So in my last post on October 28th I had updated through our time in the PICU and I haven’t posted since – it’s been a long few days and that is putting it mildly. On Sunday late afternoon it was decided Hannah could be moved to a regular room and so we were moved out of PICU to the regular floor, in hindsight it might have been better had we stayed in the PICU as she had more individual care down there. She still had her epidural in which while it wasn’t giving complete pain relief it was working to take the worse of the edge off, so in that we were thankful.
Monday morning brought the anesthesiologist in and he decided it was time for the epidural to come out and he pulled it soon after that. This is when things started to go downhill. She was being given Tylenol by mouth, Zofran in the IV for nausea, an acid reflux med (the nurse asked if she had reflux at home and I said no, I too was wondering about this med. – that was discontinued), and Norco. Well Monday night was BAD! I mean BAD – it seems night was usually the worse time for her in regards to pain. She was up and down all night in between pain med doses screaming and yelling. She was having severe pain in shoulders still but everyone kept writing it off as pain due to the position she was in during surgery. Chest x-ray shows that there is still some fluid in the chest cavity so the tube stays in and since she’s not up and walking the foley does as well.
That brings us to Tuesday…..after a long night and little sleep they do yet another chest x-ray which still shows some fluid which was better than Saturday but worse than Monday. The surgeon for the chest tube says it stays in. Her ortho dr wants it out. I tell them mom wants it in at least one more day. It stays in. They also begin giving Miralax, which is not a good idea for a child who is still restricted to a bed pan (I had to ask several times for a fractured one as they were making her use a regular one – there is a HUGE difference in these types of bedpans). Tuesday evening began more screaming and yelling – I asked different residents for more meds they refused, I called on the nurses who said they’d pass along my concerns – eventually I made the judgement call of leaving her room door open.
This was not a good thing – as she was yelling, really yelling. If you know Hannah she has a high pain tolerance and even when she had a 2nd degree burn on her finger one time resulted in a few tears and “it hurts” but no screaming or yelling. So I left our room door open – I had a nurse tell me they needed to shut it as it was disturbing the other patients (keep in mind we’ve had to listen to our ‘neighbors’ party next door till 11p.m. and our new ‘neighbors’ were always fighting with each other) I kindly told the nurse, “no that door stays open when the resident or doctor gives my daughter more meds to control her pain.” within 15 minutes we had orders for Dilaudid through the IV. I closed the door. We got a fairly good night that night as she could have the Dilaudid every 4 and the Norco every 4 so we were piggy backing them to keep on top of her pain.
Wednesday arrives and another chest x-ray shows the fluid is all gone! Chest tube comes out later as does the foley. The right side where the tube was in is still quite sore, as to be expected and her shoulders are still really bad and now she has tingling in her fingers – doctors are still saying it’s post-surgical pain. I’m thinking it’s a nerve. Regardless, we have a decent day and not much happened.
Thursday – can we go home yet? I’m ready she isn’t. She still isn’t up yet so the doctor finally gets PT in our room and they help us get into her brace and at least standing. (Found out on Monday 11/4 that she’d been wearing the brace completely wrong!) It was a long day and we had some visitors – two wonderful Sisters came and prayed over Hannah – and helped with her pain in between doses. I had a friend bring us lunch. Of course my hubby and other two children were visiting us daily and my hubby was keeping me supplied in clean clothing – a plus if you’re staying long in the hospital. Thursday evening they began to wean her off the narcotics as she can’t go home on them – it was another bad night.
Friday another chest x-ray (the tech was so rough with her!) she is up and down quite a bit – in the wheelchair and walking to the restroom – we even made a trip to the cafeteria and I was told later that was a no-no but it seems there was a lot we failed to be told 😦 She is allotted a couple more doses of Dilaudid and Norco so we space them out through the day and into the night. Also had several other friends stop by and we ordered pizza in that night in the hopes of getting her to eat more – she ate but I don’t recommend greasy pizza in the hospital even if you have it delivered. Enough said. We sleep, or try to and then comes Saturday…..
she has her last allowed dose of Dilaudid and Norco and the IV is taken out – so she is no longer hooked to any poles or solutions. Her doctor comes in and says he’ll let her go – there is just a little bit of air showing in the chest x-ray so as long as continues to use her spirometer at home that will resolve. By 10 a.m. we are ready to go home – oh what a feeling – of course now we have to get her in the vehicle and get home and get to healing. She spent most of her first day at home sleeping and I began alternating Tylenol and Motrin which isn’t doing much for her pain but it’s all I can do until Monday since the doctor isn’t in on the weekend and so we wait.
Monday comes and I get us in to the OrPro clinic who deals in braces and orthotic devices and that is when we find out that she’s been wearing the brace all wrong – they help correct us and now it works better and fits better. The doctor’s nurse also calls back and wants us to bring her in on Tuesday afternoon, so we do that and they do yet another chest x-ray (I’m concerned about the amount of radiation she’s been exposed to) which is good. The doctor does agree to give us Tylenol #3 (remember they send nothing home, although did give Zofran and that is a long story in and of itself) and he is a little concerned as she is still so pale but her iron is good.
So now we wait, we go back for her official post- op appointment on the 20th and by then all her steri-strips should be off and hopefully her pain will be better but praying for gone. We’ve had some great friends who have signed up to bring us meals as we get settled into our new normal and I hope to re-start school next Monday (even though it’s a ‘holiday’). I’ve also seen where some think we should be back to normal since we’re home but as before some don’t realize the extent of this surgery or it’s recovery period – she’ll be in the brace all the time except for bathing for 4 to 6 months and even then there will be activities she can’t do until next October as fusions can take up to a year to fully fuse. Well, now that I’ve written a book – I’ll let you go and I’ll go get my day started. Thank you for reading and God bless.
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