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  • Writer's pictureheatherfrost

an unexpected stay

Over this past weekend Hiro started to increase in the amount of times he was projectile vomiting. Then on Sunday (4/24) he woke up and was really lethargic. The whole day he was not himself, he was super inconsolable too. We tried everything and I was worried that he was possibly dehydrated from all the vomiting. But by the evening nothing had changed with him so I called the doctor. He wasn’t running a fever but with all of his symptoms they said to bring him in and that they would like to admit him.

When we got to the hospital they drew labs and blood cultures, changed his dressing on his line and started him on fluids and antibiotics. He was dehydrated so the fluids started to help him. He still didn't have a fever but they swabbed his nose and it came back positive with enterovirus (which is like a common cold). With his immune system compromised the symptoms hit him a lot harder than the average six month old.

His labs showed that his magnesium is still dropping (they have been trying different meds over the past month to try to help stabilize him but it has been a struggle). His chemo meds could be the cause of magnesium dropping but it is important to get his levels up nonetheless.

He also has a super congested nose and the NG tube (the feeding tube) does not help the situation. They tried to help him with suctioning some of it out but his nose started bleeding so we had to pause on that. He really only wanted to sleep on me so I sat sitting up right so he could sleep (to try to help some of the mucus drain for him).

Monday he was still lethargic and was still increased in irritability.

No fever and the blood cultures had not shown any signs of infection still so that was good.

But his magnesium levels were dropping. So the doctors started him on some different meds to try to help him.

The GI specialist came to visit (we actually had an appointment with them that day but since we were admitted they came to us thankfully). We had been referred to them because of how much he has been vomiting. They started him on a new med to try to help him out.

He still was vomiting Monday and slept on me most of the day again but as the day progressed he started to get a little active which was good. He slept better in the crib overnight to (our arms appreciated the break).

Tuesday morning we woke up and he was starting to really seem like himself again - playful, smiley, “talking” to us. He vomited a few times in the morning but overall he was doing so much better.

His magnesium levels unfortunately were lower than what they were on Monday, so they hooked his IV up to some new meds. At this point the virus he has is not keeping us here, it is his magnesium levels being too low.

Then 4pm came…

He started vomiting and actually stopped breathing for a little moment. He was turning blue. I blew into his face (to help try to get him to gasp) which did work and we called the nurses. He vomited a lot during this.

He quickly started going down hill. He was really inconsolable again, lethargic, vomiting more and he was arching a lot - seeming like he was in pain or a lot of discomfort.

The nurses gave him basically everything we could, his nausea meds, Tylenol, gas drops, Benadryl…nothing seemed to help.

Shortly after shift change (around 7:30pm) I called our night nurse in and told her he is just really not doing well and nothing seems to be helping him. She began to check his vitals and unfortunately he had a fever. Not good. More blood cultures were drawn.

He also was breathing really fast and we noticed he was retracting - all not good signs. His heart rate was over 200 and he still was vomiting here and there.

All of this lead to them needing to call a rapid response. A rapid response is when basically all the pediatric doctors/residents/charge nurses all come to evaluate him and assess next steps. (We had this happen one other time when we first ended up in the hospital with everything back in march - not my favorite memory.)

They came in and decided an x-ray needed to be ran. They also gave him a couple of other meds to try to help with the fever and nausea.

They saw a little something in the x-ray but it didn't seem to be anything major and since he is scheduled for a CT scan today they will be able to see better if there is anything going on.

The meds kicked in thankfully. His fever has dropped and he is breathing faster still but definitely not as bad as before. He was also able to sleep through the night which we were so glad as his precious little body desperately needs rest.

This morning he has been pretty inconsolable. He was off of his feeds from 5-10am because he was supposed to be sedated for his CT scan today so that hasn't helped.

Unfortunately since he had a fever and went into rapid response last night they are not comfortable with sedating him. They are still going to try to do the scan by giving him the stronger nausea med that helped him sleep last night. Hopefully he will lie still enough to get good imaging.

He is currently sleeping in my arms again. It is hard to watch his little body work so hard to breathe. I can feel his ribs and visibly can see his every breath.

Every time he sleeps on me he puts his hand on my heart and grips my shirt or holds my hand. I hate all of this for him, it is beyond difficult to watch and the anxiety of knowing how quickly his symptoms can change is not something my meds are strong enough to calm.

But Jon and I will be here to hold him through every second of this.

Thank you for the continued love and prayers.

heather frost

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