*I forgot to mention that I would like to thank Kerry and Marg for bringing over some delicious soups yesterday. Thanks for coming by, sharing laughs and girly chats with me!
Day 36 - Hospital Stay
Day 31 - Intubated
Came in just in time to do rounds. The nurses and the student nurse were trying to change Logan's ng tube. Of course he didn't like it. Who likes to have a tube through one of your nostrils and then down into the stomach. I hated doing that for him when he was first discharged from the NICU at 1 month. It's not as difficult as it seems, but still sucks doing that for your baby.
Rounds:
Logan lost a little weight, weighing 7.1 kg as he hasn't had any feeds since yesterday. His sodium level is at 132, still not quite back to the 135 range. His level wasn't really slowly building up; it went up a little, and down a little, and settled at 132 at his last blood drawn. In order to make sure he is having his nutrition, they are starting his feeds again at a rate of 30 ml/hour, down from 50. A consult will be made to Nutrition to decide if we should continue with this rate, or to give him a more concentrated formula. His sodium and glucose level will be checked every 6 hours (poke one less time than yesterday). Poor thing, his heels are scarred again. This is the time when I wish he has his central line, so that they can draw blood without poking him with needles. In addition, he had 7 stools yesterday! That's a lot of poopy for a little guy with nothing to eat. The resident doctor was not sure of the consistency. But I bet this is due to his antibiotics (day 5 of 7). Logan also had a low-grade temperature of 100.1 last night, but after removing some of his blankets, his temperature was back to normal. Phew! The ventilator rate is further decreased to 10 breaths/min, and the volume of the breath is decreased to 13ml instead of 15. Oxygen concentration is also down to 30% instead of 40%. The blood gas showed he was hyperventilating a little and the volume of his breaths was a little high, at the 70s instead of between 35-50ml. Let's see how he does with the new setting. These changes are all good news. Logan is showing us that he's fighting and has not given up yet! Director said he will talk to Neurologist today about the MRI. If he's getting it, it might be towards the end of the week.
I've noticed that they have taken his Hugs tag off. The Hugs tag is usually attached to all kids, I think under the age of 12, so that they can't run off, or no one could steal any babies. If the tag is being tampered with, or not taken off while leaving the PICU, the alarm will sound off . I guess they figured he's on the ventilator, no one can really sneak him out. It's more comfy with one less tag attached to him.
I've also noticed they attached a tag to his bed with a medication name. For some reason, I keep on forgetting to ask what that is until today. They tried to give him Theophylline before to open up this bronchial tubes to help with breathing. Apparently, he's allergic to it. His heart rate went up to 200, and he had rashes all over his body. After they stopped it, he's back to normal. I wonder why they didn't tell me that. It's pretty important to know that he's allergic to a medication, even though it's not something that's common, but still. They must have given that to him the days Aidan or I was sick and I was unable to come. Now whenever someone asks if he's allergic to any medication, I will have to say yes.
Logan is a lot more awake today. He's like when he was 3-5 days ago. I didn't know excess water retention can make him sleepy (thanks cousin Peggy). I guess it's showing that he is losing that excess water. Yay!
11:20 p.m. - Neurologist just came in. I gave him a brief update on how Logan is doing. He agreed that it might be a good idea to do another MRI. I also asked him to explain to me a little more about Logan's infarct. He drew on the white board and explained it to me. The black parts on both sides of the brain are where the stroke is. I didn't know it was on both sides and more than one part. They are located in the Midbrain. When he first met Logan, he has asked me about the movement of his arms. At first, he questioned if it's the side effect of Reglan. Now we know it's because of the stroke. He said because of the location, they aren't really close to the 3 big blood vessels, but off to the side where the small blood vessels are. That's why they suspected it's Mitochondrial disease, esp. when it happened on both sides of the brain. He said the gray matter along the side of the brain looks fine, and the little of the brain stem that they can see. I asked if we can do an MRI to see the brain stem. He said it's difficult because of it's location and the size. I also asked about the hearing test/loss. I showed him the hearing test result that I received from the Audiologist. He showed me the nerve in the brain stem. He said it might be possible to surgically do something about it, but the nerve is so small and it's so close to other nerves that control the face. The benefit of doing something might not be worth it. I told him I think Logan could hear some noise, but probably not enough. I then asked about his eye sight. I was told he reacted to light but not sure if he can actually see. He said there's the actual seeing of something, and the interpretation of what you see. He has seen Logan before he was sedated. He said it's hard to say because Logan has been sick and in the hospital for so long. He might not have the chance to develop normally.
12:50 p.m. - Finally got the name of the enzyme that showed low-normal in Logan's bloodwork last time. It's Carnitine. He's getting supplement for that, on top of his antibiotics, co-enzyme q10 and Ativan.
2:25 p.m. -Director just came in and told me we might have some results back from the lab. He's trying to get more information and to set-up a meeting with the neurologist and geneticist for today. It seems like there is an abnomality in the mitochondria and the lab recommends some more tests to get a definitive result. Director wants to consult with neurologist and geneticist about this. If possible, we might have a meeting to talk about it later today. I am not sure how I feel about this. Bad thing, it is the deadly Mitochondrial disease. Good thing, we might have a diagnosis. Depending on the conversation and how I feel, I will blog about it tomorrow.
1 comment:
Virginia, I agreed with the neurologist, thre are so much going on at the hospital that is difficult to access the audio and visual development. The sound of the instruments are loud and Logan may tune it out automatically having to listen to it all the time. He may not be developing the way it should be due to the unique environment he is in at this time. A true accessment could be done when he is a little older. There is a medical specialty called Neurodevelopment and the Neurodevelopmental doctors can do this complete accessment when Logan is older. It's a very special medical field. It's especially important when he is home, stable and reach school age. so you may keep this in mind.
You can also access the water retention by weighing his wet diapers. Make a note of the total fluid (including IV if there is one) intake (in cc. or ml) per day, also notice the weight of each wet diapers, add that up to obtain the total weight, do this on a good day/normal day (over 24 hours); it will give you a rough idea of how much water he is getting rid of. If he suddenly has less wet diapers, you know he may be retaining water and vice versa.
Unless he is sweating profusely or had vomited. He should wet about the same number of diapers (and the total weight)per day. For a little boy like Logan, he pretty much only has one way to get rid of the water, by urination or having watery diarrhea.
With 7 stool, his little butt must be sore. Poor thing, he needs some Desitin to sooth that red butt.
We will pray for a good result showing on the next MRI. Love, cousin Peggy
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