Maybe the kids are getting too comfortable with medical emergencies...

Yesterday, Isaac had 22 EEG leads stuck to his head and chest. We were hoping an ambulatory EEG could capture the seizure activity that we have been seeing in Isaac over the last two weeks. Isaac woke up irritable even before we left to go to the neurologist office. The EEG seemed to overload Isaac and he was even more agitated. By the evening, we decided to have one of Maisy's nurses come in to work overnight with Isaac and help us record the seizure activity (we of course, as it often goes, we didn't see any of the seizures we were trying to capture.) We were really hoping to get a good night's sleep. Isaac started having trouble breathing. By 2 am, I could here his alarm going off repeatedly. Isaac was on 4 liters of oxygen (Over two times more than he would usually need even in a crisis.) Even with the maximum in home oxygen support, his O2 stats were only in the low 80's. We had followed the home protocals we had been given by the doctors--added nebs, meds etc. But we had not avoided a crisis. I had no idea what else to do but to call 911.

Sound asleep..

 So at 2:30am, Isaac and I took a ride in the ambulance to Minneapolis Children's Hospital. After 14 tries to get in an IV (that is not a misprint!) They finally were able to place the IV. But, by then, his breathing was very sporadic and they had blasted the O2 to 15 liters. Things calmed down after about 1 1/2 hours of crisis in the Emergency room. He is now admitted and dealing with the same issues we were dealing with last hospitalization---the profound effects of the brain damage that Isaac suffered early in life. The MRI results were reviewed with us last week--severe diffused (meaning through all portions of his brain) damage in which the core of the brain took the brunt of the damage. Also, it appears that lack of oxygen caused more damage in the first months of his life.
Isaac's respiratory status does not seem to be the biggest issue for him...it is his neuroirritability again. Possibly something as simple as getting a couple of teeth could have triggered this event. These are his first teeth and he is almost 17 months. He has had a really great couple of months. We have cherished those times. This episode of neuroirritability seems more mild than the first one he had with us in April. We are awaiting the EEG results as well.
So, back to the title of this message..the kids just could be getting too comfortable with medical emergencies. An alternative title could have been....The kids are far too used to Mom taking so many pictures. When the ambulance got to the house, Brennan and Jordan woke up. It was like a middle of the night "vehicle day" at the Martindales. The first responder was on a motor cycle. There were police cars and of course, an ambulance. Once they asked if Isaac was going to be okay,  and we reassured them that Isaac was in good hands and was going to be okay, they proceeded out to the driveway to see the vehicles up close.  Jordan even asked if he could go get the camera so we could take pictures of the inside of the ambulance.
I am thankful that they were not fearful. Stepping into the inside of an ambulance always involves a potential flood of emotion for me. I have been there many times and must breath deeply and say a prayer when I step in. Because nearly 4 years ago, stepping into the ambulance and then stepping out again at the hospital was the beginning of the most life changing crisis I had experienced.
I was so tired and had just battled very high blood sugars because of a problem with my insulin pump, I didn't have alot of emotion left. I was calm and able to handle this ride well. I got to know some more of the Elk River paramedics along the way--a really important relationship to develop when you have lots of kids with medical conditions.

So, now we are adjusting some meds and trying some new ones. Isaac's lung sounds are coarse but not bad. Most likely his lack of oxygen was more of a neurological issue than a respiratory one. We were so thrilled to find that a pediatrician that we have worked with with Elijah has joined the pain and palliative care team. She is the one who will see Isaac with this team--we trust her and know that she will listen to and respect the decisions that will need to be made regarding Isaac's care.

I should have known that we had been experiencing the calm before the storm these past few weeks. I am again have big issues with my blood sugars today(over 600 bg readings.) I have been a type 1 diabetic for 25 years. I am not sure what the root of the issues are today and am trying to figure this out as well. Believe me, it has not been easy to talk to a dozen or so doctors while trying to concentrate and not look completely zoned out like I am feeling. I could use your prayers as I am really praying that things will resolve so I can function and don't end up in an adjacent hospital bed.
Isaac is resting well right now. He is an amazing little boy and we love him so...