Author: rebekahcarrizales

Hello— Emy had a good day. She is still recovering from her acute illness. We are waiting on the infectious disease labs to figure out why she was so sick last week. She will continue to be intubated while they wait for the labs in case the infection is in her lungs.

Please continue to pray for healing. We don’t know what healing looks like for Emy but we have faith that God will sustain her. Please pray for strength for me and Ezra as we navigate the coming days, weeks, and months. We are trusting in the Lord to guide us as the last week changed a lot for our family. Please share these requests with folks in your life who pray.

God has impressed upon me to pray for healing for Emanuela. God is with us. Pray as you are led by the Spirit.

Emanuela is doing a little better today than she was yesterday. She has an MRI scheduled for tonight at 7 pm. The neurologist and PICU team scheduled a care conference for tomorrow to go over the results of the MRI, EEG and CT. Please pray that her MRI is reassuring; that she is going in the right direction neurologically. We know she has suffered strokes, seizures and bleeding in her brain. Please pray that the impact of those events is minimal on her cognitive function. Please pray for Ezra and I as we are nervous about what they may be preparing to tell us. We need to cast our worries on the Lord and lean on Him. God is with us.

“Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective.” -James 5:16 (the Bible Gateway verse of the day)

“25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life? 28 “And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. 29 Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30 If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? 31 So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the pagans run after all these things, and your heavenly Father knows that you need them. 33 But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” -Matthew 6:25-34 – https://www.biblegateway.com/passage?search=Matthew%206:25-34&version=NIV

The team is still not entirely certain why she decompensated so rapidly over the last few days. The prevailing thought is infection leading to septic shock. We are thankful that she gave us a stable day— a remarkable difference from yesterday.

She is weaning down from her vasopressin and epinephrine (the blood pressure medicine that treats low blood pressure). She weaned a little on her ventilator support. While she is intubated, she is sedated to keep her comfortable. This evening, she woke up a bit and looked at us. Her eyes still deviate to the right, but she blinks to try to look the other direction. We are hopeful this is not a permanent issue and that she will regain function of voluntary eye movements.

She is still in critical condition, but her labs and decreased supportive measures show she is trending in the right direction. We are thankful to God that she is improving. Thank you for your continued prayers.

EmyG was not able to get a good arterial line this afternoon, but her automatic cuff pressures were reading. They took her to get a CT of her head, chest, and abdomen. They found a few strokes. Nothing remarkable on chest or abdomen CT.

Her leg has improved so much. It was purple this morning and now looks almost similar to her non-injured leg.

The doctors are still very worried about her, but she has remained stable for the last 4 hours. We are very pleased with where she is right now, but we have been counseled by several doctors that this evening will be rough. We still don’t have a good answer for why she is so sick. We have some theories of our own; God knows. Please continue to fervently pray for God’s grace and mercy on EmyG. Please pray for Him to sustain and heal her. Please pray for Him to give her strength.

Hello all. EmyG is still in critical condition. She was intubated last night to give her some extra respiratory support since she was working hard. They tried to place an arterial line in her right femoral artery last night to monitor her blood pressure closely. Unfortunately, that did not work and damaged her vessel, which left her leg purple and mottled. It is looking slightly better this morning but surgery is going to stop by to take a look and make sure it’s ok and will heal without intervention.

We still don’t have a clear answer as to why Emy is so sick. She is going to have an MRI of her brain and other organs today. She’s had some strange staring episodes and a chin tremor the last few days which prompted an EEG. The left side of her brain had some dampened electrical signals, so that is what prompted the need to get an MRI.

Last night her lactic acid shot up to over 7 (normal is <2) and her pH was 7.1 (7.35-7.45 is normal, <6.9 is usually not compatible with life). She has respiratory and metabolic acidosis. We are hopeful she will improve with the bicarb and ventilator. Her latest labs were improved but not quite back to where we want them.

She is on broad spectrum coverage antibiotics and treating in case she has a fungal infection. Usually when she has sepsis and is given antibiotics, she feels better within 24 hours. It has been over 24 hours without improvement. The team is reevaluating everything to try to figure out why she is so sick.

Please continue to pray over all of these things. One bright spot is that the team allowed one additional support person during this time, so EmyG finally got to meet another member of her family! She met her Grandmomma (Ezra’s mom) last night. We are grateful for this supportive measure.

Please pray for Emy. She is very sick and not responding to antibiotics right now. We don’t know what is ailing her. She will get an arterial line placed— they have had a difficult time placing one. Please pray they can place one to get an accurate reading on her blood pressure. She is currently being intubated. Please pray for God’s miraculous healing. Please pray for Him to have His hand on her and to sustain her while she continues to fight. God is sovereign. God is with us.

The ultrasound of her abdomen from yesterday afternoon showed her right ovary has moved into her inguinal hernia. Thankfully, the blood supply is not affected, so they will monitor it closely for any changes.

She had a two-panel X-ray of her abdomen which showed nonspecific distention in her bowels. No free air and no sign of pneumatosis, which is good.

She has also been staring off to the right and not making eye contact, which makes me concerned that there is a neurologic component to what is ailing her. Additionally, she’s had a chin tremor that appears to be different from a normal sucking tremor. Due to these concerns, they obtained a head ultrasound (US) last night, which did not change from her previous head US from a week ago.

Later today, the plan is for Emy to get an echo and an EEG. The reason for these tests is to try and find an answer to what is bothering her. It could simply be an infection, but it may be something else. We are all scratching our heads trying to think of what this might be if it is not an infection. Please pray for healing for Emy and for clarity for her care team. Please pray for her to find comfort while she heals from whatever is ailing her. She is a strong little lady and we are so thankful for her.

Emy has been very fussy the last few days. Her vitals were normal until last night, when her heart rate increased, her blood pressure decreased, her breathing was fast and her perfusion decreased. They did a work up for sepsis and started antibiotics. Feedings were stopped. They started norepinephrine to help maintain her blood pressure. She’s getting Dilaudid for pain management. She had an X-ray of her abdomen that showed distention but no free air. An ultrasound of her abdomen was just obtained; the results have not come back yet. She is getting an arterial line placed to closely monitor her blood pressure.

We have been down this path before. We are thankful she is still feisty. Please pray for this issue to resolve. We are not sure what is ailing her. It could be an issue with her GI tract or another infection; it is hard to pinpoint what is causing her instability. Please pray for God’s comfort and healing. Please pray for Him to guide the doctors and nurses to identify the problem and guide her treatment accordingly. Thank you for your continued prayers for our sweet little Emy.

An X-ray Emy had yesterday revealed she has fractures in her left humerus and left femur. This may be why Emy showed signs of discomfort over the past few days. It seems they will heal on their own— no surgery needed. Fragile bones is a common issue with kidney patients. We are hopeful she will recover soon. In the meantime, she is receiving additional pain medication.

As mentioned above, Emy has been more fussy the last few days. Additionally, her heart rate is elevated above her baseline. We are not sure if her fussiness is related to pain due to her fractures or due to another issue. She may be experiencing discomfort due to starting enteric feeds. She received 2-3 mL of breast milk through her G-tube per hour for the last few days, then stopped last night because she had several hours of feeds stuck in her stomach. Please pray that she can tolerate feeds through her intestines again. She hasn’t been able to sustain feeds for more than a few days ever since her bowel perforation surgery. Please pray for her bowels to heal and that God uses her milk to help her grow!

On another note, Emy smiles more often when she sees me or Ezra. It is so precious that she knows us and is happy to see us. These bright spots make our day!