Information and advice
When you first enter a NICU or indeed any intensive care it is bewildering. Lots of machines beeping and lights flashing, lots of wires and lots of words that you have no idea what they mean. Some people will prefer not to know too much about what is going on. Myself I wanted to know everything and researched all the time. It was my coping method, it meant that I could almost predict what would happen next, and when it did happen I was prepared for it.
Here are some things that I think it is important to know. Hopefully it will help you understand some of the doctor speak and enable you to ask questions to make sure your child gets the best care.
STENOSIS : if the doctors mention a stenosis it means there is a narrowing somewhere, Ethan has a stenosis in his blood vessels which is Pulmonary hypertension for instance.
SATS : Oxygen saturations levels in the blood. Ideally these should be 100% but generally for a sick chilld above 90% can be ok, depending on the circumstances. If you are unsure what your doctors are aiming for - ask them! Ask them to point out which set of numbers on the screen relate to the SATS.
BLOOD GASES: Your baby may have blood taken from the heel of the foot in order to check that they are getting enough support with breathing and that there is not a build up of CO2 in the blood etc.
PH: the PH level of the blood shows how hard the muscles are working, for instance if the muscles were working very hard the acid level in the blood will increase. The ideal PH is 7.35, below this and it is acidic and a little above means it is alkaline. Ask your doctor when they do a blood gas what the Ph level is and ask them to explain the meaning of the result.
PCO2 : This reflects the amount of carbon dioxide dissolved in the blood. Ethans has been recently a respectable 6 although in bad times it has been 12! Ask your doctor what your childs result means.
This is a good website that has explanations on blood gases
CRP : this is the bodies inflammation marker, C-rective protein which levels rise in the body in response to inflammation, which almost aways occurs if there is an infection present as well as inflammation caused by trauma. The good result is anything below 2. A result below 60 would indicate a viral infection perhaps, a result above this could be a bacterial infection. If you child has an infection, when the doctors do blood tests ask for the CRP result, it will inform you on how well the antibiotics are working for example. If you suspect your child may have an infection ask your doctor to check the CRP levels, # The Dr's may well refer to this as the infection marker.
White blood cell count : Your white blood cell count will be higher when there is infection present as they are trying to fight off infection, a raised white blood cell count can indicate infection before the CRP level is raised.
Apyrexial : simply means does not have a fever!
Febrile : means fever! as does Pyrexia.
Infarct : An area of tissue death (necrosis) due to a lack of oxygen.
Tachycardic : Fast heart rate
Tachypneic : Fast breathing
If your child is on a ventilator have a look at the pressure settings. Ventilator works by putting pressure into the lungs to help inflate them and then by keeping a little pressure when the deflate to make sure they do close completely. This is known as the Peep and the PIP.
Ethan has had high setting on the ventilator - as high as 34/12! High average setting have been 24/10 though. He needed to get to 14/5 before coming off the ventilator. This is individual to the patient normally so it is best to ask your doctor what setting your child needs to get to. Your child may also be given breaths by the ventilator, ask what the ventilator is set at. On the screen if you see the breaths going higher then this then it is normally because your child is taking breaths by themselves. If they are not don't worry, as some times the doctors dont want them to take their own breaths as they can breath against the machine causing difficulties. If you are unsure just ask.
When the ventilator is being weaned the breaths will come down allowing your child to breath up by themselves, as well as the peep and pip coming down. Sometimes when the blood gas result PH level is high it can mean the ventilator needs to be weaned.
With the lungs Steroids can help the inflammation but steroids can also interfere with growth. For a premature baby the doctors try to avoid giving steroids initially because of this. Different steroids can help different parts of the body.
Ethan has been on Dexamethsone which is stronger then prednisone. Both are used for the lungs. - Steriods can be given for upper airways via a nebuliser - Ethan has had salbutamol inhaler for this.
Diuretics are important in the treatment of chronic lung disease. Chronic lung babies lungs are basically a sponge - that soak up any excess water causing breathing problems so the diuretics help to dry the lungs out. If your little ones oxygen requirement has gone up, it might be worth asking if the diuretics has been stopped.
Sidenfil : Ethan is on Viagra! Another name for viagra is Sidenfil. It works by opening up the blood vessels. Ethan has a narrowing (a Stenosis) of the blood vessels that goes from his heart to his lungs (Pulmonary hypertension) and this helps get oxygen to his lungs. Dont worry the amount that he gets is very small then the amount needed for older gents!
His pulmonary hypertension is likely to be the result of his Chronic lung disease.
Vitamins : Your little one will be on vitamins - Ethan gets multi vitamins, plus iron and calcium. Ethan had brittle bones of prematurity and broke his leg plus his ribs due to this. This is something that will get better. This indeed did get better and Ethan no longer needed added vitamins after he was aged 2. His bone strength also returned back to normal levels, however he did have one leg shorter then the other due to the break in his leg that happened at an early age.
Anti Reflux meds : Ethan is domperidone and lansoprazole for reflux. Lansoprazole inhibits the gastric acid produced in the stomach. Domperidone can be used for nausea, and interestingly can be given to women to help them produce milk after they have had a baby! Later Ethan was also on ranitidine for reflux and this helped a great deal. Some other children was also on gaviscone.
Reflux: reflux in its self is when the stomach contents come back up. Sometimes the baby will be sick with it, other times you will see arching of the back and crying after a feed. The stomach contents contains acid which burns giving the baby the feeling of heartburn I guess. The worrying aspect of reflux it that it can lead to aspiration.
Aspiration : This is when something gets inhaled into the lungs. With reflux the stomach contents can sometimes go up - not all the way and end up in the lungs instead of being vomited out. With Ethan I could see the reflux as he was gasping for air while this was happening, his SATS would drop slightly when this happened and then would pick themselves up again. Aspiration can be identified by either hearing crackles on the babies chest via stethoscope which can indcate a pneumonia type infection and then you would see that the top right lung will be whiter the the rest. You will hear the words more consolidated etc.
If you child has repeated chest infections and the x ray shows the top right lung is effected every time then it is possible that you child is having reflux related aspiration, and this will need to be treated.
Ethan had a gastrostomy with jejunal extension, (PEGJ) which means that he has a tube into his stomach with a further tube going past his stomach into his intenstines. He is fed direct into the intestines to avoid any reflux. He could have had a surgery called nissens fundoplication (which he did indeed end up having and then after a normal gastrostomy peg) in which the upper part of the stomach is wrapped around the lower part of the esophagus and stiched in place. This prevents anything coming back up from the stomach while allowing food to go into the stomach. It was decided against for in Ethans case in the hope that he will grow out of reflux. It is commonly used for severe reflux. If in the future Ethans reflux does not get better then it is likely he will need this operation. When this is done he will be able to have food via the stomach.
The Peg create some difficulty in dressing as I do not want to pull on the peg in anyway. I cut a slit up the side seam of his baby grows, sew the raw edges neatly and then sew a button into the bottom of the vest so I can do it back up. This way it is easier to dress with out having to disconnect his milk as he is fed continuously
Ethans stomach is more rotund if you like, towards the bottom, the reason for this is because of his chronic lung it pushes the internal organs slightly downwards. (this normalised as he got older)
Reflux, chronic lung, pulmonary hypertension and brittle bones of prematurity - Ethan should hopefully grow out of as his gets older. He may never be much of a sportsman but I dont care!
ASD : Atrial Septal Defect - Ethan has a small hole in the heart between the two top chambers which is allowing blood to flow from left to right chamber. The hole is not bog enough for the doctors to measure the flow, but it has got bigger since they first discovered it. So it will have to corrected surgically at some point. We have appointments at Great Ormond street every three months to keep an eye on it. (this closed on its own!)
Remember your child does not have a voice as such, and so you are their voice. If you want more information on something your doctor has told you, ask them. I would also say bring a notepad and pen with you as you are likely not to remember everything the doctor has told you. If necessary ask for another meeting to go over what they said so that you are comfortable that you have understood.
Dont be afraid to ask for a second opinion. if you truly believe that what you are being told is incorrect seek further advice, you are with in your rights to. I have even asked to see blood results and xray's just to make sure I understand what is happening and what I am being told if correct. I have actually taken pictures of xrays on my phone so that I can compare previous x rays. These have actually become very useful.
You are allowed to ask for meetings with doctors just to make sure you get a full picture of all that is happening.
Keep calm - even if you are angered by some news or actions - keep calm.
While at Great Ormond street we was told that Ethan was dying as his SATS were at 60% and he was getting 100% oygen. I asked if his organs were then shutting down, the answer was no, but will be in 48 hours or so. So therefore I said he is not dying right now. Every day I was asking for blood results to see if how his organs were coping, and every day we were told they were doing well. After about 3/4 days it was obvious Ethan had turned a corner and he would be OK.
ASK QUESTIONS! Speak to other parents. Every body has such a different story to tell, but yet you can help each other just by talking to each other. Sharing experiences.
If you dont like something say something! If you are in the system long enough you will find mistakes and bad practices. Dont ignore these, say something straight away. Speak to the ward manager, or Matron and even the PALS office.
find out what help you can get, you may be able to apply for a charity donation from places such as Sunny days, The Family fund, The social fund etc. Some hospitals help pay for travel for the parents and the child for appointments, and some hospitals help the parents with food vouchers when their child is in intensive care. If you dont ask you dont get!