Home from Madi's Shunt Revision

For those of you who are friends with us on Facebook, you probably saw that Madi was in the hospital for a shunt revision.  We are happy to say that we are home and she is doing well!

Last week Madi had a headache for about 3 days in a row.  I would give her motrin (when she would let me ;)) and it seemed to come and go, but was mostly consistent over those days.  We were planning on going to my parent's cabin in Flagstaff on Friday and I didn't want to take her up if she had a problem going on so I put a call in to her neurosurgeon.  After waiting a bit I decided it was probably best to just head down so I put her in the car and started driving.  When we were almost to Phoenix Children's Hospital (PCH) the neurosurgeon's assistant called me back and told me that it likely wasn't shunt if the headache was coming and going and there were no other symptoms.  They said to go ahead and go to Flag and just watch her very carefully and take her to the Flagstaff hospital and call them if she progressed.  I contemplated taking her in anyway but decided to just keep a close eye on her.  She did pretty well the rest of the day but she had a rough night that night and was waking up a lot so I had her cuddling in bed with me.  When she woke up I noticed her left eye was turning in.  I held up one finger and asked her how many fingers I was holding up and she said two.  I knew what that meant so off to the ER in Flagstaff we went.  The doctor in the ER called PCH and they said it would be best for us to get there.  The doctor contemplated if he should helicopter us over or have us drive, and decided since she was stable we should just leave Flag and drive straight there.  Madi had thrown up a few times by then but was still feeling still and was in pretty good spirits considering. 

 

 

It took us a few hours to get to PCH but Madi did well in the car.  She threw up once and was confused about seeing double but was a trooper.  When we got to PCH we got settled in to the ER.  They got Madi an eye patch so that she could stop seeing double and she was super excited about that.  They ordered a one bang MRI and shunt series and we got in pretty quickly.  They let me go in the MRI machine with her and she did awesome.  After the MRI we were taking x-rays and David told me that they had already reviewed her MRI and it was abnormal and her shunt was indeed failing so they were taking us straight to surgery and he had already signed the release paperwork.  Dr. Shafron, our neurosurgeon, wasn't on that day, so Dr. Adleson met us at our ER room and walked us over to pre-op. 

 

 

 

The kiddos and David waited in the waiting room and I went in to talk with the anesthesiologist and do the pre-op stuff.  He agreed to let me go back and sing to her while she fell asleep, which I really appreciated.  She had fallen asleep during our walk over and woke up confused when the mask was going on her so I was very thankful I could be there to tell her what was happening and sing to her.  They were able to get the IV in her foot after she was already asleep, so that was awesome too!  After surgery prep the surgery itself only took about an hour.  When Dr. Adelson got in there he discovered that the shunt itself was functioning well.  The tubing, however, had disconnected itself.  Basically the shunt was pulling the cerebral spinal fluid through it but it was just accumulating underneath it instead of going down to her abdomen to get reabsorbed.  He left the top part of her shunt in tact, since he had tested it and it was functioning well, and only had to change the tubing and re-connect it.  This meant she only needed one incision; yeah!!  He also was able to go in through her old shunt scar.

 

During surgery I had missed a few calls from the doctor in Flagstaff so while I was waiting to see Madi I called the doctor back.  He said he was worried about Madi and was afraid he made the wrong choice by not flighting her to PCH to transfer her.  I assured him she had done ok in the car and that she was safely through surgery.

 

After surgery they didn't let me back right away, which I wasn't very happy about.  They had wanted to make sure she woke up ok first since she was intubated.  When the woke her up, though, she had woken up kicking and screaming, like I had told them she would (she doesn't wake up well from anesthesia), and was trying to rip out her IV, had already popped a few of the staples holding in the guaze on her head, and was trying to hit nurses so they had to sedate her quickly.  They let me back and when she woke up again, she was doing the same things, so they got an IV med started to keep her calmer and partially sedated and I helped keep her hands away from her surgery site and IV while we waited for the meds to kick in.  Because she was so cranky and trying to push me away I kissed her hands and that was enough to keep her pushing me away and keep her hands away from anything important.  The meds kicked in  and she was able to rest.  Once she woke up she was doing much better so they were able to cut the sedation amount in half and then not too long after they were able to turn it off all together.  She also finally got water which made her very happy.  We watched TV for a bit and then tried to sleep.  They had her neuro checks set for hourly, though, so we didn't get much sleep (especially me since they had to wake me up in between her hour checks to ask me questions).  Her nurse was really sweet though and tried to let her sleep as much as he could.  At 2 am she woke up really hungry and wanting gluten-free pizza.  That wasn't possible so her nurse offered to go down to the vending machine and get snacks for her.  We decided that if he sat with Madi I would head down since I knew what was ok for her to eat with her food allergies.  I found a ham sandwich and took off the bread and cheese and she happily ate the ham.  She also had a bite of granola bar as well and watched a little TV.  She slept on and off a little more after that in between her neuro checks but was up for good at 5:30.  We watched some movies and vegged and then at 7 am I was able to order her some gluten-free pasta and she was pretty darn happy about that.  My dad came and sat with her around 8:30 so I could grab coffee and oatmeal and I was pretty darn happy about that.  Next David and the kiddos came to visit and she was really happy to see them.  They had left after her surgery because she was so upset and it was upsetting Conner and Ramya.  We  had felt it was best for them to head home, but she sure missed them and told me many times!

 

 

 

We did another one bang MRI and it showed that her ventricles had indeed decreased so they said as long as I was comfortable with it, Madi could go home.  Her shunt site was sore, of course, but other than that she was doing great so we agreed to be discharged.  She has complained a few times about her shunt site hurting but other than that she really is doing wonderfully.  Her eye is still turned in and she is still seeing double but it's looking much better.  They are hopeful that it will correct itself, but if not, we will see a specialist about it.  Please join us in praying that it goes back to normal on it's on soon and that it doesn't cause any long-term issues.  Please also join us in praying that her shunt stays happy and infection free.  She got 3 IV dosages of antibiotics in the hospital so hopefully that will keep her from developing an infection.  Since her shunt was infected once as a baby though I always worry about it.  Please also be praying that she rests well tonight and can catch up on sleep. 

 

Thank you so much for praying for our sweet girl and for all of the calls and texts to check in on her.  We appreciate you!  I'm so thankful she only needed a partial revision and is already feeling better!  It's a miracle!

 

Oh, and a big "thank you" to our friend, Annette, who brought us a yummy dinner so we could relax tonight.  It was VERY much appreciated!