4-16-14 Ally’s spine surgery postponed till ???

Just wanted to do a quick update to let everyone know that Ally’s surgery was postponed.  I shared a couple of posts on facebook with family and friends, but here are a couple of updates if you are not “friends” with me on facebook.

** Most current information is posted 1st **

Wednesday 1pm — Surgery officially postponed till ??? — Thank you everyone for your thoughts and prayers. We are home and semi-unpacking. I understand the doctor wanting to be extra cautious, but just wish there had been better communication as I am beyond mentally drained. We definitely prefer a doctor to be cautious, prepared, confident….and we are happy with the surgeon and hospital we chose. But, I wish we would have known sooner that there was any chance of postponing or that it was overall cancelled last night, and not gone to the hospital today with ALL of Ally’s and my stuff. Everything DOES happen for a reason and in time it will happen. I should be talking to the surgeon later today with more answers and maybe get a timeframe of when and if it will all happen. Then I will begin to prepare again. For now, I might need to find a Groupon massage, watch some trash tv, pray, sleep… since I don’t really drink.

Further details added later to clarify… 

• Almost two weeks ago, the surgeon became concerned when I asked for Ally to be admitted the day before to begin TPN (special IV nutrition) since SMA kids should not go more than 4 hours without their regular feeds or TPN due to an overall fatty acid metabolism issue. I explained that Ally has not officially been diagnosed with this, but it is a pro-active precaution taken by SMA treating hospitals (that do SMA spine surgeries often – specifically Madison and Cincinnati and others). Since he was out of the country, I gathered some information on this, and then our pediatrician followed through with talking with Dr. Schroth and Madison’s pharmacy, and then she helped relay this information to our PICU director and anethesia. Everything seemed ALL set and they were going to follow using TPN before, during and after surgery. I got 3 calls to admit her directly to the PICU at 8 am today (day before surgery since TPN has to be ordered by noon). The PICU team felt comfortable with this universal precaution, but the surgeon needs more time to research it and discuss it with the team since he is worried if the “fatty acid metabolism issue” could cause any complications. The surgeon and his nurse planned to call me and postpone surgery this morning, but they didn’t know we were already in the admitting office. I hope it will all still come together for the near future and I’m staying hopeful, but it is an extra stress. I DO want the surgeon to feel safe and confident though. I don’t think there are any other concerns, but just that he wanted more information himself and needed to sit down as a team with the PICU team to discuss all this. It didn’t happen yet since he returned from a mission to Bulgaria on Sunday, but I was given no warning of possible cancellation until we arrived. In fact, I was given every sign that the TPN/Nutrtion was all worked out. The surgeon is the one who has to feel safe and is liable, so I understand overall and will wait to hear from him.  Sorry for my ramble, but it will maybe help make sense of this complication.

Wednesday around 9am — Arrived at the hospital at 8:15, but as of now we are told surgery is canceled/postponed due to sorting through more nutrition stuff that I was told was settled/planned with our pediatrician/consultation with Madison/SMA experts and the picu team, but Dr. Mardjetko wants to do more research and sounds like he is now not available for surgery tomorrow although we were called by 3 people to come this morning and planned the next two weeks+ around this. Waiting at hospital to talk to some of the PICU team in person to understand the problem more.

Tuesday around midnight — Packing for Ally’s (and my) BIG stay at Lutheran General Hospital for her spine surgery (on Thursday) and then recovery. She will be admitted TOMORROW morning at 8am so that they can re-do a few labs and order TPN (which is a special IV nutrition that will begin 6 hours before surgery, during and for awhile after). SMA kiddos should never go more than 4 hours without food or TPN. Praying for a smooth morning as it will not be easy getting there at 8am (but I will have help from one of our home nurses, Anna). Also praying for great teamwork and smooth transition as the hospital team gets to know Ally better and we get to know them. She spent 5 days at LGH in February but it is still new to us. I’m getting more and more nervous about Ally’s spine surgery, but know it is absolutely needed to keep her as healthy, happy, pain-free, and active as possible. It is a positive thing, but still very risky and scary. Recovery will be about 2 weeks in the hospital and around 6 weeks before school again.

 

I will update when I know more, but have come to terms that it is best to be 100% prepared and that surgery will happen when it is right and under the best conditions.

Tina