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!!

Making Progress....

So happy to have some positives to write about. Woo Hoo!
So they took both of her chest tubes out today which is good. Her AM chest xray was good after removing them. Removed her pacing wires from chest. And they just extubated (removed breathing tube) her about 10:10 am. She seems to be resting comfortably, shows no signs of distress or difficulty breathing at this time. She does have a little nasal cannula delivering supplemental O2 through her nose. Her oxygen saturations at at 89% right now. They plan to remove the central line in her neck today. Her urine output is good (getting lasix 3x day). Blood pressures a little high (getting Enalapril 2x day and PRN Hydralazine). They plan to have ENT doc evaluate her today or tomorrow re: vocal cord damage. I suspect there will be damage. They say "ususally" it is temporary. Lets hope for that!!

Well, I am just glad to be reporting some good news and we are taking steps forward towards recovery! Keep praying for my sweet Angel!!

2nd day Post-OP

.... Well after 12 hours yesterday of deep retractions, labored/ difficulty breathing, attempt at CPAP, many respiratory treatments, chest percussion therapy, steriods... and so on... They finally decided to reintubate her. (Put the breathing tube back in to breathe for her). Poor Abigail, I watched her work very hard all day at breathing. They "think" difficulty is due to swelling from intubation. So plan now is to keep her intubated, probably till tomorrow AM, give steroids to reduce swelling, and keep her sedated. They have been giving her BP meds, pain meds, antibiotics, steroids, sedatives, diuretics... and probably some more that I haven't listed. There is 9 IV infusion pumps going right now... some are keeping the many lines into her open.... but 9, OMG!
Abigail woke up yesterday evening for about 5 min. She was looking around, responding to voices, grasping my finger... the highlight of my day...until they gave her more drugs to sedate her.
One of my big concerns is her vocal cords/ nerves...possible damage cause from surgery. She has not cried, moaned, made any noises since surgery. The docs say this is always a possibility, usually damage is temporary. They will have an evaluation done by an ENT. They look at vocal cords and swallowing abilities. Oh, what I would do to hear her cry right now.
I guess that sums it up for now.... keep her in your prayers!

AM update- post surgery

So Abigail had a good night. I had a friend, Angela (mother of another HRHS kid), offer to stay night with her so we could get a good nights rest at home. We thank her so much for doing this, she is a great supporter and very knowledgeable of whats going on. She sat at her bedside throughout the night. Abigail was extubated (breathing tube removed) this AM, so now breathing on her own with a little O2 going into her nose. She is having some labored (difficulty) breathing (retractions). Her chest xray was good, suspect that just some swelling from breathing tube. She has been given breathing treatments and steriods to decrease any swelling. They are medicating her well with morphine and versed to keep her comfortable, she has had her eyes closed most of the AM. She does move her arms and legs a little, seems a little restless. Her platelets have increased (in the 200s).Her face is a little puffy, which is expected. They have now decided to try her on CPAP to assist her with breathing, to try to decrease the work she is having to do on her own. CPAP (Continuous Positive Airway Pressure) just "assists" her, forces extra O2 into her lungs.

Abigail's 2nd Surgery completed!

We are in CVICU now with Abigail. The surgery was done about 4pm. She is stable, but still very sedated. Dr. Heinle did Abigail's surgery today. They were able to place her new shunt (Glenn Shunt), remove her old shunt (BT shunt), and open her PFO
(patent foramen ovale)-allowing blood to flow from the right atrium to the left atrium (before there was restricted blood flow between the two, allowing too much blood to back up into body). No complications during surgery. She has many tubes hooked up to her right now.... I will give a quick rundown (best I can)
1. NG tube (feeding tube)
2. ET tube (endotracheal tube) down her nose for breathing
3. Central Line (right side of neck)- measuring pulmonary arterial pressure
4. 2 chest tubes
5. pacing wires (if needed)
6. L wrist arterial line (measure blood pressure)
7. L atrial line coming from incision site area (left atrial pressure)
8. IV in left foot
9. foley cath
10. pulse oximeter
11. Right femoral central line
12. Temperature probes (rectal/ and on skin)

Meds: Nitroglycerin, Albumin, Morphine, Ancef, Milrinone.
Her PLT (platelets) are a little low =76... about to infuse some Platelets.
They plan for her to be in CVICU for 2-5 days. Hope for her to be extubated in next 1-2 days.

Thats about it for now, I guess. Thank you all for your thoughts and prayers, but please keep them coming.

Today, Surgery....

Well they took her back at 0830. They anticipated 1st hour to be just getting all the appropriate lines (IV's, etc) and anesthesia started. They came with the 1st report around 1030. They said all the line access needed had been established, and things well with anesth. That the incision down her chest had just been made. They anticipate that the actually surgery from incision point will be 5-7 hours. They will intend to do the Glenn Shunt and remove the old BT shunt. These 2 things I know for sure. There will be many other decisions/ possible procedures made once they are inside and are able to evaluate the heart up close.
The 2nd update was around 1245. They stated she was on bypass machine, things going smoothly. That the doctor was doing a muscle resection of the right ventricle (" due to overgrowth").... don't ask what that means.... cause I really don't know what that is all about.
Basically the "charge nurse" must go from room to room trying to get and idea of what is going on. She is the one who comes to us with a report. Really not knowing much more than the basics. So not a great resource person for any questions.

thats about it for now. Lots of family here for support and I know there are many of you out there praying for our girl. Thanks .... will keep you updated

Surgery on for Tomorrow!

Surgery is set for tomorrow, September 11th. Once again they kind of sprung this on us today, last minute kind of thing. Surgery is expected to last 6 hours long. They usually give us hourly updates so if anyone out there is reading I will try to update. Please say a prayer that everything will go smoothly, no complications, and she will come out stronger!!

No surgery today

Well as we thought might happen, the surgery is off for today. The kid that was originally scheduled today went on with his/her surgery. We are still scheduled for Monday the 14th. Once again, if a pot becomes available before then she could go sooner. There is always a chance she will get bumped for whatever reason on Monday. We will keep you all posted

Eve of the Glenn or Worry for Nothing

Tonight we anxiously await what tomorrow morning may bring. The child who is scheduled for the first surgery tomorrow morning has been ill, so if he is not in shape for surgery, Abigail will have her Glenn procedure. The Glenn, as you may or may not remember, is the second in a series of three opereations to get blood to Abigail's lungs. If the other kid is well, we will have spent all night preparing for nothing. So it goes with all of this. Hurry up and wait. Please keep Abigail in your thoughts and prayers tomorrow. It maybe a very big day for her. Thanks for all your support.