LOCKY update Day 9 and 10

Its nice to know that I have a few people following my rambles.

Day 9 - After talking with Locky and knowing my Mum and Brother where going to the hospital we decided to spend our last day at the camp site packing and letting the younger kids have a bit of fun. We talked with Locky all day via text and calls. Locky had a good day but the Dr wanted a MRI(of his spine) with contrast and Locky was unable to drink the contrast, so it was delayed till today. My Mum, Brother and his family all visited with Locky and he was able to con my Mum in to buying him KFC on the way up to the Hospital, SO I think that is a sure sign of his hunger is returning. Although I have to say I can't blame him for not eating the hosptial food.....by gosh its awful, the smell alone turns my stomach let alone the sight of it.

Day 10 - More frustration but then some peace. After packing up and leaving the Campsite and heading towards home we got a call from Locky telling us that a couple of Dr from the PA(the spinal rehab unit) had visit him and advised him that he was now on their waiting list, they discussed things with him and basically said that things have been decided he was going there.

I was so angry and frustrated at this, we had no warning they where coming nor had we given permission as his parents for them to come and talk with him. The lack of communication is just awful, its not that we aren't considering this place as a option because we are, it is the number one leading Spinal Unit is our state, some would say Australia, its not them, it's the total disregard of us as his family and the needs of Locky in that he might want his parents with him when such a thing was being discussed that bothers us the most.

I had some frustrating converstations with the shift nurse but, then was able to get onto the ward Social worker and really felt that we have finally been heard and Tony was able to get a full update tonight and clarify a few things with a more senior medical Dr and our concerns where also addressed with the Nurse in Charge on the ward. We are not concerned about Lockies actual nursing care its fine, its just the communication with us that is lacking.

I was also able to talk with the Dr from the PA this afternoon and I was able to clarify many issues and have some concerns addressed, we feel now we are able to make a informed choice as a family as to what Locky needs to regain his life.

Several people have asked how Locky is going "really", its hard for us to really gage this, yes he has movement in his feet but he has NO feeling from the belly button down, until we got thrown into the world of spinal injury I didn't even know that was possible. Offically Locky is now classed as a incomplete Paraplagic, he can move but he can't feel, he can sit but he can't stand or walk. He will have a long recovery, and we have been told that he may not regain what he has lost. If he does regain what he has lost it will be a miracle and YES we believe in Miracles.

Locky also got his first(and hopefully last) wheel chair today.........I am still struggling with how I feel about that, so I can only imagine how Locky feels......

Locky Update day 8

I can't even tell you how amazing it was to hear my son tell me he can lift his right leg. He is regaining some movement each day but the numb feelings to both legs and feet remain and he has no control of his bladder or bowel because of this, We have been told this should return eventually. 

Locky is in good spirits especially after he had a day of visitors, one of his friends, his teen cousin and my husbands parents.

I forgot to take a pic today while I was chasing his Dr for a update, I really hate how they are not keeping us up to date on what is going on. Its so frustrating that they are making decisions for him without us, ordering wheelchairs, making arrangements for him to go to another hospital without even so much as consulting us. 

Dealing with the lack of a control Tony and I both have over this situation is so very frustrating.....we are beyond upset and being send a first year Dr when we requested to see the specialist yesterday did nothing to help us feel better about things.

I am happy that they are telling Locky things, but mostly he has little understanding of what they are telling him, its a new world to him, and he is still getting his head around things.

Tony and I have been spending HOURS on the internet researching Spinal rehab options for Locky, we are lucky our private health insurance allows Locky some options in regard to rehab.......there are several little know amazing facilities on the Sunshine coast, one in Brisbane and then the option that they are suggesting. We need this to work for everyone......its easy to say that we should just drop everything as a family and worship the option that they(the hospital and Dr) are suggesting but the truth is after doing the research that we have its not our number one option. I am willing to hear them out, but we also are considering other places too.

This is one of the hardest things our family has faced, Locky and all of us are coming to terms with a new normal……

Wonderful new Newborn Actions for PS

 You have to go check out the new Newborn action set that MCP is developing and while you are there be sure check out the rest of their awesome actions and fab tutorials. http://www.mcpactions.com/blog/

Locky Day 7

First Time out of Bed, Even got a smile.

Day 7 Lachlan Update

Day 7 update

Lachlan is out of ICU and has been transferred to a Neuro surgical ward, Praise JESUS!!! all the prayers are working.

He looked amazing today compared to the even yesterday; he no longer looks bloated or grey.

Today we had our first discussions about where he can get transferred to for rehabilitation. He will need to learn to walk again. The spinal cord has received damage, hopefully the damage is short lived, but there is damage…he has limited movement below the waist, and an over all numbness from his bellybutton down.

The Discharge/ transfer coordinator came to talk with us. She wanted to let us know that they are only recommending one option, for us that is not the option we would choose, I have worked in the place they are recommending and I am not a fan of the place…I am very sure that they do amazing things for a lot of people but for Lachlan and our family, our belief systems and the way we function its not a place that I think is place for our Son.

We have 2 other options we are presenting them tomorrow, both have criteria he has to meet and a referral process but both places I feel are more in keeping with the way we operate as a family. Both are also fully covered by our health insurance. We believe that Locky will do well in either place if he is accepted, one in particular we believe has a very high standard of care, equal if not better than the option they are trying to force on us.

I am feeling quiet angry and frustrated today…But I have decided to sleep on it before I spill it all here…Tonight is the first night I haven’t gone to bed with a headache in about 5 days, so I am going to sleep on my thoughts…and share them with you tomorrow.

Lachlan.... How could this of happened?

Update from Day 1-6 (please excuse all errors, spelling and otherwise this was written in the wee hours and inbetween hosptial visits)

For those of you that follow me on Twitter (@Nickimum) or on Facebook (Nicki Zieth) this will not be news to you.

Lachlan our eldest son who is 17, suddenly a week ago Sunday started complaining of back ache, he was due to return to his work interstate the same day and because we where unsure of the work policy we encouraged him to return to work and ask to be taken to a Dr. the following day if he was no better.

He returned and was no better on the Monday so his employer took him the a Local hospital and he was diagnosed with Muscular pain and prescribed Ibuprofen and Codeine for pain, His employer decided he was better off home and returned him via a afternoon flight the same day. He seemed fine, not unwell as such just in pain…we even joked that he had a dose of “Man Flu” and told him he just needed to get moving and get the muscles moving…how wrong we where and how those statements would come to haunt us.

Tuesday he spent the day sleeping, I thought as a ex nurse that he had just over done the Codeine and knowing Ibuprofen can relax you I just felt the 2 together had made him sleepy, Wednesday he seem to have less pain and since we had planned to leave for our Easter holiday we asked him if he would like to stay with his Grandparents and join us when his back felt better in a couple of days(after wall it was just back pain) he agreed that was a good plan. When we went to leave he seemed a bit unsteady on his feet and it worried me but again I put it down to many pain meds and laying around for 2 days.

We dropped him off at his Grandparents and left for our holiday (a hour drive away) arriving at our campsite at about 2 o’clock. At 3 my Mother-in-law called telling us he couldn’t stand and should she call an Ambulance to which we agreed. Tony and I discussed things and decided that because Bella (our baby) was still Breastfeeding he should go and be with him at the hospital…we then received a phone call that scared us to death but was nothing compared to with what was to come. The staff at the hospital thought he might have meningitis (a infection around the lining of the brain) or Osteo Myelitis (bone infection) they wanted to test for both, we told them yes go ahead…Tony went to be with him and arrived just after they had done the spinal lumbar puncher to test for Meningitis. The Dr told my husband that the fluid looked yellow which it can sometimes appear like if someone has had a brain bleed…we where in shock what the heck was going on???

A hour later at about 6 pm my husband rang to tell me that he was deteriating and that the ER specialist was very concerned and thought that something was going on that was compressing his spinal cord he was transferred to a larger hospital a hour away. On arrival he had a emergency MRI which to our horror found a large Epidural abscess which we where later to find out ran from C4 to Th7, by his time it was 5am and he was scheduled for a emergency Laminectomy the only way to relieve the pressure from his spinal cord was to remove the very bone that is designed to protect it.

Our heads where spinning…how could this possibly is happening; he was fit, healthy and only 17 years old. I typed in spinal abscess in to Goggle from the camp site on my iPhone…and to say I was horrified was a understatement, this could be fatal he could lose all function below the waist, this could cause permanent damage…a life in a wheelchair my beautiful boys dreams and hopes shattered…I wept quietly so not to wake my 4 other sleeping kids all packed into our camper.

With the sun rising our Eldest 6foot 1, strong as an ox son who by now was seriously ill, unable to move anything below the waist was wheeled into OR, and the Dr prepared us for the worst. Best case was he would have 6 months rehab to regain his leg movement, worst case he would never walk again. How as a parent do you even wrap your head around that? how do you prepare yourself for that?

We hit Facebook and twitter with many requests for prayers and positive energies, for love and support and in return we received an outpouring of love that we have not experienced before, it lifted our spirits and helped us focus on the positives.

The surgery took about 4 hours; they removed Th1-4 Lamina (the top bone of the spine) to relieve the pressure on the spinal cord and placed a drain to drain the puss from his spinal cavity. He was returned to the General spinal ward and seemed fine (as in stable) and Tony returned to the campsite after spending sometime ensuring he was stable. We breathed a sigh thinking he was at least stable and we braced ourselves for the days ahead.

At 11pm we received a phone call that Locky was unstable and had been transferred to ICU, we where advised that he was now stable and that he was also sedated and they would call us if anything changed. I tossed and turned for the rest of the night unable to settle into any type of sleep, with daylight we called and checked on him and thankfully he was still stable.

We both went up to the Hospital as by this time our dear friends had arrived who we where holidaying with us and they offered to have the other children for us so we could both go to the hospital and get a full update (not just bits and pieces from nurses over the phone). Once on the ICU ward we got to see him and reassure him that things would be okay but inside we really had no idea, he had regained some movement but I felt it wasn’t enough.

The ICU Social worker came around and chatted with me asking me lots of questions, asking me if we where coping and giving me that “I am so very sorry” tone and look…I had a little freak out, I am just about always strong in emergencies, I break later when no one is around but this women nearly had my on the floor in fetal position…I hate sympathy in that form, in the “oh you poor things” form…its seems so unhelpful to me, I know it works for other people but for me and at this time NO! I didn’t need it, I needed to grasp on to Hope, recovery and how we get to that point!. I recomposed myself, took a deep breath and explained in our family we always focused on the positives, I explained a little bit about my history, our daughters medical issues and how sadly we had spent way to much time in ICU’s with my kids and the foster children we had cared for…I don’t know if I was trying to reassure her or me, but I gave her the “this is our family run down after she stupidly asked did “Locky have other siblings” and I could see her mentally writing me out a referral to a therapist. I also kind of stamped my foot and told her that I was pretty upset that we had not had a Dr update us about what had been done in surgery or how he was going etc.…she promised to track down the Consultant and get him to talk to us.

I really didn’t believe that she would get him pinned down but to my surprise 20 minutes later we where asked to attend a impromptu “family meeting” Gosh I couldn’t help thinking as we here led into a “family room” how many other families had walked into this room before us and how many had received heartbreaking news on their loved ones.

My brain jumped back to the “family room” just outside the Pediatric Cardiac intensive care unit at my Daughters hospital and how all of us parents knew that if you got called into that room it was never good news…I held my breath as we walked into the meeting. The Dr started out by saying that this was a Awful thing that had happened…in my head I am willing him to just jump to the part where you tell me my baby is going to walk again…. I let out a tiny bit of my breath thinking if I don’t breath soon I might faint. He goes on to explain everything that has happened and just how extensive the abscess is, how close he was to being a quadriplegic for life…and just how lucky he is…but I don’t want to hear this my baby shouldn’t be lucky, he shouldn’t be here, he should be at work learning all he needs to learn to take on his awesome new career with a Mining company as a Diesel Mechanic, We shouldn’t have to be thinking this stuff, be in this room, listening to you…He is the sweetest Dr, kind, approachable and skillful with his words, comforting almost. I know this must be some of the hardest parts of his job, talking with relatives I know its not his fault.

He reassures us that he has good signs for recovery, but he has a LONG road ahead and so much has to work in his favor for that to happen. He tells us they have no idea how this happened, why it happened and where the nasty awful bacteria came from (often there is a primary site and we had been told it could be a sore on his arm but they feel the source should be a larger infection than that). He explains that he has only seen one other person that was a non IV drug user get this type of abscess and they where elderly…He seems genuinely as shocked at what has happened as we are.

The Social worker is with us in the room, she talks about practical stuff, I can’t even think…its not her fault she is really a nice person doing a tough job and I want to thank her but my mind is fog and buzzing with all the new crazy that has engulfed us. We end the meeting with more positives than negatives…hope and lots of hard work and stress ahead but there is hope our son will walk again. We thank the Dr for his time.

So that is kind of where we are at, Locky is still in ICU, mainly due to the infection that is taking 3 powerful IV antibiotics to kill, and also because the operation was in a area that is critical to breathing and heart functions so they want to ensure all is stable before returning him to a regular ward. Locky is in better spirits today, he will not believe us that he has a long road ahead, I guess that is a hard thing for us to grasp let alone him.

Please keep him in your prayers I will try and update daily on here but it’s not easy and we decided to stay at the campsite as it’s the same distance travel for us to the hospital and at least our other kids are happy and having a great time. Tony and I are struggling to keep up a brave face but we are trying, we are juggling who goes to the hospital and at present as much as it pains me it makes more sense for that to be Tony. Isabella is still feeding a lot and the ICU staff would usually welcome her into ICU but have advised us that at present they have some awful bacteria and virus’s in other patients in the Unit and they advised that we keep Bella and even myself out of there as much as possible…it hurt my heart but I know myself from my own nursing days that we wouldn’t of advised that if it where not true, and frankly I can’t risk Isabella getting sick too. We will try and juggle the next few days with Tony until he is back on a ward, then we can work it better and Isabella can come to the hospital more safely.

I want to thank my amazing friends Christy Mountford and Kristy Jenkins for their amazing love, support, and help with the kids this week…you ladies have been amazing and I am blessed to have such amazing IRL friends.

Things I am learning about Homeschooling.

Homeschooling is hard work.
It requires alot from both Children and Mumma's
Its a Learning curve.
Kids who have relied on Calculators prior to homeschooling have alot to catch up on.
Times Tables are a must learn.
Teens talk alot.
Teens eat alot. (I already knew this with teen boys, but learning its true of girls too LOL).
Twice as much learning can be fitted into one day than what is learned in a day at regular school.
My Child is smart, dedicated and adaptable ;o).
Work can be taken anywhere.

Katie reading to her sister in a Hospital waiting room

Work doesn't have to be done in school hours.
and mostly I am learning that I am the type of Mum that can cope with homeschooling.