Nugget’s Story

Site created on May 17, 2020

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Newest Update

Journal entry by Ashley Phelps

Happy Thursday! 

Mikai was discharged this morning and we are now home back. :) 

Yesterday went well! I think mom & dad were probably more anxious & nervous for how Mikai was going to handle everything but he was a complete rockstar! We arrived at 6:00am - went through the whole pre-op and Mikai was rolled back around 7:30am. They gave Mikai a little Versed before they rolled him back, more so to help him relax and 'not remember' what was going on. They also didn't poke him or put an IV in during pre-op, so it made the experience easier on all of us. 

Mikai did very well during the Cath. The biggest objective was getting pressures & images of Mikai's heart to assure he was a candidate for the third surgery, the Fontan. His pressures were low, which is ideal, and imaging looked good. The cardiologist did end of ballooning the areas where Mikai has two stents, and where his vein is attached to the pulmonary artery (Glenn). Obviously, stents don't grow with you so they will always need to be addressed -- and the Glenn has always had a little narrowing at the attachment but flow has never been disrupted. His blood flow was still good yesterday, but knowing surgery #3 is in the future, the cardiologist figured he would address this now vs. having to during surgery #3.

After speaking with Dr. Aldoss (the cardiologist who did the Cath), he said Mikai was a good candidate for the Fontan.  Now we just need to decide when is the best time to do the surgery. We were kind of thinking sooner than later HOWEVER, Mikai's surgeon, Dr. Ricci has recently left for Cincinnati Children's Hospital. (BIG BUMMER) They do have a surgeon on staff still, but always like to have two surgeons in these types of surgeries -- so we do need to wait until the second surgeon is on staff. They believe that will be in March. Dr. Aldoss also mentioned because Mikai's numbers were good, his oxygen saturations were in the mid-80s, we could probably wait until summer/fall to do the surgery. Mikai's team will discuss his case in the next couple weeks, and we have an appointment with Dr. Reinking & Trudy on the 14th. One point that was brought up yesterday was you don't want to wait too long to do the Fontan, but you also don't want to do it too early or if you don't need to right away -- doing the Fontan, and having the Fontan circulation opens up a whole new group of 'potential' problems/timelines that could arise. A year of so after the Fontan, Mikai will start to be seen by various specialists who monitor his liver & kidney function -- as those are areas that can be affected by the Fontan circulation. So... the longer to can hold off the Fontan, the better. 

Mikai had a great night last night. His #s were good, his sites (where they went in for the cath) are healing well and he really didn't experience much pain. 

We are happy to be home and want to thank you all for your thoughts & prayers! Please continue to pray for Mikai, and for mom & dad as we decide Mikai's next steps. 

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