Posted in Noah Updates
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Jeff has Noah busy admiring the awesome aquarium they have here, so I am going to snatch a couple of minutes for an update. Noah had a long, hard night. It took 1 1/2 hours to get an IV line, and they blew 7 veins in the process. The vein that finally worked was so fragile that they couldn't use it to draw labs, so they let him go back to his room for a nap and a break before they had to start poking him again. 2 veins were blown drawing labs. This baby has huge bruises on both feet, both arms, both wrists, and both hands. Today we have seen or been scheduled to see every kind of "-ist" I can think of. Noah is under the care of a neurologist, nutritionist, GI doctor, pediatric surgeon, occupational therapist, physical therapist, nutritionist, geneticist, and a pediatrician. (I think I am remembering them all LOL) The current plans include an MRI of his brain, more labs, a temporary NG tube (for feeding through his nose) to be followed by surgery to insert a PEG tube for feeding into his tummy. The doctor who will put in the PEG tube is actually the one who invented it! He may have a muscle biopsy during the surgery. If so, they will send the frozen tissue to New York for analysis. It is possible that it will be preferable to have a fresh biopsy instead of a frozen one. If that is the case, he will have the muscle biopsy (done under general anesthesia) done in Atlanta, GA. Everyone he sees is a pediatric specialist in their field. They have each had a lot of insight into how Noah fits into their speciality, but no one can really give us any answers just yet. Each one that comes in seems to notice some subtle problems that we had never seen before. This is making for a hard day for me emotionally. There has literally been a line of people waiting to see him and each one points out little problems and issues. None of them are acting hopeful that this is a simple problem. We will definitely be here for several more days. Physically Noah is actually starving and there is the possibility that adding calories through either feeding tube will cause major problems for him as his body adjusts. Once tube feeding starts he will need very frequent blood draws for several days to closely monitor his electrolytes and other things. It may be next week before they even do the surgery. We need lots of prayer for all of the logistics at home. I have to be here and I am 1 1/2 hours from home. Jeff wants and needs to be here some of the time but can't be here all of the time. I think those are all of the main points that I can think of so far. I need to move on to my thankful list so I can keep my focus right. 1. Fish. Noah is having an exceptionally hard time, but there is a huge wall of aquarium that he enjoys looking at. Jeff and my mom have been able to take him to the wall so I can eat or so I could write this update. Other than that, he wants me holding him - which I don't mind doing at all, of course. 2. Starbucks. There is one downstairs and I can take Noah down with me to get coffee or a snack. It's a small luxury (paid for with hospital food vouchers) that added a bright spot to my morning. 3. Kind people. Everyone here has been incredibly kind to Noah and I, even in the smallest things. One nurse wandered all over the hospital last night very late to find a vending machine that had water bottles. I was so thirsty, the water was turned off temporarily, and all of the vending machines nearby only sold caffiene-laden sodas. 4. OK, right here on the spot I am going to have to thank God for a sense of humor. Honestly. The pediatric neurologist just came up to me and asked me to stand up. He started running his hands in the front of my hair and told me he just wanted to look at how much white hair I had in front. Now I just paid waaaaay too much money to have my white hair "blended in" and I should be insulted that he found it. Jeff was laughing (much too hard, I might add) and told him that he was a VERY brave man.  My life is feeling very surreal right now.5. The fact that we are in here. I wasn't too happy about this yesterday, but this is the best place for Noah right now. If we had to schedule appointments with all of the "-ist's" it would take months for them all to see Noah. Because he is an inpatient, they are falling over themselves to see him and things are moving quickly and more efficiently. I was praying the other day about how hard the waiting has been. God could have changed my heart, but He chose to change my circumstances. That, of course, humbled me and changed my heart. Isnt' that what they call a win-win situation?! Ultra Snuggly Super Kissable Boy's IV is beeping and Jeff is muttering things like, "If I can fix a computer, I can fix this thing." That is kinda scary, so I am going to go now. :-) Love, Kate and everyone |
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