Thursday, February 16, 2012

Ultrasound done...and results are in

So we have heard results from the ultrasound.  Her abscess a week ago was about 2 cm, not quite round.  As of this afternoon it is about 1.4 cm.  So down but slowly. This is because it has walled off and formed a barrier that makes it more difficult for the antibiotics to work effectively. We have had Nephrology (Kidney's) in and they will be consulting with Urology (who do the surgery) and discuss putting in a drain into her kidney to get the infection out.  If they schedule a surgery it may have to wait until Tuesday as it is an upcoming holiday weekend.  Then it will be 2-3 days for the drain to empty the abscess and then they will rescan to make sure it is gone and has filled in with Kidney tissue.  From there they will have her on antibiotics to ensure the infection is gone.  Also Infectious Diseases will be consulted tomorrow on making sure she gets the proper antibiotics and pain medication for her infection.  This route will most likely mean she will be in the hospital for another week but with progress in the right direction.

So all in all we are finally moving in a good direction and consulting with departments that can make things happen faster for Emma.  :)

I will update tomorrow after we meet with everyone!

Update on Emma...Waiting for tests, No change in Emma's condition

Sorry it has been so long since I last updated.  Life has caught up with me so between being frustrated on what is happening here and family life at home it has been almost too much to sit and type something.  Today I am feeling a little less stressed, enough to write something.

Emma has been having a hard time still sleeping at night and still more issues with pain.  In the past 3 days,  she slept a few hours 1 of the nights and that is because they gave her Gravol to sleep and help her nausea.  The team of Doctors said Tuesday that they were under the impression that we wanted to leave ASAP and not wait for things to get done...not sure WHO gave them that idea because I don't want Emma leaving until they manage her pain and we know the abscess is going away and the meds are working.  They then said, Yes we would prefer she not leave until she is better and we have a concrete plan with the treatment being successful.  Ok...GOOD.  However, her pain is still a 9 out of 10 without any meds and a 7 with meds so not enough relief in my opinion.  This has been 3 weeks of pain and no long lasting relief.  She had some success with IV pain medication but they are shying away from that again.  If she is dependent on her IV for pain relief they will not let her go home.  I can understand that.  However the Toradol they are giving her that provides the most pain relief,  she can't take home with her.  And so that leaves Emma in pain still.  Hence y BIG frustration!  Up until last night the nurses have been really good. Last night and today her nurses are not giving her the medication she needs in the right amounts and at the right times.  We have relayed the information to the doctor and they will be following up on that.  They said she has standing orders to get medication at certain intervals and she should be getting them.  

Emma is scheduled for her Ultrasound this afternoon.  They will be comparing this one to the one done a week ago to see if there has been any changes.  If there is significant evidence that it is getting smaller AND her pain relief is managed well, then they will discharge her most likely.  She will continue on the IV antibiotics done by the Visiting Nurses once daily and have a follow up in another week.  If it is bigger or the same and her pain is still high, they will have Nephrology (Kidney Doctors) come in to discuss options of surgery to completely remove it or putting a needle in to drain the infection.

This week has seen the Paediatric Floor she is on fill up so there is also a push to get the "less urgent" patients out.  This doesn't sit well with me or other parents I have talked to on the floor.  That is what we get when we have a Universal Healthcare system in Canada that is a bit broken and overcrowding in the hospitals is an everyday occurrence.    It is typical for an adult to wait in the ER for 6-8 hours before being seen by a doctor.  It is also typical for an adult to have to spend several days in the ER in a bed there before being sent up to a room because they don't have the admitting beds available in the hospital.  So there is a trade off in care and payment.  We don't have to pay for being here however we have lengthened time for certain procedures and things move much slower.

Emma's spirits have been quite low that past 2 days.  The whole ordeal for her has become overwhelming.   I think she is just "done" being here but can't leave because she is not better.  We are praying for her recovery to be quick so she can get home to her own bed!

The doctors just came in as I was typing and they are not happy with what has been happening for her pain management and what happened overnight should not be happening, even on a busy floor.  They are moving toward a resolution today we should have more information to make a good plan...FINGERS CROSSED!  I will be monitoring her pain medications myself to ensure she is getting what they have ordered when they are supposed to do it.  The doctor made it clear that he wants to see a major change in her abscess and  her pain reduced before he allows her to go home, full floor or not.

I have been thinking a lot about being a mother, having a sick child and the trials we go through in our lives.  A friend I talked to on Tuesday reminded me that we all have to learn the same lessons.  We just experience them differently.  This trial has helped to strengthen my relationship with Emma and has forced us to spend a huge amount of time together...not so bad!  Still pondering the lessons and growth our family has had to go through in the past 2 years with my Mom and her Cancer, then my marriage, then my job loss and now Emma's health.  Just a lot to deal with.  However I know that through the last 2 years I have been supported and strengthened by those around me and I am a stronger woman going through this than I was before.  I am a "Tough Broad"!  LOL!!  I wake up and get out of bed, putting one foot in front of the other...Keep Moving! (That is what My Mom would have said..."KEEP MOVING!")

I will update after we get the results from her test this afternoon.    I am grateful for the continued support and love we have been shown!

Sunday, February 12, 2012

It's Anniversary Day...though I wouldn't say it's a happy one...

Today marks the 2 week anniversary of Emma's illness and the 1 week anniversary of her being admitted into the hospital.  As the one song I remember from my childhood goes...Happy Anniversary, Happy Anniversary, Happy Anniversary, HAAAPPYY Anniversary!...Well, This is NOT the kind of Anniversary we want to "remember".  It has been a snowy day.  We didn't get shoveled out until this afternoon and got to Emma about 2 pm.  She has had a medication change and was given Toradol in her IV for the pain.  This actually has worked in bringing the pain back down to a 3 out of 10!!!  The lowest in pain she has been in since this started 2 weeks ago.  She is also taking Morphine in between the Torodol.  She has excellent nurses who now know Emma and have mentioned to me what a great kids she is and how they just LOVE her kind of patient!!  :) That's our girl!  They have also come to realize that she is not a complainer and won't ask for anything unless it is DIRE! Today her lovely nurse Rebecca told her to start complaining...she said she meant if Emma needed something to ring for her don't wait!  Rebecca has also had kidney problems for many years and understands what Emma is going through.  It is reassuring to know that Emma is in good hands!

The weekend Doctors had not much to really say just checked on her.  Her normal team in the morning will be the ones to tell us more from here and to get my questions answered.  For now we wait again but waiting with a purpose is great!

Ethan and Julie came up this afternoon to see Emma.  Julie was excited to show Ethan all around.  It's crazy to think that my 4-year-old is able to know her way around the floor. Ethan was looking forward to seeing Emma since it has been a week since he saw her last.  He was so happy and there were lots of hugs and smiles!  Both kids have been great here on the floor.  Emma's roommate has been recovering from her surgery yesterday and the kids are quiet as sleeping mice!  No complaining or fighting...It's amazing how much they really can sense on this floor.  They both know that there are sick kids and little babies here and they need their rest!  We will be going to the children's play area today with them.  Should be fun!  They are also coloring and enjoying time with their sister!  I LOVE my kids and LOVE how they love each other!  

Today's visitors have been Grandpa Salt this morning and the Condron's this afternoon.  It has been good for Emma to have visitors!   She is feeling the LOVE~Our hearts are full of gratitude!

Saturday, February 11, 2012

Saturday...Day 13

Not a whole lot of news to report today.  Emma had a rough night and didn't sleep much.  She has now been given a higher dose of morphine and is getting it regularly however it has not taken the pain away. Her pain is still quite severe.  The nurse just came in and is going to have Emma reassessed for pain and hopefully they can find a dose that works to give her the relief she needs and still limits her side effects.  The doctors who came in today and have said that they want her in the hospital until at least Wednesday on IV antibiotics and then have another ultrasound done to ensure the treatment is working to shrink the cyst.  If it is not working then the doctors will look at surgical options to either remove it or drain it.  We are hopeful that the medication will do it's job and she can return home middle of next week.  She will still have to have a Visiting Nurse come to the house once a day for IV meds and will have to miss more school until she is completely better.  Luckily the school is compiling her homework and she will be able to work on it and not miss too much!

Today we are expecting some visitors and that is awesome!  Emma loves the company! :)

I am amazed at the technology these days and grateful that we are able to have this blog to keep our family and friends updated on Emma and her recovery! :) It also will make a great memory book of this time in her life for when she is older!

We will update with pics of her day later!

Visitors today were Bishop Hill, his wife Cassandra, Mike and Shannon Bridge, Alex, Amanda Dejanovic and their kids, Tate, Max, and Quinne.  Emma loved having all of them here today!

Friday, February 10, 2012

Finally some answers!

Julie and I came to be with Emma today.  She had another blood test and ultrasound on her kidney.  We didn't see the doctors until later on today.  Her IV needed to be replaced as the port was not going into her vein and it was no good anymore.  So she is now IV'd on the other hand.  :( Yuck!  More pokes! 

Today we had surprise visitors~ My sister Heidi and her husband Tom came to visit for the afternoon.  It was good to see family from Michigan!  <3 They brought goodies from Tina's bakery (of course!)  YUM!!  and Lots of Hugs and Loves!  Emma now has Valentines window stickers on her windows which brighten up her room!  It almost feels like a bedroom if she didn't have so much medical equipment in here!  Julie had a great day showing Uncle Tom and Aunt Heidi around the floor of this wing.  She had them in the playroom and made everyone "fake" Food to eat!  So cute!  

This afternoon, 2 of the doctors came in and said that the "area of infection" they were noting on her kidney yesterday is now walled off and a cyst. They did not give a size. They said treatment will be IV antibiotics for the full 14 days and managing pain here in the hospital.  They will do a follow up ultrasound at the end of next week.  Once they release her,which is sometime next week, they said we need to come daily for her antibiotics.  They are also checking if they need to do a dye test to see if she has reflux in her Urinary Tract that would make her more susceptible to this again, as I asked if they could recur now that she has had an infection in her kidney.  She will also need to do a follow up ultrasound to check for scar tissue down the road a few months after her cyst is gone.  She is still having pain and with the morphine it is still a 6 or 7.  They are hoping that the treatment with antibiotics will shrink the cyst and she will start to get some pain relief.  She will continue to have pain until the cyst shrinks.  I will be emailing a friend of ours who is a radiologist again to let him know she had a new scan and get his opinion on it. It is always good to get a second opinion.  

We had Paula and Todd come tonight and bring a LARGE variety of movies to go with the ones they brought yesterday along with the DVD player.  Daysen helped pick some out too!  She will have no worries with boredom as there are some great titles here!  

So that is the news from here. Tonight,  I am going to have a movie night here with Emma tonight and a snuggle then head home and come back again in the morning!

We are so overwhelmed by the outpouring of love and concern for Emma and our family!  We have amazing friends all around us!  Thank you Thank you Thank you!!!

Thursday, February 9, 2012

Thursday Update

Today was the first day Justin could come and visit due to his cold.  I was so happy to have him here to ask the hard questions and get some answers.  He was pleased with the responses they gave, with their knowledge of her case and with their plan to go ahead for right now.  Today we met again with Emma's Doctors and have more information.  The report back from the Ultrasound combined with the MRI plus having a kidney specialist look her scans over they still are unsure.  They have said the "spot of interest" is more of an inflammation they think but it is still not clear what is there.  They want to do another ultrasound tomorrow as it will hopefully give a more clear picture of what this is.  They want there to be a day between tests to see if they will see a marked change with her medication and condition.    If they still see something but not clearly they will then do a CT scan of the kidney to see if they can see a more outlined spot.  They are also going to do another blood test in the morning to compare her numbers to yesterday's blood test numbers.  Depending on their final findings we would have many options for us but for now we are on wait and see.

Emma is in good spirits, very tired and having some bladder issues.  The Morphine they have her on seems to be helping her pain and it is now given to her on a regimented basis.  Her pain is still at a 6 with the medication but she is able to get in some naps during the day.  

Emma had a busy and tiring night yesterday.  She had many visitors and has been glad to see other people besides her Mom, the doctors and nurses.  Emma had Jake, Mackenzie, Gabby and her Mom all come visit and cheer her up.  She got caught up on all the high school happenings with everyone.  Then she had the girls from church come to visit and they brought her goodies and cuddlies and a pillowcase that they had all signed. After the party calmed down and they left, our Bishop came for a visit and also gave her a blessing of comfort. She settled down soon after and did sleep a little last night.  She has a few symptoms returning but they are not concerned about it as they expect some symptoms with the inflammation.

Emma and I are just going to make today a cuddle day and have been snuggling in her bed.  I am hoping for her to get some sleep today during the day.  But for now we are in here to stay until this is figured out.

I will update you more tomorrow!

Wednesday, February 8, 2012

Wednesday Update...We have News!

Aunt Tina, Uncle Kevin and Sophia sent Emma a beautiful flower arrangement and a BIG basket of snacks and treats!  It definitely cheered Emma up! :) 

Emma had another rough night, made a bit worse by having a baby for a roommate. The parents were loud and fighting  and the poor baby was crying so it was hard for Emma to stay asleep. Her pain also jumped in intensity so they finally have given her morphine for pain and it has cut her pain in half! HALLELUJAH!!!! Freak...10 days of constant pain just sucks! I am so glad she feels a bit better today.  When I came in today she was napping which was great to see! 

Julie, my littlest (4) came with me today and they have had her painting canvases and doing activities. She also has access to Emma's TV screen and can be on the computer and watching TV.  The sisters are glad to be with each other again!
 Julie even has a bed set up next to Emma.
The hospital is great! If this goes for more time they also offer a tutor for math and other subjects to come and assist Emma with school.

****Just got the results of her MRI that was taken yesterday. Not a full report yet but the call came from the radiologist to her Dr and they said she has "some spot" in the area of her kidney that they need to see more clearly and her opposite hip has a dark shadow on it and they are also looking into that. They will do an ultrasound today hopefully now that they have an exact location and can see if it is fluid filled or more tumor like. From there they will either treat a cyst/abscess or biopsy a tumor. 

As her Mom, this has been super hard for me to watch my daughter be in constant pain and not have something help to relieve it or be able to relieve it myself!

So now we wait again but at least they know there really is an issue and are working on taking care of it.  I will update when we know more.

Our Favorite Sister Pat came today with lunch and had a nice visit with Emma.  It is wonderful the support we have received from the Relief Society Sisters at church and the meals that have been provided to our family at home while I am here with Emma.

Much Love!!

Tuesday, February 7, 2012

Tuesday Afternoon

The team of Doctors have come in and talked to us about the ultrasound findings.  There is nothing significant that they can see.  They have called a OB-GYN to consult on her case just in case they missed something and also will be ordering an MRI shortly.  We have talked to the consulting Dr and she just assessed her, asked a ton of questions and left.  The MRI may take some time to get as we have to wait for the machine to be free and urgent cases take precedence over Emma's case.  The MRI will show the most information and hopefully from there they will be able to tell what the cause of her pain is.   In the meantime, Emma has a new roommate.  She is a little girl about 10 months old.  Hopefully she is a good sleeper so Emma can get some sleep.  Shen(Emma) is getting ready for her afternoon nap now.  More updates later tonight.

Tuesday Morning

This is one of the 2 things Emma does while she is here...the other one is sleep!  Today Emma woke with some more pain.  She had another hard night with little sleep.  They finally gave her Tylenol for pain but won't give anything else that might mess with their testing.  The Tylenol just takes the edge off the pain but doesn't take it away.  :(  She did get up and had a shower today which was good for her to get out of bed and move a little.  Maybe that will help her sleep this afternoon.  On a bonus note: the view is not too shabby and covers the whole city core.  Sunset and night are nice. I am now just waiting to have the doctors come as they are doing rounds this morning but it seems particularly busy today so not too sure when they will be here.  I will update after they come.  Thanks again for all the love!  <3

Monday, February 6, 2012

Monday Night

Well, not a whole lot more news.  The only update is that Emma is now in more pain.  A 9 out of 10 now.  We are waiting to see what they can give her for it.  She also has been getting warmer, not what they would call a fever but her temperature has gone up another degree.  She is sleeping now and hopefully will be able to get some comfort tonight.