Archive | September, 2010

Short stay

Gabi got to come home with us last night and we are just thrilled!  We all got to sleep in our own beds. She is doing great!  One of the surgeons gave the go ahead for a 3-4 hour recovery and we held the nurse to that moment.  4:00 and we were out the door!  She was cranky cranky cranky for those few hours after waking up, but mostly she was cursing in baby language at the IV and board holding her arm straight. Then she had the pulseox  on the other hand so she had no hands and she did not like that one bit!  Once we moved the pulseox to her foot at least she had one hand free.  Her sats remained at about 82-83, which is great for her and her heart rate was stable at around 100, so we ran we had the chance.

This morning she is back to her usual self, laughing with her brothers and sister.  Thank goodness that procedure is over.  Not the greatest answers, but at least we have investigated all possibilities.  The ENT surgeon put probes on her vocal chords to see if there was any movement and she saw lots of muscle fluttering with the paralyzed left one, so we are very hopeful for a full recovery. And to know there was no evidence of any aspirations is so reassuring.

We haven’t spoken with Dr. Rao yet, but I am sure we will connect soon.  I am anxious to hear what he has to say about her Echo.  She is doing so great, I was so surprised to hear that her heart is not doing that great.  One day at a time…

Thanks for all the prayers and support!  We have wonderful friends and family!!

Love,
Teri

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Surgery update

The surgery got underway around 11. We have gotten 23 updates so far.

The echo results were not great. Her heart is still very enlarged and has fluid around it. Her PA’s look good and her pressures look good also. Her aorta is forming collaterals which is the body forming new pathways to and from the heart. These are expected but not good. Gabi may have to head into the cath lab for these collaterals. The main concern is that the regurgitation within her heart has worsened. This is basically backwash from her lower heart to the upper chamber. The fontan procedure could help this issue but she is not due for the fontan for another 2 years. So – we are waiting to hear from Dr. Rao and get the straight scoop. We asked about a possible transplant and the fellow that we spoke with said it could be on the table for discussion.

The GI doc has a spoken to us and he got as normal results as he could possibly could have. We will get results of the biopsies next week sometime.

The ENT surgeon just came in and Gabi has anatomically perfect airways. She said normally she just prints the images off to show the parents, but this time she burned them to CD to use as a teaching exhibit. Gabi does have a partially paralyzed left vocal chord. Good news is that it was paralyzed in the closed position, which is why she can still make a racket. The bad news is that because of that she cannot swallow properly, and her body has learned that to clear the space at the back of her throat she pukes rather than swallows. The doctor is sending her vocal chord movement numbers off to a doc at Harvard who specializes in this sort of thing. He has seen the most of it in the country and he should be able to tell us how much recovery can be expected.

SUMMARY: Time should help with the feeding, but only time will tell us that. Her heart is doing well, though not quite as well as last time.

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Here we go…

The day has arrived. We are heading up to Milwaukee early and she will be headed into the OR at 11:00 am.  There will be 4 doctors present all with a different agenda.  The anesthesiologist (cardiac), the GI doc, the ENT and our cardiologist.  Gabi will first have an ECHO done which is completely painless and easy but she needs to be sedated so they threw this in while she is under general anesthesia. They do want to check her heart function before they procede.  If all is OK, she will undergo a larangeal (sp?) endoscopy which will assess her airway, weak vocal chord, weak palate and crooked artynoids.  That will take about an hour and will be done by the ENT surgeon. Finally the third hour miss Gabi will undergo another procedure where I forgot the name.  The GI surgeon is going to take biopsies of her stomach lining to see if she has any ulcers, allergies… not sure what else.  He will also scope her small intestine and basically cover any upper and lower GI issues.

She is still vommitting quite a lot and it just doesn’t make sense.  There is no rhyme or reason to her vomits so we are anxious to get any results back.  I have a fear that they are not going to find anything.  Which I guess would be a good thing but poor little Gabi is miserable a lot of the time. I just would love to have an explanation and want to help her to eat.  She loves to put things in her mouth now, but most of  it just drools out her mouth because she is too afraid to swallow anything.

I have to say she is a trooper through all of this and so our all of our children.  Ethan Jr. is an incredibly anxious child and I can see him worry about Gabi even though he doesn’t quite understand his feelings. I do feel amazingly honored to be Gabi’s mother.  She may live to be beyond what all doctors predict or she may live a short life, either way she has made such an impact on our family… we are so blessed.

Say an extra prayer for Gabrielle as she undergoes these procedures.

Love to all and Happy September!

Teri

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