Hospital stay

Alexa has had a pretty rough couple of weeks.  Seems like I've been opening with this line more frequently lately...  On Tuesday 3/28 we were orienting with our new nurse.   As I was doing Alexa's hair the nurse noticed a large raised lump on Alexa's neck.  It was slight pink and about the size of a large grape.  It had grown there overnight.  The previous night Alexa did have about 50 episodes of apnea which is an unusually large amount for her, they also required some very vigorous stimulation to get her to breathe again.  I wonder now if this was her bodies way of letting us know somenthing else was brewing.  Anyway when our nurse (Jeanie) saw the lump she thought there was a logical explanation, but of course there wasnt.  We rushed to the local ER.  I think I was in panic mode.  It's funny because when it comes to pnemonia, her high fevers, and even suctioning I am calm as can be, but this was a new unknown and my heart was racing.  We probably should have just taken her straight to Childrens hospital Boston, it would have saved a lot of time...  I'm going to probably bore you a bit here as I want to document the times we got everywhere so that next time I think going locally will save time I will realize how wrong I am.  We got to the local ER around 10am, and were seen relatively quickly.  We were told we were being transferred to Childrens by about 1130 and did not leave by ambulance until around 2pm.  Just to go to Childrens hospital ER and finally be admitted to the ICU at 11pm that night.  Needless to say Alexa was exhausted.  Childrens is really good in the fact that they do a lot of the testing and IV placement before we get to our room.  (thank you Steve from the IV team who is the only one who can ever get an IV into our Alexa)But still it was a 14hr day.  By the time they were done checking us in on the floor the doctors examining Alexa and the nurse asking all those redundant admission questions it was closer to 1:30 am. 

Through the course of the day Alexa's lump nearly tripled in size, and became bright fire engine red, indicating she was developing cellulitis.  This thing was huge.  They had taken an ultrasound when we first got to childrens ER and said that it was mostly swollen tissue mass and there wasnt enough fluid to drain yet so they started her on IV antibiotics.  I'll post a picture we took of her mass early in the day, just remember it got to be nearly three times this size and had a bright red rash spreading.  They decided to drain it by the next day.  They sedated her and did this at her ICU bedside.  I was able to hold her hand throughout and Kevin watched.  (all set with that).  He said they were just scooping pus and drainage out.  Turns out she had a necrotic lymph node that they removed.  They packed the wound and left a wick sticking out to let it drain.  They also took a wound culture which is very important to see what type of bacteria is growing and what is the cause of this, and helps them to figure out what antibiotic will be best to treat it with.  We were afraid it was MRSA, fortunately it wasnt. 

They started treating Alexa with a broad spectrum antibiotic, but it wasnt doing the trick when they got the results back (not until Thursday) from her wound culture they switched up her antibiotics and we saw a marked improvement literally overnight in her cellulitis.  Each day they assessed her wound and pulled some of the packing out of it.  This was a very painful procedure.  I asked that she be medicated prior sometimes the docs in their eagerness forget that the little ones feel pain too.  One doctor said it was more anxiety based than pain and gave Alexa ativan and tylenol.  When they changed the dressing she was literally shaking in my arms in pain.  I felt terrible.  She is also never allowed to take ativan again as it had the opposite effect on her and was making her climb the walls... literally...  We ended up having to pull the top down over the crib because she was trying to climb up it to get to the monitor screen.  It was bizzarre we couldnt let her walk because she was unsteady on her feet, but thats what she wanted to do.  Needless to say the next day I demanded pain meds and said NO more ativan under any circumstances.  They listened. 

We ended up leaving late Saturday to come home, after persuading them that this is a better healing environment for Alexa.  They had innittially wanted us to stay until Monday.  We needed to come home.  Alexa went on food strike while in the hospital and refused to eat anything by mouth.  She has since started eating her purrees again.  I have to say that when Alexa came out of the hospital her lungs sounded better than they had in a long time.  I think all the strong antibiotics they had her on really helped with that.  This lasted until today and she has again started up with mucus and a rnnny nose...  Wrote this part last Wednesday.  She now has a full out cold again....  Poor baby cant seem to get this to stay away. 

While we were at the hospital Kevin was able to come spend his nights with us.  As Boston is halfway to Andover, this was a blessing.  Although the sleeping arrangements were a bit rough.  If you've ever seen one of the pull out mattress they have you'd understand why.  It's literally about 18inches wide and so thin you can feel each and every spring.  It must of been amusing to all the nurses seeing us try to accomplish sharing this.  lol.  Kaylie stayed with my mom and we were so blessed because a wonderful friend of my mothers was staying with her and Kaylie had a fantastic week.  Probably had more fun with Cheryl than she normally does at home. They even came to visit us one day that week.  Alexa was soooo excited to see her big sister.  She also got to spend some quality time with my nieces and her Uncle Matt and Auntie Mary.  Thank you to everyone who helped out with her it's so nice not having to wory that she will be loved when we cant be there.

We had our nurse Jeanie come again this week.  She is wonderful, I cant say enough good about her.  I thought having someone else in my house for 12 hours at a time would be stressful...  It so wasnt she fit right in with our family, and we were all completely at ease.   I jokingly said that she should quit her full time job and come work for us, I think I was almost serious lol.  Alexa took to her pretty quickly, and was asking for her "Meanie" today.

We are still looking to fill about 20 hours a week.  One of the nurses we had lined up had something come up and isnt able to take on any hours right now.  So we now are going through an agency.  I was so against this at first, but I think this will take some of the pressure off me to find her nurses.  I'll still have ultimate say over who comes into my home.

It seems as though Alexa has been more susceptible to infections lately.  Its scary how things just seem to overtake her.  Her speech therapist mentioned this week that she's noticed a decline in Alexa.  Seeing her everyday its sometimes hard to see a difference.  I know logically she's been having a difficult time, but its one thing to have those scary thoughts and to be able to hide them away.  Once it's said out loud it becomes more true, more real.  I dont know if that makes any sense or not....  I have to just keep remembering to love her one day and one moment at a time. 

Depression seems to be creeping up on me again lately.  However it's been held at bay by the wonderful people we have surrounding us.  It seems like lately everytime I feel like I'm getting overwhelmed or down someone is there to hold me up.  It's the little things, but there have also been some big miracles as well.  We've been blessed to feel love from the people who've known us forever and then from others who dont know us at all.  We appreciate everything everyone of you has done.  I just hope that one day we are in the position to help pay it forward, and help somebody else when they need it most.  Thank you for making our lives a little easier, making us feel so not alone, and terrifying.