Eliabeth - posted on 01/28/2009 ( 29 moms have responded )
Hi, my son Adam has a lot of health problems and disabilities, is anybody else facing this?
Her is Adams story,
My son Adam was born at 25wks weighing 1lb 14.5oz, he was in nicu until he was 22wks old and went home weighing 7lb2oz. I didn't get to hold him at all until he was 4 weeks old, and he was still on the ventilator, so he was hand vented so i could finally get my first cuddle.
Adam had a very long stay as he suffered major setbacks.
When he was 2days old(on st valentines day) he suffered a grade 4 bi-lateral brain bleed, we were told that that level meant he would definetly not survive, and he was given just 1 hour to live,.
We had Adan baptised with all our family present, but Adam fought on and made it through the night and the next day and the next!
When Adam was 10 days old he contracted MRSA from a member of staff, we were so so angry, he was in an incubator and supposed to be protected! He was so tiny his weight had dropped to 1lb 3oz and when he was 14days old the MRSA had infected his blood, causing sceptacemia, then infected his Cerabal Fluid, and caused menegitis.
Once again we were told he would not survive.
But my little miracle boy fought on!!
He developed N E C when he was 8 wks old and had to go back on TPN, he had been having 1ml of milk an hour bless him,and was facing surgery, but improved with meds, he then develeloped Liver problems and had to keep having Hyda Scans the doc's thought it was billiary atresia, but was put on new meds after seeing a liver specialist.
Whilst all this was ongoing Adam was still ventilated, he finally came off the ventilator and onto C-PAP AT 6wks old
Due to the brain bleed and the menigitis Adam developed severe Hydrocephlaus, which worsened drastically so he was having lumbar punctures every day, until he detoriated badly and was re ventilated,Adam had to be transferred to a different hospitial for brain surgery,and had a Ventricular Peritonal Shunt fitted at 10wks old, his pre op weight was 3lb 2oz!!! ( to permantly drain excess fluid from the brain ventricles to the peritional cavity in the tummy) This surgery is never normally done as a neonate, babies are usually home for some months after NICU discharge before it is attempted to allow them to grow and become stronger, unfortunatly, without immediate surgery Adam would have died.
Immediently after the surgery we knew Adam had suffered major brain damage, he was rigid and colud be lifted in his incubator like a board.
Adam developed an infection after the surgery and it was touch and go for the next week.
After 2wks in that hospitials NICU Adam was transferred back to his original NICU for ongoing care.
Just days later Adam's breathing deterioated, the ventilators were no longer supporting him, we had many 'quiet room' chats and were told Adam would never survive, and if he by a miracle did survive, he would never leave hospitial and would die within his 1st year. We were told to withdraw treatment as we were causing him suffering.
That was the worst day of my life.
We left the hospitial to go and buy Adam some clothes, i wanted to be able to bathe and dress him afterwards.
Whilst away from the trauma of the hospitial, my husband Dave and i actually talked about what we wanted, what we thought we should do for OUR son, amd decided that we were not god, Adam was keeping his heart beating himself, so if his heart stopped, we would let him go, but as long as it kept going, so would we!
Adam has never worn the clothes we brought :D though i do still have them.
The hospitial called in Professor Neil Marlowe who had been usuing a new ventilation treatment at his hospitial called Nitric Oxide, Adam was the first baby in Nottingham that this was to be used on, Unfortunatly only one nurse had used the equipment, which was very different machines and HUGE gas cannistors so the staff had to be trained as they nursed Adam.
Adam was on the nitric oxide for the next 2wks, during which time, he did begin to improve, then he had to have a broviac line inserted as all his veins had colla[sed and the could nop longer gat any linees in at all.
Adam was supposed to be took to theatre for this, as it involves passing a line through the jugular vein in the neck, and down into the heart area, but everytime the surgeons went to swop Adam onto standard ventailation as the Nitric Oxide couldn't be used in theatre, Adam suffered massive bradacardias and apneas.
The surgeons couldn't move Adam, so they ended up turning his bay into an operating theatre, and did the surgery on NICU!
After this, now Adam could get meds and nutrients again, he improved quite well, and finally came off the Nitric and back onto a standard ventilator, then onto C-PAP, then finally onto nasal prongs.
Adam developed R.O.P (Retinopathy Of Prematurity) due to the high levels of oxygen he had had for such a long time and had laser surgery (back on the ventalator!) but recovered well.
Adam finally left NICU after 22 very long and stressful wks,
Due to the brain bleed, menigitis, Hydrocephlaus and the brain surgery Adam has Quadraplegic Cerebal Palsy, all four limbs and trunk are affected, he has the physical abilities of approx 4-6wks of age, but his mental understaning is approx 2to 4 yrs, this is extremely hard to guage due to limitations.
Adam also started having seizures whilst on NICU which was misdiagonised until after he want home, he was then put on carbamazapine and his last seizure had been when he was 11mths
Because of the long term ventilation Adam developed BPD (bronchal pulmanary Displasire) and is STILL on oxygen, although he only has it all night, whilst asleep, when poorly, or tired, he is 8yrs old in February
Due to the meds he had, gentomycin and vancromycin, he has a hearing condition called Audiotory Neuropathy, and is also a bit deaf
Due to the ROP, he is exrtemely short sighted and can see from approx 6ft with glasses.
Because of all the various medications he had he suffers mutiple allergies mainly skincre produts, some foods, and medications, hospitial tape and is even allergic to the glue on round chest leads, he can have square ones though, different glue, lol. and is now allergic to penicillian and vancromycin,( too many doses while so tiny!)
Adam has had many hospitail admittances, mainly for lung problems, but these are few as he gets older and stronger.
He suffered a major illness 18mths ago, his Shunt had failed, but after surgery he got MRSA which again went to his Cerebal fluid and again caused mengitis,and he developed Toxic Shock Syndrome, due to the MRSA in his blood, and suffered organ failure, we were again told he wouldn't survive.
He was in hospitial for 6wks then his shunt failed again 10wks later, but was home after 1 wk, then readmitted 2 hrs after getting home, with seizures, Adam is now back on Carbmazapine, and his seizures are controlled.
When Adams shunt failed, he fell into a coma, and due to the Toxic Shock Syndrome, he suffered a Stroke, which has left him further disabled, he now has no central vision, only pherical, and his Cerebal Palsy has worsoned, he now has Baclofen, and Botox injecxtions to his upper and lower arms and his hands, but no longer has any control over his upper limbs and can no longer use his hands or hold toys.
Adam is not healthy, not by a long margin, but he is the happiest child anybody will ever meet, he is full of character, a real cheeky devil with an eye for the ladies, lol, Adam is well known that he 'does not do' crying or sadness he cries twice a year when he has his botox injections, and only if he is really really poorly, (honest truth!!)
He is an amazing little boy, who has proved many doctors wrong many times, i would never regret any of the decisions we made during Adam's life, as Adam was making our decisions for us.