Monday, May 23, 2011

Riley in 7 Hours: Advice Solicited

A few of you have tentatively offered advice. Please know that all advice is solicited! We will not be offended in the least by what you might fear is "interference." And I've got one question in particular I'd like your advice on (in fact, you can vote in the above poll--that's not to say that I'll go with the most popular option--but I am curious to know if there is an overwhelming majority for one answer or the other):

Should I stay in the room with Sam when they're putting in the nasal cannula (it doesn't hurt, it's just a strange feeling), or should I leave? Initially I thought I should stay, but after talking with a respiration therapist I'm not so sure. I called her the other day and asked if there was anything that could make the nasal cannula easier for a 3-year-old. She said "No," and went on to explain that I would need to decide whether or not I wanted to be in the room during that moment.

Originally I assumed I would stay, but now I'm not so sure. She said it can be confusing for a kid to see his parent standing there not coming to his rescue when he's crying. She said sometimes it's easier for the parent to be out of the room and come in immediately afterwards in order to comfort the child without looking like the parent was in cahoots with the doctors.

I think I'm still leaning towards staying--mostly because Sam is a Mama's Boy and I imagine he'll be even more panic-stricken if I leave. But I thought I would post the question to you readers in case you have any advice. So, any advice?

I also wanted to let you know that we discovered the sleep medicine Sam had recently started was not agreeing well with him. I've dubbed it Sam's "crazy medicine". The few times he took it he was wide-eyed, swatting at things and mumbling three hours after ingestion. We stopped the medicine two nights ago and are back to "normal" (normal meaning multiple wake ups, occasional night terrors, but no craziness).

We've got seven hours before we leave for Riley. This sleep study is taking place at a different Riley hospital--not the one we went to originally. This one is a bit closer to our home and will look different (different room and staff) from the first one we went to. I thought this would be helpful for both mother and son. My sister is watching Clara so John can come with us and drive us home in the morning (please, Lord, let it be the morning and not the middle of the night again). I hired a babysitter this morning so I could sleep in until 10 am in preparation of being awake for most of the study (someone needs to keep vigil to keep him from thrashing in his sleep and pulling out wires).

Sam has been hinting that a bald eagle would be nice for tonight's hospital stay. Little does he know I purchased one last week when I remembered him laughing at himself in the mirror with all the wires while announcing, "I look like a bald eagle!" He didn't, by the way, but whatever makes him happy.

We've had enough bad nights at home in order to have the resolve that we will do whatever we need to do to make this study work. One bad night at the hospital is worth the hope of a multitude of good nights at home for both our sake and Sam's sake.

Please pray for our little boy this evening.


Gluten Free Jesus Freak said...

We'll be praying, Mandy!

Sarah Sanderson said...

praying for you and Sam!

Steve said...

I was holding my daughter (2) when they had to reset her broken arm. A horrible ordeal but I wouldn't want them to do it without me helping her. Good luck whatever you choose.

Elizabeth Glass-Turner said...

You know, every parent is so different, and while it sounds like you're asking about your son - what would be best for him - I feel like you're also kind of really asking about parenting, and parenting techniques during medical procedures.

Just rest assured that twenty years from now, your sweet baby will know you love him, whether you're in the room or not for the insertion.

Kids interact differently with different parents, too: can you split the difference and have John in there, so that he's not left with a stranger, while also not fueling a highly emotionally charged environment by having mommy just out of reach but in sight?

I know he's still a little guy, but I wonder if letting him record his experience would help him feel more in control - or if it would be a disaster ;) He could even take a photo of Senor Eagle with the device up its...beak?

jenny said...

Mandy, I just can't resist the solicitation for advice, so here it goes: Based on the trauma last time and the advice you had from the therapist, I think I might lean toward leaving (a hard, hard step for mommy!)and then coming back in as the comforter. I like what she had to say about it being confusing for the kid and, I imagine she has seen this play out many times. So often, our kids will behave differently for others when they don't know what to expect from them. Sam KNOWS you would stand in front of a train for him and he'll use that to his advantage. These small ones come with built-in, highly effective manipulation tools and can smell your vulnerability a mile away! :) Your ultimate goal is to get answers to help Sam. That's a fact. The emotional side of things will trick you into thinking that the short-term comfort you may or may not be able to offer him during that one procedure instead of immediately after may temporarily break some hearts, but more likely get you to your end goal. You are a good mom regardless!! I'll be praying for Sam and YOU! Love, Jenny

Jodi Poynter said...

Since last time was tramatic for both of you, I vote for having John in or both out and coming in for comfort. Praying for you. You are a great Mom (who had a wonderful example) and I know you will do the best. So glad you prepared ahead with sitters and have tons of prayer support. Hugs from me.

Amanda said...

We have had many sleepless nights as well with our son...not the same situation, but I can relate. You feel so helpless and so weary! Praying for answers and for your family!

Kelly said...

You don't really know me. I just stumbled on your blog a couple of years ago through a trail of mutual acquaintences. You know...the never ending "Wesleyan Chain".
Anyways...I just want you to know that you're heavy on my heart and mind today. I'm praying for you hard. I just really believe tonight is going to go so much better...for you and for Sam. know the post you wrote about living in the present, and not going into debt with tomorrow's concerns? God totally spoke to my heart through that post. So...thanks, friend. :)
May He richly supply your every need tonight!

Sherry White said...

There was a time when Zach was 5 or 6 when a doctor prescribed a medicine that caused profound personality changes in him, and which I immediately took him off. So you did the right thing: I always say "They might be doctors, but God made YOU his mother, and you know him better than they do." As for the nasal cannula, I'd probably err on the side of being with him, too, particularly because he's young enough that you can't "rationally" discuss this with him. He can't abstract. Looking at it from the other side, having you there might reassure him that the doctors are NOT going to do anything unless you allow it, so it could actually be less traumatic. I've been in the room every time Jonathan's had an injection since his birth (REALLY strong aversion to injections), up to and including for his trip to S. Africa while he was in college. The comfort of familiarity is a good thing. Praying already for this to be in the past.

traci said...

hi mandy. praying this goes well. i lean toward your leaving and coming in later, too. i think that point about not being in cahoots is a good one. you could come right in and comfort... whatever you decide, though, will be the right thing. you are such a great mama! xoxo traci smith

Anonymous said...

You don't know me either, my daughter Traci sent me a link with your question. I will post my 2cents too. When my son broke his arm at age 6, I put on my " I am staying thanks so much hat."The doctor told me he would not do it while I was in the room. He assured me he understood how I felt, but I needed to trust him. He said, " This is not the first arm I have set, I promise you it will be better for all of us. I will send for you right away. " " You really can't stay." So I left. I braced myself for the screams or tears and before I knew it the doctor was saying, " All done." My vote is to leave but stay close. Good Luck.