March 31, 2010

WEDNESDAY, MARCH 31, 2010 1:05 PM, CDT

Ok, we finally got Liam's test results back. The lumbar puncture was fine. The EEG was abnormal - confirming he did have a seizure. The good news is he hasn't had any "break-through" seizures since starting the seizure medication. The doctor said when they have seizures this early, they normally grow out of them unless there's some sort of abnormality with the brain which Liam doesn't have - according to the doctor. He is getting another blood transfusion today and they started an IV in his scalp...Anyway, his o2 seems to be a tad bit more stable today and he is coughing up and they're suctioning out all kinds of gunk from his lungs and it's turning more yellow/cream colored - which is an improvement from the brown mucous they were getting. So, that's all we know for now.

Oh, and he's a thumb-sucker! Even with the ET tube, trans-pyloric OG tube, and the other tube in his mouth, today he is still managing to shove his thumb in his mouth!

March 30, 2010

TUESDAY, MARCH 30, 2010 9:53 AM, CDT

Say an extra prayer for us if you can. Liam continues to drop in his o2 sats. The night nurse noticed (what I noticed and mentioned yesterday to the day nurse) that every time his o2 drops, he's got twitchy/jerky movements going on and early this morning, they apparently were very rhythmic making the nurse suspect he was having a seizure. So, they did an EEG this morning and have started him on seizure medication. We should have the results of the EEG back this afternoon or evening. The doctor came in and talked to me when I first got here (I'm in the waiting room right now while the doctors are doing bedside rounds) and told me all this and said they're postponing taking him off the vent, for now.

Oh, and I almost forgot - they're doing a spinal tap on Liam today to make sure he doesn't have meningitis, which can cause seizures

TUESDAY, MARCH 30, 2010 9:31 PM, CDT

We won't be getting any results tonight. It's a little frustrating about not having results of the lumbar puncture (spinal tap) back - but, I guess, like they said, it won't change anything because they're already treating him with strong antibiotics. The EEG is more understandable because we were told it might be this evening or even tomorrow because there's only one Pediatric Neurologist in Springfield - and he has office hours, so he can't read tests (i.e. EEG) until after those hours unless it's an emergency - and, there again, they're already treating him with seizure medications (phenobarbital and Ativan (lorezepam)), so there's no real rush for the results today.

Liam had a really unsettled kind of day, again. He was jumping from one extreme to another with his o2 sats, which resulted in him having his ventilator turned up twice. When I left, he was also on 40% oxygen and the vent settings were up to 30 (# of breaths the machine is taking for him) and 25 (pressure) - a big set back for him.

March 29, 2010

MONDAY, MARCH 29, 2010 9:45 PM, CDT

Today was not as great as the past several days. The good news is that they're planning to take Liam off the vent in the next 24-48 hours. The bad news is he has pneumonia again. They also did an ET tube culture, blood culture, and PICC culture today. Though we don't have final results (or preliminary ones for the blood & PICC cultures), the preliminary results of his tube culture were positive for some kind of antibiotic resistant bacteria, so he is getting 2 different antibiotics right now - vancomycin and gentamicin. I'm hoping the other two cultures come back negative!

He was also very unsettled today. He bounced back and forth between sats that were too high and sats that were too low. The too-highs are good - meaning the amount of oxygen he's getting, or the vent settings, need to be lowered. The too-lows aren't good. He had no middle ground today - when I say he bounced back and forth between the extremes, I mean it. He also required very frequent suctionings today. The nurse did say he seems to finally be settling down when we called a little while ago.

March 28, 2010

SUNDAY, MARCH 28, 2010 5:14 PM, CDT

Today has been another good day for Liam. Dr. Sison has decreased the rate at which the vent breathes for him and started him on caffeine (which helps him remember to breathe) to get him to breathe more on his own. So far, he is doing pretty well with out-breathing the vent. Whereas before they wanted him NOT to breathe for himself, now it's a good thing. He is tolerating the CPT pretty well, too, though he does NOT like it.

The BIG news, though, is that Dr. Sison is saying they're hoping to try him OFF the ventilator sometime in the next couple of days and try him on CPAP (like people with sleep apnea use) which will keep pressure going to his lungs so he doesn't have to work so hard to keep his lungs open.

We still can't hold him, though, right now. The only thing that's stopping us is the UAC line. Once that comes out (again), we can hold him - even if he's still on the vent. I'm also being very cautiously excited about he possibility of coming off the vent, too, because he's being watched VERY closely for pneumonia, right now, because he's having lots of brown-tinged mucous when they suction him....praying he doesn't end up with pneumonia again!

A few other things I forgot earlier:
Liam came off the phototherapy again, today. He also had his first poopy diaper...so hopefully the phototherapy light is gone for good, now that he has a way to get rid of the bilirubin!

March 27, 2010

SATURDAY, MARCH 27, 2010 6:43 PM, CDT

Liam continues to do well on the conventional vent and is tolerating his feedings well. They did start CPT on him today which is where they take this little foam mallet thingy and pound on his back and chest to loosen up the secretions in his chest. He also took his very first peek at the world today when Daddy was in there with him (Mommy was downstairs with Avery & Xander and missed it)!

March 26, 2010

FRIDAY, MARCH 26, 2010 12:41 PM, CDT

Apparently Liam heard the doctors talking about giving him a new medication because when I came in this morning, the nurse said there was improvement on his x-rays from yesterday and they might be moving him to a conventional vent sometime today. The doctors reviewed cases this morning (apparently they don't make bedside rounds on Friday - they staff all the cases together in the workroom) and after his 11:30 AM blood gas, decided to move forward with putting him back on the conventional vent. I am in the waiting room right now waiting on them to finish the changeover!

FRIDAY, MARCH 26, 2010 11:15 PM, CDT

Liam transitioned very well to the conventional ventilator today and his oxygen is down on 23%! He did decide he no longer needed his UAC line today and it fell out. That's a line in his umbilical cord/belly button that allows blood to be drawn without pricking him - a good thing b/c they do blood gases several times per day. Anyway, they said it's normal for them to fall out after this long but they would try to put another one in (and if it didn't go in, he'd just be without one)...thankfully the doctor was able to get a new one in so he doesn't have to be pricked all the time, for now. They FINALLY got the trans-pyloric tube placed just right late tonight and started him on his first milk at just before 10:00 PM! Again, today, several different nurses tried before the doctor finally got it in correctly when he put the new UAC in...if he didn't get it in, they would've had to do some testing to look at Liam's anatomy because it's not normal for those tubes to be so hard to get into place - every nurse said they're usually VERY easy to get in and they aren't sure why it was so hard to get in.

March 25, 2010

THURSDAY, MARCH 25, 2010 2:14 PM, CDT

Decisions, decisions...

Today we were presented with a recommendation by the Neonatologist and have a decision to make. Liam's lungs are "stagnant" as far as development/maturity goes and he's not making any real progress toward getting off the vent right now. In addition, they say he has some inflammation in his chest. Dr. Stevens spoke with us and stated since Liam is almost 2 weeks, they want to see more improvement so he's recommending a round of steroids (not the same ones they used for his kidneys) - this steroid (I have to remember to ask the name of it - when you're being presented with this stuff, you don't think of the questions til the doctor is gone) requires parental consent to use because it used to be used all the time in large doses and has been shown to cause developmental delays/disabilities. Dr. Stevens did say they use only a fraction of the dose that they used to so the delays are much less than they used to be but there's still potential risk with using it.

Shane and I are torn on this decision. On one hand, we want his lungs to mature and him to be healthy. On the other hand, the thought of developmental delays/disabilities (which are already a risk with his prematurity) is scary. So that's where we are.

They did put a trans-pyloric tube in Liam's intestine today (it goes in through the mouth and is placed just past the stomach in the intestine) to be fed milk. For him, they don't put it into the stomach b/c they don't want his stomach expanding and putting pressure on his lungs so that's why it's past the stomach.

THURSDAY, MARCH 25, 2010 10:52 PM, CDT

The trans-pyloric tube didn't go in properly. In fact, they tried at least 6 different times that I was present for and he had 5 x-rays to see if it was in correctly but it never went in right so they've given up on it for the night and will talk to the doctor about it in the morning. I'm a little disappointed it didn't work out and I just hope something isn't wrong! I did remember to ask the name of the steroid the doctor is recommending but the nurses had shift change so the new nurse this afternoon had no clue as to what I was talking about. I'll ask the nurse in the morning and if she doesn't know, I'll request to speak to the Neonatologist! Other than that, it was a good day. We did have the same nurse today that we had yesterday and I guess first impressions aren't always the best impressions - she was much nicer today...perhaps a bad day yesterday?

Edited to say: Way to go Shane...he requested to speak to the doctor when he stopped by to see Liam. The medication they're wanting to use is called dexamethasone and is only used for a maximum of 3 days in very small doses.