Sunday, February 12, 2012

Decisions and Direction

A week ago my head was spinning with the number of decisions we needed to make for the babies. Now a week later, we have made most of our big decisions and we now have a plan and direction and I am very grateful for that. Admittedly my head still spins a bit because all of our decisions are just the start of the next big deal so we have lots on our plate! But we know we're headed and that helps me.

I'll try to balance giving enough detail for those who are interested with not boring you with excessive medical info! So first up, sweet Max. Following a very difficult meeting with his neurologist and nephrologist (brain dr and kidney dr), we decided we will be going forward with surgery to repair his hernia and perform a procedure to reduce his acid reflux. (for those interested, he will be getting a g tube and a fundoplication that should eliminate acid reflux and greatly reduce his vomiting). Although surgery is always risky itself, the bigger risk factor involved in this decision is the approximately 6 weeks of hemodialysis Max will require following the surgery. Addie has done really well on hemo which has helped us feel better about this. However, Max is 'neurologically compromised' which basically means that his brain just doesn't work quite like it should and we don't really understand exactly how it does work so it's a lot harder to predict how he will do on Hemo.

But this surgery will greatly improve Max's quality of life and therefore our decision was actually pretty easy. Max deserves to be as comfortable and happy as he can help him to be. So Max will be having surgery Monday February 20 at 8am and he will be in the PICU until his doctors feel comfortable sending him home to come back and forth for Hemo. We expect a 2-3 week hospital stay but know it could also be longer. We would love for everyone to surround Max in prayer starting next Monday and for the days that follow. If you could pray specifically for Max's breathing that he will not have one of his blue spells while on Hemo (this seems to the biggest fear his doctors have) and that he will not experience any seizures while on Hemo. Although we are nervous and aware of the risks, we have a peace that we are making the right decision and believe that Max will be fine on Hemo.

Meanwhile we have also had some great progress for Addie. Our insurance approved Addie's out of state transplant and suggested that if we go to Stanford they will pay for our airfare and contribute to accommodation as well (since it is in network for them). Seeing as Stanford was our surgeon and nephrologist number one choice and arguably the absolutely best place to transplant a baby, we decided that was an easy decision to make! I very nervously left this rambling message for the transplant coordinator. I spoke super fast and gave all these disjointed details and then gave her my phone number and then was like 'oh yeah, my name is Stephanie and I'm from Texas. Ok, bye." I was pretty sure she was going to think I was crazy and maybe never call me. So when she called the next morning and her first line was 'your message is now my favorite voicemail message of all time', I knew it was a match made in heaven! We still have some details to finalize but as of right now, Addie and I will be heading to San Fran at the end of April for an early May transplant. We are very excited that God has led us to this hospital and we are very excited for this big step for Addie. She will also be having a surgery in March in preparation for transplant to put in a g tube for administering meds and to remove her peritoneal dialysis catheter. We plan to keep her on Hemo until surgery.

I mentioned that we had a difficult meeting with Max's doctors to discuss his neurological problems. We still do not have a diagnosis as we are waiting from results from a genetics lab. Please join us in praying that we do get a diagnosis. It will really help us know what to expect for the future and help us better understand Max's current issues. The doctors have prepared us for some pretty troubling 'what ifs' but we are trying not to worry about possible diagnoses at this point as clearly we have enough things to worry about without dipping into the what if pool. We would ask you to please pray fervently that Max does not have a progressive condition. While initially we were told that is unlikely, it seems to now be something the doctors are considering. This has obviously been a very difficult month for us as we've been facing these concerns for Max and we would appreciate continued prayer for hope, peace and strength for Al and I, as well as our families, as we face this new set of medical issues.

Sweet Babies- you'll have to excuse Addie's annoyed face. It is how she generally feels about sharing any attention or spotlight with her brother! He meanwhile is smiling as he always does when he is near Addie!

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