Tuesday, January 6, 2009

Hope and Dispair

We have a long day and night behind us... Jacob started seizing around bed time last night. Typically we can control them with valium ourselves these days. This time, he continued to seize and his oxygen level was around 80. We had to call 911, and they took us to Great Samaritan in Broomfield thinking Children's was too far away for Jacob's state of health. He had had 10-12 seizures by that time. They wanted to give him more valium in the ambulance, but accidently gave him 7 mg. of morphin instead. It knocked Jacob out completely! This was not great, but he was able to maintain his respiratory status. They did blood work and took a chest x-ray in the hospital, but didn't find anything.

We then got transferred to Children's ER around midnight. He seized on the way to the 2nd ambulance, but did look a bit better after that. They kept us in the ER all night long monitoring him for seizures. In the morning, they decided to send us home, since he hadn't had any seizures since midnight.

I had this funny feeling that we hadn't seen the last of the hospital this week when we left. Jacob typically doesn't have 10-12 seizures in a row without a reason. He can have 1-2 breakthrough seizures that we can medicate by increasing one of his seizures meds, but this was simply too much. Secondly, the seizures looked differently than his typical petit-mal seizures. He had a lot of jerking of his arms this time.

We didn't even leave the ER waiting room before he started seizing again, and we were right back in the trauma unit of the ER. It was probably one of the shortest discharges they have done! He was then monitored for another 6-7 hours in the ER for additional seizures. He had them come and go despite increased medication.

We finally got a room late this afternoon. We have talked to the senior resident and his primary care physician. Both think he has developed some sort of virus due to his multiple seizures. They are doing different tests, and are also working closely with neurology. He will have an EEG done in the hospital, probably for at least 24 hours.

The time has also come for Jacob to get a medical port. It's a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. In this way, drugs can be injected and blood can be drawn. Jacob has been poked so many times, and it's almost impossible to find a line on him. Each ER visit ends up with them poking him for hours and at times there is simply no way to get an IV line for Jacob anymore. The surgery will most likely happen this week.

Jacob is very weak today resting in Joakim's lap. He is sleeping a lot, and has no smiles for us. He simply wants to be hold. We have to take one day at a time again.

The HOPE in the middle of Jacob's despair is that Adams 12 school district decided to secure a spot at Bal-Swan for him for the rest of school year 2009 as well as school year 2009-2010. They will pay his private tuition for 1,5 years! After that, we'll have to start making a case again, but it will be easier if he is already in a school setting working for him. It is definitely worth celebrating for us when we get out of the hospital, since we don't have to worry about Jacob's school for another 1,5 years at this point. This is also the first exception Adams 12 has done on the preschool level, so all the phone calls, paper work and talking to the decision makers paid off.

Good night, and thanks for all your kind words and thoughts.

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