Another day another hospital

We're back in the hospital again... Closer to home, but the hospital is the hospital is the hospital...And, we've just about had enough of those lately.

Little Peeper does not want to eat. He's getting better now, but all in all he's more or less refused to nurse since Thursday unless he gets medication first and, at all other times that's his favorite thing to do.

I mentioned in my last post that he wasn't any to keen on food during the train ride home from Stockholm, but I thought that some of that could be attributed to the long trip and, all the distractions around us on the noisy train. He would however only nurse once during the night between Thursday and Friday and, at the time that was the first he had eaten since around 9 AM that same morning, before we left the hospital in Stockholm.

In the beginning he would take a few swallows here and there when I offered him the nipple, but towards the end he just turned his head away as soon as I started to unbutton my shirt. We did manage to drip a little bit of water in his mouth with his bottle, but he didn't want any too much of that either.

We need to change his diaper at least every 3 hours during the chemo treatment and, for the next 3 days afterwards to protect him from the chemo drugs, as they are present in all his body fluids during that time. So when I noticed at 5 this morning that for the second time around his diaper wasn't even remotely wet, which meant that I changed the last one that had anything in it on the train around 10 PM or so, we of course went straight to the ER. This would be alarming for a little baby under any circumstances, but the chemo therapy makes him even more prone to dehydration than usual, so it was very worrisome there for a while. God how I hate this Retinoblastoma!

He did however have a wet diaper as soon as we got there, so at least they didn't have to hook him up to an IV right away like I thought they would.

At first they just wanted to keep him here in the hospital for observation, during the day but that has turned into 5 days and counting.

The first doctor we met thought that he was constipated. She wanted to give him an enema, but wasn't sure if she could do so, since the chemo
drugs makes him bleed very easily and, we're not even allowed to use a Rectal thermometer to take his temperature.

She got off before she got the chance to do anything at all really and, the next doctor, who we new from little Peeper's time in the NICU, thought that he was probably suffering from nausea due to the chemo and, wanted to keep him here to see if he would need a little extra support with an IV and, perhaps a tube. He mentioned that one should be careful when putting a tube in, just in case he was refusing foods because of constipation. On the other hand it wasn't that strange that he wasn't going to the bathrom when he wasn't eating, so in his opinion it shouldn't be a problem to do so.

When we got to the pediatric ward, a third doctor seemed to share his opinion, but apparently the nurses objected to the tube for some reason.

They came in here with all kinds of theories:

He could be teething, his throat could be sore, or he could be constipated. He could not however, be nauseas due to the chemo therapy, since he had not been throwing up...

We all know that right? We absolutely have to vomit every time we feel nauseous...

The most outrageous theory they presented was however that he could simply have decided that he was too old to nurse...

As if he would just quit nursing when it's impossible to get him to take a bottle and, he only eats solids if he's extremely hungry. Would a baby really refuse his only supply of food because he thought he was too old to nurse? Talk about grasping at straws to be able to convey your own opinions and values!

Well I'm sorry, but I'm not going to apologize for breastfeeding my 7-month-old just because somebody else thinks one should quit at 3 months...

I've never been more determined to keep breastfeeding than I am now. What ever antibodies he can get through the milk will make a difference to him when the chemo makes him susceptible to all viruses and infections that happens to come our way.

More over, He'll need all the closeness and safety he can get.
Not that you can't have that when you're bottle feeding. It's of course possible to hold your baby every time you feed him or her with a bottle as well. It's just that most people don't...Not at this age when they're old enough and often want to, hold the bottle themselves.

Either way it'll be a while before there will be a good time to try to wean him off of it and, quite frankly, as long as it helps him, I don't care if he's still nursing when he's 3 years old.

I seriously don't understand why the doctor wouldn't just put his foot down. He said that they would need to put the tube in around 1 pm, but just to please the nurses, little Peeper had to go without food and water until 8 o,clock, when they finally excepted that he wasn't going to eat neither hot cereal, mashed fruit nor formula. Something they thought he would do if he only got hungry enough... This even though his diaper at 4:30 was completely dry

The same logic does of course apply here, when there's nothing coming in, there's nothing going out, but who knows what this will do to him considering that the chemo drugs weren't being flushed out of his system the way they were suppose to.

I argued and, argued, but to no avail...

We didn't see that team of nurses again during our stay and, I think they should be grateful that we didn't, cause when we finally got them to accept that he needed medication against nausea he started eating again just fine. Believe it or not, but that took almost another 24 hours...

They finally put a tube in that night, but Peeper totally lost it when I started to give him food. I have never heard him scream like that and, he was gagging every time I pushed in a few more ml through the tube. I later thought that the syringe containing the food felt awfully hot and, I wonder if they had gotten the milk too warm, but I'll never know.

After 30 ml I gave up, cause he just would not calm down. The nurses just shrugged and said that they were use to babies getting angry, but with a baby who hardly said a peep during the whole ordeal with surgery and chemo treatment, I had no doubt in my mind that something was awfully wrong and, I again tried to tell them that he was nauseous, but got the same answer "but he's not vomiting, so he can't be..." This time however I made them call the doctor again.

At times I thought he was constipated, cause he was screaming in the same way that he did when we were here for the suspected block in his bowels, but on the other hand the nausea could be enough to make him cry like that as well.

A 4th doctor now came to see us, but I trust this one, he was the one who noticed that little Peeper's blood count was low when we went to the ER and, then went out of his way to make sure that everything was done to get him the best help possible.

He even contacted Stockholm to make sure that they had his results in case that would alter something with the upcomming chemo therapy, which it actually did, cause they had blood ordered ahead of time for the surgery, so they were prepared when his red blood cell count dropped to 71 during the procedure. It's possible that they would have been prepared anyway, but I'm sure that the extra warning didn't hurt.

Anyway, he didn't really have any answers either, but he said that peeper's throat looked as if it was very sore and, he had blisters in his mouth, another side effect from the chemo,but he didn't think that should be enough to keep him from eating for this long, since there's no swelling or anything like that...

To rule out constipation, he ensured that he was given an enema, cause even though one's not suppose to give that during chemo treatment he said that it was safe as long as peeper's blood count was still normal.

Our little one seemed to be feeling a little bit better after that and, he even ate a little bit, though it wasn't more than like a third of what he usually devours.

During the night he managed, true to his old habits from the NICU, to pull the tube out...

The next morning, he had lost 200 grams and, he didn't have any wet diapers, but the same team of nurses from the afternoon before was back and, the, now fifth doctor, thought we could wait to put a new tube in, cause "the baby would probably eat when he got really hungry...."As if we hadn't tried that already... Shouldn't he be hungry enough as it was? He had barely had anything to eat since Thursday morning for heavens sakes!!!

I don't give much for that docter in any case, cause he prescribed a pain medication for peeper that he is not allowed to combine with the chemo therapy drugs; some doctor eh?

I've gotta say that I'm surprised at the ignorance among a lot of these people. I realise that they can't all be oncology experts, but if I hadn't known the simplest things such as that they're not allowed to use a rectal thermometer, neither to take his temperature nor to remedy constipation, God only knows what would have happened.

Same goes for fever. He's not allowed to get a temperature higher than 38 degrees C, cause one of the things we must look out for is bacteria in the blood due to the etoposide he's been given, but they calmly stated that anything less than 38,5 was not considered a fever at the pediatric ward, as it's always manageable up until that point...

The new team of nurses came on around 3 pm and, . By that time I made a point of showing every single one of his diapers to a nurse to make sure that they didn't think I was making it all up.

One of them is on the oncology team for children, so she finally made sure that something was done, though we had to wait for another doctor to come on her shift since the one from that morning apparently wouldn't change his opinion.

It was the doctor who first saw us when we came into the ER who was on call for the night and, she immediately started making phone calls to the pediatric oncology ward in Lund to look up side effects of the chemo drugs little Peeper had been given. She then quickly prescribed medication against nausea and, about an hour later he was eating again. She also made sure that he would get extra food through the tube to make up for all he had lost during the time without food and, liquids the next morning his weight was back up again.

We were ready to go home Monday, but they were out of the medication he needs at the pharmacy and, they won't get a new delivery until Wednesday. At the same time they have apparently run out at all the wards here in the hospital as well, so the only alternative is to keep giving it to him intravenously. So by the looks of things, we will celebrate Peeper's 8-month birthday by going home from the hospital.