Home from the Hospital

We just got home from a 2 night stay at the hospital. Grayson, being the sweet big brother that he is, waited until after his sister’s birthday party before getting sick. This illness came out of nowhere and really took us by surprise; it just once again shows the unpredictability that is life with a medically fragile child.

Tomorrow is Ryan’s birthday. Four years ago today I found out I was pregnant, and the next day surprised my husband with the news that he was going to be a dad. Four years later, I spent the day cuddling my precious baby boy in a hospital bed, trying to keep him calm as we waited to see if he would tolerate his feeds so we could go home. He’s been battling a virus and it’s been a really rough three days on him, and on all of us.

Saturday night, Grayson was restless and fussy. Ryan was up with him several times because he was vomiting, and I crawled in bed with him about 2:00 am, thinking I could sing and cuddle him back to sleep. Neither his favorite “mommy” songs nor his Veggies calmed him, so I knew something was up. I finally brought him into the living room about 5:30 and realized he was warm. We went back and forth whether or not to bring him in, but when his fever climbed to 102.6 and he had a seizure (his first since November) we loaded him up and made our way to the hospital.

Although the decision to admit him was made right away, we were in the ER about 8 hours waiting for a room. During that time Grayson had two more seizures, one requiring IV medication to stop. He was poked six times, including once where the nurse hit an artery instead of a vein. There was lots of blood everywhere- ugh. The nurses were having a really difficult time finding good veins for an IV and to draw labs, and since his feet are casted right now, that ruled out those for vein options. They finally were able to get an IV in his thumb.

He was started on heavy IV antibiotics, which I really struggle with. I know that if he did or ever does have a bacterial infection, antibiotics could literally save his life and prevent sepsis. However, they have to grow cultures for 48 hours to determine if it is bacterial, so giving him the antibiotics right from the start is always a “just in case” kind of thing. I hate, HATE pumping unnecessary stuff into my poor guy’s already fragile body, and actually had a conversation with Grayson’s immunologist about this a few months ago. From that conversation, I thought more individual consideration would be given this time since she said to have the ER call her, but I guess not. I did refuse to give him “just in case” Tamiflu, a decision I feel good about. It’s so hard to reconcile my intuition, my fears, and my trust in the medical team at the hospital, because a lot of times I feel pulled in a million directions.

By Sunday night it was obvious that Grayson’s little thumb just wasn’t going to support that IV for all they had to run through it (fluids and antibiotics) and the decision was made he needed a PICC line. The doctors and nurses all assumed that Grayson has had one before- nope. They were shocked. I guess it is pretty amazing that after all these hospitalizations and him being a “hard-stick” that he’s always been able to rely on regular IVs. Anyway, yesterday Grayson got the PICC line; it had to be inserted under anesthesia, so that was a whole long ordeal being taken down to radiology, putting him under, and waiting for him to wake up. Yesterday was a really long day. Thankfully, my sister in law came up to watch Grayson for a few hours and my friend who lives close to the hospital picked me up, bought me dinner, and let me use her shower. Life-saving, these people of mine.

Last night Grayson went to be red and feverish, but woke up back to his normal self. It always amazes me how Grayson can go from totally fine to seriously ill in the blink of an eye, but then can seemingly recover just as quickly. I learned this morning he tested positive for parainfluenza (which is not the flu) and that explains his fever. Today we spent cuddling in his hospital bed; this is the first stay they put him in a bed and not a crib, which was nice for me to be able to lay down with him. We slowly restarted his feeds which he had been off of since Sunday and waited to be released to go home.

Today was a “snow day” in our city, which really meant lots of freezing cold rain and a few snow flurries, so I guess being cooped up in a hospital room wasn’t the worst place to be. But I sure missed my Charlotte, who spent the last three days with her Grammie (in Heaven, I’m sure).

Grayson fell fast asleep as soon as we got in the car to go home and is still sleeping soundly in his bed now. Poor baby has been through so much, both in the last 3 days and the last 3 years. I told the PACU nurse that I don’t think I would be as forgiving as he is if I had to go through half of what he does.  I’m praying this was just another bump in the road and we can quickly get back to our normal- whatever that is.

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5 thoughts on “Home from the Hospital

  1. So relieved that this was a short stay for you guys and that he recovered so quickly! Just spent some time catching up on recent posts– Thank God for the amazing surgery! He looks so big in those pics!! And Charlotte's party was absolutely precious. Love you, friend!

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