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Ronan and family
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Ronan and family
What a week it has been around here. Tonight I’m writing from the hospital room. I am wide awake at 12:19 AM with nowhere to go and little to occupy my busy brain except worries and reflection.
I think Ronan’s most recent temperature spike (to 103.4!) has finally passed and for that I’m very grateful. He seems to be sleeping more peacefully, and his skin is less scorching to the touch. I’m so thankful we stayed tonight and that the doctor we saw today had the foresight to keep us despite counts technically being okay. I’d have been a nervous wreck at home with these high temps and how miserable he felt and was looking before bed. We would have been stressing about every ounce he was drinking and if we’d need to come back. Now at least we know we’re in the right place for whatever he needs. This hit him fast and hard today.
He has really developed a knowing of his own body. He generally can tell when he is beginning to feel poorly, usually hours before he actually spikes a temp. He felt crummy the last little bit of school this afternoon, but had a normal temp there. By the time we got home, it had spiked past the point of questioning a trip up here. By the time we made it up here, he was feeling truly awful. Being able to come through the peds oncology clinic we go to for appointments instead of the ER made everything so much better though. Ronan feels safe there and the staff is so amazing with his port access. It was so much faster to get all the info we needed and we got to see one of the amazing docs we know. Our nurse tonight is great so we are thankful for a lot as far as all that goes.
That being said…jarring is a word that was offered by a friend today and it’s exactly the one I’d use for an admission like this. Maintenance is so strange that way. We were supposed to be at the beginning of the longest stretch we have had since diagnosis without an in-person appointment. Our next two appointments are going to be virtual with just local labs ahead of time. Then we have one more scheduled appointment/chemo infusion in August, before potentially getting his port removed because we’d be only one month out from his end of treatment!
Yet here we are, admitted, less than 2 weeks after his last appointment here. Best laid plans. This is the expected unexpected that we live in a perpetual state of, and why it’s so hard not to stay in fight or flight.
Yesterday was also a day. Jack was scheduled to get a second set of ear tubes in and have his adenoids taken out. He started having a bit of a croupy sounding cough in the middle of the night before but it was a little late for calling so we went in, knowing they may cancel it.
After examining him, the anesthesiologist had a little bit of reservation since adenoid removal requires intubation which could exacerbate any upper airway inflammation. I asked about the potential for just doing the tubes which didn’t require intubation because poor Jack has had 3 back to back ear infections in the last couple of months. After a discussion with him and the surgeon, they said yes to the tubes, maybe to the adenoids depending on safety and how things seemed, and I signed a consent for use of an LMA, which is a less difficult to place airway than an ET tube that stays higher in the airway and typically causes less irritation. All this to say, I felt good about their plan but was slightly on edge as it wasn’t a textbook normal situation. I was told it would take about 30-40 minutes.
This surgery was happening at a local surgery center. It the same place Jack had his first set of ear tubes placed. They see lots and lots of children there for these procedures. However, it is no Doernbecher. They took me to a recovery room and said the doc would talk to me there as soon as things were complete, and that Jack would be brought out when he started to wake. I was the only person in this “PACU” style area. And I mean, I could have been the only one in the clinic for all I could see or hear. There was nobody to be found in there after one set of parents and a recovering toddler left when I first arrived. Crickets.
55 minutes after they walked Jack away from me passed. Nothing. Nobody. And I had a bit of a meltdown. Near panic attack level meltdown. The totally sane, rational brain I know I have took a hike. Panicked mom who has experienced a great deal of medical trauma took the wheel. Bryce was on the phone trying to help me through it while I waited for literally anyone to appear and tell me Jack was okay. A poor unsuspecting staff member found me crying and pacing and with what I can only assume was a ‘holy cow what is wrong with you but I am kind so I won’t say that’ face said, “Oh, has the doctor not come out yet?” Your son is fine. He is still asleep. The surgeon will be out in just a moment.”
Jack was fine. He was eating a popsicle and hugging me tight fine. And I’m sure they all thought I was a little crazy. Maybe I am at this point. But I digress. Did I mention it’s been a week?
So, Ronan and I are here. Bryce and Jack are home and I feel awful that I’m not there for Jack. He is still feeling a little tender from the whole experience, and has a little sore throat from his procedure and hates the ear drops he has to do. But Bryce took him to see his Lego creation displayed at the library, and to froyo BEFORE dinner and they had movie night, complete with extra snuggles. Tomorrow, they’ll come visit up here and if we have to be here another night, Bryce and I will probably switch places. I did request a room at RMH but it’s pretty unlikely to happen with no notice.
I can be here with Ronan, and I am trying not to excessively worry. He felt so bad earlier he didn’t want to get up to see the life light helicopter land, even though an hour before he’d been excited about our room assignment because of just that. We’ve come so far in treatment and have never had a crazy infection, something I know happens to SO many patients. I’m really hoping that’s not it. I’m hoping it’s the viral crud I had on Monday, or maybe what caused Jack’s barky cough. Ronan is my fever kid so maybe it’s just presenting that way for him. Fingers crossed for that and for a clear blood culture, and a kiddo who is feeling much better tomorrow or at least by Monday!
Ronan auditioned for his end of the year performance, for the part of the narrator. And he got it! It was split between a few different kids but he was SO excited to be among them. Tuesday is when they perform the show for the kindergarteners and he so badly wants to be there. It may seem like a small thing but for a kid who has had to miss out on SO much these last couple of years, it is not a small thing. So if you read these updates and follow his story, please cross your fingers and toes or wing up a prayer that this isn’t too serious, that he feels better, and that he can be at school on Tuesday. 🩷
Bryce is in the last stretch of school before summer break and we are all ready for all of the boys to be off. We have hopefully made lots of plans for summer and are hoping not have to break any of them. We’re almost 2 years into this with a few months of active treatment to go. This road has been a long one and we’re ready to get off it it. We’ve also got family members with surgeries coming up so we need all the good juju we can get!
*photo from fun and recent silliness
I think Ronan’s most recent temperature spike (to 103.4!) has finally passed and for that I’m very grateful. He seems to be sleeping more peacefully, and his skin is less scorching to the touch. I’m so thankful we stayed tonight and that the doctor we saw today had the foresight to keep us despite counts technically being okay. I’d have been a nervous wreck at home with these high temps and how miserable he felt and was looking before bed. We would have been stressing about every ounce he was drinking and if we’d need to come back. Now at least we know we’re in the right place for whatever he needs. This hit him fast and hard today.
He has really developed a knowing of his own body. He generally can tell when he is beginning to feel poorly, usually hours before he actually spikes a temp. He felt crummy the last little bit of school this afternoon, but had a normal temp there. By the time we got home, it had spiked past the point of questioning a trip up here. By the time we made it up here, he was feeling truly awful. Being able to come through the peds oncology clinic we go to for appointments instead of the ER made everything so much better though. Ronan feels safe there and the staff is so amazing with his port access. It was so much faster to get all the info we needed and we got to see one of the amazing docs we know. Our nurse tonight is great so we are thankful for a lot as far as all that goes.
That being said…jarring is a word that was offered by a friend today and it’s exactly the one I’d use for an admission like this. Maintenance is so strange that way. We were supposed to be at the beginning of the longest stretch we have had since diagnosis without an in-person appointment. Our next two appointments are going to be virtual with just local labs ahead of time. Then we have one more scheduled appointment/chemo infusion in August, before potentially getting his port removed because we’d be only one month out from his end of treatment!
Yet here we are, admitted, less than 2 weeks after his last appointment here. Best laid plans. This is the expected unexpected that we live in a perpetual state of, and why it’s so hard not to stay in fight or flight.
Yesterday was also a day. Jack was scheduled to get a second set of ear tubes in and have his adenoids taken out. He started having a bit of a croupy sounding cough in the middle of the night before but it was a little late for calling so we went in, knowing they may cancel it.
After examining him, the anesthesiologist had a little bit of reservation since adenoid removal requires intubation which could exacerbate any upper airway inflammation. I asked about the potential for just doing the tubes which didn’t require intubation because poor Jack has had 3 back to back ear infections in the last couple of months. After a discussion with him and the surgeon, they said yes to the tubes, maybe to the adenoids depending on safety and how things seemed, and I signed a consent for use of an LMA, which is a less difficult to place airway than an ET tube that stays higher in the airway and typically causes less irritation. All this to say, I felt good about their plan but was slightly on edge as it wasn’t a textbook normal situation. I was told it would take about 30-40 minutes.
This surgery was happening at a local surgery center. It the same place Jack had his first set of ear tubes placed. They see lots and lots of children there for these procedures. However, it is no Doernbecher. They took me to a recovery room and said the doc would talk to me there as soon as things were complete, and that Jack would be brought out when he started to wake. I was the only person in this “PACU” style area. And I mean, I could have been the only one in the clinic for all I could see or hear. There was nobody to be found in there after one set of parents and a recovering toddler left when I first arrived. Crickets.
55 minutes after they walked Jack away from me passed. Nothing. Nobody. And I had a bit of a meltdown. Near panic attack level meltdown. The totally sane, rational brain I know I have took a hike. Panicked mom who has experienced a great deal of medical trauma took the wheel. Bryce was on the phone trying to help me through it while I waited for literally anyone to appear and tell me Jack was okay. A poor unsuspecting staff member found me crying and pacing and with what I can only assume was a ‘holy cow what is wrong with you but I am kind so I won’t say that’ face said, “Oh, has the doctor not come out yet?” Your son is fine. He is still asleep. The surgeon will be out in just a moment.”
Jack was fine. He was eating a popsicle and hugging me tight fine. And I’m sure they all thought I was a little crazy. Maybe I am at this point. But I digress. Did I mention it’s been a week?
So, Ronan and I are here. Bryce and Jack are home and I feel awful that I’m not there for Jack. He is still feeling a little tender from the whole experience, and has a little sore throat from his procedure and hates the ear drops he has to do. But Bryce took him to see his Lego creation displayed at the library, and to froyo BEFORE dinner and they had movie night, complete with extra snuggles. Tomorrow, they’ll come visit up here and if we have to be here another night, Bryce and I will probably switch places. I did request a room at RMH but it’s pretty unlikely to happen with no notice.
I can be here with Ronan, and I am trying not to excessively worry. He felt so bad earlier he didn’t want to get up to see the life light helicopter land, even though an hour before he’d been excited about our room assignment because of just that. We’ve come so far in treatment and have never had a crazy infection, something I know happens to SO many patients. I’m really hoping that’s not it. I’m hoping it’s the viral crud I had on Monday, or maybe what caused Jack’s barky cough. Ronan is my fever kid so maybe it’s just presenting that way for him. Fingers crossed for that and for a clear blood culture, and a kiddo who is feeling much better tomorrow or at least by Monday!
Ronan auditioned for his end of the year performance, for the part of the narrator. And he got it! It was split between a few different kids but he was SO excited to be among them. Tuesday is when they perform the show for the kindergarteners and he so badly wants to be there. It may seem like a small thing but for a kid who has had to miss out on SO much these last couple of years, it is not a small thing. So if you read these updates and follow his story, please cross your fingers and toes or wing up a prayer that this isn’t too serious, that he feels better, and that he can be at school on Tuesday. 🩷
Bryce is in the last stretch of school before summer break and we are all ready for all of the boys to be off. We have hopefully made lots of plans for summer and are hoping not have to break any of them. We’re almost 2 years into this with a few months of active treatment to go. This road has been a long one and we’re ready to get off it it. We’ve also got family members with surgeries coming up so we need all the good juju we can get!
*photo from fun and recent silliness
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Mary Ann Bushard about 2 months ago