Isaiah Heart and Health Update

Well, the day before Isaiah's cath was scheduled he woke up with a very high fever, which has not  ever happened since we have had him in our lives. It got as high as 103.8 at one point. The cath was cancelled for the following day, as they won't do a cath with the potential of viral illness like that. He had no other symptoms beside fussiness and not wanting to eat, saying his tummy hurt. The following morning his fever was completely gone and he seemed healthy. I was a bit frustrated at first, not sure why God would allow this to be cancelled. I did surrender it to God though, knowing He has Isaiah in His hands and I am not going to be in control of even the timing of his cath, as much as I wanted to be. LOL

We had a sleep study scheduled for him for February 28th, because of his ongoing, terrible sleepless nights. We did ask them to keep us on the "Cancellation List" and on last Friday morning we got a call that they had an opening that night if we wanted it. I jumped on that chance and Isaiah and I were headed down to our Children's Hospital just a few hours later. 

It was a VERY long night for him. The technician was very thorough and kept coming in and trying different things on him to help his pressures. It seems he is hyperventilating from trying to breath and there is definitely severe sleep apnea going on. He had high CO2 levels through out the night that suggests that.

The doctor who read the study the next morning called us before we even made it home (1 1/4 hour drive home). She was very concerned about what was witnessed all night and asked if that was typical for Isaiah? I told her it was not totally typical but did happen part of the night just about every night and happened as bad as that, once a week on average. She recommended we get him into the ENT asap. He also would need a CPAP machine as well as this type of apnea doesn't usually totally go away even with tonsils/adenoids removed.

Yesterday morning, Jay took Isaiah to see the ENT and Pulmonary Sleep Doctors and get him fitted for a CPAP mask. The ENT doctor scoped him (they went down his nose with a camera which he was very brave about). What they found is that yes, his tonsils and adenoids are contributing to the blockage but only by 25%. The other major issue is that his left vocal chord has been damaged from his open heart surgery. So my knowing that this happened after surgery was right on! When are doctors going to listen better to mothers? Just thankful that he did not have his cath last week. God is so in control of everything and does care about protecting His little ones. What a faith builder this has been for me.

So it was still to be decided if they should remove his tonsils/adenoids or just wait and see if the CPAP does enough. My concern is that if they are causing some airway issues, which he did have that before the surgery just not as severe, and he has many procedures through out his life in his future and while the nerve in his vocal chord theoretically should heal, but may not, then of course they should be removed. Isaiah needs all the help he can have regarding this breathing issue. He has enough issues alone for his pulmonary hypertension. Thankfully, it seems the doctors agreed.

So right now, we are waiting to hear from the ENT to schedule that surgery. Because of his age and airway issues and heart issues he will likely be hospitalized for up to 3 days following this surgery. And they suggest waiting at least a month for him to heal before his heart cath is done, because of intubation and swelling etc. Currently, the Cath was put on the calendar for March 24th.

Not sure if that will work out for that date or not now. Again trusting the Lord to work out those details. He will also need an xray for swallowing to make sure he is not aspirating. He has had that done, but it was before October's heart surgery and all looked good then. He will also need another sleep study after surgery and on CPAP to make sure his pressures are good with the machine set up.

God is good!! Isaiah is so brave and such my hero. How blessed I am to be called "Mommy" by him and so many other precious "babies" of many ages.

Here was the night of the sleep study. It took over 30 minutes for the tech to get all the electrodes and stuff on him. He also had a cannula and a sensor over his lip to make it complete. I was not supposed to have my phone on during the test so after I took this picture I shut it down.