Barrett's CT Scan and Next Steps...

We had to be at Cook Children's at 6:00am.  I got up around 4:30, so to say the least, I am exhausted!  We got there and got all checked in and we waited... and then moved to another room and waited!  Barrett was in a really good mood for it being so early and for not having anything to eat or drink.

 



 

Bright and early in the morning! 
He was a lot happier than we expected,
because he isn't much of a morning person (he gets that from his mom...)

We waited and waited to go back....

We were called back to get the process started.  They went through a series of questions, etc.  Barrett was his normal (shy) self when we got back in the room with the doctors and nurses.  He takes a little time to warm up to people.  We knew that they were going to sedate him.  They walked us through the steps of how it would all go down.  The nurse brought in a syringe of 'loopy juice' to get him nice a sleepy before they took him back to start the gas.  He spit out the medicine all over me - should have expected it.  Then the nurse offered a nasal spray and said that kids hate it... and guess what?  She was right!  Barrett was freaking out!  He was crying; his heart rate was up.  He kept saying that he needed a drink, which we couldn't give him... and said he wanted to leave, which we couldn't do... After the nose spray he kept saying, 'get it out, get it out'.... man, talk about feeling bad for your kid!  I almost cried, but I held back the tears.  I understand the importance of being strong for him right now and I am trying my best! 

After a few minutes, he started to settle down.  I sang him a little song and rocked him.  He wasn't asleep, but you could tell the meds were kicking in.  They only allowed one parent to go back with the nurses to get him on the table and get the gas started.  Bonham and I had discussed that I would go, unless Barrett wanted otherwise.  Fortunately, since he was already in my arms and kind of drifting off, he just stared at me... he didn't say anything about Bonham going with him (he is kind of a Daddy's boy). 

I laid him on the table and they put the mask on him.  The nurses and doctor had warned me about some things that might happen once they put the mask one, but it was perfectly fine.  Barrett laughed at the doctors jokes and he closed his eyes after a few seconds of the gas.  They had me give him a kiss and leave, so they could start the IV and then perform his CT scan.

About an hour later, they called us back to see him....

Sweet Barrett... sleeping off his meds

He was sleeping HARD!  They said that if we let him sleep a little longer, it wouldn't be a big deal and it might actually help him to be in better mood.  So, we let him sleep... When he woke up, he drank a little apple juice and.....



 ...the popsicles he was promised.
He ended up having getting 3 of them before he had to cut him off!  :)

He was looking at the TV, but he's giving us a thumbs up for getting to go home soon!

Barrett kept calling this his 'cast'
He didn't pull on it and mess with it as much as I thought he would.

Bonham was telling him about the IV and he was listening... good little patient!

He did really well with the anesthesia.  The nurses and doctor prepared us for him being moody, emotional, loopy, nauseous, etc.  By the time we left, he was wanting to climb and try to run!  It didn't seem to phase him.  What a blessing!  That gives me hope that when he has surgery, he will do well with the meds and anesthesia.  The only problem is that he might think that we get to go home the same day again and he will have a lot more discomfort.  I pray that they are able to medicate him to where it won't be an issue.

 

 

So what are the next steps????

1. We meet with the surgeon tomorrow morning to review the CT scan and work out any details of the surgery
2. Pre-op appointment on the 8th
3. Surgery is scheduled for the 9th
4. 7-10 day hospital stay
5. Continue recovery at home and have regular check-ups to monitor the repair

 

It's hard to believe that we just found out about this a week ago.  In a way, it seems like forever...  It's hard to believe that it's our healthy, active, happy Barrett.  I can't even imagine how active he will be once the blood flow is regulated!  Look out world!

 

We have complied a list of questions for the surgeon for tomorrow.  I meant to post this list sooner, to get some feedback on additional things that we should ask, but time got away from me... I'm sure that you understand.   ;)

 

Here are some of our questions:

• What will do at the pre-op appt? Blood work, etc?
• How long should the surgery last?
• When can we see him after surgery?
• When can he have visitors?
• Can we stay with him and if so, where do we stay and how does that work?
• When can he resume normal activities (school, playing outside, traveling, etc.)?
• Will we get a list of restricted activities?
• Should we get Jayna's heart checked too?
• Are there any foods or meds to avoid after surgery?
• Details about wound care...???
• Is there anything that we need to purchase ahead of time (medical equipment)?
• What are the chances of the repair not holding or the aorta continuing to narrow?
• What would cause this to happen again?

 

There are a few things that we expect them to elaborate on, so we didn't figure we needed to list them out.  Knowledge is Power, right?  Looking forward to learning more and getting on the road to recovery!

 

 (Not really enough energy to proof read before I post this, so please forgive me if there is anything that didn't make since.)

I will try to post an update after we meet with the surgeon.  Good night...