Our Little Sunshine's CDH Journey: Another chest drain

CDH

Congenital Diaphragmatic Hernia (CDH) is a birth defect that occurs when the diaphragm does not fully form, allowing organs to enter the chest cavity preventing lung growth. CDH strikes 1 in every 2500 babies. The cause is not known.

Every CDH baby is different, there is no way to predict the outcome of any patient. Some babies with no diaphragm and little lung growth have survived, while some babies with full lungs do not. These children are very different, requiring different treatments, and varying amounts of medical support.

50% of babies born with CDH do not survive and sometimes the remaining 50% have to overcome very difficult medical complications. Many CDH babies have minor lasting health problems such as feeding aversions, asthma, scoliosis, or short-term oxygen dependency. A small number have major lasting health problems such as ventilator dependency, brain damage, or hearing problems. Many patients have no long-lasting medical problems at all other than a scar from the CDH repair. CDH can occur alone or with other birth defects, and rarely, it occurs as part of a syndrome.

Monday, 7 December 2009

Another chest drain

Yesterday (sunday) when we went in the mornin were told lewis had a routine chest xray before we got there, which is nothin unusual but about half 4 the doctor came in and asked could she do the chest drain just now (sounded like she thot we knew he needed it done again, which we didnt) and could we give her about 15 minutes till she done it, so he had his chest drained again, 1st time was friday n this time she said it was nearly double the fluid than friday, wishin they wud just fit a proper chest drain now, can't bear the thot of them stickin a needle in him everytime n takin the fluid out that way, it reminds me of the amnio n that was really really horrible x startin to feel a lack of communication to be honest x anyway roll on xmas even tho we'll be spendin it in ronald mcdonald i can't wait to see lewis on xmas eve in his cute elf outfit and on xmas day in his equally cute santa outfit x

2 comments:

Unknown said...: Hi Hayley
Sorry to hear poor wee Lewis still having a problem with fluid , hopefully this just a little blip. Make sure you let staff know that you feel you not being told about everything , its everyday stuff to them but not to you. We all still thinking about you we bot appointment oo wed hope to see you then x x; 7 December 2009 at 15:04
dai said...: Just wanted to let you know that I am thinking about your little precious boy and praying for him.

Love,
Dai; 8 December 2009 at 18:57