Eliana's pre-op went well today. I could tell prayers were answered as things went very smoothly and I was amazingly calm. We were able to read some scripture on the ride over to the hospital. None of those "moments" (tears/worry/panic) that I've been having really happened today. Here is a look at our day.
- 9:00am Leave home
- 9:30am Arrive and check in. Start Eliana's feeding tube. Get stats - weight, height, bp and temp. She has continued to gain weight and is up to 11 lb 9.6 ounces.
- 10:15am - Labwork. Has an blood draw from her arm. She is NOT happy about this at all and cries for a long time (for her) afterwards. Not sure what all they checked, but do know that her thyroid function came back as normal. Yippee!
- 10:20am - EKG - She is still crying and still trying to finish up her feed. She will not be consoled or distracted and it's hard to get a good reading. She has 12 leads attached to her body - most on her chest - and some fall off at various times. We do finally get a read and can leave.
- 10:45am - X-ray of her chest. She is calm now and doesn't mind this at all! She gets one x-ray from the front and one laying on her side. The tech tells us afterward that she has a lot of air in her stomach and needs a burp. We asked how she knew that and she replied that she could see it on the x-ray. (We knew it was from crying for so long - while feeding!) She asked if we would like to look at it and we said yes. She showed us the various images and we could even see her feeding tube going through her esophagus and into the stomach. Kind of neat!
- 11:20am - Meet with two nurse practioners who start to take a medical history and ask a wide variety of questions of Eliana. They also do a physical exam of her. She looks good! During this time she asks if we have a preference for Eliana's surgeon. Roger tells her Dr. Jaggers. He will be doing Eliana's surgery. (Please pray for him!)
- In the midst of meeting with the Nurse practioners, we are able to meet with Dr. Jaggers. He talks about the risks with us. I took notes so that I could remember later. One of my friends asked if it was like drinking from a firehose? Probably a fitting description. He gave us some details about Eliana's surgery and repair. I'll talk more about that in a bit. After hearing the risks explained, we had to sign a consent form for the surgery.
- 12:45pm - Walk to pediatric echo lab. Get ready there. Eliana is asleep at this point. The Dr agrees to do the echo without sedation if she is asleep. Shortly afterwards, she wakes up and we know that she will need to be sedated. See Eliana's cardiologist and talk briefly with him.
- 1:30pm - She is given chloryll hydrate (sp) via her NG tube. Nice option since everyone says that it tastes bad and it was a pretty large dose! It takes about 15 minutes for this to work. She fights it for awhile and is very fussy. I held her and bounced her until she was "out".
- 1:50pm After she is out, she is hooked up to an EKG monitor and oxygen monitor. Her O2 saturation numbers are low which I mention to the nurse. She is typically in the mid to high 90s and today was in the low 80s even going as low as 75. Since this was not typical for her, the nurse gave her oxygen. She explained that the sedation sometimes makes it difficult to breathe deeply. The oxygen helps right away and her numbers stay high during the procedure.
- 2:00pm The echo procedure is done in a darkened room. It took about 1 hour. It was interesting to see the heart and the valves moving. We were also able to see the holes in her heart and the flow of blood throgh the holes.
- 3:00pm - I talk to the nurse about the red irritated places under Eliana's adhesive. I didn't want to remove te adhesive (or replace the tube) but it seemed to be the best choice for Eliana. I would love for it to have time to heal before it is covered again during surgery. I remove the tube and insert a new one whlle she is still sedated! I like doing it that way. (#14 for me) Then we tried to wake up Eliana to see if she is coming come out of sedation alright. Took a cold washcloth on her face to finally see her eyes. She is fussy - hungry since she missed her noon feeding. She takes about an ounce via bottle and then falls asleep again.
We're done now and can go home! We arrive home to find lots of happy people at our house. Three friends and their children are there - beading bracelets, playing and doing science lab. I'm thankful for the help of friends and the fun day my children had with them!
More details about surgery!
Eliana is scheduled to arrive at 6:15 am on Monday morning for surgery. She is the first one scheduled for that day. We are not to feed her after her midnight feeding. Dr Jaggers thought that the surgery would take about 3 hours. Since her VSD (the hole between the ventricles - the two lower chambers of the heart) is large it will require a patch about the size of a dime. (Remember her heart is just the size of her tiny fist!) The ASD is not as large and will be able to be fixed via suture.
He expected her ICU stay to be 1-2 days and the hospital stay to be 5-7 days. Much better sounding than 2 weeks! Of course all of this is dependant on how Eliana responds.
We are planning to take our laptop to the hospital and will update as we can. I'll include some information about risks that is difficult to read. For those that like to pray specifically and who can handle some of the details, I'll include them after my closing.
Thank you for your prayers for our precious little girl!
With love,
Leslie
****WARNING: Some of the following information is difficult.
Dr Jaggers told us that the success rate of this surgery is 98%. Sounds great - only I know that someone's babies are the 2%. I need not dwell on that!
She will have her sternum cut through (broken) in order to get to the heart. She will be put on a heart/lung bypass machine for a little over an hour. (In my head it makes sense that her heart will need to be stopped, but it's hard to hear that.)
There are obviously risks. Due to the size of her VSD and the location, there may be valve leakage after having to cut part of the valve. Being on the heart/lung machine causes neurological problems ( i.e. stroke) in 1-2%. There could be an abnormal heart rhthym resulting from stitches close to a pathway (don't remember the details here) which would result in the need for a pacemaker.
She may lose some of her skills after surgery and need to relearn them. Feeding will be a big one for Eliana. We expect to go home with the feeding tube and hopefully wean from it before too much longer. I am especially hoping that she will retain her smile. I just love her full face smiles! She brightens up a room with her beautiful smile.
Late and I need to go to sleep. I'm completely wiped out!
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