Whew - what a roller coaster Friday and Saturday were!!!
Like I'd quickly posted before, Noah's central line sprang a leak on Friday. His line is kind of like a 3-pronged fork - it's one single line coming out of his chest then it branches into three lines (lumens) as it goes. Since the leak was at the end of one lumen instead of up at the top, we still had use of the other two lumens and we avoided any kind of medical emergency. If the leak had been higher, he'd have had to go by ambulance, get IV lines to keep meds and glucose running, etc. but this was a MUCH less intense issue.
Step 1 - Our first hope had been that we could get the line repaired locally. I was hoping for a simple repair of that one lumen rather than a bigger, more complicated repair of the entire line. Dr. B tried hard to get our local hospital to do this, but they didn't have the right kit for his line.
Step 2 - We decided to go to the ER in Columbia. We can't go to our regular children's hospital in Greenville since they only work on single lumen lines, so we have to travel considerably farther to a larger children's hospital in Columbia to get line work done. Dr. B suggested that I ask for an extra line repair kit to bring home in the hopes that in the future repairs could be done locally. I was concerned that the surgeon would refuse (they often aren't crazy about sending moms home with stuff like this) so I asked Dr. B to call ahead and let the surgeon know that I was authorized to request the kit on Dr. B's behalf.
Step 3 - Dr. B called back and said that the surgeon said that the line could NOT be repaired and would need to be surgically replaced. He started working on a direct admit while I got packed up and ready to go. We got a room number and headed to Columbia where I got Noah all set in his room. They'd initially talked about doing surgery right away but a little before 1 AM we got the all-clear to start giving meds and just get Noah to sleep for the night. Since the hospital was using my home meds and our home pumps during the night, there was little to no sleep for me as I kept needing to answer questions, help set things up, etc. (Not that this is a big deal - you don't go to a hospital for the great sleep LOL!)
Step 4 - Yesterday morning I signed consent for the surgery after the surgeon came in and looked at the line. It was almost time for Noah to go down when the nurse anesthetists came in to speak to me. I'd asked to speak to anesthesia before going down so that we could discuss the fact that I always go into the O.R. with Noah until he's asleep. Noah's regular surgeon always makes sure this is OK but we had a new surgeon we'd never met and I didn't want any last minute problems. Turns out that there were some concerns about doing the surgery on Saturday - first, there were concerns about the fact that there is less in-house staff on a weekend. This wasn't emergency surgery and there were questions about whether it would be prudent to do the surgery on the weekend when any potential emergency would be more difficult to handle. Second, because of having less staff, the anesthesiologist wouldn't let me go back with Noah. He was concerned I'd faint (!!!!) or panic or whatever and there wouldn't be extra staff to take care of me. Seriously. Finally, as I said this was a surgeon who'd never met Noah but if we waited until Monday we could have full staff, I could go back with him, and we'd have his regular surgeon.
Step 5 - I was asked to decide whether to do the surgery and just get home or hang out at the hospital until Monday morning and have it done then. For my sake, I wanted it to just get done so I could get home, but I knew Noah would just flip out if he had to go to the O.R. without me. Since we have to deal with surgery at least every 4 weeks, it's important for him to feel secure and not be traumatized unnecessarily. Jeff and I were both concerned that if I didn't go back this time, he'd panic next time he had to go back and would not be secure in his belief that I'd go with him in the future. He can't take any meds to calm him and really doesn't need any - he just needs to know that he can see his mommy while he's going to sleep. Jeff said the choice was mine since I was going to have to live with the consequences of a terrified Noah or a longer hospital stay. I prayed but just didn't have peace about doing the surgery under those circumstances so I reluctantly told the staff that we'd wait until Monday.
Step 6 - The surgeon came by to tell me that he completely supported my decision and that it was very important to avoid trauma for Noah. I asked him if he could explain WHY the line couldn't be repaired - that I believed him but needed to understand the "why" of the situation since I would MUCH rather have a repair than surgery that involves cutting into Noah's jugular! He thought about it for a minute then told me that yes, a repair would be MUCH safer and that since we were waiting for Monday, he'd try to order a repair kit so that a repair could be attempted before surgery Monday.
Step 7 - Our WONDERFUL nurse came in a few minutes later and told me that she'd gone and found a repair kit there in the hospital and the surgeon would be right there to attempt a repair of the one damaged lumen (what I'd wanted all along!). He did it right there in Noah's room, the new lumen worked perfectly, and he told me I could have a kit to take home. Best change of plans EVER, right?! The repair is NOT as secure/stable as a new line, but since the alternative is surgery, it's better to get a repair that *might* eventually break but that also might not!
Step 8 - I called Jeff to tell him to come get us. He drove right across the street to get gas and the bus died. Attempts to start it resulted in smoke pouring out of the engine. He called our amazing mechanic who met him at the gas station and tried all kinds of stuff, none of which worked. They ended up towing the bus and will be tearing down the engine tomorrow.
Step 9 - Our nurse (did I mention she is wonderful?) totally went to bat making calls and arranged for a medical transport van to come get us. Keep in mind that even ambulances won't take him unless there is a paramedic on board but she persuaded the ambulance company that I could take care of him if they'd just take him on a wheelchair van. We had to jump through 10,000 hoops - for example, his TPN orders had been canceled but at this point he didn't have enough TPN in the bag to get him home. It only takes a few minutes off TPN for his blood sugar to drop dangerously low and his electrolytes, esp. his potassium, to go bananas (like my pun?), so they put in orders for TPN to be fixed ASAP. Then we realized that their tubing wouldn't fit my pumps and since we wouldn't be on an ambulance, we wouldn't have access to hospital-style pumps. They called our AWESOME infusion pharmacy who sent someone into the office to grab tubing and bring it up to the hospital. This all took hours and the van driver kept threatening to leave, but we finally got him hooked up, out the door during a window of time when he wouldn't need more meds until we got home, and at last we arrived safe and sound right before 11 PM.
I'm pretty sure this takes the cake for "Most Complete Changes of Plan in 30 Hours," but the awesome thing is that not one bit of it took God for surprise. Noah was safe, he was spared a very painful surgery, we didn't have to run the risk of losing yet another central access spot as the result of the surgery, he only had to spend one night in the hospital, and it all ended well.
I headed straight to bed and since only 7 out of 10 Estes can g6 anywhere without the bus, Jeff took the older 6 children with him. I got to sleep in and just spent a lovely morning piled on Noah's bed with him and with Mary Faith building Legos and playing alien attack. :-) My sweet friend Lisa even stopped by with some doughnuts for the kiddos (even powdered sugar ones for Noah!), juice boxes for Noah, and some flowers for me.
Please continue to pray for the bus. It has just simply got to be replaced. Noah has a cardiology visit on Monday which he will now miss (if we'd stayed in Columbia over the weekend, they could have done the echo there and sent it to our doctor). Missing this important visit is bad enough, but what if the bus had died in Greenville with Noah and Hannah and I in it? When you have a child with an incredibly heavy power chair and multiple lines/pumps/drains, you can't just call a friend or family member to come get you if your car breaks down. We could get a medical transport yesterday BECAUSE he was inpatient, but they won't just come get him if our car breaks down somewhere. Please pray that the needed funds will be raised ASAP.
We'd seen the perfect (for us) bus on eBay weeks ago and even spoken to the seller, but when the listing ended we'd assumed it had sold locally or something. Friday I saw it listed again and the price had even dropped a little. I know that the Lord knows which bus is really perfect for us, but this one certainly meets or exceeds every important feature on our list and would be a very safe, reliable vehicle for Noah and the rest of us. A friend is doing an online Tupperware fundraiser here with 40% of every purchase going to the bus fund. Orders have to be placed by September 19th. There is also a widget in the sidebar for our YouCaring fundraiser. We haven't heard from Ride to Give yet regarding which week Noah will be Cause of the Week and are praying it will be sooner rather than later. In the meantime, the Lord just keeps reminding us that security is ONLY found in Him - that He's in control and that He, not a more reliable vehicle, is the only source of safety and security we've got.
Thank you to all of you who prayed for us through the ups and downs Friday and Saturday. We love you all and appreciate you all more than we can say.
Blessings,
Kate
