16 days old and best yet!!!

Skye gave us a scare yesterday, but she is stable again and as best as she has been yet!! Praise God.

So, she had successful surgery on Tuesday (intestines, stomach & spleen moved back to abdomen & diaphragm patched), came off ECMO on Wednesday and had a good Thursday.  On Friday they started removing the meds she was on and her body did not like the idea. 

She started having a really hard time breathing and the gasses in her abdomen were not helping or contributing to it.  They had the current breathing machine maxed out, but there was a different breathing machine that puts the oxygen in harder and faster.  This has worked!!!  So, she is currently on this new machine (not maxed out) and the meds are up again. I think they are going to try a slower approach and when she can come off this new machine, a lot more progress can be made.  But, the nurse today said that she is stable and doing well.  We hope to have gradually increases and if any only slight set backs, not huge up and downs, like yesterday! She is not a candidate to go back on ECMO, so let's pray that it doesn't go back that far.

I went down and spent some time with Coral and Skye.  Skye was awake!  We spent about an hour+ in her room, then went and got coffee at Starbucks on the first floor and then spent another 1/2 hour+ with Skye again before we both left for the double birthday party at my parents.  I think Coral had a good time and appreciated all the kindness from all of you that were there.  She is feeling the love!!

Here are the pictures from today; 16 days!

Look at her holding on to Mommy's finger!!

Set back

Skye has been doing really well up until mid day today.  At some point today she started having problems with her breathing.  They switched her breathing machine late this afternoon around 3:30.  Then at about 6:30pm I got a text from Coral that said she is having a really hard time with her lungs and they are trying everything they can to help her. They are worried about her.  Please pray for her! 

She said she didn't need me to come down tonight, but I told her to contact me day or night if/when she needs me, so please pray that she will do that if it ever comes to that.

Off ECMO!!!!!!!!!

That's right, Skye is off ECMO!!!!!! 

It is so exciting and such a big step.  She has been doing well since getting off it today.  The only issue is high blood pressure, which needs help, but otherwise it's going well. 

Now lets just pray that she doesn't have to go back on it!  Praise God for another good day and milestone.  :)

Surgery Day!

A successful surgery was performed today!  Surgery started about 11:30am and got done about 3pm. 

I don't know all of the details of what exactly went on during surgery, but my understanding is that the surgery was to put the out of place organs back to their correct place, like her intestines were up by her left lung.  The surgery was also to patch the hole in the diaphragm.

I'm sure we'll find out more specifics on what they found out during the next days/weeks.

Coral did say that everything looks alright and she did well during surgery.  And, she might come off ECMO tomorrow!

Praise God for a successful surgery! 

Good trial today!

The trial test they did this morning went really well so they might do surgery in the morning. 

That's all I know today!

9 days old!

I got to see Skye today!  She is looking good.  She was even awake for a bit when we were there; such a precious little girl!  She is still stable. 

They changed the circuits yesterday on the ECMO lines.  This is something that has to be done periodically, and having it done for the first time at 8 days on it was very good the nurse said.  The longer the better, and 8 days is pretty long.  Sometimes it has to be done at 3-4 days.  They need to be changed because of build up, oxygen and clotting. 

There is a transition period after they are changed so the next couple of days or so will hopefully be uneventful.  Then they can start testing her again for surgery. Once they get in there and can see exactly what is going on (how big the left lung is, how big the hole in the diaphragm is or if it is completely missing, etc) will give the docs a much better picture and idea of what is ahead.  The nurse was explaining this to us today a little bit.  A bunch of variables play into everything, so it is not necessary super bad if one comes back on the worse side if something else isn't as bad, if that makes sense. Often times one of the problems is pulmonary hypertension (I think that is what it is called), where the blood vessels around the lung shrink down and squeeze  the lung, so even if it starts to get bigger the tightening of the vessels prohibits the growth.  So she is on meds, Viagra to be exact, to hopefully stop this from happening.  It increases blood flow to the vessels in hopes of keeping them loose....That is just a little of what the nurse talked to us about today.

I then took Coral and her mom to the grocery store and then took her mom to the train station to go back home.  So now Coral is here by herself, so please pray for her.  I am going to hopefully go and see her every weekend and sometimes take her somewhere to get away from the house/hospital area.

Here are the pictures from today!

Our sweet angel!

 She was awake today!

These are just some of the machines monitoring Skye!

Mommy!

Grandma!

In God's time!

No surgery today.  The "numbers" were not where they were supposed to be.  I was actually kind of surprised that they were even talking about surgery already.  Last Sunday the nurses woudn't talk about it and the general explanation was always at about a couple of weeks or so maybe.

I plan to go visit tomorrow.  I plan to take Coral on some errends to get groceries, etc, visit Skye and then take Coral's mom to the train station in Everett to go back to Montana. She hopes to come back periodically too.

That's all for now!