Like a child I am content

My heart is not proud, LORD, my eyes are not haughty; I do not concern myself with great matters or things too wonderful for me. But I have calmed and quieted myself, I am like a weaned child with its mother; like a weaned child I am content. Israel, put your hope in the LORD both now and forevermore. Psalm 131

Thank God, we are having a very quiet week. Vitoria is doing great, sleeping well with the chilly and rainy weather and eating very well. There is nothing better than see her happy and quiet, with no signs of discomfort. This week I cancelled physiotherapy, so that we both could rest and recover from the hospital marathon we did.

I scheduled the urodynamic study to next Monday. It is an invasive test, and she should take antibiotics to prevent infection. Please pray that the test goes well and that she feels ok after that, without any discomfort or infection. And that God can show us how to protect her from urinary infections.
She is taking some medications, antibiotic prophylaxis, trileptal which is anticonvulsant and also motilium and omeprazole to protect her stomach. She also finished floratil that was helping to regulate the bowel. They are all sweet, she likes and takes them in a syringe, smacking her tongue when it finishes. Lovely!

Thank you all for caring messages and prayers.

Celebrating!

Gratitude!

"And now these three remain: faith, hope and love. But the greatest of these is love". I Corinthians 13:13

Today our beloved daughter is two years of life! It's a great gift to have her with us at home doing well.

She had a stomach upset in the beggining of week and spent a few difficult moments, but she was treated by a medical gastrointestinal and improved. Yesterday we finally had the great joy of returning home with her!

She's great and beautiful and still is a precious miracle in our lives. She slept well and woke up very peaceful. We sang and played early in the morning and she presented us with beautiful smiles while daddy sang happy birthday and moved her little arms.

Grandma Alice is also spending this special day with us.

Saying "thank you, Lord" is so little to translate what we feel. All we want is to make her feel happy and loved always.

May God bless you always, our beloved Vitoria. We love you.

Good news

Vitoria is so much better and was extubated yesterday. Now she is using an oxygen mask. Maybe tomorrow she will leave ICU. Today she could open her sweet blue eyes and I could hold her again, and comfort her after this stressful week.

So tired to share more details but I thank so much every prayer and word of encouragement.

Hailstorm and sunshine

Yesterday during afternoon Vitoria had a terrible convulsive seizure when she got very cyanotic and with  tachycardia. Two pediatricians came to her aid and confirmed that it was a seizure context, which ended only after she was sedated and received an anticonvulsant. After that she decompensated and had to be intubated. Thank God an excellent doctor attended her in the evening and was able to put a central catheter without vein dissection. So this doctor also found that she was under a serious urinary tract infection and pneumonia and also in shock - again, to our despair.

On Sunday the urinalysis showed  five thousand leukocytes (apparently normal) and on Monday night it had one million leukocytes (serious infection).

But despite the seriousness, she responded very, very fast and in a few hours she was out of the shock, she was able to return to pee and now she is already improving. Today pneumonia fell sharply but she is still intubated, receiving epinephrine to maintain blood pressure and sleeping very deeply.

Her blood sugar remained high, above 600 in the morning and over 300 in the afternoon and tonight it finally subsided.

We were very unhappy because we realized the first day of hospitalization doctors didn´t investigate her enough because they thought it was a neurological crisis, but her brain was just telling us that her body wasn´t well. We felt something was wrong and tried to show it to doctors but they didn´t hear us.

Once she gets better, she will go home with prophylactic antibiotics and anticonvulsant. The entire staff of the ICU is - just now - listening more attentively all our suggestions and concerns.

Our little Victoria is, at the same time, so fragile and so strong, and she is doing her journey with courage and winning so many hearts with her sweetness and persistence. She is also making a knot in the minds of many doctors.

She had a very rapid worsening and improved very fast, but her condition it is still serious. Please be in prayer.

Another storm

Our year began with another storm, taking our beloved Vitoria to the hospital... Since Saturday she was agitated and tense and started to have some spasms that have been increasing over the Sunday, when we brought her to hospital. All tests came normal, without evidence of infection, therefore it seems to be a  neurological crises, seizures or something similar.

 

She was observed during the afternoon and in evening spasms increased and became continuous and very repetitive. She was exhausted but could not sleep at all, so she was sedated. Today at 6 am she got to wake up but then went back to sleep soundly. She began to be not reactive and need little oxygen, and so she was brought to ICU for being better monitorated. The doctor believes it is still the sedative effect. They also put her a probe because the way she is asleep, she is unable to eat orally. They didn´t try to get a venous access (which it is extremely difficult). She is receiving a muscle relaxant and the neuropediatrician will evaluate her soon.

 

We were very shaken by this new and unexpected complication, seeing our little princess suffer with spasms and have to face hospital procedures again. We are also extremely physically exhausted because we were carrying her all the time (so the spasms became weaker). Now we do not know what will happen. We hope she recovers soon and can be medicated so that spasms do not come back. For now she needs to rest and recover from the stress experienced.

I think there is no greater pain than seeing our child suffer. And there is no greater love than the love parents can have for their child. And our promise to our little princess is that we will love her forever, and that we will always fight with her, no matter how big the challenge is, how great the pain is. We pray God to give us strength and that she can feel better. Please pray for her and for us.