Posted in Noah Updates
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Unfortunately Noah had a terrific day today. I know that is an odd thing for a loving mommy to say, but the only reason he had a good day is that the doctors gave him a 24 hour break from his feeding pump. He was so sick all last night and early this morning that they decided just to give the little critter a break. Since he didn't have any food except when he wanted to nurse, he felt fantastic. While it was tons of fun to have my happy baby back, it was really sad to see that the only reason he felt good is that he wasn't being fed much. Noah saw quite a few doctors today and late this afternoon some of them came in together to talk about a plan for Noah. We had good news, bad news, and rotten news. First the good news - Noah gets to go home tomorrow!! I am so excited. (By the way, this means that if you were thinking of sending him an ecard and didn't do so, then please don't do so since he won't get it unless it was sent today.) He is going to continue to have discomfort and nausea and vomitting and will still need daily weight checks, but he can throw up at home as easily as he can throw up here. The bad news is, first of all, the fact that the feeding issues aren't going to be resolved at this point. Because Noah's weight gain has been so incredible (2.5 + pounds in 2 weeks!!) the doctors are reducing his caloric intake and therefore his feeding volume. It may help some but he will probably still struggle. He still needs daily weight checks but we can do that at our doctor's office each day. We will watch his weight gain and continue to tweak his calories and volume until we find the least number of calories that he can take while still gaining acceptable weight, albeit more slowly than he has for the last couple of weeks. We aren't too happy that Noah is going home on continuous feeding. He will be hooked up to a feeding pump 24/7 and that will obviously take some getting used to. The pump is portable but it will be tricky to juggle a baby and a case that are attached to each other. I am confident that we will get it all figured out eventually, but it may take a while. Also, Noah has to come back next week for more surgery. He needs to have an endoscopy and stomach biopsy to see if we can glean more information as to why he isn't tolerating his feedings. He will be under general anesthesia, but they can do the surgery on an outpatient basis so we will only be here one day. It looks like he'll have the surgery next Thursday. It is possible that their findings would result in the need for corrective surgery. The ugly news is that some of Noah's labs have come back with abnormal results that would really seem to indicate mitochondrial disease. Our original plan had been to have Noah closely monitored through the Greenwood Genetic Center and revisit the idea of a muscle biopsy in a couple of months. Because of these labs, the hospital is going right ahead and scheduling him for the biopsy. We should have a date tomorrow. This will need to be done at Emory in Atlanta, and is another surgery under general anesthesia. We don't know how long we will be there. Specific prayer requests at this time: -- continued wisdom for the doctors -- healing for Noah's g-tube site. His stomach contents are leaking out around the tube because his stomach isn't emptying properly. When he gets overfull and starts to throw up, the same pressure that makes him sick also forces stuff out around his incision. Surgery is working on some options and we hope to have him more comfortable in that regard before we leave tomorrow. It is yucky and requires a lot of work to keep his skin clean and dry. If we don't get a handle on this, his skin will just break down and there could be more serious problems. -- comfort for Noah once he starts his feeds up again. He is so incredibly miserable when he gets fed and he whimpers and holds his breath and vomits. It is very hard to watch. -- wisdom and bright ideas for us as we adjust to his pump at home along with daily doctor visits and outpatient occupational therapy and physical therapy. -- wisdom for finances. Noah needs to go home on a custom mixed formula that will cost close to $100 a week. The discharge planner is working with us to look for some avenues to obtain funding to help, but we will probably be on our own with this cost for a while. We honestly don't have that kind of extra money,but are watching in faith to see how God will provide. -- some special peace for me. This might sound odd, but I haven't really thought of Noah as really sick until now. I think of him as my sweet, happy snugglebug, and I was a little overwhelmed today to realise how different our lives are going to be when we get home. Even after a day like today, I am thankful to "count it all joy." Things that made me smile today include: 1. Starbucks. I've said it before and I'll say it again - coffee and chocolate help LOL - and Starbuck's has both. I "discovered" their iced Orange Mocha's yesterday, and that is very possible the reason that God is sending us home tomorrow. It would be waaay to easy to overdo on those! On the other hand, Orange Mocha's may be Nature's Ideal Food. Coffee is a bean, right - so we have the vegetable group covered. Oranges are fruit. Whipped cream is dairy. Chocolate is high in anti-oxidents, so it is kind like a vitamin. Hmmm . . . . maybe I have time for just one more before bed . . . . (Notice that I, unlike some other blog poster who shall remain anonymous, seek to cover many food groups in my prefered treat. C'mon - what good is a Snickers bar??!!) 2. The Little Blue Bench of Happiness. Noah is a smart little guy, but his physical limitations make it hard for him to play with "big boy" toys. He can't handle much more than a rattle-type infant toy because he is either lying down and can't manage challenging toys or he is sitting in his Bumbo seat and can't reach toys. Yesterday the O.T. brought him a little blue padded bench that adjusted to the perfect height to function as a table for his Bumbo. Today he got to play with stacking rings and music toys and other great baby toys that he couldn't enjoy before. It was a whole new world for him and he had so much fun! Jeff is going to try to build him a similar little table at home. 3. Great visits today with my father-in-law, Jeff, and our great pastor. I had lots of company just when I needed it most. It was great to have Jeff almost all to myself for a little while! He is my best friend in the whole world (even if he would rather have a Snickers bar than coffee) and nothing is ever quite right when he isn't around. 4. Thinking about Jane Austen. Hannah, my 13.5 yo dd and I have seen the new Pride and Prejudice a couple of times and had started watching the old five hour version before Noah was admitted. Maybe this weeked the two of us can finish it. Really, you can't get too much Mr. Darcy, can you? I hope that new movie about Jane Austen will be as good as it looks. It sounds like the perfect girl's night out. 5. Lavender. I am just the biggest fan ever of lavender anything, and various sweet friends and my mom (also a sweet friend) have kept me supplied with everything from lavender lotion to all-natural lavender dryer sheets (Method brand, get 'em at Target), to a handmade lavender sachet to tuck in my closet here. Mmmmmm . . . . 6. One more bonus blessing - my friend De'Etta who often leaves comments here. She generally signs her emails with the phrase "choosing joy." She probably doesn't know this (but I hope she's reading!), but her encouragement is one of the reasons why I stop and choose joy each day. Love, Kate . . . who will get to update from HOME tomorrow!! |
Since they can't fix that issue right now, it isn't a good enough reason to keep him here and run the risk that he could catch something from being in the hospital.
Thank you, my friend.Comments
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Posted by Anonymous
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