Posts Tagged ‘sats’

I’ve been holding off on actually doing a detailed post until I got a couple appointments out of the way.

So here goes…

L had a Pulmonary appointment and Pulmonary Hypertension Specialist appointment on the same day.

PULMONARY

Pulmonary listened to her, and agreed something was wrong, but they thought her PH was getting worse. They shuffled us off to the PH specialist, but told us that we were to start giving her an inhaler before activity, as opposed to just giving it to her when she had a cold and we needed to do chest percussions.

We’re also supposed to keep monitoring her and the plan is to do a pulse-ox overnight test. 

He also had us sign a consent, saying “If the (PH) specialist wants to do a right-heart cath (which is the gold standard for getting a real read of pressures – echoes are just an estimate), that they would go ahead and do a bronchoscopy with bronchial lavage at the same time.” The bronchial lavage would be a salt water rinse of the lungs if they saw evidence of thick mucous.

PH SPECIALIST

The PH specialist did an echo, and said that the pressures in her heart looked great, and therefore he did not believe it was her PH getting worse. That, instead, it was her lungs. So he’s pushing it back onto Pulmonary, although he does agree with the inhaler before activity, Pulse-ox monitoring, etc.

He also said “If the (Pulmonary) specialist wants to do a bronchoscopy, we’ll go ahead and do a right-heart cath at the same time.” So do you see an issue there? Both of them want to do something, but don’t want to do it unless the other is going to do it. sigh

She had her first six-minute walk, and did fantastic on it. They don’t like to do them in kids younger than six, because of their ability to stay focused and such, but L did it with no problem whatsoever. I stood at one end of the hall, K at the other, and she got a kiss and a swift hug every time she reached one of us. She did 1100 in distance, and her sats stayed in a good range.

That’s another reason why the PH doctor thinks its pulmonary. He says if it was her PH, it would be affecting her all the time – not just sporadically. 

I wanted to yell at him at this point, because I felt at first like he wasn’t acknowledging something was going on, when its obvious that something is.  But he is acknowledging that something’s up, just that ‘objective evidence says its not her PH’.

So…

So now its wait, see, monitor, record, and poke both specialists frequently until we get some answers.

I understand why they don’t want to put her under. I do. Because each time she gets put under, her risks of complications from the anesthesia increase. The chances of her needing supplemental oxygen for a bit afterwards (because of the lavage) is higher.

But I still feel that we need to do it. We need to find out what is going on, specifically. Because something is

Also, the PH specialist does think we should have L tested for the FLNA mutation, as the genetics doctor had recommended, because it could ‘change the course of treatment’. He, however, did not say  HOW it would change things.

Genetics…

So I called Genetics, and asked them to submit the order for the FLNA and POL-G testing for L to the outpatient lab, so that next time L went for her monthly finger poke, we could just get it done at the same time. No extra trips for blood draws. No more pokes than necessary.

“Oh, well, we have to consult with the doctor to make sure its okay.” ARE YOU FREAKING KIDDING ME? THEY are the ones, in their letter to me about G’s condition, had said that they wanted to get L tested. They are the ones that said they feel strongly that L does have x-linked periventricular nodular heterotopia. They’re the ones that said contact us to get things set up. They met with us a couple times over G. They have all the family history they could possibly need. We know all they need to do is this blood test.

So how freaking hard is it to just order. the. damn. test?!

….

Anyways, so I gave L 2 puffs on her inhaler this morning. Then I took her to the babysitter’s house. I took the inhaler and the sat monitor over there. L has a meltdown. Complete and utter end of the world, how dare you leave me at the babysitter’s house, meltdown. Complete with purple lips. So I took her pulse ox.. 91! After a few minutes it got to 93, and that was it.

If we still had oxygen around, 93 would mean her tank was being turned on.

I am so, so freaking frustrated and irritated right now.

I’m not ready to start this fight again.

But… I will.

 

The Children’s Hospital’s Neonatology unit where we live is ranked 5th in the nation. So, basically, one can think that they are pretty darned good. With that being said, I am >thisclose< to filing a complaint against them because I do not believe, in my heart, that G has received consistently competent care from them.

A recap…

1. Seizures – I said from week one that  I thought she was having seizures. I pushed, and pushed, and pushed on this. They did a head ultrasound – said nothing was abnormal.They did a sleep study, and from the PARTIAL EEG done during the sleep study, said that there was no sign of seizure activity.  At 6 weeks old, G started having ‘classic’ seizures (Ie: rhythmic spasming).

They later outright said that you need a full EEG to detect seizure activity… this was after reassuring me that the partial EEG would have picked stuff up.

2. G demonstrated an inability to tolerate formula early on. They tried her on similac and isomil. During rounds, while I was there, they were talking about G’s weight gain, and the doctor ordered her to be put on Sim powder (aka Similac Formula). Between the doctor and all the nurses that do rounds with the doctors, -I- was the one who had to speak up and remind them that G had already shown she could not handle those formulas, and that we’d already tried them. I was the one who directed them towards the alimentum.

3. I recently went in and during the course of my normal conversation with the nurse was told that they were no longer going to do blood gasses on G. I freaked out. “What do you mean? This is stupid. This is effin’ stupid. You’re nuts. I will FIGHT you on this. OF COURSE you’re going to do blood gasses on her. Have you guys went around the freaking bend?” … The nurse asks me if I want to talk to the NP. I said yes, of course. So she goes to get the NP, then comes back a minute later apologizing. She said that she’d been given the wrong information from the first shift nurse and that the order wasn’t in the system yet but they were going to continue to do blood gasses. 

It scares me to think what might have happened if I hadn’t been there to raise a fuss and bring attention to the fact that something wasn’t right.

4. I recently asked one of her nurses for her CO2 levels, in writing, so that I could have a concrete reference for how they were doing. The nurse proceeded to write down all of her gas numbers, without labeling them, and then pointed out which ones her CO2 numbers were. She pointed out the WRONG ones. She said they were 32, 31, 30. They were actually 54, 46, 46. BIG, HUGE difference there. 

5. I had been informed by Dr. Snyder that our plan of attack with G was that if we got a bad blood gas from her that we would wait one hour, and take another blood gas. Then if that one was still bad, we would act on it and put her back on Si-pap. I was also told by a nurse that taking a blood gas while an infant is worked up is not a good thing to do because her CO2 levels are naturally going to be elevated at that particular time…

They took a blood gas while G was worked up. They immediately put her on Si-Pap. They took another blood gas an hour later after putting her on Si-Pap and her levels had dropped dramatically. … G’s CO2 levels, if naturally elevated, do NOT come down that quickly.

6. ENT consulted on G yesterday. I was told at that time that they thought we should proceed with tracheotomy because G didn’t have issues maintaining her sats. Her issues were with her CO2 levels only.  … On cannula, with low CO2 levels (for George at least), she needed 3 litres at 45 percent oxygen to maintain her sats. G also demonstrated an issue with maintaining her sats BEFORE she got rhinovirus, BEFORE her CO2 levels started going out of control. So for this doctor, who has never seen G before, to look me in the eye and tell me that she doesn’t have problem maintaining her sats?…….

Prior to rhinovirus, G required 0.2 litres of oxygen at just above 21 percent to maintain sats. After Rhinovirus, G’s CO2 levels are hard to control, and on cannula she needs at least 3 litres at 45 percent. 

Halfway through this post, the Care Coordinator called me. I told her exactly what I was feeling. I stated that if I could not even trust that I was being given the right numbers in regards to G’s CO2 levels, how could I possibly expect to sit down with the doctors and discuss G’s prognosis and quality of life? They can’t even give me the right freaking numbers from a report!

I pointed out several recent issues that I’ve had. 

She agreed that I had some very valid points and is organizing a care conference immediately (so by Thursday/Friday) so that we can get everything taken care of and my concerns addressed.

I told her that I was going to get G’s records and send them to Cleveland Clinic. She was like “Oh well lets do this care conference before you do anything drastic!” … We’re doing the care conference. I’m still sending G’s records to the Cleveland Clinic.

I told her that I felt like I needed to be at the hospital 24/7 at this point just to make sure that my child was receiving appropriate care. That I could no longer trust the neonatologists (have no issue with the pulmonology or PH specialists by the way) or nurses to take care of G.  That while I thought they did a fantastic job taking care of L, they have absolutely and completely dropped the ball on multiple occasions with G.

So basically I just told Children’s Hospital that they were doing a shitty job with my daughter, and now I get to sit back and get buried in the fallout. Yay. 

I’m tired. I’m so freaking tired. I feel like there’s nothing or no one that I can depend upon. That I can truly lean on. My boyfriend just doesn’t know how to handle the situation.  I have good friends who try, but they live hundreds of miles away. That all I can do is do all of this myself. And I’ve already broken once already under the strain. Luckily I managed to put the pieces back together and keep plodding on…

But what happens when I break again? Will I be able to put myself together one more time?

Will I be able to keep fighting for G, and for L? or will I end up in a padded room or dead?

….and how was YOUR weekend? LOL!

My initial thought as I go to type this out is ‘why would anyone that’s reading this NOT have had their baby tested already?” but I know that isn’t fair to think. Many people aren’t aware of how important or even how easy this test is. Its also cheap, to boot!! So I’m going to spell it out, and I’m probably going to repeat myself a bit. I’ve found that repetition helps drive the point home.

I’m not going to use technical terms. I’m going to make this nice and simple.

Pulse Oximetry Screening = Pulse Ox Test

Why is it important? Its important because the most common birth defect is a congenital heart defect (CHDs)and the pulse ox test is the first step towards detecting many CHDs. CHDs affect roughly every 1 in 125 kids born in the USA ( www.marchofdimes.com ). It can also detect some lung problems, too. (Think about it this way – it measures the level of oxygen in your blood, and your heart and lungs are both involved in making sure you have plenty of oxygen in your blood. So if something is wrong with your heart or lungs, and therefore you’re not getting enough oxygen to all parts of your body… the pulse ox test can help pick up on that.) It is not 100 percent accurate, but its still very effective.

What is it? Its a test that measures the level of oxygen in your blood. This level is called ‘saturation’. I will probably call it ‘sat(s)’ a few times in this post.

Your blood cells transport the oxygen to all the areas of your body. Without oxygen, bad things happen, right? So you need to have X amount of oxygen going through your body at all times to make sure that everything can work the way it needs to work! The pulse ox test measures that “x” and gives the doctor an idea of if your blood cells are able to carry oxygen like they should be.

So, they probably have to give my child a needle poke, right? They do that for a lot of other tests… No. The pulse ox test is about as invasive as sticking a thermometer under your arm pit to take your temperature. What happens is simple.

(Infants) They take this little thing that looks like a band-aid, which has a red light-emitting sensor in the middle of it, and wrap it around your baby’s hand or foot. The light from the sensor shines into the baby’s hand/foot, and they need the baby to hold still for like a minute (which can be achieved via swaddling if nothing else). The sensor instantly starts detecting the oxygen level in your baby’s blood. When they get the reading, they take the ‘band-aid’ off the baby’s foot and you’re done! Its just that easy!

from flickr.com

Dark shot of pediatric pulse oximeter around child’s foot

 

(Older kids) They use a fingertip monitor and your kiddo sticks his/her finger into it. Its padded, it doesn’t hurt. It operates the same way the above mentioned ‘band-aid’ works, but your kid is older and can be expected to be able to hold their hand still for a few seconds, so they don’t need to tape it on. They get the reading, they take the probe off the child’s finger, and you’re done! Could it be any more simple or less scary sounding? (This is how they test adults too, by the way.)

From wikimedia.org

They might look a little different, but this is it basically..

How much does it cost? Because if its not a required test, I’ll probably have to pay for it…

From http://www.cdc.gov/ncbddd/pediatricgenetics/pulse.html

Costs of pulse oximetry screening include screening equipment, supplies associated with screening (e.g., probes, adhesive wraps), and staff time needed to perform screening and track results.

  • Screening has been estimated to cost less than $15.00 per infant.

 

You might have to pay more than that if billing is being a jerk, but… consider this:  Even if it cost fifty dollars… fifty dollars  to potentially save your kiddo’s life versus a couple thousand  to bury him/her.  Which one would you prefer? (I pray you didn’t have to actually think about that one…)

How do I ask for it in the hospital? I recommend that you actually call ahead of time to the hospital you are going to deliver at (you have 9 months to do it…) and ask if it is standard practice.  Also, discuss it with your OBGYN or CNM. Make sure he/she knows that you insist on the test being done. Last: if you have a written birth plan then write it down!

What if  I forgot to ask for it in the hospital, or didn’t know to ask for it? What if I’m not sure if it was done or not? I will give you the same answer for all three. The next time you go to the pediatrician, ask for a pulse ox test to be done. Your pediatrician might say that its standard procedure to have it done at whatever hospital you delivered at. I would ask to have it done again anyways. Just so you know that everything is okay. Sometimes standard procedures become so routine that things can get missed by the people who do them over and over and over again.

What if I ask, but my pediatrician says no. That they only do it on sick kids, or kids who have a family history of a problem. (One of my mommy friends actually had this excuse given to her…) Slap him. Kick him in the manly bits. Tell him he’s a flipping idiot. If your pediatrician is a butthole, which can happen, I would skip straight to “If you don’t do it at my request, and my child would happen to fall seriously ill or die from an undetected heart or lung defect that could have been picked up by this test, I will sue you for every dime you make for the rest of your life and I will make sure everyone knows that you said no to a test that could have saved my baby’s life!” and then I’d probably find another pediatrician, because you don’t need a butthole taking care of your kids.

However, if your pediatrician is reasonable, then I would simply say that “I know  that sometimes just because children don’t look sick, that doesn’t mean that they aren’t sick. I know CHDs are the most common defect, and that even if I don’t have a history of it in my family, that doesn’t mean my kid is perfectly in the clear.” Some variation thereof, and if your pediatrician has two brain cells to rub together, they will do the test.

What if my pediatrician’s office doesn’t have a pulse ox test machine available? ARE THEY STUPID?! Okay, seriously, while I will always recommend that you have the test done by a medical professional, the truth is the pulse ox monitoring is so simple that you can buy a tester off the internet and do it yourself for about $60.00! I did a quick Google for ‘pediatric pulse oximeters’. This is one of the first links that showed up. http://www.walgreens.com/store/c/choicemmed-children-oxywatch-c53-fingertip-pulse-oximeter/ID=prod6060764-product?ext=gooPersonal_Care_PLA_Oximeters_prod6060764_pla&adtype={adtype}&kpid=prod6060764&sst=1fd5b48a-4ac6-a308-82d6-00006ea0c12c

I’m well known among my friends for being a bit of a pushy broad about the pulse ox testing. I have outright told my facebook friends that “If you know me, then you know L’s story. If you know L’s story, if you’ve heard me speak on the importance of pulse ox testing, and you do NOT get it done… if you know someone who is pregnant and you don’t tell her how important it is to get it done..if you don’t spread the word to people who need to hear it… and something happens to that baby that could have been prevented if they had known to ask for a pulse oximetry test then its on YOU. You will have that guilt. YOU could have potentially saved a life.”

So now that you’ve read this and know how easy and quick it is… Its on you.