Monthly Archives: January 2013

We’re out —- !

Emily, all dressed up and ready to head home!

Emily, all dressed up and ready to head home!

Emily’s IgG infusion was finished, her Broviac lines were flushed with heparin, and we were able to walk out of the ICU about 4:30 Sunday afternoon.  It felt sooooo good to be able to breathe without a mask over our faces!  Almost the best part of going home! Almost —-

We are hoping – and praying – that this IgG infusion will start Emily on the road of fewer hospital stays. We offer a huge Thank You to her nurses in the ICU, who had to listen to Emily’s tantrums several times, especially during the last 24 hours, as she started to feel a little better and a little less willing to stay confined to a bed and monitors and her room.  We know they are well aware of sick children and how they can act, but they showed a lot of patience in helping us care for Emily.  Thank you — you made our stay more pleasant.

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A tea party and some hope!

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This is how we started the morning – eating cereal while Momma researched Immunoglobulins on her phone.

We’ll chronicle the hope first – because hope is definitely appreciated when you’re still stuck in the hospital and wearing these very-NOT-Egyptian-cotton  gowns and masks!  In Emily’s case, her hope will come from Immunoglobulins.  They tested Emily yesterday and she is low on Immunoglobulins A and G.  Our bodies produce antibodies, or immunoglobulins, that help us fight infection.  Emily’s body is not producing enough of  the immunoglobulins A and G so when she’s exposed to a virus or bacteria, she can’t fight it off like everyone else.  And this is the second time she has been felled by a “simple” Rhinovirus. Sometimes immunoglobulin deficiences just occur and sometimes they are due to leukemia or chemo.  In Emily’s case, it’s probably either the leukemia or chemo – especially considering that antibodies are produced by the B-cells and she has B-cell leukemia.   Her Oncologist is going to start her on intravenous IgG  (Immunoglobulin G) infusions today – and then she will get them every three to four weeks throughout the rest of her leukemia treatments, and maybe longer.  She’ll be tested periodically to check her level.  At this time, IgA infusions aren’t medically possible because IgA hasn’t been able to be reproduced to be able to infuse.  However, IgG antibodies make up 80% of your antibodies so the hope is that this will help Emily stay out of the hospital.  As her Oncologist, Dr. Ducore, told us, there isn’t a lot more that Chrissie can do at home than she’s already doing to protect Emily from exposure but there is maybe something that they – the doctors – can do to help Emily.

Okay, this is Emily, in a totally two-year-old, I-have-absolutely-had-it-with-this-place moment, pulling for all she's worth on her IV lines!

Okay, this is Emily, in a totally two-year-old, I-have-absolutely-had-it-with-this-place moment, pulling for all she’s worth on her IV lines. We, Momma and Grammie, were on the sidelines, making sure she didn’t actually do any damage to the lines!

As I type, we are still in the ICU, mostly because there hasn’t been a bed available on the Peds floor for Emily.  Her O2 saturations remain mostly stable – unless she’s screaming or having a two-year-old moment – and she has been off of oxygen for almost a day.  Her heart rate and respiratory rate are mostly normal.  She is still tired but then she did had some spots of inflammation, or fluid, in her lungs so we know that although she doesn’t have pneumonia, she’s not moving air  as efficiently as normal.  That will just take time to resolve and she is doing better every day.  We are now waiting for the IgG infusion to come up from the pharmacy – it will take two to four hours to infuse – and then Emily and Chrissie might be able to go home later today.  We are hanging onto that hope – and very, very thankful for the medical treatment that Emily has been getting at U.C. Davis that can give her hope to beat all of this.

Peace after the storm --

Peace after the storm —

Sophie and Abigail - all dressed up like the young ladies they are --

Sophie and Abigail – all dressed up like the young ladies they are —

Now, for the tea party!  Sophie turned five on December 28th and Chrissie wanted to give her an English High Tea for her birthday party.  Of course, it was all set up for yesterday, January 5th, and then Emily landed back in the hospital.  It took a lot of planning and phone calls and prayers but all of us arrived at Tea Anytime (in Fair Oaks) as planned – although, a little bit late. Chrissie, Grammie, Auntie Gaby, Sophie, and Sophie’s best friend, Abigail. The girls were dressed in their best finery – and the adults did their best, after dealing with all of the logistical problems of even getting there! When you walk in, you are instantly transported into an English tea cottage – all dark and antiques and cloth linens.  Absolutely amazing for five-year-old girls and their entourage!  We were served wonderful hand-blended teas in teapots with cloth tea cozies – and trays of  scones, sandwiches, and desserts.  We left, cozy and full.  A little bit of magic in an otherwise, all-too-often, abnormal life.

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You are my Sunshine —–

Emily - and Chrissie - back in the ICU.

Emily – and Chrissie – back in the ICU.

Back in the ICU --

This is a song that I/Grammie sang to my girls when they were young – “You are my sunshine, my only sunshine – you make me happy, when skies are gray – you’ll always know dear, how much I love you – won’t you be my sunshine today?” My girls now sing this song to their kids – as Chrissie does to Emily —

Right now, Emily is having trouble feeling – or being – very sunshiny.  She is back in the hospital – at U.C. Davis Medical Center – and is again back in the Peds ICU.  She has been acting poorly for about a week – more tired – quit eating and only wanted to nurse again – had a little cough that developed into a bigger cough – then  coughing spasms which caused her to gasp for air until the coughing was over – sprinkled with intermittent temps. Chrissie was in touch with Emily’s doctors for a few days, then took her to the Oncology Clinic on Thursday to have her checked in person.  Her ANC was 1040 – really good – and her other labs were good – but her oxygen saturation, which should be 100%, was dipping into the 50-80%’s when she got to coughing – plus her respiratory rate and heart rate were fast.  A chest xray didn’t show pneumonia but did have a few spots of inflammation so, with everything else going on, her providers decided to admit her, just to be safe. She was on the regular Peds floor for a couple of hours but then bumped up to the Peds ICU because her O2 Sats continued to drop when she coughed and her breathing and heart rates were staying high, even when she wasn’t coughing.

That’s where she is now, not quite as sunshiny as she usually is.  She laid in her bed all morning today, doing not much of anything – then perked up enough to paint a bit – and then, because she’s Stitch – showed that she’s still two years old and she’s tired of being here.   For most of a full hour! Her O2 Sats still go into the 80’s when she’s coughing, her heart rate goes into the 150’s and up, and her respiratory rate can be in the 60’s, so Emily – and Chrissie – are still in the ICU.  For awhile today, she wasn’t allowed to eat or drink – or nurse – because they were afraid she might aspirate something into her lungs if she started coughing at the same time.  Later on, she was allowed to nurse and have clear fluids which, of course, she hasn’t wanted!  Gotta be contrary, if at all possible —- !

This was her moment for the day of enjoying an activity!

This was her moment for the day of enjoying an activity!

So – again – we are asking for prayer –  please pray for Chrissie, who had to miss a meeting last night with a speaker for whom she had waited a year to hear  – and who is now trying to coordinate how to still make tomorrow’s special tea party happen for Sophia, who just turned five – for Jason, who is very worried and, like most guys, just doesn’t know what to do to help plus who is trying to keep work and home at least partly running.  Pray for everyone who helps to take up the slack in caring for Emily’s brothers and sister. Pray for the doctors and nurses and other staff who are supporting Emily in her fight against this bug, whatever it is – and who wrap their arms around Emily and her family every time she is admitted.  When Emily got to the regular Peds floor last night, her main nurse, Nicole, had a Princess movie already playing, a Princess toy set up, and had a purple hat, slippers, crown, necklace, and wand all ready and waiting for Emily –  which meant all of the doctors got to check Emily while she waved her wand in their faces! Also pray for her nurse, Nicole, who blessed us last night by coming into Emily’s room before she was moved to the ICU, shutting the door and saying, “you know, sometimes it helps to just pause and take the time to pray.”  So we – Chrissie, Gaby, Nicole, and Grammie – all prayed.  What a special, special blessing.

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AND, pray for our little Emily – that she will remain Stitch and continue to fight to get better.  Last night, as Chrissie was singing “You are my Sunshine” to Emily, she paused in the middle of her coughing and weakly announced, “Mommy, I will be your sunshine every day —-“