Home Again!

Isaac made his grand exit from CMH about 48 hours after we arrived. That in and of itself is amazing for what he had done. He got to enjoy the 4th of July here with our families. We had a great time with everyone. We sufficiently tuckered him out and he slept in on Sunday until 9am. Which, if you know our boys, anything after 6:30am is a blessing!

We are now a few days back into our 'normal' routine. Isaac is starting to get around some on his own both in his wheelchair and on the floor. He is now just on Ibuprofen only for pain management. He took a dose last night before bed, and then refused it all day long (and seemed to do alright). We did give him some tonight, as we needed to take his bandages off and redress the incisions after a bath.

He has two incisions that essentially go the length of his back, but there is about a 2 inch space in between the two incisions in the middle of his back, where the skin is intact.

Isaac is now at the age where he is asking a lot of questions about "how did those owies get there?" and so on. Those are hard discussions to have, yet we're being as candid and matter of fact as we can be, and still be age appropriate for him.

We are looking forward to putting this surgery behind us, and getting ready to have fun the rest of the summer before kindergarten starts! Yikes!

Surgery is over!

We just met with Dr. S and his nurse - surgery went very well. Isaac has his new hardware, and is in recovery. We'll be headed to see him very soon!

Dr. S did let us know that Isaac is very sensitive to the neuro-monitoring. He said that once they notice the monitoring start to fade, they can raise his blood pressure, and it will come back. Other times when this happened during the procedure they gave him a bolus of fluids, which also brought back the monitoring. This is significant, as we noticed about a month ago his legs started to get very spastic. After paying closer attention, he was also showing signs of dehydration. Once we got him full of fluids,t he spasticity diminished. So, my theory at that point has been proven. We'd linked the spasticity to the dehydrattion, and felt that it was a good hypothesis, but this pretty well proved it out (or at least Dr. S said that to make me feel smart!).

Hugs! 

Surgery Update for Isaac

It was fitting as we woke up this morning and realized that it is the 5th anniversary of Isaac's first surgery (was less than 2 months old)! Today, Isaac is undergoing surgery to remove the current growth rods and screws that stabilize his spine and replace all of those things with new rods and screws.  There are a couple of reasons for this procedure.  First, Isaac has had multiple staph infections and it is believed the infection could be living on the rods or screws.  We have been controlling this infection with long-term antibiotics, but he has now been on these medications for almost a year now.  The doctors believe we need to try and get him off the antibiotics as soon as we can.  Secondly, we are nearing the end of the length of the current rods and he was going to need to have them replaced with longer ones soon anyway.  We decided with his doctor that getting this done over the summer, to allow Isaac to be fully recovered and back to 100% before school starts.  

Isaac continues to be incredibly brave and strong through all of these procedures (this is surgery 13 we think).  This morning, he didn’t cry, just a little quiver of his lip when we had to leave him.  He was talking about what he wanted to eat afterwards (request was for Rice Chex!). We have ongoing discussions with him as he asks questions about his surgeries:

“Why don’t you come into the room where you don’t go?”

“How many nights am I going to stay at the hospital?”

“Will I get to stay in the super fun bed?”

“Will you buy me toys at the gift store?”

“What is Dr. Schwend going to do?”

As you can tell - some fun questions, and some questions, not as much fun to answer. But we are always upfront with him and answer honestly.

We hope that Isaac will only be here a couple of days, but we also know that things change, so we’ll roll with it!  We have fireworks on standby at the house, and if he is here, we are hoping Crown Center is doing a display and he can watch from a window here at CMH.  Thank you to everyone who continues to say prayers for a little guy and give our family strength and encouragement.  Our support network is absolutely incredible and we couldn’t be more thankful.  

Once Isaac is out of surgery and in his room, we will do another update.  Thank you again.  Isaac rocks!