Re: to Kimberley

[Guest guest]

Hi ;

The cover on Kirkland's kidkart headrest is lambs wool. He needed it for exactly the same reason as your son. We ordered it at the time we purchased the kidcart and it was made by the seamstress who works for the supplier, Motion Specialties. The rep just told her what we needed and she came up with it. It just slips over the rest and can be removed for cleaning.

Take care,

Kimberley Kretzmer wrote:

Hi, Im so happy to hear he is doing so well. We havetwo children both with major breathing difficulties aswell (not our mito child actually) and both aretrached and need Oxygen and pressure support at times.Anyway, I took a look at your carebridge page and Iwanted to ask.. where did you get the cover for hisheadrest on the kidkart? It looked like lambs wool?Our sons is rubbing the back of his head and makingaquite a bald spot so I thought Id ask. Thanks! Kimberley--- Kilbride wrote:> Hi friends:> > Just dropping by to say hello and to let you know> that we're finally home from Sick Kids Hospital

just> in time for the holidays to be over. I can't tell> you how much it's meant to have your support and> kind words coming our way during this, our toughest> time yet. Many times I thought of you all and> realized that I could handle it because most of you> have and I could turn to you if I needed a shoulder.> > > To some of you, I owe a phone call. When I get> settled and can talk about things without getting> exasperated, I'm going to make a coffee, sit down,> and start dialing. I know most of you understand> what it's like to dread having to repeat 'the story'> just one more time. I hardly spoke to anyone on> the phone during this admission. I feel like I've> become weaker with each hospital stay and I fear it> may be quite a while before I bounce back from the> trauma of this one.> >

Anyway, enough about me. Kirkland's doing well. We> waited 2.5 weeks to get a bi-pap machine to bring> home but boy, has it been worth it. Immediately> after being put on it for the first time in> hospital, his sats increased and his respirations & > heart rate normalized. Everyone involved breathed a> sigh of relief for he responded so well, didn't> fight it, and came off it no problem too. The> initial start-up wasn't done in ICU but rather, on> the floor (which was very risky) but we'd decided no> ventilator anyway so there was no need for ICU.> He's really only using it at night but the odd> afternoon he was working a bit harder on his> breathing so we put him on for a bit while he was> awake and it did the trick.> > Kirk's upper right lobe was still collapsed when> last x-rayed but I'm told that it still could>

re-inflate despite the cronic lung problems. I'm> not holding my breath though.> I'm just so relieved to be able to provide him with> some breathing support and alleviate most of his> suffering. When we took him in, he was indrawing so> much that his chest was heaving off the bed with> each breath. His heartrate was180, resps in the> 60's, sats in the mid 80's on 10 litres of O2> (masked).> > Tonight, he's asleep but not yet on the bi-pap. His> sats are 97%, 1 litre O2, nasal prongs, heartrate-> 90 respirations- 30, no indrawing! He hasn't been> like this in a year.> When he coughs, the secretions are clear and they> don't need to be suctioned out. The coughing's> decreased a ton too.> > Obviously, my relief is overwhelming and I feel so> grateful to our doctors who moved on this quickly. >

It was actually Kirk's mito doc, Dr. Feigenbaum, who> ran with it and got us the help we needed stat! And> I thank those of you who coached me through these> respiratory issues. The power of the internet is> simply amazing -here's proof:> > Many of you were recommending the Cough Assist> Machine to me and if you recall, I started looking> into it in Canada but no one had heard of it so I> wasn't getting anywhere. Vicki (thank you so much> for interupting the discussion to tell me that you> knew of a Caringbridge family in Ontario who had> one) gave the address of baby , an SMA baby> from Ontario . I in turn, wrote to his mom, ,> who immediately filled me in on who had helped her> access the cough assist machine and bi-pap.> Fortunately, was seen by a pulmonologist at> Sick Kids Hospital which is Kirk's hospital too-

Dr.> McLusky.> I gave his name to Dr. Feigenbaum (Kirk's mito doc)> that day, she contacted him and he recommended we> consider the bi-pap. They reserved a bed for Kirk> to come in and be assessed. We arrived in Emerg a> day early which upped the whole process. And the> rest is history!> Ironically, the nurse who first cared for Kirkland> on the floor had fallen in love with while he> was in and now she does private nursing for him in> borough. I've communicated with 's mom,> , since then through Tiff, our 'common' nurse.> She was great to us while Kirk was in and hopefully> we'll all keep in touch.> Wild eh?? It's a small world - and it all started> with this group!> > To the new families who are struggling to cope with> mito, let this be encouraging to you all. There is> so much

to learn from these mito parent experts. > Keep asking the questions, you never know when their> advice, combined with that of your doctors', just> might save your child's life.> > Happy New Year to All and thanks for being our> friends.> > love and Kirkland (almost 4yrs) Complex One> Deficiency, seizures, dev'l delays, 24 hr O2,> oximetry, G-J tube, AFO's, suction, nebulizer,> bi-pap, autonomic dysfuction, CVI....> **plus Evan 10 yrs, and Carson 7 yrs**> > Check us out at> www.caringbridge.org/canada/kirklandk/> > > > > > > __________________________________________________>