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August 18 -6 days till surgery

posted Aug 17, 2010, 11:36 PM by Sean Molby   [ updated Aug 17, 2010, 11:44 PM ]

Tristan had his appointment with cardiology Monday and it was a rather stressful and fairly traumatic appointment. For those that don’t know Tristan has not been feeling too good lately. He has been congested, runny nose, possible sore/irritated throat, no fever (thank God) but he has been pretty fussy and has refused ALL oral feedings. I contacted the hospital last week concerned and wanting to find out what I should do, as they had wanted to do his surgery on Monday, August 16th -though that ended up falling through.

Needless to say calling the hospital turned out to be a bad thing because Tristan’s nurse was out and so I had to contact the cardiology clinic in an attempt to get through to his cardiologist. The nurses there gave me the run around and I ended up speaking with someone who turned out to be new, well she decided INSTEAD of contacting Dr. Kaine (Tristan’s cardiologist) like I was asking she contacted surgery….HUGE mistake, they then took her interpretation of what I was saying and cancelled all possible surgeries for Tristan for the next FOUR WEEKS. That would not be such a big deal if Tristan would be strong enough to survive that long, however he is not. His first stage procedure is rapidly expiring and if surgery is not done soon- in the next 2 weeks he will no longer be a candidate for surgery and they will simply provide comfort care until he is no longer with us.

THIS IS NOT A POSSIBILITY FOR ME. Sorry, but Tristan has not fought this hard and over come so much to just give up now. So, I was rather freaked out and incredibly pissed off when Dr. Kaine informed me that because I told surgery that he was severely ill they refused to do surgery, especially since I did no such thing. Thankfully it all got straightened out, kind of. I explained that we tried to get a hold of him last week for info on what we should do and signs we should look for; assured him that I didn’t know what was wrong with Tristan just that he is not acting normal and that is why I was calling and that he at no time has had a fever or other signs of severe illness. Just the runny nose, coughing, etc, which I said could still be a symptom from being intubated, or possibly allergies, or we had even discussed the slight chance that he may be teething. I told him I just didn’t want them not knowing what was going on when we have such an important surgery coming up. We then all found out about the other nurse contacting surgery and so on and so forth. Anyways, after a checkup and reviewing Tristan’s case Dr. Kaine personally contacted his cardiac surgeon and discussed the emergent need for Tristan to have surgery now, as his echocardiogram is showing a significant decrease in pressure in the valve that started showing blockage just a couple of weeks ago-meaning it is closing and at a faster rate than is safe- and assured him that he did not seem to have any respiratory infection that should cause any difficulties with surgery. Luckily Dr. O agreed and they decided that the complete need for surgery ASAP outweighed the slight risk of Tristan feeling somewhat off and grumpy. Cause without the surgery he WILL die but with it he has a chance.

 

Sooooo, surgery day is now fast approaching. It is scheduled for this Tuesday, August 24 at 7:30 AM- Tristan’s will be the only surgery for his cardiac surgeon that day.

 

This is a terrifying scenario for a mom, to know that my baby boy is going into open heart by-pass surgery. I have cried more in the last two days than I have since he was in the hospital the first time. To have to go through all of that again, I am not going to say I can’t do it because I can and I will. I will do whatever it takes to help Tristan through this but it is very hard and heart wrenching to know what he will have to go through at only 4 ½ months of age. This will be his most critical surgery.

It will be long (6+ hours), it will be invasive (they are doing 2 ½ procedures as opposed to the normal second stage of just 1), and it will be dangerous (he is younger than most who go through the 2nd stage and in a sense weaker)

I have to believe that God has brought him this far for a reason and it is not to just give up on him now. He has to make it through this next hurtle.

 

 I can not imagine not tucking him in every night for bed or waking up to his beautiful smile every morning, or not watching him smile up at his sisters as they talk to him and play with him. He is more precious than words. So sweet and perfect and just wonderful. He is such a joy-I hate that he has to go through this, if I could trade hearts with him I would in a millisecond. It is so not fair that an innocent baby has to go through this. Being at the hospital I saw so many little ones fighting for survival. Amazingly I watched as these tiny little wonders fought through what most of us can never imagine, they have more strength and determination that seems possible; and sadly I watched some not make it, and I cried with their parents as they passed on.

 

I would like everyone to do me a favor. After you get through reading this, the first chance you get, I want you to go to or call your kids, (and other people you love) and tell them. Tell them how much they mean to you. Tell them what they mean to you. And don’t just tell them today, tell them often. So many times we take for granted the days we have. Don’t waste the ones you have. Cherish them and your kids. Give em a hug and tell them how wonderful they are for no other reason than for them to know how proud of them you are and how loved they will always be!

And if, when you’re done, you could get down on your knees tonight and again Tuesday morning and pray for Tristan we would be forever grateful. All your prayers got him through last time and he needs them even more now. Please if you are a church member ask your congregation to pray for a safe and successful surgery this Sunday. Light a candle, do whatever it is you all did last time. If we have as many people praying for him this time as we did last April –May he will feel it and he will fight because he will know how much we are all rooting for him! I believe this with all my heart.

Thank you everyone for everything and please, please pray! ~ Christy

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