Posted in Noah Updates
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We have kind of a long update tonight, and Jeff and I (Kate) kind of worked together to write it. First the Noah news: Noah’s Broviac is working its way out, but is still functioning. The plan is for Noah to have surgery on Monday and get a new Broviac unless this one starts looking worse – in which case the surgery would be done sooner. Please pray for this new (3rd) Broviac to stay in properly. These are usually very stable lines and we aren’t sure why he is having a hard time keeping them. While Noah is in surgery his part of his gj-tube that he still has will be removed and he will get a button-style g-tube like he had before. He was taking 10 mls/hr of Neocate through his g-tube before he got the gj-tube, so that is our current feeding goal. He should be going home taking that 10 mls/hr through his g-tube and receiving the rest of his nutrition from TPN via his new Broviac. We will try to increase the g-tube feedings very, very slowly – maybe 1 ml per week – to see how much higher he can go. At his current size he would need to get 45 mls/hr through his g-tube to get sufficient nutrition, and that amount would increase as he grows. An infusion company will supply the TPN, lipids (liquid fats), and all of the tubing, syringes, flushes, pumps, etc. by the week to our home. They will also supply a small refrigerator dedicated to the bags of TPN, lipids, and his mvi (vitamins that we will add to each bag of TPN before hanging it.) He will have three pumps in all – one for his g-tube feedings, one for the TPN, and one for the lipids. They will all be portable pumps so he can go to church, the park, etc. while hooked up. It will be challenging, but God allowed us to get used to *one* pump first, so I am not so intimidated by the pumps. If I could just grow a couple of extra arms for the picking up Noah and all three pumps I would be all set . . . . A home nurse will probably come out daily for a while to make sure that we are comfortable with all of the TPN procedures, then she will cut back to coming and drawing labs once a week or so and changing his Broviac dressing twice a week. Some parents take over the dressing changes themselves, and I feel like I could do this, but I think I will wait until after Baby Abigail comes. It is a fairly complicated procedure and since someone else will need to care for Noah while I am in the hospital, it will probably be easiest to allow the home nurse to do it until we get settled in with the new baby. I didn’t get to do much blogging while Noah was in CHOP, and I have had a CHOP-related thankful list I have been wanting to share. First Jeff and I need to clarify a very unfortunate misunderstanding that occurred. I want to be crystal-clear in saying that the care Noah received at CHOP was truly superb, and that I would NEVER hesitate to recommend that hospital or return to it if needed. We had one single encounter with one single doctor who did not display the level of professionalism that we had come to expect from CHOP. She was not part of Noah’s regular team – not a GI doctor, metabolism doctor, neurologist, or geneticist. They were incredible, caring, unbelievably skilled professionals and we were blessed beyond measure that Noah was under their care. (JEFF WRITING) Kate called me after the encounter we had with the other doctor, and as Noah’s dad, I was at least as frustrated as she was. I wanted to ask for prayer that the issues with this doctor could be worked out since she had plainly told Kate that she wasn’t interested in working with Noah’s other doctors to provide the care he needed. In my frustration I overstated the situation and gave the impression that there were *multiple* doctors causing problems. I was upset, tired, and frustrated by a lack of percieved progress and wanted to be there to protect my son, but in retrospect I regret the way I worded things. My post inspired a well-meaning blog reader to contact CHOP on our behalf (unasked by us) and sort of register a complaint on our behalf. Because of the way I worded my blog post, this reader’s complaint (and my post) found its way to some of the WONDERFUL doctors who were caring for Noah and made them think that we were angry and dissatisfied with their care. (They probably thought Kate had lost her mind completely – smiling and thanking them by day, but inspiring her husband to write upset blog posts by night.) This entire mess absolutely broke our hearts when I learned about it today. These people went out their way to provide Noah with amazing care, but were left thinking that we were saying cruel and untrue things about them. I want to apologize for that post (which I have deleted) and for any confusion it caused. (KATE WRITTING) Now on to Kate’s CHOP thankful list. I’m thankful for: 1. The attending physicians and fellows who went the extra mile for Noah. There was a doctor whose usual waiting time is until February, which would have been impossible with Baby Abigail coming in January. There was a doctor who carried Tootsie Roll pops in his lab coat pocket – even though Noah didn’t know they were candy, he was fascinated and distracted enough to be examined with no tears. There was a doctor who came in while Noah was still sleeping and who sat on the edge of the bed and just rubbed Noah’s back to wake him up gently – another tear-free exam! 2. The residents who shared so much obvious care and affection for Noah along with top-notch medical care. We got some of them out of bed at night waaaay more than any of us wanted, but they were unfailingly kind and professional – and always had time to have a bit of fun and a smile with Noah no matter how tired they must have been. 3. The nurses and nurses aids who made life easier in so many little ways – Noah was warned by the nurses at home not to make any new “girlfriends” while he was gone, but he couldn’t help falling in love with his great nurses. 4. The air ambulance crews. These folks are incredible and did so much to keep Noah safe and as calm as possible on our trips to and from CHOP. 5. The FOOD. Nope, that wasn’t a typo. I could order from an extensive room service menu and get an entire meal of healthy, freshly made food for just $5 per meal, or go downstairs and eat in the cafeteria. The food was restaurant quality and such a treat. Outside the hospital there were all sorts of food vendors including fruit carts where you could buy a foil pie pan full of the most delicious fresh fruit salad for just $3.50. I have thought about that fruit every day since we have left!! 6. The sheer level of knowledge and technical skill displayed by everyone at CHOP. Some of the tests Noah had done sound more like science fiction than medicine, and I was constantly amazed at the things they were able to do. 7. The PT, OT, and Speech Therapists (more of Noah’s girlfriends 8. All of the people at our home hospital who worked VERY hard to make this trip happen – from dealing with insurance, to arranging for Noah to see the appropriate doctors while we were there, to setting up things with the air ambulance company and transport teams. There is no way we could have put this trip together on our own. The nurses, doctors, and support staff here are extraordinary and it is a huge blessing to know that we have world-class doctors so close to home! 9. My sweet husband who just kept on keeping on while I was gone. I know this trip was hard on me, but it must have been so much harder on him – however, he did a great job with the children and never complained. 10. The odd peace that comes from knowing that we have done everything we can for Noah at this point. I can’t tell you how much I had hoped that we would go to CHOP and learn how to make Noah “better” or how to feed him safely. Even though I am disappointed that this was not to be, I am glad that we don’t have to wonder “what if” we had taken him somewhere else or gotten another opinion. Noah has a rough road ahead of him, but we know that medically speaking we have decisively concluded that we aren’t missing anything. It will probably be a couple of months before we get any more test results back, but at least the tests are behind us now! 11. Red Sox won the AL East division for the first time in 12 years. Now... On to the World Series!!! Thanks for your continued prayers and support, Jeff and Kate |
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