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A WHEEL OF TIME COMMUNITY

yeah........so,...uhhhhh......


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Ugh, Ben, I wish. Been a roller coaster of a weekend. Thursday I got a call that our surgery is being postponed. Indefinitely. There is a local boy who needs surgery and Wyatt is being bumped. No ETA at all for when surgery is going to be rescheduled. The social worker will call me later in the day. All i could think was it took us the better part of 6 months to get to this surgery. If I have to wait another 6 months I'm goin to break down. 

 

Most of the day goes by, I'm a wreck AT WORK. We're getting ready to leave and they finally call me back. I'm seething with rage and despair. We've had to beg, borrow and steal to make sure we were goin to be okay with this extended hospital stay and now . . . . . we have to wait more? Plus, Wyatt is starting to show noticeable symptoms of his heart defect so it was kind of like a 'oh wow. what great timing. Wyatt's finally showing signs of a heart condition and it's going to be fixed. Oh wait. No it's not!' The phone call isn't to tell us our new date but to clarify all that's going on. There is a newborn local to the hospital that needs emergency surgery. So, I immediately feel guilty about silently hating this unknown family because, damn, a newborn? At least I have the "luxury" of waiting. This family's gotta be goin through hell. Bad news continues for us. It's a terrible coincidence we're dealing with. Our surgeon, Dr. Alfierez, is scheduled to leave the country Feb 15th. They would LIKE to schedule Wyatt in before then but there's a chance they may not be able to schedule him until the Dr. gets back after the FIRST OF MARCH. OH COME ON!! They'll call us back when they know more and have us scheduled. 

 

So, we wait. All day Friday we hear nothing until finally, right when the office is about to close, they call us at 4:10. We have Wyatt scheduled for surgery for 5 Februrary, 2018, Monday 7:30 AM. Our hotel reservation has been rescheduled. We have to show up Friday for pre-procedure testing. It only got pushed back a week. I can't believe how relieved I am and then I crash again because I have to go through the mental preparation again for them splitting my son open and pulling out his heart. I've not ever felt so drained. Ever. 

 

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I'd try to put that "still a chance" thought on a back burner; you have enough emotional trauma to wade through without adding hypothetical situations to it. 

 

I don't have the personal strength to handle what you're going through. I would be praying constantly and reaching out to all my friends and family for support because I just couldn't take it. I probably would have raged at the doctors/hospital staff/whoever it was that told me this news, and I would also resent the helpless, innocent newborn baby who was cutting in front of my helpless, innocent son for a surgery that neither of them should ever have to have, and then I would also judge myself harshly for it.

 

There is nothing you can do about the symptoms or the timetable for the surgery. You know how to pack the suitcases and make all of the arrangements now, so that won't present a stumbling block, and you know that you are a wreck at work and your boss knows why, so just soldier on and be a wreck; you can do a better job later when you're not under assault like this, and the tasks will help you get out of your head a little bit. Just do the things you can. You can't make them not change the date again, so don't expend the emotion and energy trying to psychically will it to your liking. You can go jogging around the block a few times and release some stress and endorphins, so maybe do that. Maybe it will help you sleep. Do those things that you can, like eat real food, walk or run or swim or something aerobic, sleep, and hold your wife close. Then go be a wreck at work again. They understand; it's okay. I'm so sorry this is happening to your family. I wish I could change it. I'll keep praying.

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  • 2 weeks later...

An up-date? The up-date is that I have found out that I am not Wyatt's real dad. Wolverine is Wyatt's real dad. The missus won't admit it but it's certainly the only explanation I have because my son is just totally kicking ass. 

 

The surgery went faster than anticipated. We got him to the hospital by 6:30 as instructed. We got our first update at 8:00 that the first incision had been made. The hospital uses this really cool Ap called 'My Care Circle' that gives automatic updates on the procedure and progress. Best part is we could add any amount of people as we wanted to receive the same updates as well so the missus and I didn't have to worry about sendin out message after message. Anyway, here I am noddin off in the waiting room as we've been awake since 5:30 AM and here is this explosive voice nearly hollerin 'Perfect! Everything went perfect! Couldn't have gone any better. A nurse will be out within the hour to take you to see your son.' It was only 10:30 AM. We were told it was goin to take anywhere from 4-6 hours. So, to have such an early end was pretty incredible.

 

Turns out Wyatt did so well during the procedure that when they took him off the heart and lung machine he picked up breathing and his heart beat immediately on his own, so no need to intubate him. After that, it was pretty incredible. It was really hard seein Wyatt. They had an arterial line in his right wrist that was sutured in place. Another one in his neck that was stitched in as well. That was the line they were using to do all of his tests. Draws and gases and whatever else they were draining out of my boy. They had another regular IV in his left wrist AND his foot. He was cathed too and then there was his drainage tube coming out of his chest about halfway between his diaphragm and his belly button. It was filled with what looked like just blood. Thick coagulated blood. It was pretty jarring. 

 

The staff was incredible. The nurses phenomenal. Once we were settled in it was just watching Wyatt break every expectation. It was hard for him though. He was recovering so fast that each day was a new painful thing of having something new come out of him. The foot IV came out, then the cath and right arterial line. We were told that Wyatt's drainage tube was pretty much the turkey timer of when we got to leave. The Dr.s wanted to see the fluid become thin enough to take him off suction. By Wednesday night they had taken out the neck line, taken him off all the sensors, heart monitors and oxygen sensors. No need to take any more labs and no more heavy drugs. Simply ibuprofen and tylenol. They took him off the IV but left the line in left hand for just in case. On a regular diet. They took the drain off of suction and had the tube attached to a small plastic bladder that was pinned to his sleeve. The only suction coming from negative pressure of squeezing the air out a bit before attaching the bladder to the drain. All the while as these things are happening his incision is nearly healing before our eyes. 

 

Friday morning comes and we're lookin at leavin some time around Monday or Tuesday when the nurse practitioner comes in and says "How would you all like to get out of here today?' Excuse me? Come again? Beg pardon? Before I knew it we were on the road heading home by 4:30. 

 

Fast forward to today and you wouldn't think anything had been done. He shows the tiniest bit of tenderness every now and then. Like, he still won't let anyone hold him chest to chest but he's movin about and playing just fine. He was finally able to have a bath for the first time Friday. Baths are his absolute favorite thing in the known world lol and he played a bit too hard. He was hurtin that night. He had his first follow up with the cardiologist Monday and everything was fine. He's on his Lasix meds once a day for any residual fluid that may still be around his heart down from twice. He's not needed regular pain meds in days. 

 

See? His dad is most obviously Logan and has inherited some of his healing powers. That's the ONLY explanation. Thank you all SO MUCH for all the well wishes and prayers and goat sacrifices. I srsly believe everyone was with him in all this. To have things go so well. . . . .it's simply beyond me. 

 

The missus and I are members of various DS groups and heart warrior groups etc.. so we've seen the best and the worst experiences of parents that have gone here before us. Ya know, I'm not complainin here or nothin, just tryin to say how odd I am feeling. We've heard all of these stories of terrible complications and January was a VERY bad month in the heart warrior community. A lot of early angels. So, we were trying to prepare ourselves mentally for these awful possibilities and then . . . . . .we're home? We're home! Wait . . . that's it. We're really real for realsies real home? The only thing I can compare it to is those prank videos of people who are blindfolded and tricked into thinking they're bungie jumping or jumping off a bridge only to plummet into a small kiddy pool. Ya follow me? I feel relieved but. . . .  .guilty. . . . or like I'm gettin away with something or. . .  I don't know how to describe it but there it is lol. 

 

It's back to work come Tuesday though and hopefully back to bein around here pretty regularly again. Hope ya'll didn't miss me too much. ;)

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There are miracles. Prayers are answered.

 

I am so thrilled that everything went so well. You were missed, but you were right where you needed to be.

 

Hugs to you, your wife, and most certainly, your son.

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Mills. I only just caught up on all of this and just reading through it all was an absolute rollercoaster. Much love and respect to you and yours for bearing up under all of that and of course to your little man for showing what a fighter he is. I'm sure we are all proud as can be- which is still a fraction of how proud you must feel. I'm so glad things seem to be improving and pray they continue to do so. 

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Oh my word, Mills .... that is absolutely the most wonderful news! I'm so very very happy for you and your missus, and of course your little miracle man :)

 

And don't sell yourself short! The child has obviously inherited some of your amazingness!

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14 hours ago, Millon said:

I like this new update to DM because......

 

Geeks, meet my son, Wyatt. Wyatt, meet the geeks. 

 

 

IMG_3810.JPG

Wyatt, you are one tough, strong guy! Upward and onward!

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On 2/19/2018 at 9:21 PM, Millon said:

I like this new update to DM because......

 

Geeks, meet my son, Wyatt. Wyatt, meet the geeks. 

 

 

IMG_3810.JPG

 

Wyatt is an absolute doll and it's a pleasure to meet him!

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  • 3 weeks later...

<3 he is both precious and perfect! ^^ All the heart and cheers from this corner of the world too!

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