Refusing blood test for 3 week old

[StillinShockAhhhhhhh]

My dd had been going to hospital for blood tests regularly since she was 5 days old due to low sodium levels have had various threads about this in last few weeks. Every time we take her the Drs struggle to collect blood and she ends up with various needle marks and bruises on hands feet elbows and legs the hospital are unsure what they are testing for and purely 'monitoring' her levels at the moment. She does not appear unwell and all her other blood tests.blood pressure oxygen says are normal. What would happen if I refuse any further tests unless she begins to feel unwell? On numerous occasions we have had to have the test redone after 5 attempts to withdraw blood as the lab wernt satisfied with the quality and could not test the levels at the moment

If the hospital could confirm that they could withdraw the correct amount of 'useable' blood first time I would not even consider refusing but watching my poor dd being turned into a pin cushion more than necessary is becoming unbearable even our health visitor is recording the bruises and questioning my explanation

Could you speak to a hcp and see what they say about your dd not having the tests? You need to be fully aware of all consequences before you make a decision. That being said, I'm pretty clueless about the Sodium levels. Explain about your stress seeing your dd being used as a pincushion and that even the hv is now recording the bruising. I presume she knows about dd, is there an alternative they could provide.

Call the consultant and ask why.
I wouldn't be stopping testing until I understood what was happening, and the reasons for it. Given that they don't normally do this with newborns, I would assume that the consultant had some reason. If I didn't understand what it was, I would ask.

The nurses taking the blood are not going to know what it is for. You need to speak to whoever is making the decisions, ie the consultant. And you need to ask what the possible consequences of you stopping the testing are.

To just do it would be stupid.

Don't refuse, however who are you under? Ask to see the dr your dd is under and explain what is going on, along with the distress being caused and see if they want to continue the tests.

Make sure you tell the dr about the hv. I doubt they will be impressed.

My ds needed iv antibiotics when he was 1. The line fell out, it was distressing to put another line in..anyway after some discussion they were happy to go for oral antibiotics. The drs are reasonable they wont just continue if they dont need to. If they do need to thats different but get them to have a word with the hv. You could do without that!

Hyponatraemia (low sodium) can be fatal. The symptoms of low sodium are confusion (hard to assess in a newborn) seizures and coma. It must be absolutely awful to watch your baby being subject to blood test after blood test but I would play it safe.

She goes to the consultant for the tests as she is still to small to go to nurses apparently. They are monitoring her levels to see if they are just naturally low or if there is an underlying condition. The worst outcomes have already been dismissed. She went on Friday for the most recent tests had needles in both hands feet and wrists for them to then tell us the lab has refused the blood and they need to be redone

I should add, I feel your pain at having to watch your little one undergo this stuff. Dd2 was extremely poorly as a newborn, and it is hard. But you need to look at the longer picture. Your dd is at home with you, and the bloods are only periodic.

Fwiw, dd2's veins are pretty tragic these days, and if they need access they have to use her feet (she is unimpressed by this) but given that they are in such a state because of the critical care she received, we live with it.

Sympathy, but you need to make informed choices with this stuff, not knee jerk ones. Get informed.

I can understand your reluctance, but a baby may not show many signs of being very poorly and ultimately low sodium levels can lead to coma and death.

Her hyponatremia is borderline levels are 132 are they are not concerned about seizures (confirmed by consultant) and have stated they do not feel the need for sodium supplements

She ever sees just one consultant every time we go back its a different Dr with different plans the original benchmark was to get her levels above 130 the monthly reviews but the next Dr decided to continue weekly the Dr we saw Friday had no idea what to do just took the blood and said he would call after reading her notes

Never*

Aw, it is horrible seeing your baby go through this - I read your other thread.

Having said that, it is really important that her sodium levels are being monitored - too low could be really dangerous.
It IS very difficult to get blood out of such a young baby - I know, I've seen my DS2 go through it (31 weeker, spent 5 weeks in hospital, some of which on NICU, bloods tests at least a couple of times a day initially, with iv lines etc on top of that) and have done it in my professional life.
DS2 is now 11 yo and still has scars on the back of his hands and at his feet - tiny, tiny scars that only I can see, but they are there. We sometimes talk about them and how frightening a time it was for us and how brave he was - he likes to hear about it .

Anyway, please do speak to your DD's consultant and make sure you understand why the frequent blood tests are needed. Ask if there is any other way they could be obtained. Make sure that the most qualified person for the job does the blood letting - that could be a nurse or a specialist phlebotomist or an experience dr.

I hope she stabilises b soon and all this will become an increasingly distant memory

My DD has had regular blood tests since she was newborn. I know how hard it is to watch.

I can't comment on this particular condition, but don't feel bad for demanding the best blood taker they have. We've found paediatric registrar to be the best.

Also, maybe sure baby is well hydrated and kept warm prior to blood draws. I gave extra bf and now give lots of water, milk and fruit on the morning of blood tests and it's helping.

I assume they don't need huge volumes of milk? Could they do a heel prick and squeeze while you feed her? It can take a couple of pricks to get enough but it bruises less than trying to get into the arm, and each time they fail to get blood from an arm they ant try that arm again for weeks while it heals

Re: your HV - a letter from your consultant should suffice, even an appointment letter or evidence of appointments.

Best of luck.

They tried the heel price Friday and this is the test that was refused as its classed as not being free flowing due to them needing to squeeze her foot it's just becoming a nightmare instead of being weekly we are going every few days due to tests needing to be redone the ward we go to only seems to have one Dr on each day so don't have the luxury of asking for somebody else. Two of the three Drs have stated they feel her levels are just naturally low as they have stabilised at 132 and not dropping anymore

Prick* apologies for appalling spelling and grammar my phones thinks it knows better

What pacific said.

Start looking a bit tearful and stressed when you go back. It helps(i shouldnt say that but that was our experience. I was genuinely stressed and tearful in my defence)

Remind them of what the consultant said and see if they'll bend a little.

It is horrible but it does pass into a distAnt memory.

Oh, giving lots of fluids on blood letting day is a v good idea - and her being extra warm

I know it sounds horrific, but it is much easier to take blood from the temple. Have they ever tried that?

No they haven't, is that something I can suggest?

Some medical people are woefully inept at taking blood. You should state firmly you do not object to blood being taken but you want somebody that is experienced to take it and if not then you don't give permission for it to be taken until that person is found.

I think you could explain your stress and ask for the most experienced person to do the blood, I'm not a fan of inexperienced people practising on my baby, especially when they are tiny.

I'd suggest it. They should know about this if they are used to dealing with newborns, especially if it is in hospital!

As upsetting as this must be to watch, please continue with the monitoring, OP. Your DD is very borderline with a 132 mmol/L reading and, as has been explained to you, hyponatremia is very serious. I imagine they are investigating many potential reasons for this, SIADH being one.

I understand how this feels - my DS was admitted with suspected bacterial meningitis when he was 3 months old.

Nothing will ever erase the memory of holding my poor baby screaming so weakly in agony because it took over 45mins of constant attempts in hands, feet, arms, legs and even head, for the paediatric consultant to insert the IV cannula.

Nor will I ever forget the consultant saying, "We prepare for he worst and hope for the best..." as he whisked my baby off for a lumbar puncture.

If they could get the blood on one maybe even two attempts I wouldn't even question it but 5 attempts minimum seems unnecessarily cruel, even the elder consultant in a and e couldn't successfully collect enough. In reality I think I'm just overly tired but it's so draining going there every few Days knowing that I'm going to have to return due to another failure

Be kind to yourself, OP. Of course you are overtired - you have a new born baby to look after, which is life-changing in itself. But this added health complication must be awful for you all, just awful.

I know how you're feeling and it's completely natural. I'd request a professional who is used to taking bloods from a neonate, as that may minimise the pain and suffering you both go through