It's been a While....

It seems like I am always apologizing for the lack of updates....but this time I feel like I have a good excuse.  Since coming home from the hospital (and going straight back) life could be described in one word; hectic.  I will just start from the beginning and give you a brief(ish) Cliff Notes version of our lives since the last post.

We brought our little bundle of Sunni home on March 7, a day after she turned 5 months old!  I knew home life would not be easy but I had no idea it would be that hard either.  When we first arrived home my youngest son had strep throat so we had to keep Sunni upstairs with her older brother and daddy and I took care of him.  Shawn happened to be on his 7 off (PTL) so we took turns sleeping watching Sunni sleep.  Shawn bought a cot and we "sleep" right beside her in her room.  

She was on 6-8 meds at a time which are given around the clock.  She is also on continuous feeds so you have to keep that milk bag filled up every 4 hours.  So as you can imagine it was not conducive for sleep.  We were on the nicu's med schedule when we first came home which was a nightmare because none of the meds were given together which kept us up a lot at night.  We finally had a home health company come and help us 5 days a week for 8 hours a day.  They helped up group her meds to where we only had to get up at 10, 2, and 6 for meds.  And we TRIED to get the milk on that schedule too but it did not always play out that way.  I think Shawn and & I were both missing the nicu very badly.  I never thought we would!

 Once we got home Sunni started throwing up more and more and more to where it was about 30 times a day and it was burning her cheeks and her mouth would bleed.  That precious girl would still smile between the throwing up.  We spent 2-3 days a week at the doctors offices, hospital, and specialists the month we were home.  We also made a trip to Houston around Easter to try and figure out the throwing up.

It was a very hard month at home but at the same time it was good.  I got to enjoy all three of my kiddos and watch them interact.  I got to say hi to my husband outside of the hospital setting.  We were all under the same roof. 

On April 6 my super wonderful friends threw Sunni & I the best baby shower EVER.  She made a haul with tons of cute clothes, diapers, toys, and accessories.  A lot of preparation went into the shower and a lot of love.  It meant the WORLD to me.  

Sunni was throwing up all day every day at this point.  She was very miserable and not really herself.  She was not happy like she had been and I noticed that her head was getting bigger and bigger.  It donned on me after the shower that Sunni probably had hydrocephalus.  We decided that the next day we were going to have to do something.  Shawn was going to drive Sunni all the way to Houston by himself. Thankfully one of my friends asked if we had heard of Care Flite, which is kind of like ambulance air.  We called them and they came to pick Shawn & Sunni up and flew them to Houston.  Thank goodness for that!  That would have been a really miserable car ride.

So Sunni was admitted to the hospital (same one she left the month before) on April 7.  They immediately found the hydrocephalus in a CT scan and then she had a fast MRI to confirm.  We had hoped that that was why she was throwing up so much because that is one symptom.  

On April 9 she had brain surgery.  They did a "Third Ventriculostomy." http://neurosurgery.ucla.edu/body.cfm?id=428  Read that if you want to know more about it.  It is an alternative to having a shunt placed.  They decided a shunt would not be ideal for Sunni since they typically drain to the chest area or abdomen and those are both trouble spots for her.

After surgery she came back NOT herself at ALL.  She was screaming frantically and scared.  She did not want to be touched or even talked to.  She was having a hard time breathing and started getting fevers.  Shawn & I tried really hard to comfort her but she was not having it and was in a lot of pain.  We were very worried.  When she was not throwing a fit (which she has never done to this extent at ALL) we would try to get her to smile and she would not even grin.  We kept telling the doctors this is not how she is and is not the same baby we sent in to that OR.  

If you have been following me on fb you know that we have been having a LOT of problems with this hospital and after done here we will never return.  NEVER.  Just so you know the NICU here is fabulous and the picu has MUCH to be desired. 

This month has been by far the WORST of the last 7.  It has been far harder than her ecmo days.

The neuro surgeons would not acknowledge our concerns and said everything was normal.  She started getting the fevers so her general team wanted to do a spinal tap and put in a picc line at the same time.  The neuro surgeons said not to do the spinal tap because the findings would look funny since she just had surgery on her brain (everyone's does afterwards).  They did it anyway.  So yes, they thought for 3 days she had meningitis and it turned out negative.  During the wait it was like a battle between the team and the surgeons and whoever won would get to celebrate.  Then her head started swelling due to a clot in the vessel that takes blood from the head to the right atrium of the heart.  This was caused by her being more susceptible to clotting and because if the picc line they put in her arm the day before.  The maddening part about that was that I did all I could short of begging to not get the picc line in her arm AND I told them she had clotting trouble in the past and the doctors would not listen to me.  Argued even.

She was moved back to the PICU after her head started swelling.  At this time they did not realize the clot was due to the picc line in the arm.  When the finally figured it out the doctor told us they needed to move the picc line from the arm to the groin.  Since she was going to have to be intubated and sedated for that they were going to coordinate it with an mri.  By coordinate we "thought" they meant as in coordinate with time so that she would be intubated for the littlest time possible.  Instead she was intubated at 9 in the morning, the picc line was done right then and she was not taken back for mri until 10 o clock that night!  I was FURIOUS!!

When she finally got back from MRI they could not get her off the ventilator because her gasses were bad. She was not extubated til the next morning.  I made sure they knew my frustrations how angry I was.  I am actually still fuming about this (3 weeks later) and they have not heard the last of it.  She still has not been able to get off oxygen.  Their excuse was that emergencies came up.  There is more to the story but it is not important.  That night I told them I wanted to talk to the highest up person they had at the hospital.  They told me someone was coming but they never showed up.  I tried calling a patient advocate but they had incorrect information written on their bulletin board.  So the next morning I was sure to be up and ready at 8 am.  

We ended up having a meeting with the nurse manager, a case worker, patient relations and a few others.  We had been very unhappy with the whole hospital stay and we just layed it all out on the table with the major complaint being what happened the day before.  We were assured we would see change and then the doctors came in.  One was the attending that Shawn yelled at about an hour prior.  I thought they were there to address the issues we had been having with them instead we were hit with devastating news.  Sunni had another stroke and it had done some more damage to the brain.  There was also some bleeding in the brain.  I was upset and mad.  I will never know if all of this could have prevented but I decided not to live wondering so I am just moving on.

After all of this they wanted to start blood thinners to try and help the clot.  That came with the risk of possibly making the brain bleed worse but they believed that the blood could be residual from her surgery.  They started heparin and kept an eye on it through ultrasound.  After a few days they decided it was not helping enough so they wanted to send her to interventional radiology to get the anatomy of all her veins and to possibly remove the clot.  When they got in they found that the main veins in her left side were totally occluded and had already made collateral veins.   There was nothing they could do about the many clots because they were old (formed over a long period of time) and were now a part of her veins.  

That news was pretty hard to take as I was by myself and not really sure what it all meant.  They stopped heparin and started Lovenox which is a daily injection of blood thinner that she will be on long term.  They started lasix, a diuretic, 3 times a day and that took the swelling right off.  In fact she was very dehydrated.  She had lost 3 pounds!  They did not even weigh her until I asked.  She looked terrible.  She was able to get off oxygen for a few days at this time due to being so dry.  We were told on a Thursday we were getting out of the picu.  In case you are wondering why is sucks so bad in there it is because the nurses are not friendly or helpful, the doctors do not listen to parents AT ALL, you can not eat or drink, you can not shower, it is loud, and just a high stress environment.  There is no sleep in the picu.  This was very hard on me.  Definitely the worst time of my life.

So Thursday came and went....then Friday, Saturday, and Sunday, and Monday.  Monday night I had had it.  I decided to find out why Sunni was still in the picu.  She was not on oxygen and did not require "intensive care." Also--Sunni's GI issues were ready to be tackled now that everything else had kind of went away.  GI had not came to see her in 5 days.  I was really upset.  It seemed to me like we were shoved to the side.  I asked to talk to the charge nurse and a doctor....I was not my sweet self, that is for sure.  An hour later we had a room; and an hour after that GI came by.  Squeaky wheel gets the grease, I guess.  And then the next morning Sunni's pediatrician accused me of having hospital psychosis and told me he was going to send someone in to see me.  (No one ever showed up).

So since all that drama GI has exhausted every possible medicine trying to figure out something to help her throwing up.  Nothing has worked.  So next week we are looking at surgery.  I think we will get more of a solid plan tomorrow so as soon as I do I will post again. (Maybe, lol).  I talked Shawn into letting me bring the laptop because I was informed people needed a blog update.  Sorry Yall!  If you do not follow Sunni's Story on fb please do.  It is a lot quicker to update on.  When I start writing things with my iphone it is really hard to read.....I am sure you are all nodding your heads in agreement.

I got to go home last week and spend the week with my boys while my husband stayed with Sunni.  It was MUCH MUCH needed one my end and theirs.  I feel a lot better now.  Hopefully this surgery will get us home.....soon!

Sorry for the lack of update and for not giving up on us.  We appreciate your support, as always.