Now that the experts tell me that I am no longer supposed to dose my sniffly, sneezy, miserable infant with the all-purpose wonder drug that is liquid Benadryl, what are my options? That’s what I’m pondering in my latest post over at Babble.
Sep 102010
Today is not one I’ve been looking forward to.
Today, Baby G gets her first shots – vaccinations.
She was supposed to get them at 8 weeks and she’s now 10 weeks, but I know I’ve put it off as long as I should. She’s not being breastfed, so she doesn’t have that good mama-provided immunity working in her favor. Plus, we’ve started taking her out in public, germ-infested settings more often, like yesterday when she and I went to big sister J’s high school volleyball match and poor G got bonked with stray volleyballs not once, but three times. By the thitd time, I decided that the girls on the other team were obviously aiming for the baby, so we moved far up into the stands, where no errant balls could reach us.
G, keeping an eye out for volleyballs headed for her wee noggin.
But anyway, today she’s getting her first shots. And I dread it. First of all, I am really not good with seeing my children hurting and crying. It makes me cry too. But I will also admit to a little tin-foil hat paranoia about the whole vaccination thing. I know, I know. The current science doesn’t support ANY link between vaccinations and autism. But I also know that mothers who say their child began exhibiting symptoms of autism directly following vaccinations aren’t just making up their very specific observations. Yes, that’s highly anecdotal. But it’s one hell of a lot of anecdotes, you know? And I trust moms.
Plus, just today, it was announced that the sorta secret federal court-outside-the-actual-court-system set up to hear vaccine injury claims has made a landmark settlement with the family of an autistic child who believe that vaccines were the trigger for her disability.
It’s very difficult for even a well informed parent to sort through all the noise on vaccinations these days. But what I do know is that whooping cough and polio ARE killers – the science is quite clear on that. So I am coming down on the side of vaccinating. However, I won’t tell you that I don’t worry about it. In general, I think we are over-vaccinating our kids these days (chicken pox?), and it makes sense logically that some kids’ immune systems are thrown completely out of whack my the massive doses of vaccine that we’re injecting into them all at once.
So how about you? Where do you stand? What decisions have you made for your own children and why? If you have a child with autism, do you suspect vaccines played a role in the development of your child’s condition? Tell me in the comments below.
Jun 302010
I am sitting in our hospital room with G in my lap asleep, nervously waiting for the neonatologist to come back to tell us whether G can be released today or whether they are going to send her to the special care nursery for a day or two to stay under the bili lights. Apparently her jaundice level is creeping up. My OB has already said that I can go home today, but I’m not leaving without my baby. So if she stays, I will be staying too.
Having her in an acute care setting under the lights would be VERY difficult for me to deal with, so I plan to basically beg the neonatologist to take her home and have lighst set up at our house and take her to the pediatrician every day to have her levels checked. I don’t know if he will agree to that, though, Of course, jaundice can be serious – especially in a premature baby – so I definitely want to take it seriously, but I am soooo hoping that we can find a way to manage her care at home. I really want to take her home…
UPDATE:
Well, as you can see from the photo, G is now under the bili lights. After talking with her pediatrician and getting a second opinion from one of my best friends who is a doctor, we decided that we needed to be aggressive with the jaundice. They did give us the option of taking her home and then getting her tested again tomorrow, but if it hadn’t improved by then, she would have had to be admitted to Children’s Hospital. All of that sounded a lot more unpleasant and disruptive than staying here another night, especially since the incredibly kind nurse practiotioner bent some rules and got the bili lights set up in our room. That’s right, no more being taken to the nursery; she gets to stay here with us in her special lighted isolette until tomorrow morning, when she will be tested again. In the meantime, I can feed her on demand and be right here with her all the time.
As for breastfeeding, I think we’ve turned the corner (knock wood). She still wasn’t latching or even showing much interest in eating until after midnight last night, when my instincts told me that she simply wasn’t getting enough calories or hydration from the syringe feeding we had been doing since she was born. I decided to give her a bottle of pumped milk mixed with the high calorie preemie formula, feeding it to her with a special preemie nipple. Well, she gulped that bottle right down like she was starving – which she apparently was. And within an hour of taking the bottle, she was suddenly much more awake and alert and she began latching on and breastfeeding well. She nursed wonderfully all night. Then this morning she seemed to be lagging again, so I gave her a few ounces by bottle again and now this afternoon she is again breastfeeding like a pro. Her weight was down to 5lbs 2 ozs last night, but I’ll be t it will stabilize and start climbing within the next 12-24 hours now that she is nursing so well.
Jon and I are veeeery tired. I am pretty sore from the surgery and neither of us has slept much (or very well) while we’ve been in the hospital. I’m really eager to get home and get cozy in our bed with Baby G, C, and any of the other children who want to join us.
I’ve had two really special Henry moments while we’ve been here that I’ll write about later – in a day or two – when I am not so tired and can focus better. But suffice it to say that he continues to be present with me in this very special experience of giving birth to G.
May 312010
May 302010
May 302010
An update:
H remains in critical condition and in the intensive care unit. The brain swelling hasn’t stopped. He is having cycles every 1-3 hours where his intracranial pressure – which they measure with the monitor that was surgically inserted into his skull – spikes up above 50. When this happens, his heart rate drops – sometimes as low as into the 30s, but generally into the 40s or low 50s. He is deeply sedated and on a respirator. They are trying a variety of medications and other interventions to try to stabilize the wild fluctuations in his intracranial pressure, plus his head is elevated pretty steeply to try to help protect his brain. They finally got a nasal feeding tube in yesterday afternoon, so he’s getting some nutrition now. This morning he is having seizure like activity where he is trembling. This is new. They have now upped the paralytic agent he’s been getting to see if they can stop the shaking. He looks worse to me this morning. His face is more swollen and his tongue is thrust forward in a way that it hasn’t been.
This is hard. My poor, sweet baby boy. It’s all so surreal. Even 36 days into this, I can’t quite believe it’s happening. You read and hear about this happening to other people, but truly, you just never imagine that it could happen to your child, your family
I want to say again how much H’s father, stepparents, younger siblings, and entire family appreciate every single message, email, blog comment, card and letter of support that nice folks have offered and continued to offer. I am so sorry that I am behind on responding directly to people, but please know how much it means to me to hear from folks. THANK YOU.
Oh, and one last thing – I simply cannot rave enough about the amazing care H is receiving at UT Medical Center. He has one-on-one nursing care here in the ICU and the level of attention and skill of his nurses are fantastic. I am also very pleased by the energy, attention and expertise that his neurologist and the neurosurgeons are putting into H’s care. Dr. R in particular (email me if you want to know his name so I can refer you if you are looking for a neurologist) is so thorough and attentive, and he’s really working hard to research H’s somewhat rare condition – the Delayed Post-Hypoxic Leukoencephelopathy. He’s also just plain nice; yesterday he saw how tiring it is for someone 8 months pregnant (that would be me) to be spending hours every day perched on a tiny plastic chair in H’s ICU unit, so he ordered up a comfortable recliner to be placed in here so that I can sit with my feet up when I am with H. That was just incredibly thoughtful of him.
May 292010
H made it through the night. He remains in critical condition and on a respirator.
This all started yesterday afternoon.
He had been deteriorating over the past week and more rapidly in the past 48 hours. He was having frequent “autonomic storms” that were difficult to watch because we could tell he was in such terrible distress. He continued to vomit much of what we tried to feed him. He was sleeping far more than he had previously and speech was becoming more limited. For the first time, he started using nonsense words or in one case, a very distinct made-up word that he used as a toddler and hadn’t used since.
The doctors tinkered with his medications, but decided yesterday to do another CT Scan to see if there was a change in the swelling in his brain. They were pretty shocked to see that the swelling had increased to a huge degree since his last CT Scan last week. His brain is under a lot of pressure and the decision was made to move him immediately from the neurology floor to the intensive care unit. By this time, he was only semi-conscious.
We met with several doctors who explained that his heart rate was dropping and his blood pressure was up. We were told that we will now need to take things hour to hour instead of day by day. The neurologist told us he’s never seen someone deteriorate this fast this long after the original brain injury. It’s the worst case of delayed post-hypoxic leukoencephalopathy (DPHL) he has ever seen.
DPHL is a complication of hypoxic brain injury, sometime but not always related to drug overdoses. It’s also seen in carbon monoxide-induced hypoxic brain injuries. Much is not known about DPHL, but it’s believed to be related to both toxicity of whatever chemical caused the shallow breathing and aspiration that led to the hypoxia, as well as the length of time that the victim’s brain is deprived of oxygen. It can occur weeks or more after the original hypoxic episode, when the myelin sheaths in the brain start breaking down and deteriorating. But it starts with the insult to the system, causing the hypoxia and the delay in getting oxygen to the brain. In some people, it happens after they have almost recovered from the overdose and have resumed normal activities. With H, it started at a point when his brain injury baseline was still severe.But he WAS making tiny improvements overall until the DPHL started.
Whatever drugs were involved in Henry’s overdose, they are obviously still wreaking havoc on his brain 36 days later. And of course, H was also hit in the head and chest very violently, which can’t have helped.
After he was moved to the ICU, he was intubated and placed on the respirator to provide hyperventilation. An intracranial bolt was placed in his skull to monitor brain swellling on a continuous basis. A central IV line was placed in his chest.
Since they began monitoring his intracranial pressure last night (ICP), it has cycled every hour or two from near normal levels up to levels considered fatal – or beyond fatal. This sort of consistent fluctation and cycling of ICP is apparently somewhat unusual. I suspect that it shoots up every time he experiences one of the autonomic storms.
Jon and all three of the other kids were supposed to leave for our long-planned beach vacation this morning. We had decided that he and the kids should go even though I would be staying here to remain on the job and be with H. But everything is on hold now that H’s condition is so critical. We brought J and E to the hospital last night to spend a few minutes with H in the ICU. It was really difficult for both of them. They have been through so, so much with all of this and they love and miss their big brother so much. C is staying with Jon’s parents for the time being. I miss her like crazy. Other relatives may go ahead and take J and E to the beach today as planned with the understanding that they may need to be brought back to Knoxville quickly.
Right now I am sitting in the family critical care waiting room waiting for shift change to end so I can go back to the ICU and be with H. Thank you for all your kind words and messages. It means SO MUCH to our whole family that so many people are thinking of our swweet boy and praying for his recovery. The next few days will be critical for H. Every hour matters.
Give your children an extra hug today. Tell them how much you love them and how special and perfectly amazing they are. Never miss a chance to tell them that. I’d give anything if H could hear me telling him that now.
-Katie
May 282010
Please keep H in your thoughts and prayers. He has taken a turn for the worse and is in extremely critical condition and on a respirator due to a sudden increase in swelling in his brain.
We’re back in the ICU family waiting area, just as we were a month ago when he was first admitted. I can’t believe it.
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