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Kitty
11-19-2008, 09:13 PM
Hi All,
I'm home for a rest and wish to thank everyone for their posts and prayers. I certainly appreciate it. It has been exhausting and at times frightening.

As Del accurately pointed out, Tahlia had a posterior fusion only, from T2 to L3, with a couple of ribs removed as well. She lost a lot of blood during surgery (approx. 1 litre I believe) and had to be given a lot of blood products. From what I understand, this is most likely due to a Factor 12 (clotting) deficiency, which, as those of you who have been following my posts would know, the haemotologist we saw and who did many tests, said it was OK and would not be an issue!!! So much for that!!

Anyway, Tahlia spent the first night in ICU hooked up to the ventilator which came out after about 4ish hours, although was meant to come out earlier, except the doctor was nowhere to be seen. Tahlia was coming too and starting to gag on the tube and OMG, i have never felt so helpless in my life, not being able to soothe her and trying to stop her from yanking it out herself. What a horrible experience it must have been for her, but unfortunately the ICU nurses cannot approve extubation until the Dr. gives the OK.

Next day, she was progressing well and they were discussing moving her to HDA when they did a chest x-ray and found her left lung had collapsed. The physio felt they could just put her on her side and do the breathing exercises to re-inflate the lung but when this didn't work they did a brochiostomy and found fluid and secretions in and around her lung. They ended up draining about 750ml of blood from her lung yesterday afternoon and was put on CPAP to assist with her breathing. She stayed another night in ICU (damn that haemotologist).

Anyway, breathing getting better and signs all good, Tahlia was finally transferred to HDA this morning. She is in pain but using the PCA and is still being fasted but doctors have just said this morning she can start taking sips and if bowel noises are OK she can start with food. When I left this morning, the docs were a little concerned that her chest tube did not appear to be draining (they did the cough and deep breath test!!) and wondered if it might be blocked, but they are going to do a chest x-ray first and see how it goes.

I am exhausted and sleep-deprived and i must say there were moments when i was very very scared for her and really don't know how to describe how I feel at themoment. There were many times when I thought I wish I hadn't put her through this, because ICU and HDA are awful places to be and it is so harrowing as a parent to watch your child go through this. So many tubes and monitors and catheters, etc. etc. They are saying she can sit up tomorrow and possibly go to the wards, all being well. I amnot yet allowing myself to feel relaxed, until she is breathing properly and continuing to progress.

Anyway, thanks all. Please stay in touch. I amheading back in a couple of hours. I have spent both nights with Tahlia in ICU, but don't think I can in HDA, it is very crowdedand noisy.

Thanks again for all your posts. I do read them.

Love Lisa

WNCmom
11-19-2008, 09:40 PM
Lisa:

Thanks so much for your update. It sounds like Tahlia and you have been through the wringer. I can only imagine how frightening that must have been. It does sound like she is holding her own, though. We all have been thinking of you and are waiting for the next update. I'm glad you're getting some rest.
I know she will be fine.

Mary Ellen

pmsmom
11-19-2008, 09:48 PM
Thinking and praying for you both every day, Lisa. Take care of yourself too.

We are here for you!

Marian

discombobulated
11-19-2008, 09:54 PM
Lisa,

I'm so glad to hear an update...I've been thinking a lot of you both. Poor Tahlia (& you) sure have been having a bad time of it...but it's encouraging news that things are starting to look up for her.

I can understand your fright at how terrible people look after big surgery in ICU...and waking up on ventilation can be quite a nasty experience when you've never had it before. But I did want to let you know that a little down the line, Tahlia probably won't remember so much of this, because of all the painkillers and also the anaesthetic drugs still in her system at the time. I know my first few days from both fusion surgeries (and other biggies) are pretty hazy. I really hope the same will be the case for Tahlia.

Thanks again for taking the time & effort to update us...you must be exhausted. I hope you're able to get a rest now & again, and sleep better knowing that Tahlia is hopefully through the worst of it. Please take care of yourself, too :)

Best wishes - thinking of you both.

JenniferG
11-19-2008, 11:05 PM
Thanks for your update Lisa. I had been wondering about Tahlia.

I can only imagine how drained you must be feeling, and still unable to allow yourself to feel a little relief. Apart from the lack of sleep, stress is extremely draining but hopefully over the next 24 - 48 hours you will see how well Tahlia is doing and allow yourself to have a good night's sleep which will do you wonders.

gillespie
11-19-2008, 11:32 PM
So good to hear from you Lisa. My prayers are with you as you know I am getting really nervous. I am just glad to hear Tahlia is doing better rough road though. Thinking of you

Kitty
11-20-2008, 12:00 AM
Hi everyone,
Thanks so much again for your posts.

I have just woken up after a bit of a nap and am heading back to the hospital shortly.

Dis - thanks for that. I hope you are right and I know she is still quite groggy and dozing on and off that she proabably won't remember much, so that is good.

Catherine - I would not expect Danielle to have the setbacks we did as in hindsight we knew we had the Factor 12 (just didn't know it wouldn't be an issue). If there's one thing I can comment on, it's how AMAZING and WONDERFUL the Intensive Care nursing staff are - they have such an enormous responsibility but they are very very competent, caring, compassionate and thorough in what they do. I never doubted for one second that Tahlia was in the best capable hands. Both you and Danielle will be okay. My thoughts are with you also, and will be thinking of you come the 24th!!

Thanks all, Lisa

Carmell
11-20-2008, 01:47 PM
Many more Hugs to you and Tahlia. I know how heartbreaking (you feel as your heart is being torn from you chest) it is to watch, helplessly, as your child suffers. However, it DOES get better. And the memory cells in your brain will reduce the intensity of the experience over time. Time does heal. Like the others said, Tahlia will likely have little, if any, memory of these times. I hope that's the case. I also hope she's got a good pain management plan. AND, she needs laxatives as soon as she's able to drink. Constipation is a nasty side effect of most surgeries that often go untreated until its a MAJOR problem. Please don't let it become a problem. Stay on top of that. More and more hugs and best wishes and prayers coming your way.

vndy
11-20-2008, 02:01 PM
Lisa,

Please don't feel badly for making this decision "for" Tahlia. I had this surgery as an adult, and I only WISH my parents had been able to make the hard choices for me when I was younger, and when I was still living at home. You have taken a great weight off of her shoulders, whether she knows it or not. AND you have great taste in names (Ask Del why :))

Best,

Vndy

Carmell
11-20-2008, 05:18 PM
Lisa,

Please don't feel badly for making this decision "for" Tahlia. I had this surgery as an adult, and I only WISH my parents had been able to make the hard choices for me when I was younger, and when I was still living at home. You have taken a great weight off of her shoulders, whether she knows it or not.

Vndy,

Thank you for posting this. As a parent, "I" needed to hear this.

txmarinemom
11-21-2008, 12:10 AM
Vndy,

Thank you for posting this. As a parent, "I" needed to hear this.

I second Vndy's sentiment, Carmell and Lisa. It took me 39 years - and checking on whether surgery was palatable for 10-15 of them - to decide to do it. And I spent FAR too many years in pain. May both of your kids avoid that.

My curve wasn't progressing, but it didn't make diving into the unknown depth of the deep end (even when it was me and not one of my children) any easier. Of course, I'd take a bullet for either of my kids ... and I'm SO glad it was ME with this.

I'd deem any of you parents far more brave than me *any*day.

Regards,
Pam

Kitty
11-22-2008, 08:36 AM
Hi Everyone,
Tahlia is now up on the wards and spending her 2nd night there tonight. I was with her last night but couldn't get any sleep and kept waking her up, so thought best to head home tonight :p

She had her gastric tube out today, but is still catheterised and also still has her chest tube in. She's taking a lot of pills (mostly for pain and her bowels). Carmel, Tahlia has to take laxatives each day and she began to refuse them today until the nurse told her she had a choice of either the pills or suppositories. When asked what supps were, I explained it to her (in no uncertain terms :p) and she quickly popped that pill down her throat LOL!!! Our next step is getting her to start using her bowels and then they will look at removing the catheter too.

She wants to go home at the moment and today demanded i take her home, but obviously she still has a ways to go. Her physio is going good and she seems to be managing the pain ok but she often gets uncomfrotable from just lying in the bed and often says the back of her neck hurts.

I had a huge scare last night as the night nurse came on to giveher her intravenous antibiotic and said she couldn't find the canula point. She said the HDA nurses shouldn't have taken it out and so they tried to page the doctor to come and insert one so they could give it to her but of course two hours later, he still hadn't come. I of course, was have a stress overload because of her previous issues with infections and worried about her rods and everything, but then the nurse came in to give her some other pills and do her obs and would you know it, 'found' the lines in the neck. Silly woman only looked in the wrists, didn't bother to check her neck as they were hidden under Tahlia's hair and sheet whilst she was sleeping. Aaaagghh!! God, did I almost have a heart attack.

Anyway, Tahlia is getting better all the time, just so tired and sleepy a lot. Although, she's giving her mother a bitof attitude at the moment, but I don't mind that, because I think it's a good sign:) (but she'd better not get used to it!!! LOL)

Vndy and Pam - I cannot agree with Carmell any more. Your comments were very profound and have made me realised that I have made the right decision. I never really imagined how difficult it must be as an adult and wrongly assumed that my daughter might prefer to be making this decision herself as an adult rather than having it made for her now. So thank you both for putting me at ease with that. It is very comforting to realise that I have very possibly taken that "weight" off her shoulders. :)

And thanks for the compliement Vndy -yes both Del and I do have great taste in names, although we spell and pronounce our girls' names differntly - Tahlia and Tarlia!!! They are both beautiful.

Well all, I am going to get an early night and then heading back to the hospital early tomorrow morning with the hope of getting a Number 2 sometime tomorrow. ;)

Thanks for your posts.

Love Lisa

WNCmom
11-22-2008, 09:25 PM
Hi Lisa--

Just want to chime in that one of Sidney's biggest compaints is about his neck. When he was sitting in a wheelchair at the airport today he wanted me to support his neck from behind with my hands, and in a plane or car seat, he always had to have a small pillow or other support under his neck. The only thing I can figure is that when the curve is straightened, the neck has to support the head in a way the muscles aren't used to, so they fatigue easily and hurt after a while.

Mary Ellen

JenniferG
11-23-2008, 02:18 AM
Just have to say I agree, Tahlia and Tarlia is a lovely name. I have a four month old grandaughter named Thalia, (pronounced Tarlia) who was named after her Mum's best friend since pre-school days, Thea Natalia.

Kitty
11-23-2008, 06:55 AM
Thanks Jen, yes I think it's beautiful whichever way it's pronounced or spelt. Tahlia's name is actually pronounced Taleah, but people often mispronounce, although we don't mind at all :)

Mary Ellen, that is a very interesting theory. I am going to take a neck cushion in with me tomorrow and hope that will be of some comfort to her. Tahlia did her Number 2 today (yay!!) and will have the catheter out tomorrow. She is then likely to be transferred to the rehab campus of the hospital for physio and recovery, likely to be discharged on the 30th November. She is getting better all the time and is also now off her PCA pump and just taking oral pain meds. She's fairly grumpy cause she's sick of hospital, but i know she'll get there.

Hope Sidney is continuing to amaze you. :)

Lisa

WNCmom
11-23-2008, 10:19 AM
Lisa--

I know this isn't a competition, but Tahlia is way ahead of Sidney in the digestive department. We still haven't cleared that hurdle, and we are all anxious about it. He is eating well, but can't eat too much because he doesn't have room. After eating, he's a little uncomfortable, but that goes away.

It's actually great to hear Tahlia is getting grumpy and sick of the hospital. I think that's a good sign! Sounds like she is gaining every day.

Mary Ellen

pmsmom
11-23-2008, 04:11 PM
I'm so happy that Tahlia continues to improve. That's great!

Hope you are able to rest some, Lisa.

Kitty
11-24-2008, 07:24 AM
Mary Ellen, perhaps we should start a new thread - Sidney vs Tahlia (LOL!!!) and track their progress. Yes Tahlia is doing well in the downstairs department. She did two poos and a wee today - OMG i can't remember the last time i got excited about my child's toileting - LOL!! Seriously though, I am sorry to hear Sidney is experiencing some discomfort, but it was my impression that this can take a little time to return to normal, especially the urinary function. In fact, they have been ultrasounding Tahlia a couple of times because they are a little concerned she's not weeing enough.

Tahlia's potassium levels were low and they have now topped that up and also taken her off the antibiotics. They said she did have an infection, but i guess that has now gone. Her pain isn't so bad now and she managed to sit up today and touch the floor with her feet, but we are a loooonggg way off from walking independently. One day at a time, as they say.

I have been thinking of CAtherine today. Danielle (if my sense of time is right) should be in theatre now. So my thoughts are with them both and I hope that Catherine is holding it together.

Thanks pmsmom - yes i am resting more and feeling so much better. Tahlia was much more alert and energetic today and i think this was the first day she didn't actually doze off, so she is getting heaps better all the time.

*hugs to all*

Lisa

pmsmom
11-24-2008, 06:22 PM
Tahlia's potassium levels were low and they have now topped that up and also taken her off the antibiotics. They said she did have an infection, but i guess that has now gone. Her pain isn't so bad now and she managed to sit up today and touch the floor with her feet, but we are a loooonggg way off from walking independently. One day at a time, as they say.

I have been thinking of CAtherine today. Danielle (if my sense of time is right) should be in theatre now. So my thoughts are with them both and I hope that Catherine is holding it together.

Thanks pmsmom - yes i am resting more and feeling so much better. Tahlia was much more alert and energetic today and i think this was the first day she didn't actually doze off, so she is getting heaps better all the time.

*hugs to all*

Lisa

Yes, do take things one day at a time. It sounds like Tahlia is improving each day and that the doctors and nurses are keeping a close eye on her. I'd rather them be careful and take the time they need with Tahlia than to rush her home before she's ready.

Btw, I don't always sign my posts, but my name is Marian.

I am truly inspired by what I've read on these boards with you all and your children. I only hope that I can be as strong when the time comes.

I've been thinking of Danielle, too. Anyone heard from Catherine?

Marian

Kitty
11-25-2008, 08:05 AM
Thanks Marian,
I appreciate your concern for my daughter. However, we've had a minor setback today. They removed Tahlia's chest tube, which was fantastic, but when they did the chest x-ray found air around her lungs. They requested a consult with a cardiothoracic surgeon to review it and she recommended they just monitor her for now, with oxygen throughout the day. We were initially concerned they would have to re-insert the tube (which Tahlia was dreading) but she said she didn't want to touch her with any tubes (which was a relief!). So it just means she'll have to stay on the wards a couple of days longer before she can go to rehab. But we'll get there.

L.

pmsmom
11-25-2008, 10:41 AM
Thanks Marian,
I appreciate your concern for my daughter. However, we've had a minor setback today. They removed Tahlia's chest tube, which was fantastic, but when they did the chest x-ray found air around her lungs. They requested a consult with a cardiothoracic surgeon to review it and she recommended they just monitor her for now, with oxygen throughout the day. We were initially concerned they would have to re-insert the tube (which Tahlia was dreading) but she said she didn't want to touch her with any tubes (which was a relief!). So it just means she'll have to stay on the wards a couple of days longer before she can go to rehab. But we'll get there.

L.

What does the fact that they found air around her lungs mean? I'm not familiar with that.

I'm sorry to hear about the setback, but it sounds as if they are keeping a close eye on Tahlia, which is a good thing!

Keeping everyone in thoughts and prayers!

Marian

Carmell
11-25-2008, 12:06 PM
Marian,

Pneumothorax is a condition that can happen after any surgery, specifically surgery that requires chest tubes, etc. http://www.nlm.nih.gov/medlineplus/ency/article/000087.htm

When air gets caught outside the lungs, but still inside the chestwall, it pushed on the lungs. If the lungs are even the least bit weak, it can collapse the lung(s). It can be serious, but most often, its just a matter of healing, getting the patient up and moving, reducing the risk of air in that space.

pmsmom
11-25-2008, 12:40 PM
Thanks, Carmell!

Kitty
11-26-2008, 07:00 AM
Thanks for that Carmell. I couldn't have answered it better myself, but yes you're completely right. The physios haven't been able to do their breathing exercises with her either. Tahlia had another x-ray this morning and the doc said the air is still there around her lung so they are going to keep her on the wards until Friday when they'll do another x-ray. They said they just want to ensure she isn't short of breath and will keep her in for another couple of nights. I am okay with that just to ensure she is in complete full health before she goes over to rehab.

Carmell, do you know what potassium is for? Tahlia also had quite low potassium levels, which they needed to top up. She is off that now, but am just interested to know what it means.

Thanks,
Lisa

Carmell
11-26-2008, 01:04 PM
Hi Lisa,

Why aren't they able to respiratory therapy with her? Is she refusing, or is there a medical reason why they can't do percussions? That would help a lot.

Low potassium (hyperkalemia) can cause problems with muscles, heart and kidneys. Muscles need potassium to contract and function properly. http://www.emedicinehealth.com/low_potassium/article_em.htm

This website shows that there are several causes of hyperkalemia. When I fractured my elbow, they almost didn't operate to fix it because my potassium was too low. They told me it could be low from the trauma to my body from the fall I took. Trauma to the muscles/tissue can trigger hyperkalemia. Back surgery is certainly trauma to the body.

I would be very careful about not taking potassium supplements still. She should likely be taking it until she's recovered enough to not have any more major setbacks (like another collapsed lung). I'd ask the docs about why they aren't having her take it anymore.

Good luck with the rehab and with a continued recovery.

Kitty
11-27-2008, 08:20 AM
Carmell,
Using the "bird" would only risk causing the bubble to increase, thereby putting further pressure on the lung. I think the physio also said something about this subsequently affecting the heart as well, but i can't remember precisely what she said, but it made sense at the time, so they are just wanting to play it safe for now, until they do further x-rays. Unfortunately, the last one we did indicated the air had neither increased nor decreased so they are keeping her in for another 2 nights before they do another x-ray to see where she's at. She is still doing her sitting and walking now with the physios (just not the breathing) and today walked out of her room and also went to the toilet on her own (commode) for the first time. So she is progressing well. She is not short of breath of anything, but I guess they jsut want to monitor this for the time being. I am grateful they are bieng so thoruogh and careful with her.


cheers,
lisa

ScolioDan
11-27-2008, 05:30 PM
I haven't been on this forum for a long time or contributed much but I just wanted to wish Tahlia and her family a lot of luck. My palms actually sweat a lot just reading about this experience [I think maybe because I may have to do it in 9 months] but it must take a lot of courage and strength to get through all this so I hope it all works out.

txmarinemom
11-27-2008, 08:02 PM
I haven't been on this forum for a long time or contributed much but I just wanted to wish Tahlia and her family a lot of luck. My palms actually sweat a lot just reading about this experience [I think maybe because I may have to do it in 9 months] but it must take a lot of courage and strength to get through all this so I hope it all works out.

Dan, there will come a day where you feel like you contribute ... it's a process we go though, I think. Show up here scared to death of the unknown, and then ... try to explain the unknown as best we know how.

Tahlia's experience isn't the norm. She had some bonus issues to deal with. I'd expect your experience to be relatively uneventful, hon. Yes, I know it's scary to hear what COULD happen, but take solace in the fact the worst *doesn't* usually happen.

I suspect even Kitty and Carmell would reassure you of that.

Regards,
Pam

Kitty
11-28-2008, 02:20 AM
Hi Scolio Dan,
Thanks so much for your kind wishes. Tahlia has lots of love and support and is very proud of her achievements so far. She is getting stronger and stronger each day. She has to remain in hospital for a couple more days and will have an x-ray on Sunday to have another look at her lung. Hopefully she will be moved to rehab on Monday *fingers crossed*.

Dan, Pam is right. Tahlia had a couple of setbacks due to reduced lung function and a Factor 12 deficiency (thinning of the blood). The majority of scoli patients DO NOT have these issues, certainly the blood issues that Tahlia had which caused the majority of her delays in hospital, and in spite of that she has sailed through it all rather well and as mentioned above, making huge gains each day. She walked down the corridors today and was so pleased with herself afterwareds :)

You will do great and will be yet another success story we will all look forward to reading about in the forum. Take care of yourself and try not to worry.

*hugs to you*

Lisa

Pooka1
11-28-2008, 10:51 AM
I agree completely with what Lisa said.

This surgery is flat out amazing. We are lucky it exists.

sharon