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

Stents & Surgery....&FAMILY

So in the last blog I was not very detailed because SO much has happened in the last month and a half.  I did mention that her head swelled up and she was moved back to the PICU.   Her heart rate was elevated and it effected her breathing rate too.  Long story short she has a clot in her superior vena cava (SVC)--which is the main vessel that takes blood from the head into the right atrium of the heart.  Sounds serious right?

See the large blue vessel at top left?--That is the SVC

They took her to interventional radiology.  They shot a dye into her to get a picture of the anatomy of her veins to see exactly what was going on.  Come to find out she has many clots in her chest and her whole left side was totally occluded.  When that happens your body makes collateral veins to compensate the blood flow.  They tried breaking up some of the clots but were not able to because they were all old clots and had already attached themselves to the walls of the vessels.  When that happens there is nothing they can do.

They also attempted to break up some of the clot in the SVC but once again were not able to. They talked about putting a stent in to help that flow but decided against it.  Since she is a baby and will be growing she will have to have several stents placed as she grows.  Also stents can still clot and even break inside.  Instead they decided that the blood thinner she was starting would keep what flow she did have from getting any worse.

The reason I recapped the whole scenario is because it is happening again.  Her head is swelling and the superior vena cava is having very little to no flow.  I am awaiting cardiology to show up and explain why now they want to do a stent.  I am guessing it is because it has become more of an emergent situation but I just want to hear why they have changed their mind.  A different cardiologist is on service so maybe it is just a difference of opinion.  I will update Sunni's fb page if we decide to go ahead with the stents and then later blog about it after it is done.

On May 23rd, if Sunni is stable, she will be having a pretty major surgery.  Anytime her abdomen is opened it is risky due to all her previous surgeries.  She will have a nissen fundoplication where the top part of the stomach is wrapped and sewn tightly around the esophagus.  This will help tremendously with her throwing up.  It usually makes it impossible to throw up.  The reason she has not had this sooner is because her stomach has never emptied.  She has a stomach emptying test 2 weeks ago and the contrast went through for the first time at a pretty normal rate.  HALLELUJAH! This is BIG news for Sunni.  PTL!

She will also be having something done to her pylorus.  They will not know until they get in there what to do but they want it to be wider so that food could easier pass through.  She does not have pyloric stenosis but the surgeon just wants to give her the best chance possible to be able to eat through the stomach instead of the jejunum someday.  Some of you may have read that she was fed (pedialyte) to her stomach for the very first time a few days ago.  That was very short lived as she started vomiting large volumes.  That was the very first time her stomach had any type of food in it.

She will also be getting another button/tube put in her abdomen.  They want her to have separate G & J tubes.  So instead of having one button/tube she will have two.  I am not really fond of that idea AT ALL but I really trust this surgeon and GI doctor so I will go with it if they think that is what she needs.

So that is what is going on in the roller coaster we call life.  The only GREAT news I have is that my husband and boys will be on their way to Houston TOMORROW!  Shawn is taking a leave of absence from work.  It will not be easy financially but it is what our family needs right now.  As strong as I may be I just can not do this alone anymore.  I need my boys (all 3 of them) and they need me.  I have such a peaceful feeling right now even through all the drama here at the hospital knowing we will be a family for 30 days.  My heart is happy right now.

I can never say thank you enough to the people that have supported us since day one, who have prayed for Sunni, and kept up with us.  It means the world to my husband and I.  

I do not like this pic--but this is what she looks like when her head swells which is worse on the right side of her face than anything.

I love her Sunny disposition!

This is my favorite picture of her to date.  Yellow is her color.

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.