Balancing Sodium

Day 39 - Hospital Stay
Day 34 - Intubated

Logan was baptized yesterday. Unfortunately, Hank got held up at work and by the time he arrived, he missed it by a few minutes. So, it was just me and the priest. I am hoping a miracle will come, or God will give me a sign and tell me what's best for my baby.

Logan's face looked a little more swollen today than yesterday. I immediately asked the nurse what his sodium level is, and it was down a little to 131. His vitals are stable, and his oxygen level remains at 100%, unless he coughs or gets upset. He only had 3 stools yesterday, probably because he's not on antibiotics anymore. Intensivist decided to supplement him with sodium, give him some diuretics and watch his urine output. She wants to make sure the sodium level doesn't go too low because it will cause swelling in the brain. We definitely do not want his brain to go any worse than it is. We also talked about his Ativan level. It's been decreased to 0.2ml. Logan looks too comfortable even with such a low dosage. I don't think the tube bothers him much anymore, or he's not feeling it at all. He probably doesn't need the sedation medication. However, the neurologist commented that the Ativan also keeps the seizure at bay. With the results of the EEG and the MRI, he's concerned that if we don't give him or further decrease his amount, he might seize. Even though he doesn't need the sedation medicine to sedate him, I told them to keep it, just in case he seizes. We don't want any seizures. We should at least keep it until our big family meeting this afternoon. I also asked how we can tell if the vitamins that he's getting are doing their job. Neurologist said it's hard to say. We can't tell if the vitamins are slowing the deteriorating or not, and we can't tell if his cells are actually absorbing the vitamins. They will just continue to give him the recommended dose.

I probably won't blog much for the rest of the day. Logan will probably be stable for a while. I might blog about the results of the family meeting tomorrow.

He opened his eyes today again!

*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.

Mother's Instincts - puffiness and transfer

Day 35 - Hospital Stay
Day 30 - Intubated

It just proves that mommy's instincts can sometimes tell us more than what doctors or lab tests can. Remember I've been saying Logan's cheeks look chubbier to me everyday? Now we know the answer. This is what happens during rounds.

Logan weighs 7.2kg today. He had 5 stools yesterday! His sodium level is low, at 128 (I think normal is 135). It either means he doesn't have enough sodium and needs supplements, or he has too much water in his system. It appears his body is holding onto water too much, because he's on the ventilator and can't get rid of excess water by breathing out. Water retention also happens if the patient has active neurological or pulmonary disease, which Logan has both. He has a neurological disorder, and he has pneumonia. The plan is to let his body get rid of the water by holding his feeds for a while. Every 4 hours, the nurse will check his sodium and sugar level. Once the sodium level gets back normal, then they will start feeds again at a slower rate (20ml/hr instead of 50 previously). They might also make his formula more concentrated, thus giving him enough calories but less water intake. Hopefully, by tomorrow his sodium level goes back up without compromising his sugar level. Last time when he got puffy, they turn down his IV, but since he has no extra IV fluid at the moment, the feeds is where they have to change. Aside from that, he's been doing fine. His blood gas shows normal range, and the Director agrees with me that his breathing pattern seems to be more stable. Thus, they will turn down his ventilator rate to 12 instead of 14 from yesterday (down from 16 a few days ago). Director will also talk to neurologist tomorrow regarding another MRI. It's been almost a month since his last MRI on 3/9/09. He is also at Day 4 of his antibiotics for pneumonia.

Logan is still very sleepy today. He opened his eyes earlier when I was giving him a massage and exercising his arms and legs. Now he's going back to sleep. Since his sedation medication hasn't changed, I wonder why he's still always sleeping. Maybe his body is recovering from the fever and pneumonia?

Remember I said before I considered getting Logan transferred to Lucile Packard when I found out about the stroke? After that, I put some more thoughts into the transfer. At this moment, I think we will keep him at Kaiser. Yes, Lucile Packard is a more reputable hospital than Kaiser. However, there are just other factors that I think are important. Logan has been in the care of Kaiser since birth. Kaiser knows him. The doctors and nurses at PICU in Santa Clara know him very well and know how he was, and how he is. If we transfer him to another hospital, new doctors and nurses will have to start to get to know him, and read up on his super long medical history. I think continuing care with the same people will bring stability to him. I know Kaiser doesn't get the greatest reputation sometimes, but I have been fortunate that both the Kaiser NICU in SF and PICU in Santa Clara have been great to us. All the doctors and nurses are fantastic. We have already built a relationship with these people. And if Logan gets admitted again in the future for whatever reason, they will immediately know what's going on with him. Besides, we will be moving down to Sunnyvale at the end of the year (cross our fingers), just 10 minutes away from the hospital. Transferring Logan to another hospital will make things more complicated for the future as well. Well, also our insurance can't be changed until next year. I believe the doctors have tried and done everything they can to make a diagnosis and to provide the best care. Mother's instinct told me, staying with Kaiser is what's best for him. A team of specialists and nurses who already know him, is more important than transferring him to another reputable hospital where no one knows him there. I hope I am right on this.