Car for Caiden

My name is Jessica Reid. I am 19 years old, living in Brisbane, QLD and I am a full time mummy and carer to our beautiful son Caiden who was born on the 6/10/15.

My pregnancy with Caiden was normal except for constant worry about lack of foetal movement. Due to placental abruption at 36 weeks Caiden was born by emergency C-section under a general anaesthetic. He was resuscitated at birth and taken into the NICU at the Royal Brisbane Women's Hospital where he seemed to be doing ok. During his first night of life things took a serious turn and life hasn't been the same since.

Caiden had started having seizures. They said it may be a result of the traumatic birth, so they medicated him and hoped for no more. He had an MRI and days of EEG monitoring which showed nothing. Once the medication wore off the seizures started again. They restarted the seizure medication until they could figure out what was going on.

At 7 days old they allowed Caiden a short time out of his incubator and I finally got to hold my boy for the first time. Later that day repeated MRI scans came back with devastating news. We discovered Caiden had a clot in the main vein of his brain (venous thrombosis) and that he had suffered from a stroke (occipital lobe stroke) on the right side of his brain most likely from another clot that had burst. There was also a third area of concern which they thought was either an aneurism (outside of artery wall weakened and bulged out) or a dissection (tear of the inner lining of the artery wall). Due to these critical changes in his brain Caiden was transferred to the Lady Cilento Children's hospital where they have neurosurgeons on hand and was admitted into the PICU.

At 10 days old we were pulled into an interview room and sat down by the nephrologists and were explained that they had discovered that Caiden was losing excessive amounts of protein in his urine and that his albumin levels in his blood were extremely low. They continued to explain and he was diagnosed with Congenital Nephrotic syndrome (CNS).

CNS is a rare form of Nephrotic syndrome affecting 1 in 100,000 children worldwide. There are many types and causes of CNS, most are genetic altough some can be from environmental causes like infection. CNS means the filters of the kidneys have not developed properly and therefore filter out the protein from the blood into the urine. Low Protein in the blood causes thickened blood leading to blood clots if left untreated - this explaining the clots that were found in Caidens brain. Other problems that come with CNS include a weakended immune system leading to frequent and severe infections. Ascites (buildup of fluid in the abdominal cavity), Edema (buildup of fluid on the body), Hypothyroidism (underactive thyroid), Failure to thrive (decelerated or arrested physical growth (weight and height), low muscle tone, development delay, etc..). and eventual acute or chronic kidney failure leading to dialysis and kindey transplant.

Caiden spent a few more days in the PICU before being transferred up to the babies ward. He was started on daily blood thinners, seizure medication, thyroxine for his underactive thyriod and diretics to prevent edema. (SEE CURRENT MEDICATION LIST AT BOTTOM) Caiden was too unwell and his weight was too low for us to go home. Due to loss of protien he required a large amount of feeding to help him put on weight so he was mostly fed through NG tube as he was too weak to drink what he required. I learnt how to do his injections, medications, how to use his feeding pump and how to replace his NG tube and after a few weeks we were able to go home. We came into the hospital twice a week to keep a close eye on Caidens progress.

Since then we have had many short and lengthy admissions into the hospital.

!!!!!TO BE CONTINUED - STILL BEING WRITTEN!!!!!!

Current daily medications:
1. Clexane injections
2. Pentavite
3. Frusemide
4. Spironolactone
5. Thyroxine
6. Omeprazole
7. Keppra
8. Sodium Bicarbonate
9. Potassium chloride
10. Magnesium chloride
11. Calcuim
12. Ferrous sulfate
13. Calcitriol
14. Cholecalciferol
15. Selenium
16. Zinc
17.  Lisinopril

Twice weekly albuimin infusions and dexferrum injections at the hospital.