The First Update~ Hospitalized Nov 5, 2016

Pink Princess~Halloween 2016

Hazel was admitted to the hospital on Saturday afternoon as she was very listless and clammy and just plain sick.   Here is a recap that I wrote this morning.

When she was admitted she caused quite a stir.

This post is to catch people up that are just joining into this medical emergency for Hazie. 

Hazel has always had difficulty with her veins when it comes to IVs.  Of course that is always the first thing they do when you are admitted.  They had several teams come in and work on her before they got a vein that was good.  Because they are tiny and fragile veins they can collapse after just a few hours.  It was decided to surgically place a PICC line into a major vein so they could just inject medications without worries.  So that surgery was 3.5 hours because they had two big veins collapse before the third was successful.

She was getting weaker and weaker and they knew she had an infection but they couldn't find the origin of it.  Her white count was very high so they started her on a broad spectrum antibiotic.  But knowing the source is very important to making sure you have the right meds.  They ran scans and tests and finally found a nasty bacteria in her stomach fluids.  The had already diagnosed her with septic shock.  It was progressing quickly affecting her whole body.

Hazel has a shunt that goes from her cranium to her stomach.  The  shunt collects excess cranial fluid and carries it into her stomach through an internal tube.  Spinda Bifada kids often have hydrocephalus and have these shunts and she has had hers since she was an infant. They had to remove it on Monday (surgery #2) once they found the bacteria in her stomach. The shunt tube created the perfect access to her cranial and spinal fluids and fed the subsequent spinal meningitis.  They inserted a drainage tube and got some fluid and it looked good.  The problem was that she had already been on antibiotics so the fluid did not produce any cultures after time. In the meantime, she was displaying several symptoms of spinal meningitis so they are treating her for that.

Tuesday, November 8th was really a bad day.  Hazie was not waking up from the shunt surgery as she should have been.  We were frantically trying to get here and Jen and Lowell were with her.  She was still not responsive.  They couldn't wake her up. You can imagine that they were very worried with no response.  Jen decided to run and get the other girls and go and vote when the polls opened before dropping Piper and Chloe at their respective schools. While there, Lowell called Jen to come back quickly to the hospital.  Hazel had gotten worse.  They had put her on a respirator because her breathing was not right.  She was loaded with CO2 because she was not exhaling properly.  You cannot image how long that drive through the desert was for us when we learned of this. 

Still late into the night she was not doing well. But she had improved a little as the respirator helped her reduce her carbon dioxide level.  Lowell said on a scale of one to ten she was just above zero in the morning and at about 2 or 2+ when he left at dinner time.  At 2+ she could not talk or even keep her eyes open more than a few seconds.  Jen asked her to squeeze mom's hand but Hazel could only move her hand slightly with her eyes shut.  None of us will ever forget this 2016 Election Day experience.  There were more surprises than any of us bargained for surely.

This morning Jen called to tell us that things had improved!  We were so relieved.  She was so much better that they removed the respirator and she breathing on her own.  While being closely monitored she was struggling a little but doing well.  She would open her eyes when we talked to her and as we stayed awhile she kept getting better.  It was so fantastic to see.  The nurses in PICU and doctors kept coming in and by the time we left this afternoon Hazel was talking a lot more, responding appropriately and drinking water for the first time.  As if that were not enough they brought her some dollar-sized pancakes and she ate one!  Talk about night and day, it was a miracle to behold. 

She has a very long way to go and another big surgery now coming up to place another shunt in her cranium.  But she is progressing and anything better than yesterday is cause to rejoice.

Now I am going  to editorialize a little bit because you get to when it is your blog.  As we were about to leave, the PICU was having a shift change report right outside the sliding glass doors to Hazie's room. We got to listen to her updated report.  The attending physician was reporting the history of what was happening and the gravity of how she was until today.  She said something like, Hazel has made tremendous strides today but I am not sure why.  Well I know why.  It is because of all the ways in which you and we are praying for her, thinking good thoughts and sending her a lot of love.  So far today all is better and it is already dark so chalk this one up to being good.


I'll give a shorter report daily in the days ahead. Thank you for being such great family and friends. It has helped more than you know.  She is by no means out of the woods yet but progress is a delightful word at this point. BnJ

Eating Pancake