The Cath, Aftermath and Home

Me and Lexi doll early in the morning waiting after registration

Well we just got home a couple of hours ago. I am still sleep deprived, tired and irritable. Alexa seems happy and relieved to be home. It was a very long two days, seems like a week. Her cath went very well, no issues ~ I am so grateful. They took her back at 9:35 a.m. and she was done with the cath by about 11:45 a.m. The doc came out to speak with us telling us everything had gone well and that they found no surprises besides two additional small but still large enough VSD's that require patching when she goes for surgery. Without the cath they would have not known they were there, since doc explained they were very low in her heart and hard to see. Everything else in her heart looks like they expected, her ventricular funtion is good, pressures good, aortic arch beautiful they said however that she has definately outgrown her shunt and it's time to move forward. While we talked to the doctor they performed an echo and then she was taken to the Cardiac ICU.

This is were things got very hard, seeing her in some pain, wanting to sit up, kind of out of it, them wanting her to lay flat for at least 4 hours. She had already been laying down for so many hours I think she just wanted a change. Plus she kept asking for water, her poor little mouth so dry and so I asked if I could at least sponge some water on her lips and mouth and they agreed. Poor little one just sucked on that little sponge over and over till it was dry. I gave some to her a few times. She was very agitated so they kept giving her more sedation until she finally gave in. She slept for a few hours then awoke very groggy but finally they were going to let her eat and drink. She dranke so much water and juice and was so happy to be able to eat. Then I saw her smile again for the first time and I knew she would be okay.

Originally they had told us we would probably be going home that day but then quickly changed their minds. Her oxygen saturations were very low, running in the 60's sometimes dipping into the high 50's. They said they thought it best to keep her overnight for observation. I was sad but ready to spend the night. The night just seemed to drag. I was tired but couldn't fall asleep. I wished it was morning so we could get going. Alexa woke up off and on during the night, we watched cartoons at 4 a.m. then she got sleepy again. My mom spent the night with us and she helped carry her for a little whiles when she would get fussy. Her O2's remained in the high 60's low 70's before her cath they were about 74-78 they never returned to that just for brief seconds then would dip back down. If you see my previous post you will read how they warned me this might happen but I didn't think it actually would since they said it was unlikley. I was sad for knew this meant she would more than likely be sent home on oxygen and a pulse ox which she has never needed since being home and also that this would push her surgery even sooner than I anticipated.

So sure enough we are home and she is on oxygen, very low, but nonetheless we/somebody must be following her around at all times to carry her little portable oxygen tank everywhere she goes. That is a job. My hubby and I have been taking turns. Thankfully she has forgotten about the canula on her nose. I am waiting for them to deliver more of her oxygen tanks and pulse ox they did not give me.

So that's pretty much were we are at. We have an appointment to meet with her surgeon on Friday. It was hard going through this with her and it was only two days and it was only a cath. I am definaltey not looking forward to the initial aftermath of open heart surgery with a toddler. The only thing that keeps me going is the thought of being home with my baby's mended heart and not having to worry about her sats anymore, she will feel strong and happy again.

During our hospital stay we met a lovely couple, mamma named Neale, 'Hi Neale, it was nice meeting you guys, you made our wait more bearable ~ hope you are able to resolve the issues with Mr. Nicholas!' Also, ran into a former coworker who was visiting her grandaughter at the hospital who was diagnosed with Leukemia about a year ago. I will be praying for you. Also, thanks to my family for your support with our older kiddos and for visiting, thanks to Nana for spending a semi sleepless night with me and Lexi in the hospital, thanks to my friend Cherrie and hubby for the great gift for Lexi and lunch and thanks to all my friends and heart mommas for your cyber love notes. We appreciate all the positive thoughts and prayers offered on Alexa's behalf.

So needless to say, I am SO happy to be home and to have gotten through this now it's time to wait yet again for the next BIG step ...

Alexa looking adorable in her hospital gown and pointing to a dog she thinks is Dash (our dog) on TV

Having a blast in the kid's play area, she said "Wow!" when we set her free in it (before cath).

Today trying to keep her entertained, took a bunch of toys and books I went through all my arsenal.

And the awful last pic of her sats without oxygen {for the record}.

p.s. and sorry but I don't know what happened to my spell checker it's gone for some reason.

Heart Catheterization Date

Since last Thursday I knew they would be calling.  I was a bit anxious every time the phone rang and didn't ring.  I called today myself to make sure I wasn't suppose to be the one calling, they said no, they would call but would be more than happy to transfer me to hospital procedure scheduling so I could speak with them.  I said 'sure' and hung up.  I was scared.  Scared to bring this day on any closer than it needed.  Scared to actually have to put it in writing in my calendar.  So I nervously took a breath and waited some more.  A bit happy to have escaped facing this for a little longer - although I knew it was coming, they would be calling.   

The call came as I was driving to rehab therapy for my leg. I quickly parked and messed with my crutch and pulled out my planner.  I had already thought of some dates I wanted, early in the week so all the normal docs are there and I still had a whole week of normal business days ahead of us in case I had questions or needed to take Alexa in to be seen for some reason.  Also, not to soon, but early enough to have the cath results ready for our consult with her cardiothoracic surgeon on January 22.  Well, they said they only had Friday, January 15th available, this would give enough time to get the info to her surgeon but alas not provide me the reassurance of the 'regular business day' instead it's on a Friday, right before not just a weekend but a holiday weekend.  I know it may sound insane to some, crazy, petty but when my child is in the hospital having an invasive heart procedure that will require anesthesia etc.  I want all the top docs present, not home or possibly on vacation.  But I guess I will not jump to conclusions that I will be needing them, instead I will just pray/hope/assume that all will go well.   

So again, Heart Cath Date is on Friday, January 15th check in time 7 a.m.  Alexa cannot have anything to eat or drink after 2 a.m.  The cath should last about 3 hours.  She will also be given an echo while she is out.  The scheduler told me they would most probably be keeping her overnight for observation in the PICU.  So I have to plan on sleeping in the hospital that night with my baby.  I'm hoping she is doing fabulous they let us come home but I guess we shall see.  Did your kids need to stay over night?  Her cardiologist also mentioned that, sometimes, but rarely, the children come out of the cath lab with lower oxygen.  He said if this happens he would send Alexa home on oxygen and we would have to schedule her surgery sooner.  Hope again, this is not the case.

Now, why does Alexa need this heart cath?  Well, this is to provide information to the surgeon before surgery on the inside workings of her heart including pressures and blood flow.  During surgery they cannot collect this info as the heart is stopped and not beating. 

It hurt's to type those words. 

To think of my baby's beautiful heart being stopped and not beating is VERY SCARY!  So very sad.

So anyway, that's all I can take talking about right now.  I need a break from these thoughts and to have some lunch.

As a side note, therapist thinks it will take me about 12 weeks to be able to walk normally again.  He said I have lost a lot of flexibility and strength in my leg.  He said I need to get it to neutral position meaning -8 to be able to walk again.  Right now I am at 38 degrees the wrong way.  So I have a lot of foot exercises to do.

And one last thought, last time Alexa had a heart cath, back when she was a newborn, she had her artery nicked and developed a blood clot. So another reason why I worry.  Just so you know.