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September 17- 3 weeks 4 days post op

posted Sep 17, 2010, 10:04 PM by 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 J

 

But 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

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