Day 31 - Hospital StayDay 26 - Intubated
9:40 a.m. - Came in and they were ready to do his routine Chest X-ray. Logan opened his eyes a little and I was able to touch and talk to him again. I am not sure if he can hear me or see me, but I am sure he can feel my touch. He looks comfortable. I didn't see any IV or central line on him. The nurse said they tried for a long time yesterday, but couldn't find the right spot for it.
10:00 a.m. - Child Life Specialist came in to show me the foot prints that we did for Logan on the 30th. They were so cute! It's a white, ceramic-like plaque. We did that on Monday by placing his feet in some kind of mixture, then waited till it solidified a little to get the shape of his feet. Of course, he was struggling a little when we did it. We couldn't get all the tiny details of his toes and lines, but I am pleased with the result.
10:20 a.m. - Doctors came in to do rounds. Logan weighs 7kg. He is on a small dose of Ativan (sedation medication) every 8 hours. Now they have decided to just give it to him as needed, as he seems comfortable enough. They have discontinued the central line, as mentioned earlier. He is taking injection antibiotics for his pneumonia. The doctor will double-check to see if he can get it through his ng tube or orally. They are putting a hold on giving him a central line at the moment. Because his blood culture showed a delayed growth (came after 3 days) instead of 48 hours, they are re-doing the blood culture to make sure he really has a bacterial infection, instead of a contamination of the culture. If he doesn't have a bacterial infection, then they don't want to risk giving him a central line, which is more prone to other infection. Unfortunately, if he does have the bacterial infection, the antibiotics has to be given through the IV or central line, so they will have to poke him again. The nurses also reported during suction, he had some thick white secretions. However, his lungs sound clearer today and he looks comfortable. I've previously spoken to this doctor on Monday regarding treatment for Mitochondrial disease and Edison Pharmaceutical (thanks to my cousin Peggy for giving me that info). She has spoken with the Geneticist regarding giving Logan co-enzyme q10 for treating Mitochondrial disease. Geneticist said it works for some adults, but doesn't work for others. But because it's just over-the-counter type supplement, it doesn't hurt giving it to Logan. Geneticist thinks it won't help, but why not try it when it doesn't hurt. I'm glad this doctor has listened and thought of what we talked about on Monday, and consulted with the Geneticist about it. Geneticist also thinks his low-normal enzyme result it's not a big concern. He didn't think that was the cause of what's going on, but would like to have the test repeated in 4 weeks.
10:30 a.m. - Doctor stayed for a little while to see if I have any other questions. I told her I am not sure if we should give Logan the trach right now, so that he could be more comfortable, and to decrease the risk of other infection, as my cousin Peggy mentioned. Doctor said because Logan has a suspected bacterial infection and a small case of pneumonia, they would not perform surgery on him at the moment. This give us a few more days to think about what we really want to do. I told her, as long as Logan is comfortable, I am not in a hurry to make any decision.
12:00 p.m. - I've been standing next to Logan, so that when he opens his eyes, he knows that mommy is right there. He's been more awake but that also means he moves a little and gags a little. He just let out a yawn, so cute. I tried to talk to him and make him see me, but I don't think he can really see. He doesn't follow my finger at all. He might hear some noise, but probably not enough to learn speech in the future. I am heading out to lunch, and will drive over to Parents Helping Parents in San Jose to take a look.
2:30 p.m. - Nurses are all over him to try to get an IV on his left arm. Ouchie again. He hasn't had any Ativan in a while, too. I hope they are successful. Trying not to stand by the bedside so that the nurses won't feel pressured. I came back and thought Logan's face was a little puffier than 2 hours ago. But maybe it's me imagining things. The nurse didn't seem to see the difference. Well, I had a very nice lunch and went over to Parents Helping Parents. Met with a Family Resource Counselor, told her Logan's story. She will try to research to see if she can find any parents that have gone through similar circumstances, and then she'll give me a call. She'll also share the info with the other Early Intervention Counselor.
3:00 p.m. - Couldn't put the IV in. The next shift nurses will have to try again. It's probably because he's a little dehydrated, since his feeds didn't start till 12 p.m. and he has nothing to eat from 6 a.m. - 12 p.m. He had a little dose of Ativan earlier, but I think the sedation has already worn off. He opened his eyes just now and was moving around.
I was looking at his ventilator monitor earlier before lunch. Now that he's not too sedated, his breathing pattern looked better, at least to me. He is taking in more breaths on his own and they are pretty good-sized ones as well. This gives me hope. I am hopeful that if he is trached, not sedated, he can breathe much better. I hope I a right.
4:30 p.m. - RT is here to give him his breathing treatment. He had that last time when he was hospitalized due to a cold. They have him inhale vapor saline solution to loosen up the mucous, punch (massage) him with a rubber thing on the chest, and then do a deep suction. I hope he's feeling fine since he has a tube in him this time around. Almost time for me to pack up and go. Today is a good day. The only concerning detail I noticed is Logan's minor jerky movements of his arms and legs. Not sure what that means, or maybe I am just over-analyzing everything.
3 comments:
Hi Virginia, to be honest with you, I don't remember if Jonas follows my finger either. There are so much going on when they're in the hospital. Every body parts will be rechecked over and over and over again as they grow. So don't assume Logan is going to end up with all these impairment but do prepare for it just in case. Logan's foot prints are so cute, glad to see he is comfy and open his eyes. I'm also glad that you're recovering from your cold. Take care of yourself while you're doing the running around. You're a Great mom, we're all very proud of you and will continue to pray for Logan. Love, Cousin Peggy
When I was working with Cochlear in Sydney, I saw many children who are profoundly deaf. They had been implanted with a bionic ear implant since babies, and as teenagers now, they could sing, talk and even speak with a local accent. I can't even tell that they were born deaf! Perhaps you could chat to your doctor to see if this is an option for Logan. There are 2 manufacturers for bionic implants: Cochlear (Australia based & inventor of the technology) and Advanced Bionics (USA based).
I'm sorry if my suggestion seemed unsolicited.
Please take care of yourself too.
Cheers, Evelyn
It may sound like I'm promoting the trach on Logan. But in my experience, with the trach, the child can be positioned upright, not bed resting all the time, the trach tube stays in place, the positioning is more stable then the kind goes into the oral cavity. It doesn't mean that Logan won't need mild sedation and close monitoring because he will still pull it out. You just learn to pop it back in and that's part of the training for parents. Another thought about the germs you're concerning, the germs in ordinary househole is less potent than the ones in the hospital. Logan will still get sick, still need antibiotics at times but with a g-tube (if he gets one)the medication will go in without the need for IV or injection. With him being upright, he will be able to receive physical, occupational(OT) and speech therapy. I've worked at the hospital over 15 years and know the germs that can be found there. I don't mean to scare you but home is a better place for Logan. At least you are all staying together. When the baby is on Ativan or sedation, antibiotic and experienced all the procedures unwillingly, he will fight and many times he will have a less sensitive response than ordinary baby at his age. His sense of touch is going to develope much sooner than hearing, vision and taste. When baby is on ventilor, they taste bud is less sensitive, it's essential to get him eat by mouth and work on him sooner. That's where the OT comes in. I would recommend that you try to touch his lips if all possible even with a clean swab, finger, cloth. Some babies that are not eating by mouth for a prolong period will develop oral aversion to a point that even touch his lips will make him gag. We worked on Jonas diligently, he used to gag really easily. Now he is eating like a pig. He still can't chew tough meat but for the most part, he eats everything. I am hopeful that Logan will be a miracle baby. Please keep up the good work. Love ,cousin Peggy
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