My child has a liver issue

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This is going to be a very loooong post about my son being diagnosed and our experience at the children’s hospital. Sorry, but I want to share and rant about all the badness in detail. 🙂

At the age of one month, during a health check-up we complained to our baby’s GP about the amount of spit-up he had in addition to tummy aches, bloating and him pushing all the time. She referred us to an ultrasound scan for his abdomen, which we then booked for almost a month later at a close-by health centre. When we eventually had the scan, the ultrasound technician pointed out that there is a formation in the baby’s liver that he doesn’t know what is, he has never seen anything like that before and that it is necessary to investigate it further, most likely with a CT scan. No word about tummy troubles. We went looking for a wolf and ran into a bear.

Next we notified the GP of this, she gave the necessary referral to perform a CT scan. After ringing several places, conclusion was that only one place does them for such a small infant – the Children’s Clinical University Hospital. When I rang them, they asked several times, is it really a CT scan that we need, or an ultrasound. Obviously, not an often practice to perform them on such a small baby. They couldn’t even say right away about how it would go. Someone more competent called me back a moment later and told that in our situation, firstly, the child needs to have his blood tested to make sure that kidney is functioning well in order to be able to use contrast matter and obtain a better image and result. Secondly, the scan would be performed under a general anaesthetic. That is because he mustn’t move during the scan. That was not a good news for me, I started crying, I didn’t want my baby to go through such stress and suffering. I told them I’ll consult with my GP and call back about this. With the GP we agreed that we would first consult with a gastroenterologist about this situation and then see what would be the best plan of action. Even if the gastroenterologist says a scan needs to be done, at least I’ll have gained some time and my child wouldn’t be a 2 months old infant.

Of course, the queue for a state-paid gastroenterologist was a bit long – all booked up until the end of May, which is 3 months wait. We found a paid appointment option for 2 or 3 weeks later. And so we went. The result of that appointment was that the doctor offered us hospitalisation at the children’s hospital in order to be able to investigate the liver problem further, starting with another ultrasound and some blood testing and see if additional examinations are necessary. She told that most likely an MRI scan would be necessary instead of a CT scan, but that would still mean sedation for the baby.

We followed her advice and accepted the offer, got the necessary referral and 4 days later got admitted to the Children’s Hospital for in-patient examinations. For some reason, I had imagined that it will be an old frightening place but was pleasantly surprised to find a fairly recently built, good-looking building, nothing old there. We even got a separate room and WC without paying for that as an extra because they want such small babies to be separate from other children for the sake of guarding the little one’s health. Only I could stay over at nights though, the dad had to leave in the evenings but that was understandable and we expected that.

Day 1 at hospital

The plan for day 1 was testing baby’s blood and pee, and an ultrasound for the abdomen and head too. For drawing the blood, only one parent can be present in the procedure room to avoid clusterfuck, so the dad stayed. Firstly, because I didn’t really want to see my child suffer, and secondly because he used to be a paramedic and knows these things. Well, all the crying that I heard behind the doors was awful, not good. When it was over and we were back at our room, my partner was furious about how that went. He said he could do a ten times better job at night in the dark, in an upside-down car in a ditch. Don’t know what exactly was wrong but I understand that it was chaotic and dragged out too long, the needle was not put in well and basically our child was unnecessarily tortured to the point where he held his breath for about half-minute and was close to passing out. Well, the way he cried after was not nice to see, that was “I’ve been hurt and mistreated” cry, not just simple “I’m annoyed” cry.  Heart-breaking. Anyway, later it turned out that the results from that blood test were abnormal, were the lab person was calling to our department, panicking and freaking out about the state that our child is in. Apparently, that was because the baby’s arm was too tense or something. The result of this fuck-up was that at 8PM a nurse came and told they have to draw blood for testing again, but because they have to do it without a tourniquet, it has to be drawn from the head, as there are many nice blood vessels there. I had never heard of anything like that and was a bit shocked, and my facial expression was probably showing that, and they told they want to do it without me so that I wouldn’t get too emotional. I told them that if not me, the dad will be present. They still tried to not let that happen either, saying that men aren’t usually that tough either when it comes to their children being poked with a needle in the head, but the fact that he used to be a paramedic convinced them. So on they went with the second torture of the day. My partner still returned with a hysterically crying baby, but said that this time it was done relatively well. He also joked that probably that was because they knew he was watching them like a hawk, as he knows how everything is supposed to go.

The ultrasound for tummy and head that day was done around 6 PM. The head was ok, but as to the liver, it was confirmed that there is something there. The doctor said that most likely it could be non-malignant formation of blood vessels called haemangioma. If the formation does not grow it is supposed to be harmless and does not manifest itself. Nevertheless, an MRI scan is necessary to know precisely what it is.

Day 2 at hospital

In the morning, we were called in to the procedure room by a nurse, saying they need to draw blood. Again. Really? As I walked in, the gastroenterologist who arranged us being in the hospital and was our main doctor there was walking past, saw us, came and luckily stopped the nurse from taking blood. Turns out, it showed up on the system that it needs to be done, but in reality, it didn’t have to be. It was all a misunderstanding caused by miscommunication between staff members. Thank god, the doctor was there and made it in time.

At some point, don’t remember when exactly, we were called in for another ultrasound, this time for the heart, to make sure that there’s no defects with valves and blood vessels or whatever in there. That went fine, his heart is nice and strong.

Our doctor also came to talk through blood results and plans in the morning, said that bloodwork looks ok, except some liver function results, which are a bit high. That means that whatever is that formation, it is either pushing on the liver or otherwise bothering it. She said that an MRI could be done some time and she was told a specific date (unknown to me) but she arranged that it’s done sometime within the week but no later than Friday. Only it wouldn’t be predictable, they could tell any day that the next day would be the scan day. Until then we just have to stay there and wait. Of course, it ended up being Friday.

Day 3 at hospital

Nothing much happened, apart from daily weighing, taking temperature and measuring blood oxygen saturation via a machine with a clip-on light thing. No blood drawing. Because the day was not busy, we managed to go out on a walk with the baby wrapped in a scarf sling. That was the first time we went out in the wrap, it was nice.

Day 4 at hospital

Blood needed to be drawn for repeated testing again and we were called in to do it before the dad had arrived so I went instead. The nurses tried again to tell me to just leave the child with them but I reassured them I was fine and apparently was convincing enough. It was done from the head again, which was what me and my partner preferred now, considering the bloodbath and abuse to the arm on the first day. Of course, the baby cried and it wasn’t pleasant, but it went well, not too bad. He cried more because of discomfort and being annoyed than from the actual procedure. The pinch of the needle only hurts a little and only for a couple of seconds anyway. Also, it’s kind of better to have a crying baby because that makes the blood vessels pop out better and the blood flows better too. They kind of had to nudge the baby in the process because he calmed down after the needle pinch and the blood didn’t flow fast enough. My conclusion from this was that taking blood is best from the head if it is ever necessary, even though it seems freaky. In reality, it is less painful because there’s less muscles in the head for the baby to tense up, it is much quicker and simpler. The head is protected by the scull, the needle can’t go into the brain or anything.

Doctor later informed us that MRI scan is the next day. Not only that, but a CT scan also needs to be performed on baby’s lungs to make sure there are no bad formations there too. Initially I was told that it would have to be done separately, possibly next Monday, which would unfortunately mean sedating our baby twice. However, she came back in a moment and said she arranged it to be done under one sedation, on one day, one after the other, as the MRI room and CT scan room are next to each other. I don’t know what would we do without her, she is a genius when it comes to arranging things like this.

We had to wait for a consultation with an anaesthetist which is standard procedure a day before any sedation takes place. Unless I had made him stay and answer the list of my questions, I believe he would have just told us when we can eat for the last time and left. Oh no, I made him work! LOL. What I learned is that the sedation will take place via an IV, which means needles and poking my son again. I was hoping for it to be done with gas, but nope, needles it is. Before the procedure with sedation, the baby’s stomach must be empty to prevent him throwing up and choking on it, and that in turn means no feeding for four hours beforehand. Well, isn’t that great! Not! Considering that I feed him every two hours, and he normally can’t wait to eat when those two hours are up, not exactly the best situation for us. The procedure would be taking place around 9 or 10 AM so he has to finish eating until 6AM. You got to do what you got to do.

My partner wanted to make sure that a numbing cream is used next day when an IV is put in to slightly ease the baby’s suffering. So I went to talk to the nurses in the evening to make sure that they have the numbing cream and that it can be used. One of them started talking me out of that, saying that for some reason it is much more difficult to cannulate when the numbing cream is on. Also, to make sure that the cream takes effect, they have to tape a plaster over each spot that it’s used on, and that the baby will cry anyway when the plaster is torn off. According to her, it’s a stick with too ends. All of that was nonsense, I don’t know why she wanted so adamantly to talk me out of using a numbing cream for cannulating a 3-month-old baby. Nothing of what she said was true, as it turned out the next day, so why would she say all that, I don’t understand. I basically then said that my partner insists on it being used, playing out the paramedic card again, and that’s that.

Around 10 PM, a nurse came in, asked if an IV has been put in for the baby, which it wasn’t. When I asked what time can I count on it being done tomorrow, she said it will be from 6 to 7 AM. The day ended on that note.

Day 5 at the hospital – the doomsday

In the morning my baby was starting to wake a bit past 5 AM but I managed to keep him asleep until 5:40AM, by using his pacifier, then fed him, so he finished eating before 6AM. Started waiting for someone to come call us for the IV, yet no one came. He started to get sleepy so around 6:45 so I went to the nurse post where they were all sitting with tea/coffee chatting with each other. I said that maybe it could be done now, before he goes to sleep. The same nurse from the night before came up to me and said that someone will come to us in a moment. Went back to our room, waited – nothing.

07:50AM – he had slept AND woken up when a different nurse popped in our room, asked how we are doing. When I told we are waiting for the IV being put in, she optimistically said: “OK, I’ll let make that known, a new shift just started”. Awesome, so that means that that nurse from before just wanted to get rid of me because her shift was ending. WTF?!?!? First of all, can’t you at least try and work your schedule around my child’s schedule? Just a little bit of effort to make things slightly easier for us, it’s stressful as it is for us. And if you can’t or don’t want to, just tell me no, it’s not gonna happen now, and at least I wouldn’t be trying to keep the baby, waiting for someone to come call as for the procedure. So, this already pissed me off. Also, we still didn’t know for sure what time exactly the MRI and CT scan will happen, as all we had been told was that it will be around 9 or 10 AM. I knew inside that most likely that time will be an issue too and was getting wound up about that too.

08:30 AM – we went to put the IV in. The young nurse said yes to the numbing cream without hesitation and rubbed it on several potential areas. No plasters, none of the crap that the old crab had told me the day before, trying to brainwash me for no reason. After inspecting his extremities for blood vessels, which had him crying already because of using a tourniquet, the right hand was chosen for the IV. Cannulating him made him cry more, of course. However, they also needed a blood sample for testing, so the nurse tried to draw that from the IV in the hand, yet nothing would come out, just a few tiny splashes. She flushed it with liquids a few times, which didn’t work, and still no blood came. The reason according to the nurse was because he hasn’t eaten for a while and the blood is thicker. My partner afterwards said that IVs are not meant to be used for drawing blood and that was the actual reason why nothing came out. Anyway, seeing his hand getting tortured and him getting hysterical with crying, I said maybe it’s wiser to just quickly draw the blood from the head, and stop torturing his hand. To that they instantly agreed, said that I’m right, and it was done. I don’t know why me, as a nonmedical person can think of it and they couldn’t. Anyway, my child was screeching helplessly at an unheard frequency by the time it was over. At least the most painful and feared thing of the day was done and over with.

10:00 AM – no one had come to take us to the scans.

10:25 AM – a nurse pops in and asks when I last fed him. I told that before 6. She disappears and is back in a few minutes, saying I can feed him now because the procedure is postponed until 2 or 3 PM. Seeing my shocked face, she just gestured with her hands up, as if to say, “it is what it is” and left. No sorry, no apologising, nothing. So the baby was fed and we waited, again. Around noon, after we raised our concerns to our doctor about this situation and that he has gone from eating once every two hours to eating once every five hours, our son was put on a fluid drip to at least keep him hydrated.

Around 2 PM – the nurse came and took the drip off, saying that in 10 minutes we need to go. We changed him into clothes with no metal snap buttons, which is a requirement for MRI, he was asleep we and thought we’d go wait at the nurse post to go, as that would be any minute now. When they saw us, confused looks were exchanged and we were awkwardly told to go back to our room and wait, it will be another half-hour. At least this time the same nurse who did the gesturing earlier apologised and said it is not their fault, they do not organise it. Well, what else to do than just go back and wait again. Luckily, baby was sleeping and through the entire day of starvation we managed to keep him in a decent mood with no loud crying. That was not just our luck but also the staffs’ luck because I would not be very nice to them if it wasn’t so. The IV nurse came back and put the drip back on.

15:00 – we were finally called in for the procedure a bit before three, I walked into the CT scan room, holding my baby wrapped in his blanket, where he had sleep meds put in the IV while in my arms. That’s when he was just taken from my arms and I was told that I now have half-an-hour to go to a café or something. I repeatedly said I want to be present, want to see the procedure. They told me I don’t need that radiation on me, I still insisted because I knew they could have let me stay at the adjacent room which has a window in it. The doctor just told me I have to trust them and sent me out of the room. I did not expect that, I was certain I could stay with my child and just be there for him. The way he was taken from me, instead of asking to hand him over, and how I was sent out, it was just unacceptable and I don’t understand how that can happen. I am his mother and I had all the rights in the world to be there with him. It’s not like it was surgery or something, I wouldn’t have disturbed anyone. If I can be ok while my 3 months old baby is cannulated and has needles poked in his head, I can easily handle a CT scan and an MRI. That all really got to me, like icing and a cherry on a cake, that sent me to tears. The nurse soon came down, as she was called by the scan person, saw that I had been crying, I explained why. She was sympathetic and sort of agreed, and told me it will be ok. She was finally nice to me. Then the scan doctor brought my son out, he was already waking up slightly and crying. And, surprise, surprise, instead of giving him to me, he gave him to the nurse. How are mother’s arms any worse than a nurses arms when it comes to taking and holding him? What an asshole! After we had walked around the corner, the nurse stopped and gave him to me, saying that no one is looking now.

Around 16:00 we were back at the room, he was still crying through the sleep with eyes shut. The drip was put back on again until late evening. He was not to be fed until he is fully awake but I still gave him a few sips of my breastmilk from the bottle, just to soothe him slightly and he could sleep better. Later he got fed properly when he woke up. He was quite grumpy all evening, as expected. At night, he woke up for a feeding every two hours.

On Saturday, all the badness was finally done with and we could pack our bags and go home. The CT scan for lungs had not shown anything bad. We still are waiting for the MRI scan results, although it has been over a week since. This all was not a good experience, quite stressful, especially the last day of torture.

Apart from all the badness that took place there, it was all worsened by the food there, which was not nice, to put it mildly. I was put on a non-dairy diet to see if that helps with spit-up and digestion for the baby. So I was served barely warm or cold foods that would be bad as it is, but were even worse because of being stripped of any milk. Imagine rice pudding without milk – it’s just mushy boiled rice. Any porridge was yucky. One of the meals was buckwheat with some weird sauce on top. I hate buckwheat so I didn’t even touch it. My partner said – not only is it buckwheat, but it also looks like a cat has thrown up on it! LOL! So I was mildly starved throughout the week. I did try to eat most of the foods, I can’t afford to not eat, I’m a breastfeeding mother after all. I only wonder – does the cook eats the food that she has cooked there too?

To top it all off, I got my period at the hospital. How very inconvenient and uncomfortable.

So, that’s my looooong rant about the delight that is a Latvian hospital. Will I ever learn to be concise and just tell the most important things, in bullet points, so to say. I will try to change, I promise. 🙂

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