Once again- I haven’t posted in awhile. This last months has been crazy though.
Of course, there has been the morning sickness which is part of why I haven’t been posting. I have a hard enough time getting everything done around the house let alone sitting down and writing a blog post.
I have also been putting more time into reading my Bible and devotional every day. Plus- I have my baking to do at least once a week! (4-5 loaves of bread at a time!)
Then there are all of Kasey’s appointments and therapies. We’ve added in OT again but Feeding therapy should be ending in the next few weeks so we’ll be down to 2-3 sessions a week instead of 3-4 sessions of therapy.
Exciting developments recently- Kasey started learning to use her RGO’s and is getting the hang of them. I think within a few months she’ll be doing pretty well in them. She managed to take a few steps with her right foot by herself the other day (holding onto the walker and with her therapist right behind her).
Then we have our not so great news lately.
First- we found out that Kaseys gastric emptying is not so great. No full meals allowed- just smaller snacks throughout the day.
Then- we had a bunch of tests done one day on her upper GI, her shunt and skull in general. We then got to go sit at her neurosurgeons office until they could fit us in.
I should have realized the news wasn’t going to be great with the speed in which we got called back and the doctor came in. We started talking about her recent symptoms and he was just nodding. I knew something was going on because otherwise he would have been telling me that those weren’t troubling symptoms.
However, he then started telling us what he saw on the scans. The shunt tubing and everything seemed to be connected correctly. However, her ventricles are enlarged. He feels the shunt is going bad. He then started telling us what he suspects is the problem (scarring in her tummy from previous surgeries) and telling us the issues we may run into.
1) There are 3 places they can put the end of the shunt tubing to let it drain. The neck arteries , the chest cavity or the stomach. On a small child- the most ideal is the stomach. The neck arteries aren’t a good option because 2 of the 4 are too tiny- and the 2 that aren’t are barely big enough and when one gets scarred over they have to switch to the other one and then half their neck arteries are scarred over. The chest cavity isn’t great because there isn’t a lot of extra space and then they end up with issues with crowding in the chest and their chest looking bigger and some other stuff. So- we have to have and pray that the scarring in her abdomen isn’t too bad for them to move it if that is the issue.
2) Since they aren’t sure what the exact issue is- they may be able to just mess around at the top of the shunt- but if they don’t find it- they will have to pull the whole thing and go into her abdomen and look around. This means more incisions . As it is- the one in her head from when she was tiny is going to be enlarged to get in and they will have to shave off a rather large portion of her hair (which she is not going to enjoy.)
3) Side Effects- There are the typical side effect possibilities from this surgery. We mainly have to worry about the possibility of infection. If the shunt gets infected they have to go back in, take it out, allow it to heal and then put a new one in and pray for no more infection. IF (and I pray this does not happen) she gets an infection- its a month in the hospital. Even if one does not happen right away- the first year is the worst for it to happen and then the second year is a bit better. So until she’s 6.5 years old we’ll be watching her closely for issues.
We haven’t told her yet. Surgery is this coming Thursday and we will be telling her Monday. We know that if we told her too soon- she’d be even more anxious than normal. Her anxiety has been spiking recently as it is.
We are praying that a lot of the issues she’s been having the last couple months disappear once she heals from this surgery. The hospital stay won’t be bad at all this time around but I think the hardest thing for her will be the pain and all the anxiety she ends up with. However, we will make it through it like we always do. Plus- her grandma, auntie and cousin are coming into town so she will have plenty of people around to cheer her up!
To be honest- even though children with Spina Bifida often have numerous shunt surgeries over the course of their lives- this surgery scares me more than the others she’s had. Just thinking about the fact they will be messing around in her skull- well it is scary. There is the chance they could poke the wrong thing and she could wake up even more paralyzed and etc. Even those the chances are small- it scares me. It was scary when she was 72 hours old and had it done- and its scary now that she’s 4.5 years old.
However, I have to be strong for her. I cannot let her see I’m scared. The moment I dread is when they take her back to the OR. I always tear up then- I’ll admit it will probably be worse this time around too. Pregnancy hormones and all that jazz!