4th Trip to the Hospital

Dear Family and Friends, 

I am happy to report that Lucas' hospital stays are definitely getting less often and less severe.

On July 22nd, 2024 I took Lucas in because he had spit up a bottle of formula I gave him (which was out of the norm because I've been feeding him breast milk, but my supply was low that day). Spitting up is definitely not uncommon in babies, but was out of the ordinary for him and because of his conditions his pediatrician's office suggested we have someone "lay eyes" on him. He didn't just spit up, he was looking a little lathargic and wasn't eating even some breast milk so the formula must have upset his stomach.

We thought this would be a simple check up so we just went to the Multicare Hospital ER very close to our house, but they were worried about a few things with him and ended up calling Children's hospital anyway (so I should have just gone to Children's). They also tried to take blood because the wanted to get labs, and possibly put in an IV if he didn't eat soon and got dehydrated, but the nurses at the hospital couldn't get a vein (after 3 pokes) because they are small, so they got some xrays of his chest and abdomen and then I decided to take him up to Children's.

So, I got to the ER at by my house at 9pm

We left to go to Children's around 2am (by the time I left Lucas was eating small amounts of breast milk when we would wake up and was beginning to keep it down)

Got to Children's and got into a room by 3am

Got home at 6:30am, luckily we didn't need to get admitted

I was even more grateful that we went to children's because I had the take another look at the xrays that Multicare got. The doctor at multicare told me that the xrays looked fine. But the doctors at children's looked at them and said his lungs looked inflamed. They didn't say how much, but said that they'd like to do a nasal swab to test for viruses, but it came back negative.

Two things I have been told to look out for with Down Syndrome is GI issues (which were cleared this time with the abdominal xray - no blockages) and signs of aspiration (liquid getting in his lungs when he swallows, even the smallest amount could be problematic). So if his lungs are inflammed, then he could be aspirating. I didn't get an answer that night, but we did get discharged and the inflammation would go away on it's own, but I was told to follow up with Lucas' pediatrician and I actually have an appointment with his pulmonologist coming up in early August so I can check in with the and have them take a closer look at his swallow and his lungs.

Good news, Lucas pulled out his feeding tube on 6/26 and I've kept it out because he was feeding by bottle and breast pretty well. So by the time we came to the hospital this time, he had been feeding by mouth for about 3 and a half weeks. The first couple weeks were going really well, but then my milk supply must have come in stronger with him nursing more and I noticed that some times when he would breast feed, he would choke or cough a bit and I wonder if he was aspirating a bit when that happened. So after this ER visit I definitely have been pumping and giving him a bottle of my breast milk and if I do breast feed, make sure I pump for a few minutes so that the initial force of the let down is taken away and he can more comfortably nurse.

Looking forward to his appointment on Aug 5th with the pulmonologist and hopefully get some answers regarding whether the inflammation is an issue or a reflection of something of more concern.

Other than that, I would say that Lucas is doing so well and even starting to really smile and seems to interacting with us more which is so sweet. :)