Discharged home to Austin

We had a doctors appointment yesterday and were cleared to return home. The NP that works for Dr. Mery said Angelica's lungs look great so we can go to once daily dosaging of lasix. We will most likely be weaned off the medication in the future. We will return to Houston when Angelica is 3 or 4 years old for the next surgery until then we will follow up with our cardiologist in Austin.

Angelica is doing well just still working on getting her sleep back on track from the hospital. We will give her time to rest and then will have another MRI in about 6 weeks to see if she has the anatomy for a cochlear implant. If she does we will have another surgery before the end of the year.  As for now she is happy and growing. Chris and I are so happy to be home with our baby girl 🤗.

Discharged and relaxing by the beach

We were discharged Friday. We have to stay in the Houston area for one week.  We have a follow up appointment Thursday with the surgeon.  We are currently staying at a cottage across from the beach 🙂.  Angelica is doing well. She had a rough night the first night out of the hospital. She woke up anticipating her morning labs at 5 am and was hard to calm back to sleep 😬.  Yesterday Grandpa Perez and cousin Isaac arrived with our dogs 😊.  Angelica is having fun hanging out with family and her puppies. Mommy is having fun with a little wine 💁🏻.  After Angelica went to sleep last night we worked on a puzzle. Isaacs idea of course 🙂.  I'm happy we did it was a fun evening that made us relax.  We are so grateful for all the prayers and well wishes. Angelica still has another heart surgery in her future and possible surgery for hearing later this year. She is such a brave strong girl.  We are so proud and blessed.

Post op day 8

Chest tube is out 💁🏻. She is so much more comfortable 😊. The plan is to discharge tomorrow if everything looks good. So excited we could be spending the weekend outside of the hospital. 💁🏻 Angelica is doing great. She is such a happy baby.

One week post op

Angelicas chest tube is continuing to drain so the surgeon decided not to remove it just yet. The team is very happy with her progress. She is a bit fussy today because she is overly tired. Labs and X-ray come in the morning at 5/6 am. She has been staying up later and getting woken up early daily. We did not have to have lab this morning so we were very grateful for that. Angelica is a hard lab draw because her veins are so deep so we are on the VAT list. A phlebotomist that uses ultrasound to assist in the lab draw. We have labs ordered for tomorrow morning. Surgeon still feels we can leave by Friday if her chest tube is pulled and echo looks good. Chris and I plan to take a "mini vacay" for the weekend. We are not allowed to leave the area so we are looking into homeaway rentals in Galveston or surrounding area. Praying for continued healing and rest.

Post op day 6

Angelica is continuing to do well. She still has a good amount of fluid draining into her chest tube so we have not removed that yet. Once the chest tube is out we can look forward to discharge. Good news is no labs tomorrow morning so hopefully she will get some good rest tonight. She has been playful however today her lack of sleep is catching up to her.  Her grandparents left this morning. We are so grateful for all of the help from our family and friends. Having family that lives in town has been so helpful as well.

Post op day 5

Angelica is doing well and getting back to her normal schedule. We had her pacing wire removed yesterday. She curently has her chest tube still in. We are told this can cause a great deal of pain. Angelica's pain has been very well controlled. We have decreased the codiene and are mainly on ibuprofen during the day.  She has two IVs and we are receiving IV lasix to help pull fluid off of her. She will also start a blood pressure medication to help make her repair more efficient. She is smiling and more playful today. We are hoping to get discharged this week but time will tell. Prayers that we continue to heal and chest tube comes out tomorrow.

Post op day 3

We are on the 15th floor. Got transferred yesterday afternoon. Angelica's is doing well medically. She is recovering as she should and possibly a bit quicker than most. When we were getting moved to 15 I discovered a pacing wire had been missed. The surgeon places pacing wires directly to the heart so that if the patient goes into an arrhythmia the surgeons have quick way to pace her heart. A member from the surgery team had removed the wires earlier in the day. It can be dangerous because they can nick the heart. Angelica had to be without food for 6 hours for the last removal. It's difficult to keep our Angelica NPO (nothing by mouth). She loves her bottle and food. So if you want a fussy baby don't feed her. These wires may be moved Sunday or Monday.  She did exceptionally well today. She pulled her oxygen off yesterday in the evening. Her oxygen is sitting where it should. So the doc agreed with Angelica, she did not need the oxygen. She has been playful and is getting back on her schedule. We have had a good day and are hoping tomorrow we can start weaning her pain meds down. Praying we continue down this road and will be out of the hospital this next week. Thank you all for the kind words and prayers.

Post op day 2 morning

Angelica is doing good. She has been able to feed so she is quite content. When we sit her up she has some discomfort so we have continued morphine and Tylenol. She is currently sleeping. We got extubated yesterday. Her Glenn line (arterial line in her neck) was removed last night, her arterial line was removed, her foley cath and rectal probe were taken out as well. We were switched to nasal cannula from high flow oxygen. What does all this verbiage mean? She is doing well and has less lines in. Currently we still have two IVs, a femoral line and a drain. Vital signs look good. Hoping to be moved out of the intensive care unit today or tomorrow. One of the floor docs just came in and said we can remove the femoral line 🤗 .   That means we may be headed down to 15 sooner than I thought. The 15th floor is one step closer to going home and we can stay overnight with her. I read back through my blog and realized I never stated what type of surgery she had 🤦🏻‍♀️.  She had the Glenn. It is the second surgery in a three surgery palliative repair. "Palliative" means this is not a cure but only extending her life. They have only been doing these types of surgeries for the past 30 years. There are individuals living to their 30s but we do not know beyond that. Angelica's heart is not the typical anatomy for this type of repair. She is very unique. She is a strong single ventricle but I am not sure what that truly means. What I do know is Angelica is so strong. I have faith God has a purpose for this little girl and it is in his hands. This experience is so very humbling. We had a nurse yesterday with a son with Down's syndrome. He has a heart condition as well. His heart was not suppose to make it past 4 years old. He is 22 and not on any heart medication. Angelica is such a blessing and has already taught me so much. Praying for a good day with great pain control. 🙂

Post op day 1

I woke up this morning thinking "I need to go fight for my baby girl".  We were told last night she would be extubated overnight. I asked the nurse to call me when this happened. I did not recieve a phone call so I knew it had not happened.  In the past we have had issues with the day and night physicians communicating resulting in poor patient care. For this reason grandma and grandpa stayed with Angelica.   Chris and I stayed at a hotel across the street. Once Angelica moves to the floor Chris and I will be staying with her and there will not be a great deal of sleep.  So we have been told to sleep when we can. I woke up at 3 am and asked the nurse for an update and she stated that Angelica was had not woken up enough to be extubated. I asked if we stopped the sedation medication and her response was "no" but she had too addressed concerns with the doctor.  I got to the hospital and expressed my frustration with the nurse and attending physician. Why had the sedation medication not stopped sooner? We were told Angelica would be extubated overnight and it seems the overnight doc had a different plan. We were able to extubate at 9 am. My frustration is we were told with her type of surgery they try to extubate as quickly as possible as it may complicate the surgery/recovery if not extubated. Medically Angelica is doing well at this time. She is in pain from surgery and "Glenn head" headaches that follow the Glenn. We are controlling her pain with morphine and Tylenol.  She was able to take her first bottle and did really well.  She is sleeping right now. I am praying for a speedy recovery and good pain control. I pray that she can recover as she has in the past and will be the same little girl that was admitted to the hospital. I can't wait to see that smile once again 😊.

Surgery update

Dr. Mery said surgery went well and he is very happy with the results. We will get to see her in about an hour. There will be another heart surgery in her future however he is hopeful it will be around 3 or 4 years of age. We can't wait to hold our baby girl.

Update

She is on the heart bypass machine.  Dr.  Mery has not made his decision on the type of surgery at this time. He is currently repairing the pulmonary artery that was damaged from the PA band that was placed at 2 weeks of age. She is doing well and we should know at the next up date what surgery he is moving forward with.

Surgery day

We are back at Texas children's. Angelica had a day full of appointments yesterday and she did great. She napped at the doctors. She smiled and played when she was awake. Yesterday when the docs discovered Angelica has some of her formula pumped at night they decided it would be be
st to admit her to prevent low sugar and keep her hydrated. Since there were no rooms available we were admitted to the NICU.  At night when we arrived Angelica had past her bedtime so she was very hyper. Giggling and rolling around. It was really cute and fun to watch.  It so reassuring that this child is admitted to the hospital her schedule is completely turned upside down and she remains in high spirits. This morning when I got to the hospital she was still asleep. The nurse said she did great overnight. Slept wonderfully. The surgeon Dr. Mery said he will do his best to evaluate if she can have a double ventricle repair but it looks like she will be getting the Glenn. The Glenn is the second surgery in a series of three for a single ventricle repair. I will continue to update as I know how she is doing. Thank you for all the prayers and support. God has a plan for her. I have faith that Angelica is in good hands and will do well.