2 and Beyond Updates

Our Pre-Fontan Journey

Tue May 13, 2003

Well, it's that time again. Quinn is going in for his cardiac catheterization tomorrow, Wednesday, May 14th. We go in at 6:30 am, already on Versed (thanks to our Goddess of a cardiac nurse, Donna). We already had the physical on Monday so we don't have to do that and he can go straight to the part where they give him his pre-meds and the versed won't ever wear off. Translation: he will be too doped up to know what is happening the WHOLE time. Many adult friends of mine have extolled to me the virtues of Versed, so I am plenty relieved about this. I know we will have many prayers coming our way, which we welcome - prayers, chants, reiki, pujas, good energy, rituals - whatever you've got, we'll gladly accept it :)

Thu May 15, 2003

I barely have the energy to write this, but I feel I HAVE to get an update out there, I know everyone is waiting for it. The good news: The cath was rather uneventful. Only one collateral, 3 coils and bam, done. (for the non-heart people, this is good). He woke up almost immediately upon exiting the cath lab. He screamed for about the rest of the afternoon and evening after that. IT was NOt fun. Our roommate was his age and diabetic, which meant needles every hour just about. Again, horrible. They both scared the other every time they cried. It was a dumb move on the part of the nurse in charge and I told her so. She very obviously was NOt a mother, and she callously blew us off. Perhaps when the floor supervisor/director also talks to her about it because of my complaint, she will then listen. On the bright side, we really liked that family - they were good people, about our ages, and were good roommates except for the fact that the kids should NOt have been paired together. Stupid, stupid, stupid. It was a hell stay in the hospital. The other news: Remember how Quinn has a leaky tricuspid valve? Remember how I almost never mention it? I've always sort of treated it as a secondary detail, not really sure what to say about it, because other than letting us know how the leakage is and telling us it will have to be repaired, the doctors don't say much about it, either. Until yesterday. His regurgitation is almost all the way to severe now. It is REALLY taxing his heart. The valve will either need to be repaired or replaced, and neither option, frankly, is very appealing in what it will entail. There is a tiny tiny chance that they will try to repair the valve when they do the Fontan. Not likely,as Dr. Fiore, our surgeon, is moving away from doing that, since it places way too much stress on the patient and makes for higher risk of complications. So it is very likely that it will be a separate surgery from the Fontan. And before the Fontan, as it is a very high priority right now and to do the Fontan first would put his heart at even greater risk and wear it out even more. Translation: two surgeries this summer, about a month and a half to two months apart. Then there is the matter of the valve repair and what it involves: IF they repair the valve, it will likely need a replacement in a few years anyway, as the repairs almost never last, and it will wear out. If they REPLACE the valve, not only will they have to replace it again in a few years when he either outgrows it or it wears out, but he will also have to be on Coumadin, which means more blood work because keeping those levels right is tricky business. Translation: More surgeries and more poking and prodding and more trauma for my already over-sensitive traumatized boy. I will refrain from commenting on my state of mind right now. Nothing short of telling me I can take his place will help me to feel okay about this right now. Thank you everyone for keeping us in your thoughts and prayers. Keep them coming as long as you're willing - we need them more than ever now. I am so greatful for all of you. Oh, I almost forgot - nothing is in stone about dates and such for the surgeries yet. Monday will be the big consult between the cardiology team and the surgical team, and they will call us after that and set up appointments for us to tlak to the surgeon and his team and figure out when we want to do everything. So onward we wait, until Monday.

Mon May 19, 2003

Today I sit on my hands waiting for "the call" from the nurse to schedule with the surgeon, and hopefully a little extra information. We had a wonderful weekend of doing mostly nothing and taking it easy, not having Quinn do too much, mostly being at home. He is just happy to be home and is doing very well here. The only time he gets mad is when we have to change his groin bandages (it's a sensitive area in the first place, plus it's all bruised from the cath, and here we go ripping his band-aids off of it to change them). As I was typing, his cardiology nurse just called. I know very little more than before, except we need to get his renal ultrasound scheduled (one kidney was a bit enlarged - I hadn't mentioned it because this happened last time and it turned out to be nothing/other factors like full bladder, etc), which she is going to take care of.

I left a message with the surgeon's secretary (his nurse is on vacation this week (!)) so we can get that scheduled - the big appointment where we talk about everything and decide together the best course of action and how soon to take it. She DID say that he mentioned wanting to do it in two separate surgeries (we basically knew this), with the valve REPLACEMENT (not repair, too tricky and too many possibilities of return leakage and complications). But instead of the original 1-2 months apart we originally inferred, more like a week apart - so one hospital stay, extended. This is actually rather a relief to me - get it all done in one fell swoop, so to speak, one big visit rather than two little ones. Still two surgeries, but only one hospital stay. And Quinn is sleping peacefully in the living room.

Tue, 20 May 2003

We have an appointment! We go and do the consult with Dr. Fiore' (Q's surgeon) next Wednesday the 28th at 2pm. It is actually a huge relief just to have the appointment, actually - one less thing to think about and one step closer to "formulating the plan" for his surgeries this June.

Oh, and the renal ultrasound is the 30th, also at 2pm. They seem to think they'll be able to do it without sedation. HA! I chortle in their general direction, silly fools!

Wed May 28, 2003

Well, I have to do it sometime, right? We spoke with the surgeon today and this is what we found out: Quinn needs his valve replaced NOW. His surgery is Tuesday. Yes, THIS coming Tuesday, June 3rd. It's really bad and cannot wait. The Fontan, however, CAN wait a little while, and will most likely be in September or October. That way his body that has lived his whole life with a leaky valve can get used to having one that doesn't leak. He can adjust and heal from the surgery. We won't schedule the Fontan until after the valve replacement. We go in Monday for a "Bleed Time" (since he is on baby aspirin and it won't have been a full two weeks before surgery that he has been off of it they need to check and make sure he doesn't bleed out too much for surgery). Provided he passes that, we're in there Tuesday at 5am. I'm kind of numb and sad right now - I feel like we've been sucker-punched again, with this all happening so soon - I thought maybe we'd at least have two weeks to prepare, and we have only 6 days. Well, we go on. I'm sure after a good night's sleep things will look more clear.

Mon Jun 2, 2003

Well, Quinn passed his bleed test today as we knew he would, so tomorrow at 5am, we go to Cardinal Glennon for his surgery.

They are going to replace the leaky tricuspid valve once and for all.

Wish us luck and keep us in your prayers.

Wed Jun 4, 2003

Wow, wowie, wow, where to begin.

All last week after we found out Quinn was having his valve replacement I was a wreck - edgy, angry, irritable, crabby, sad, crazy. Then Tuesday came: Surgery Day.

We had to be in the hospital at 5am, I woke up sans alarm at 2:45 and got up. Oddly, despite all my angst all week long and longer even, I felt a sense of amazing calm.

We went in to the hospital and got Quinn all ready for surgery, then had an hour to wait until they did anything, so *I* got to hold him as he fell asleep on my lap, head on my shoulder. It was wonderful.

Dr. Fiore' came in around just pre-surgery time to say hello and talk. He informed us that he had gone over it with the "team" again and they had decided to do the valve REPAIR (read: no Coumadin) rather than the replacement, because, "each kid ought to have one chance with his own valve. ONE."

What?!? But 5 days ago you just told us all the reasons you did NOT want to do the repair. And we trust him implicitly with our son, so we said, "Um, okay," and that was that.

So he went in for surgery and we cried (he was all happy on Versed), and we waited.

They did the valve repair AND patched the narrowing pulmonary artery and everything was totally smooth and totally great.

At 4pm, they wheeled him into the PICU. By 5 we were sitting next to him remarking on how amazing he looked. Clean incision, good color, comfortable.

Today he came off the vent - this morning, actually. All day he has been doing well. I talked them into letting me give him ice chips because he was thirsty (I asked for water, we compromised), and he has Elmo videos, Fentanyl, Tylenol and his binky, so he is doing all right.

Tonight we sleep at home because they are giving him Chlorohydrate if he wakes up and is cranky, so he'll be out for the night.

SO...we wait. He will heal up this week and we'll likely have his Fontan in September, before cold and flu season hit. Unless Dr. Fiore' decides otherwise, which he is prone to doing.

The next 3-6 months are when we find out if the valve is going to hold. Keep those prayers coming! They are working beautifully!

Tomorrow they are going to take out some of his drainage tubes, feeding him slowly through the G-tube, I ought to be able to hold him on my lap, and he will be weaning some off of the Fentanyl.

So far everything has gone smoothly and uneventfully. THANK YOU EVERYONE for keeping us in your thoughts and prayers - it is working! We are very happy parents right now. And please keep them coming for the week and months to come, this is our critical time for that valve.

Fri Jun 6, 2003

Well, after a brilliant first and second day of recovery from surgery, we began what heart parents like to refer to as the roller coaster ride.

Quinn had three seizures sort of in a row after being given a little booster dose of Fentanyl after they tried to wean him from it and into Tylenol 3 with codeine. I am told by about everyone that it is about impossible that it was this that caused it, but my mommy intuition tells me otherwise. It may not have caused it per se, but I believe it was the straw that broke the camel's back, as it was given to him instead of food, which in my opinion (my gut) was what was REALLY needed at the time. Just a little bit too much stress at once, and his body just went into shock.

(This actually happened before, when Quinn was first born and his body began to go into shock, the night after we brought him into Glennon he had a seizure. No neurological damage, no need for follow-up. So they consider this a "history" for him.)

So of course they ran a barrage of tests - EEG showed good brain activity and that the seizures had stopped (yay!). Echo of his heart showed no clots (whew!). And the test we waited for ALL night, and the most important one in our opinion, the CT scan, showed nothing abnormal - everything looked good. THANK THE POWERS THAT BE.

So he is re-intubated and again on Versed...I am going to ask that this time when we begin to wean him since he has had a couple of days if maybe we can go straight to the Tylenol with Codeine and skip the Fentanyl altogether - it definitely has its time and place, but I think it has outlived its usefulness with us at this point.

Re-intubated, just about when he was about to get some ice cream. Two steps forward, three steps back...

The one sort of okay thing about his being intubated, though, is we were able to come home and get some rest since there is virtually no chance he will wake enough to really know what is happening, and he is in the best hands he can be in in the PICU (besides ours, of course).

So now we are rested and ready to face another day of healing, and hopefully an uneventful one at that.

Incidentally, EVERYONE in the PICU except our roommate had a suck of a day yesterday. There were crying faces ALL over the second floor ALL day and long into the night (I went home at 11pm). Please pray not only for us, but that after yesterday's "rain" (of tears) that today beings some sunshine and with it a rainbow.

Thank you all for continuing to keep Quinn in your thoughts and prayers.

Fri Jun 6, 2003

I don't know if I ought to update now while I am so drained and numb.

Quinn was extubated today and he is doing well. They started Phenobarbitol for the seizures. MRI won't be until Tuesday, we got bumped for some emergencies.

Quinn is sleeping comfortably, but his fight is gone. He is resigned and listless when he does wake up, and his only comfort seems to be Thomas the Tank engine. He won't look at me or Josh and is unresponsive, although his pupils continue to be responsive and he squeezes his eyes shut whenever they try to check him. He is not moving his left arm at all or his head.

We are freaking out and numb at the same time. I don't know what to feel.

Maybe he is hungry and weak from no food (they give him calories and stuff to keep him going, but it's just IV fluids, it doesn't offer any energy boost). Maybe he is so drained from the pain and being messed with he just wants to sleep like we do.

His central heart line came out today and I could have held him, but he was sleeping so peacefully I didn't try to mess with him since his drainage tubes are still in and it would have been a big complicated mess to try and hold him. It was time to come home and rest anyway. I feel like a suck Mom that we opted to come home and rest rather then go through the rigamarole to hold him. (I am only sharing this (the suck mom part) and don't need reassurance, please. It won't help right now.)

We are so drained and tired, and feel sad. Quinn has such fight in him usually, he screams and fights and lets you know when he doesn't want you messing with him. He is doing none of that - just lies there and barely opens his eyes and barely looks at anything. It's like he is giving up.

Please pray/chant/dance/do pujas/voodoo/think/Reiki/meditate/etc that he gets his fight back.

The nurses and docs tell me it can be the Pheno, it really makes them sleepy and has a bit of a pain relieving effect for the first couple of days. I hope it is the Pheno.

He has to get his fight back.

Tue Jun 10, 2003

The Mighty Quinn, our hero and the greatest joy of our life, died last night, June 8th, 2003 when his heart arrested.

We will have a ceremony in honor of him on Friday, June 13th, at 11am in our backyard.

Donations can be made in his name to Cardinal Glennon Children's Hospital - they took phenomenal care of him and us while we were there.

Thu Jun 19, 2003

We had an amazing and beautiful Tibetan ceremony in our backyard for Quinn on Friday the 13th. For 49 days, while he is "between the worlds", so to speak, we will continue to burn candles, say mantras (Om Mani Peme Hung), think positively, and try to hold love in our hearts as much as possible for him, to help him to transition into the "above" so he can freely incarnate into another body or as an even higher form.

Lama continues to say prayers and make food offerings to Quinn's spirit. Every Sunday we go to meditation with Lama and say prayers with him (chenrezig) for Quinn.

We are trying our best to sort through all of Quinn's toys and give them away as is Tibetan tradition. His toys especially can hold his spirit here and make the transition tough. We want him to be able to let go freely. But it is difficult for us, as we also have an attachment to his toys, especially his favourites, and it feels like giving them up is the finale of really letting him go and admitting he is gone. And it is in a way, it allows him to go freely into the beyond.

We have decided that the best way to honor Quinn is to have another child. For this, I must get into shape, as much as possible,. to give this new body the nest chance I can at being healthy. So now this is our goal. My goal.

Also, a Memorial tree will be planted in Lindenwood Park (in St. Louis, MO - it was the park Quinn used to love to play in) for Quinn, and we are attempting to find out about also having a memorial bench under his tree.