Post Fontan

Abigail surgery was finished around 1 pm. Met with her surgeon Dr Heinle around 1:15. He said everything went as expected, no complications noted during surgery. At that time she was waking up from anesthesia. They took her to CVICU and got her stabilized and and connected to all of her medications. I think she is hooked up to 5 different IV infusions. She has an IV in her hand and one in her neck, an arterial line in her wrist, incision from surgery, 3 chest tubes draing blood/fluid, a foley catheter to drain urine, ekg leads on her chest, some monitor on her forehead, thermometer reading 'rectal' temp, pulse oximeter on her finger, nasal cannula for oxygen, and pacing wires. A lot for a 4 year old. Hopefully little by little we will rid these monitors and tubes. She is still very sleepy , wakes up occasionally and seems disoriented, grumpy and uncomfortable. First asking for water or chocolate milk. She is on a fluid restriction at this time. so far we have had ice chips an few times that she has tolerated and enjoyed. They are keeping her pain under control. So far so good. will keep posted

fontan update

Abigail has been doing great with all her updates this morning. After anesthesia and placing lines they took their time going through the sternum. scar tissue accumulates from previous surgeries, they take their time going through that area, careful not knick the heart in the process. Last update about 1130: she is on heart-lung machine, doing well. Dr Hienle is finishing the actual Fontan procedure. When that is complete they will start closing her up. Once she is is done they spend 1-2 hours getting her settled in ICU before we will be able to see her. The prayers are working, keep them coming!

Fontan Surgery- surgery day

Well its been almost 4 years since I've made an entry to this blog about Abigail. In my mind that is a good thing. I started it up when she was born to keep everyone up to date during her hospital stays and surgeries. Thankfully, she has been out of the hospital for almost 4 years. So we have been living the life of a normal child and thankfully have had nothing to updat

e on. Well, unfortunately today is the dreaded day. The 3rd of the three surgeries planned for her since before birth. Just to backtrack a little. Abigail was diagnosed with Hypoplastic Right Heart (her right ventricle never really developed, so must functions with 3 chambers)and also Pulmonary Atresia (a congenital malformation of the pulmonary valve in which the valve orifice fails to develop. the valve is completely closed thereby obstructing the outflow of blood from the heart to the lungs). BT shunt (1st surgery) done at 2 wks of age. Glenn Shunt (2nd surgery) done at 5 months. So we have dreaded this day, but in the end I guess it has to be done. Abigail has been in good spirits about "the hospital". We have a prize box,shopped for snacks, games, toys and entertainment. talked about visitors, even visited another heart friend on the cardiology floor to orient her to upcoming scenario. We arrived at hospital at 0600 this AM. she was in good spirits, wanting to play and watch TV until the dreaded oral versed, which probably has ruined the whole hospital experience. She threw it up , and cried about the taste. Right at 0700 she willingly let the anesthesiologist walk her back to the OR. I cried my eyes out. It is the hardest thing to do to. No child deserves to be put in this situation. Please keep praying that she surgery will go well without complications. she will wake up from anesthesia, and be on the road to a quick recovery. Will continue to post updates as i get them

Abigails Home

Sorry a little late on this post, but Abigail cam home last Monday the 21st. We are so glad to have our whole family home. Things are going pretty good, incision healing. Still struggling with her eating, thats really been our only issue since coming home... but hey, isn't that always her issue. She went to peidatrician yesterday to just check in, nothing to report. She was supposed to have a cardiology appt today, but since she is doing well and their schedule is too full, they have moved it to next week.
So life still remains busy... two working parents, juggling Abigail from one "sitter" to the next, a 2 yr old, making bottles, giving meds twice a day, little sleep, feeding during the night and all the normal things of a household! Trying to get through each day is a challenge in its self! But hey, thats life right!! We are hanging in there!

Abigail is doing GREAT! Today they took out her NG tube and IV, so she no longer has any tubes going in her anymore!! She is eating well, smiling again, and seems to be comfortable. She had a few couple of really bad days (Wednesday and Thursday- probably the worst of them all), but I am so relieved to say we are over that hump. The only problem is that her hair is falling out, like in chunks. I have heard that anesthesia can cause hair loss and have heard that it can just be stress from the surgery. Either way... poor baby girl is balding! Thank goodness for hair bows!!

The doctors rounded today and said they are pleased with her progress. She will have an ECHO of her heart on Monday, and if all checks out then they will let her go home!! Woo Hoo!!

I am so thrilled to be able to update with such great news. We are looking forward to going home. Aunt Patsy hasn't left Abigails room since she arrived on Wednesday. She has been a great help during these difficult times.

I can't thank you all enough for the support and prayers sent our way these last 5 months. It is so great to know I have such a large extended family.

We've graduated...

Yes... we moved from CVICU down to the 15th Cardiology floor. Yeah!! Abigail is doing good. She seems very depressed and sad. My heart hurts for hers. She has been through so much in such a short 5 month period. She has had 100's of sticks, 4 PICC lines, 2 heart surgeries (1 was open heart and she was on bypass), 3 chest tubes, probably 10 echos, 20 xrays, about 250 shots in legs and arms from Lovenox shots, NG tubes........and so on. She has spent 110 days in hospital, and only 49 at home. Most of us will never experience this much in our entire lives!
I am enjoying being back on 15, one step forward to home. We have our own room, I have my own bed and bathroom.... unlike in CVICU there is only a chair, not a recliner or anything with cushions, just a chair. I am enjoying being able to hold her again. She seems to be resting peacefully in my arms right now. I hope that we will both sleep well tonight.
We are looking forward to the arrival of great Aunt Patsy from Washington state tomorrow. She is coming to visit and help us out for about 11 days

Day 4 after surgery...

Abigail is doing great! She is much more alert and awake today, although she does seem sad.... I'm sure she is just uncomfortable, or maybe she just misses dressing up with cute clothes and big bows, or just upset all her hair is falling out (IDK why). They say that they suspect after the Glenn surgery that the babies suffer headaches for first couple of days due to change in blood flow. They are now giving her scheduled Toradol for pain, and Morphine as needed. Everything has gone well with extubation/ and breathing on her own. They have removed most of her tubes/lines/catheters. They plan to remove her LA line going into her heart sometime later today. Once that line is out she will only be left with one IV going into her right femoral area and we will finally get to hold her again! I can't wait and I'm sure she could use a little more luvin' on. We also expect to be moved back to the Cardiology floor (15) once that line is out. Her incision looks good, her vitals are stable. We are right on track now! Yeah!!!.... finally. What a strong little girl!

The ENT doc came by yesterday afternoon. They looked at vocal cords. Said that the right vocal cord moving well, and the left vocal cord is moving slightly. She doesn't expect any permanent damage. Will heal with time. And she gave her the OK to start trying to feed by mouth. Still not much sound coming out when she tries to cry, but she will get there.

Our family thanks everyone for all the prayers and love for Abigail!!