Not prepared....

Yesterday (May 17) Sunni had 3 stents placed in her SVC;  a vessel going into the heart.  During the procedure she had to get a blood transfusion due to blood loss which is not that uncommon.  They thought they had gotten them successfully placed as seen by ultrasound of some kind.  After the procedure they were not able to get Sunni off the ventilator.

Supposedly they did not anticipate her having to go back to the PICU afterwards but I believe they had to have known.  They told us before they took her that the procedure was going to take about 4 hours and it did.  They said with her being intubated and sedated that long they did not feel comfortable taking her off.  And then they decided that they were going to have to keep her sedated because they did not want her moving her leg.

The size of the incision on her left leg (that is where they gained access) was too big and if she bent it and moved it around it could cause more bleeding.

Also the night before the procedure her picc line stopped drawing back blood.  Several days before that we noticed that her picc line leg was swollen and turned red when she was upset and the other leg stayed normal.  It also was also hard to get blood at times and not others.  They did an ultrasound to check for clots at that time and were unable to find one.  Right before they took her back for the procedure the picc line had totally come out and was leaking everywhere.  During the procedure yesterday they found a clot in the vessel but were able to place the line back in.  It however can not draw back blood.  Before she ever went I asked probably 6 people to PLEASE not bring her back without a line that draws back.  Go figure!

So the answer to that dilemma was to put an art line in her wrist.  Sunni does not had a good history with art lines....they do not last but a few days. So when that stops pulling back I am not sure what they are going to do.  For the clot at the picc line site they are putting her on a constant heparin drip hoping to get rid of it little by little.

Currently she has a ton of drips going.  I will post a picture to show you.  She is getting SOME formula, TPN, lipids, sedatives, and a paralysis drug to keep her still.  Since she is on a paralytic she has a foley catheter as well.  And that is not even including the 15 other meds she is on.

The only time she was on this many drips was on her first week of life.

She is very, very swollen.  The picture does no justice to actually seeing her.  She is probably at her biggest right now. She is connected to more tubes and wires than I have ever seen her on.  We were told she would be extubated today but her xray did not look good and neither are her numbers or gasses.

So swollen.  Poor Angel

They made it sound like this procedure was going to be a piece of cake for her.  Supposedly they did not even intend on her having to go into the PICU.  We are upset because it seems like she is at her worst and we were definitely not prepared for this.  They are allowing our boys back but only 2 people can be at the bedside at a time.  So we are still not able to be all together.  If we spend time with the boys then Sunni is alone.

I would not be surprised if she is not table to have her surgery next Thursday.  That means even longer in the hospital.  I just thank God that Shawn is here and I am not having to do this alone.  Thank you for your continued prayers....we need them now more than ever.

3rd time in the PICU since April 8