneventful, except for one big   thing….(details in a minute) They   pulled Tristan’s drainage tubes out today. These are put in place after each   surgery so that any excess fluid has a way to drain out and doesn’t instead   back up and put too much pressure on the heart and lungs. Tristan did great   through it and seems very happy that they are out.

They   also started feeding him today… YIPEEE!! Well sort of, they did. He is only   getting 3 ml per hour a far cry from his 130 ml per feed….it takes him a   whole hour just to get an ounce. Poor baby, but the point is not to fill his   belly it is to make sure he will be okay digesting and that his profusion is   sufficient enough to handle actual feeds. They will bump him up gradually   over the next few days till he is back up to a regular size feed! He also   pooped again today, yep we got to cheer for some poop today J and it was   right after they started feeding him so that is a great sign!!

The BIG   news is Tristan opened his eyes today for the first time and actually saw us…   it was so wonderful to see him again. He is still too groggy to be able to be   real happy about being awake-which with everything he is hooked up to that   may be a good thing- but we were able to sit and talk to him for quite a   while before he tuckered out and went to sleep. I can not begin to tell you   how much I miss his smiles and laughs. But him waking up has definitely made   my week!

They   probably won’t extubate him until Friday, at the earliest. They learned from   yesterday and will take it slower this time. The air leak they are waiting   for in this new ventilation tube isn’t quite big enough for everyone to feel   comfortable with yet but they have ordered another round of steroid   treatments to help facilitate the reduction in his swelling. SOOOOO another   two days at least before I get to wrap him in my arms again.

So I am   extremely excited because I should get to end my week with being able to hold   each of my kiddos-cept Caleb cause he is in Florida- something I haven’t got   to do for almost two weeks!!

This   puts another whole new meaning on THANK GOD IT’S FRIDAY!!! J

That   pretty much sums it up for today. Thank you all for your thoughts and prayers   they are totally appreciated ~ until tomorrow Christy

August 31- 8 days post op

‎Tuesday, ‎August ‎31, ‎2010, ‏‎10:32:52 PM | smolby@gmail.com (Sean Molby)

Today   was a SUPER rough day. They tried taking Tristan off the ventilator….did not   go so well. He actually would have done okay except he has had so many lines   going in and out of his nose and mouth that it swelled his airways and after   about 2 minutes of being extubated his airways closed and he could not   breathe. So heart rate dropped to below 25, O2 saturation levels were around   the 40’s, respiratory was 2, and blood pressure was over 150/100 this lasted   several minutes. They had to bag him and then do some pretty aggressive   respiratory treatments but in the end (after 2 hours) they had to re-intubate   him soooo he is again back on the ventilator and will have another day or so   to wait for the swelling to go down. (They are pumping him full of some   steroids to reduce the swelling quickly). Then we will get to try it all over   again! –Cant waitI   know overall this is really not the scariest thing Tristan has been through   but for his me it was the most visible thing “I” have ever had to watch him   go through…..I could only handle it for about 15 minutes and then I had to   call my mommy to come be with me, poor Sean was at work and I didn’t think he   would be able to get off. This is the first time I have really broke down   this hospital stay.

Let   me tell you watching your child basically suffocate is one of the scariest   experiences a parent can go through. And I just had to sit back and let   everyone else take care of it, which I am proud to say I managed to do   despite my GREAT desire to shove everyone out of the way so I could at least   try to do something! I felt even more helpless than I already do right now.

We   also almost lost his central IV line which for those that know is not a good   thing because Tristan is what they call the “nightmare stick”. His veins are   extremely hard to get IVs in and so they had to rush him up to internal   radiology to see if they could save his line or find a new one to replace it.  

Luckily   they were able to save the line he has but in their search they found out   Tristan has a severe clot in his right leg-which would explain why no one has   been able to get a line through it the last 3x they have tried and he also   has a small one in his left leg where his current line was (they extended it   today to save it and where able to by pass the clot). Unfortunately we have   yet to be able to talk to the attending doctors to find out what exactly this   means for Tristan so we are kind of in the black with this, at least until   tomorrow.

For   now Tristan is doing much better. His vitals have been good since they   reintubated him-unless he is wet then he gets pissed and everything goes crazy   till his diaper is changed-but he is comfortable and calm again and should   remain so for the night!

I   will post another update tomorrow and let you all know what we have found   out. Please keep him in your prayers because we still have a really long way   to go. ~Christy

August 30 7 days post op

‎Monday, ‎August ‎30, ‎2010, ‏‎10:13:29 PM | smolby@gmail.com (Sean Molby)

Sorry   I have not posted in a few but Sean did a pretty good job taking over for a few   days, I think. I have been super stressed out and worried a lot over Tristan   and I have also had to worry over things that I shouldn’t have to deal with   but that is life I guess.First   off, I want to thank everyone that has prayed for Tristan throughout this   ordeal. Your prayers are what get him through!!! Sean and I have had an   easier and a harder time this go around. It is easier to deal with the shock   of it all since we have already been through it before but I can not begin to   tell you how hard it is to not be able to hold Tristan and to watch   helplessly as he lay there on the hospital bed unconscious. Sean has been my   rock through all of this and has had to hold back on his own emotions a lot   to help me through. It is hard to feel so useless when I am so used to doing   everything for him. Hopefully I will be able to put him back in my arms by   the end of the week!!

Long   day today, Sean had to go back to work and so had a hard time his first day   back. Of course things didn’t go as planned so he had a stressful first day.   I can’t imagine how he feels and I am thankful to him for allowing me the   ability to stay with my kids.

Tristan   is making some good gradual improvements. He is off the epinephrine and the   versed and down to the lowest dose of melrinone and a low dose of phyentanol.   They are optimistically hoping to have him off the ventilator by tomorrow   afternoon. (I soooo did not spell those meds correctly J )

He   has lost a lot of his swelling and they have almost got his TPNs (total   patient nutrition) perfect, they are still tweaking his chloride and   potassium levels.

Overall   it has been a good day for Tristan and hopefully tomorrow will be just as   good! I miss all my kids more than I can say. Briahnna has been with grandma   and grandpa and Ambriel is back with Aunt Tamara and Uncle Scott. They have   both adjusted very well and are anxious for Tristan to get back home…..at   least Briah is. I think Ella is having too much fun playing with Rissa and   Alliyah to mind too much but I can pretend she is missing us terribly J

Hope   everyone had a wonderful weekend and that you continue through with a   glorious week ahead! ~Christy

Sunday August 29th 2010

‎Sunday, ‎August ‎29, ‎2010, ‏‎12:12:29 PM | smolby@gmail.com (Sean Molby)

Not much   has changed here, Tristan is going thru the weaning process, and doing well.   He had a minor setback last night; the ventilator tube that was inserted   nasally developed an air leak due to all decreased swelling, and had to be   changed out. This is kind of a catch 22, meaning that we want the swelling to   go down and knew that this would happen, however during the re-intubation   period he did not do so well. His stats were all over the board, they had to   heavily sedate to calm him back down, and could not get the breathing tube   back in nasally, this had to be inserted orally with an adjustable cuff. All   is well now, probably a 12hour setback on his weaning process.This   morning they manually suctioned out Tristan’s lungs and with great progress,   have removed a lot of mucus!!! This should help his O2 saturation   considerably and maybe speed the weaning process. Here are some of the   details that we have been working thru.

· Urine   output has been good over the past three days

· Still   chasing his potassium levels

·   Weaning off the nitric oxide; slowly. Yesterday he came down from 8ppm to   2.9ppm.

· Chest   x-ray scheduled for later on today, they may attempt another IPV (Breathing   treatment to pop open lung) this afternoon.

· Capped   his pacer wires. During surgery they installed wires for an external   pacemaker, should it be needed incase of an emergency.

·   Ventilator settings are constantly being tweaked; to control blood gases, and   complete the weaning process. This will probably take 2 or more days.

·   Weaning off nipride to help maintain BP

· After   suctioning and removing lots of mucus, his saturations are looking much   better.

Please   continue your prayers for baby Tristan, he still has long way to go before   leaving the PICU.

~Sean

Friday August 27th @ 11:00pm

‎Friday, ‎August ‎27, ‎2010, ‏‎11:03:37 PM | smolby@gmail.com (Sean Molby)

Not   much new to report, Tristans urine output has been good all day, and because   of this his potassium is low, so more of the tweaking, adjusting,   ect…Hopefully he will have another good night tonight, I’ll let you know in   the morning…

Friday August 27th 8:00am

‎Friday, ‎August ‎27, ‎2010, ‏‎8:07:59 AM | smolby@gmail.com (Sean Molby)

Tristan   had a good night! Lots of swelling went down, his urine output has been excellent   and this means that profusion to his kidneys is good and less pressure on his   lungs. Maybe he will tolerate the IPV (more aggressive ventilator) treatment   today, this is used to help “pop” open the lung so that they can suction out   the mucus. He   has been maintaining his hemoglobin levels since his last transfusion and   this is great considering all of the blood that they are taking for lab work.   His normal ventilator settings were turned down last night, and this seemed   to help with his profusion through all extremities. Oh yeah I almost forgot   Tristan had an unexpected POOP yesterday! The medical industry is very   interested in the PEE and POOP! This means that things are starting to work   again. Hopefully this trend continues upward and stats will start improving,   I was starting to get worried last night.

This   mornings lung X-ray showed improvement over yesterdays! Hopefully with the   continued positive urine output this will decrease the pressure on his organs   and more progression will start happening J

48 hours post op

‎Thursday, ‎August ‎26, ‎2010, ‏‎10:07:36 PM | smolby@gmail.com (Sean Molby)

48   hours post op and Tristan is taking his time with the whole process, and I am   completely fine with that! He has been showing overall improvement throughout   his stay in the PICU, keeps having little setbacks and they keep tweaking his   meds and his respiratory therapy. Currently he is having difficulties with   his left lung and they are treating that with different type of ventilator   treatments, this seemed to work fine for the first treatment, the second one-   not so much, he didn’t like the second treatment and the doctor canceled the   rest. So right now his stats are returning to before the treatment and they   are going to take an x-ray at 4:00am to check the progress on his lung.   Tristan is on a lot of medication, and support so please continue to pray for   the little guy.

August 25th, 20 hours post op

‎Wednesday, ‎August ‎25, ‎2010, ‏‎1:27:23 PM | smolby@gmail.com (Sean Molby)

So   here we are 20 hours after surgery, Tristan is recovering slowly and as expected   given his track record. Overnight they had to change Tristans chest tubes   (drainage) from vacuum bulbs to wall suction, somehow an air leak delveloped   around these tubes and they would no longer maintain a vacuum.This   surgery is a lot more invasive than his first one, so we really did not know   what to expect this time around. They have not had to pump a bunch of fluid   into him to stabilize his blood pressure, like the last surgery. However he   does still have quite a bit of swelling from the chest up, and this is   considered normal. This morning his Central line that is used to deliver   medications failed, and had to be replaced. He has been maintaining his   hemoglobin levels, oxygen saturation is still pretty low and they are   constantly tweaking his ventilator settings. Late this morning Tristans   cardiology nurse decided to remove the wall suction and reinstall the vacuum   bulbs, so far every thing is working properly. All in all Tristan is doing   well and considered semi stable-stable at times, I think that the doctors   would like to see a little quicker recovery, but they are satisfied with his   results so far. They are going to start administering lasix today, this will   help pull some of the excess fluid off and reduce the swelling. Hopefully   Tristan will be able to maintain his potassium levels, and blood pressure   with this excess fluid removed. BABY STEPS Right! They are going to run more   labs this afternoon so check back later for more Baby Tristan 101 ~Sean

August 24th Approx 5hrs post op

‎Tuesday, ‎August ‎24, ‎2010, ‏‎9:05:28 PM | smolby@gmail.com (Sean Molby)

Tristan   is now in the PICU, and doing as expected for this type of post op   preceedure. His big sis Briahnna was able to see him shortly, before going   with Grandparents. Tristan is having quite a bit of drainage coming from the   drain tubes that are inserted inbetween the heart and lungs, this is somewhat   normal post op,… maby a little more than they would like, and is all part   of the recovery process. Despite that overall, Tristans condition is good, he   is not out of the woods yet. The next 12-24 hrs is the critical period where   he needs to stablize, so please say a little prayer while tucking your kiddos   in to bed this evening, and check back later for more updates. Oh I almost   forgot we have a prayer chain going on in Singapore! Thank You everyone

Aug 24 —7 hours 15 min into surgery

‎Tuesday, ‎August ‎24, ‎2010, ‏‎2:49:06 PM | smolby@gmail.com (Sean Molby)

Sorry   it has taken a little longer for this update. It took a while for them to   really get started. They did not end up getting all of his IVs in until about   9:45 am so it took about an hour and a half longer than they thought it   would. They ended up with only one arterial and two central lines instead of   the other way around. Then they had to start the incision, clear out the scar   tissue, and then break through the breast bone. They   then began the 1st stage of his surgery which is undoing his   Hybrid procedure. They have also started and finished up with the 2nd   stage (Norwood) of the procedure- for this they had to lower his body   temperature to 18 degrees Celcius while starting him on the by pass machine-   he has so far done wonderfully and has remained steady throughout everything.   He is a little over half done.

They   are in the process of completing the 3rd stage (Glenn) and then   they will begin to wean him off the by pass machine and he will begin his   recovery in the PICU (pediatric intensive care unit). The next 24 – 48 hours   are severely critical for Tristan. Sometimes when they are put on by pass   they are not able to recover and they go into cardiac arrest- some are able   to pull through and some are not.

I   have to believe Tristan is one that is strong enough to fight his way back to   us. He left my arms with a smile and a look of comfort in his eyes, he did   the same thing the first time around as if to say, “hey mom I love you, it is   all right, I am going to be just fine”. He is such a little trooper and I   can’t wait to see him and give a kiss.

Probably   will not be able to update again till later tonight.

K   I am going to update my update- the nurse just came in Tristan is done with   his repairs they are now weaning him off of the by pass heart/lung machine,   this is a very gradual process and will probably take another 30 minutes or   so. The dr will then decide if he will go ahead and close Tristan up or leave   him open to compensate for swelling and then sew him up in a few days-   Tristan is doing good and responding appropriately and it sounds like the   doctor is leaning towards going ahead and sewing him up today but again it   will all depend on how Tristan resposed when he is completely off the by pss.

Thanks   again for all the prayers and PLEASE keep em coming!!!

ALSO   SEAN HAS FINALLY ADDED A FEEDBACK PAGE SO ANYONE CAN POST A COMMENT OR   QUESTION RIGHT ON THE WEBSITE! We will do our best to keep checking back.   Love you all ~Christy

August 24- 2 hours into surgery

‎Tuesday, ‎August ‎24, ‎2010, ‏‎9:22:30 AM | smolby@gmail.com (Sean Molby)

It   took them quite a while to get Tristan’s IV lines in -he needs a total of 5 :   2 arterial lines, 2 peripheral lines, and 1 central line- and at the last   nurses update she said that the doctor should make the chest incision within   the next 15 minutes, that was 45 minutes ago. Tristan at the time was doing   very well. He   was a super good boy this morning and a continuous cuddler. It was so hard to   let them take him from me when it was time for him to go back to surgery. I   wasn’t sure I was going to be able to let him go…….that was the hardest   thing I have ever had to do, even harder than when I had to do it at his   first surgery! We should be getting another update within the next 30 minutes   so I will update more then

KEEP   TRISTAN IN YOUR PRAYERS FOR US!!!

August 23 -8 hours till surgery

‎Monday, ‎August ‎23, ‎2010, ‏‎11:22:22 PM | smolby@gmail.com (Sean Molby)

can’t   sleep…no surprise there. Tristan is doing good though sound asleep in his   bed, cute as ever! Sean and I are both restless. Doubt if either one of us   gets to bed tonight.I   did however decide to join the 21st Century, as Sean likes to put it. I am   now on Face Book; although I have no idea what exactly that means or how to use   it (ha ha) I am so clueless about that stuff. Oh, well I will just have to   learn but thought I would let everyone know as I have had several ask when I   would get on there. Going back to the room to watch Tristan sleep again.   Thanks to everyone for all your support!

August 23 – 14 hours 30 minutes till surgery

‎Monday, ‎August ‎23, ‎2010, ‏‎4:51:29 PM | smolby@gmail.com (Sean Molby)

We   just got home from CMH for pre-admissions. Surgery will be tomorrow at 7:15   AM with is OR prep starting at 6AM. This   is Tristan’s most dangerous and risky procedure-the mortality rate is over   25%. He will be put on a heart and lung by-pass machine while they re-plumb,   as you could say, his heart. The simplest way to describe what they are doing   is changing his right ventricle into working as his left ventricle, since he   does not have a left one, by detaching his aorta that is now attached to his   non-existent left ventricle and instead attaching it to his right ventricle.   They will also detach his superior vena cava from his atriums as they will   use his main pulmonary artery to by pass the heart and pump blood directly to   the lungs. That is the simplest way I can put it. If anyone is interested in   looking the procedures up he is undergoing a comprehensive Stage II Hybrid   reconstruction via redo median sternotomy- or basically undoing his Hybrid   procedure and then proceeding with a partial Norwood and complete Glen   reconstruction.

I   can not begin to tell you how scary this is for us. Especially since we just   found out that although they do the Norwood and Glen procedures very   frequently, Tristan is only the fourth patient at Children’s Mercy to undergo   the actual procedure they are doing tomorrow. I was too scared to ask the   outcomes of the other three patients.

Aside   from prayers there is not much else we can do for now. All of Tristan’s labs,   x-rays, and tests came back looking good. His lungs sound perfect and he is   at an optimal weight for this procedure. The nurses assured me he could not   go into this surgery in any better shape than what he is now. The rest is up   to him, Dr. O’Brien/his staff and, of course, God!

We   have Uncle Joe Chapman and Kenny Tucker coming over tonight for a special   administration. They did this right before Tristan’s first stage and he came   through with flying colors.

If   everyone could please keep him in your thoughts and prayers tonight,   tomorrow, and at least thru his stay in the PICU at CMH we, as always, would   be eternally grateful.

For   now I am going to go and cuddle with my son as this will be the last night   for me to do so for quite a while. He will be in the PICU heavily sedated for   about a week and we will not be able to hold him again until they wake him   up.

We   will do our best to keep everyone updated through the website. His pre-op and   surgery will be over 6 hours. We will try to do some posts throughout the day   tomorrow but something will be up for sure by Wednesday morning .Wish us   luck!

And   thank you in advance for all the thoughts and prayers! ~Christy

August 23 – 14 hours 30 minutes till surgery

‎Monday, ‎August ‎23, ‎2010, ‏‎4:49:13 PM | smolby@gmail.com (Sean Molby)

We   just got home from CMH for pre-admissions. Surgery will be tomorrow at 7:15   AM with is OR prep starting at 6AM. This   is Tristan’s most dangerous and risky procedure-the mortality rate is over   25%. He will be put on a heart and lung by-pass machine while they re-plumb,   as you could say, his heart. The simplest way to describe what they are doing   is changing his right ventricle into working as his left ventricle, since he   does not have a left one, by detaching his aorta that is now attached to his   non-existent left ventricle and instead attaching it to his right ventricle.   They will also detach his superior vena cava from his atriums as they will   use his main pulmonary artery to by pass the heart and pump blood directly to   the lungs. That is the simplest way I can put it. If anyone is interested in   looking the procedures up he is undergoing a comprehensive Stage II Hybrid   reconstruction via redo median sternotomy- or basically undoing his Hybrid   procedure and then proceeding with a partial Norwood and complete Glen   reconstruction.

I   can not begin to tell you how scary this is for us. Especially since we just   found out that although they do the Norwood and Glen procedures very   frequently, Tristan is only the fourth patient at Children’s Mercy to undergo   the actual procedure they are doing tomorrow. I was too scared to ask the   outcomes of the other three patients.

Aside   from prayers there is not much else we can do for now. All of Tristan’s labs,   x-rays, and tests came back looking good. His lungs sound perfect and he is   at an optimal weight for this procedure. The nurses assured me he could not   go into this surgery in any better shape than what he is now. The rest is up   to him, Dr. O’Brien/his staff and, of course, God!

We   have Uncle Joe Chapman and Kenny Tucker coming over tonight for a special   administration. They did this right before Tristan’s first stage and he came   through with flying colors.

If   everyone could please keep him in your thoughts and prayers tonight,   tomorrow, and at least thru his stay in the PICU at CMH we, as always, would   be eternally grateful.

For   now I am going to go and cuddle with my son as this will be the last night   for me to do so for quite a while. He will be in the PICU heavily sedated for   about a week and we will not be able to hold him again until they wake him   up.

We   will do our best to keep everyone updated through the website. His pre-op and   surgery will be over 6 hours. We will try to do some posts throughout the day   tomorrow but something will be up for sure by Wednesday morning .Wish us   luck!

And   thank you in advance for all the thoughts and prayers! ~Christy

August 20; 3 days 16 hours till surgery

‎Friday, ‎August ‎20, ‎2010, ‏‎6:53:12 PM | smolby@gmail.com (Sean Molby)

Today’s update is a little   different. I have posted below this, some poems that help express what we   feel. If you just want to skip to the bottom for my actual post feel free but   I really found these helpful when I read them.

I am a Heart Mother

One day my world came crashing   down, I will never be the same…They told me that my child was sick. I   thought, am I to blame?
I don’t think I can handle this…I’m really not that strong
It seemed my heart was breaking. As, I’d loved him for so long
I will not give up on this child! Despite your best “advice”
I will give my child a chance. No matter what the price!
And I will learn all that I need to help my child to thrive
I’ll even use that feeding tube My child will survive!
And he’ll needs lots of therapy? And he just can’t gain weight?
Alright God I can do this. I will not curse our fate
The feeding pump beeps (at 3:00 a.m.) It serves as my reminder..
How many parents would welcome that sound? Tomorrow Lord, I will be kinder
Another angel earns their wings and I run to my sleeping child’s bed
I watch him then, for quite awhile..(I bend down and kiss his head)
Then I cry for parent’s whose lives have been broken, I look to You wondering   why?
Oh Lord, I just can’t know your ways. No matter how I try…And yet, I trust   You hold his life and guide us through each day
My mind says savor each moment he’s here; my heart whispers, “Please let him stay”.
From pacing the surgical waiting room, to sitting by his hospital   bed…
From wishing for a good nights sleep, to learning every med
From wondering will he be alright, to watching him reach out his hands..
With every smile, my heart just melts..(despite life’s harsh demands)
For all who see that faded line. I look to them and smile.
You see my child is loved so much for him I would face any trial…
That same scar I trace with my finger (It’s the door to his beautiful heart)
You knew how much I’d love him. (Just as You loved him right from the start)
A heart mom is always a heart mom (wise beyond all of her years)
And for those who have angels in heaven. Our hearts share in all of your   tears
On Mother’s Day I will remember. You chose me for him (and no other)
And I will embrace that beautiful   day………………..When I became a “heart mother”.

Somewhere

Somewhere…someplace…   today… A family is waiting to hear.

Is   something wrong with their baby? The answers aren’t quite clear

This   family has entered an unwanted world And they just don’t know what to expect
Somewhere…someplace… today… They first heard the words: heart defect

And   how they hoped this was not true And thought… this cannot be…
I too… know just how this feels… For one day…this was me.

Somewhere…someplace…today…   A man and a woman embrace

Their   baby is in surgery They long to see his face…
They haven’t got to hold him yet …….Without a cord or line
They pace the room awaiting news And hope he’ll be just fine
Prayers fill this busy waiting room And mom and dad are scared
Somewhere…someplace..today… The tiniest hearts are repaired

Somewhere…someplace…today…   A child’s growing fast.

Smiling,   laughing, thriving His mom thinks…can this last?
It’s almost easy…to forget That anything is wrong…
Somewhere…someplace..today… Her child seems so strong.

Somewhere…someplace…   today… A little boy fights just to live

A   father holds his tiny hand… His love…all he can give…
The doctor’s are all baffled. They fear that he might die…
Somewhere…someplace…today… A family says goodbye…

Somewhere…someplace…each   year.. More than 40,000 families will see

what   it means when something is wrong, They will face a CHD.
Today…for just a moment… Stop…remember…reflect…
Make time to tell someone you know. “I’ve been changed by a heart   defect”.

CHD: Congentital Heart Defect

Some Bonds Cannot Be Understood

Some   bonds cannot be understood. Unless you have walked them before.

A   path that I would not have chosen. A future I just can’t ignore.

We’ve   all watched our children intently Memorizing each line
And let them leave our loving arms And prayed things would be fine
We’ve paced the halls awaiting news And wondered just what lie in store
We’ve felt our own heart’s racing as We walked through an ICU door
We’ve seen the child we love so much Struggling to overcome
The lines…the cords….the monitors No thoughts…no words…would come
We’ve prayed for an improvement We’ve laid it in God’s hands
We’ve cried…we’ve hoped…we’ve worried We’ve wondered of God’s plans

We’ve   learned just how a heart works Each valve and artery
We’ve asked a lot of questions We’ve faced each surgery
And somewhere down this well worn path We’ve met more families
Who know exactly what it means To live with this disease
We’ve smiled at every triumph And shared in every sigh…
We’ve prayed for a child that struggles And each family that must say goodbye
Some battles are fought with bullets And weapons made for war
While these are fought in silence Behind a hospital door
We’ve wondered what lies in our future Been thankful for just one more day
We’ve stopped and watched with tear-filled eyes Our children…as they play
We’ve struggled with ounces and weight gain Why won’t my child just eat?
But heart mom’s …we’re a tough group We’ve learned how to face a defeat
We’ve faced those moments…others do When life has got us stressed
But it doesn’t take long to remember That we are richly blessed
We’ve taken on a whole new role One we wouldn’t exchange if we could
We know that life is difficult We hold onto all that is good
God chose each of us carefully I do believe he smiled…
Some bonds begin with strangers… And just one special child.

I am the Father…

My child was born with a heart defect. Its “my   job” to be strong…
And tell my wife things will be fine. (And pray that I’m not wrong)
And still the bills need to get paid. And things need to be done.
And it’s so hard just sitting here. “I want to hold my son”!
I lean down as I watch him breathe. “Keep fighting”, is my plea.
“I thought I’d teach you to be brave….But son, you have taught me”.

I hear the beeping of all those machines (They’re helping   my child to live)
I wish that I could take his place… (Man, what I would not give!)
To have the faith and strength I need to hold back all my tears…
to say I know he’ll be okay… despite all of my fears…
I’ll only fall down in defeat… when no one is around
I’ll be the rock she surely needs I’ll stand on solid ground.
A daddy says,” come to my arms… and I’ll chase those monsters   away”…
This daddy’s heart cries out to God… and says, “Please let him   stay”.
A daddy needs to cry sometimes… and God must see right through…
that “tough daddy exterior”…………for He is a daddy too.

These were written by Stephanie Husted, she is also a   mother of a child with Hypo-plastic Left Heart. I was given the first poem by   a nurse at the hospital that I became close with; she wanted to give me something   that helped me know I was not alone and that others understand how I feel and   what I am going through. I thought I would share them to maybe help some of   you know what goes through our heads. I could not express myself any better   than she has.

I am asked all the time “how do you do it” my answer to   this is….. “How do I not”

Tristan is my son, my baby. I hate that he has to go   through this but it does not make me love him any less. In a way, I am beyond   grateful for all that we have gone through. It takes someone special, like   Tristan, to open your eyes and see how wonderful and precious life really is.   It may not be perfect but it is pretty damn close, despite the stress, unpaid   bills, and everything that we all complain about day to day.

Remember:

You can’t stand your boss and if you have another day like   today, you might just quit…..think of the 2,976,326 jobless individuals who   search endlessly for employment

You have had the worse day ever…..think of the wife that   is sitting in the ICU saying her last goodbyes to her husband of 52 years

The stupid bag boy over packed your sack of groceries and   they all fell out, rolling all over the parking lot as you jump around broken   glass to salvage what you can…..think of the millions of underfed people around   the world that would eat the food off the pavement just to fill their bellies

Your are pissed because your child dented your car….think   of the parent that would do anything to let their child borrow theirs but   can’t because he lost his battle with cancer, leukemia, CHD, MS, or so many   other ailments that countless children suffer with everyday.

So many times we take life for granted. The good AND the   bad of it. I remember after the second week Tristan was at Children’s Mercy,   Briah was up visiting and we were at the RMH and she had her backpack. She   had had a hard day/week herself and was really tired. On the way up the   stairs to the room she dropped her backpack and her papers and books went   flying everywhere. She was pretty ticked off, she was picking up her books   and slamming them in the bag shoving papers in complaining the whole time and   crying saying this was the worst day ever.

With everything that Sean and I had been through that week   I had to smile and be grateful because I was able to walk over help her pick   it all up, look at her and say, “I know you are mad, it would be frustrating   to have dropped your bag but let me say, this…. this is soooooo not the   worst day ever, the worst day ever is being told your son has a Congenital   Heart Defect, dropping your bag just sucks”!

That conversation was over 4 months ago and today I can   look back and say I was wrong, the worst day ever is not being told your son   has a Congenital Heart Defect, that too just really, really sucks!

The saying that someone else always has it worse is truer   that you can imagine. No matter what you are going through you will ALWAYS be   able to find someone who has it worse because regardless of your   difficulties, they are your   difficulties and you will always manage to get through them but if you   were to take the time to hear someone else’s story you would realize that   things for you really aren’t so bad after all. And the funniest thing about   that is when they hear your story they are thinking the exact same thing!

I know life it tough but that is what makes it life. If   everything were perfect all of the time it would be fairly boring and   uneventful. It is all the horrible days we have that make all the good ones   so much better.

Tristan is still doing good, considering. He gets tired a   lot faster and is sleeping much more often than he used to. His color is   starting to get a little bluer which makes me appreciate his pink color (and   miss it) so much more, he is definitely ready for his second stage. As we   prepare for Tristan’s surgery Tuesday I can only reflect back over the last 4   ½ months and be eternally grateful for the time and memories we have been   given with him; and hope and pray that we will be given over 1000 more months   to make even more!

Please pray for Tristan as we start this next journey in   his life!

Hybrid Stage One

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