The strength of a Warrior.
- S is for Son!
When I was 5 months pregnant with Joel, (20 weeks) he was diagnosed with a rare lung malformation called CCAM - Congenital Cystic Adenomatoid Malformation!
Cystic Adenomatoid Malformation of the lung is a multi-cystic non-functional mass of lung. Although the cause of this malformation is still unknown, doctors say that this malformation occurs between 8-12 weeks gestation when the lung buds begin to grow, & although again not certain, doctors say that CCAM is more common in males than females.
When Joel's CCAM was first discovered at Pinderfields Hospital in Leeds at my 20 weeks scan, the mass on his lung was so large, that it had caused his heart to be pushed into his left lung. It still makes me angry when I think that this hospital were not clued up on this condition whatsoever & all they offered me, was a termination. I however fought for my boy & had us referred to another hospital, Leeds General Infirmary. Three days later, we were invited to the Fetal Assessment Unit at Leeds General Infirmary where we then met Mr Crabbe, a pediatric doctor & surgeon who had dealt with hundreds of CCAM cases like Joel's & he is such a lovely doctor, he sat us down & told us straight off the bat that, CCAM IS NOT a death sentence! So long as Joel & I are monitored fortnightly, he would grow & develop at exactly the same rate as any other growing baby! I came out of that appointment & broke my heart, as for 3 days I sat at home thinking I was going to lose my second baby!
I was then given ultrasounds every 2 weeks from 20 weeks up until I was 32 weeks pregnant to make sure Joel didn't develop Hydrops. - Hydrops fetalis is a condition in the fetus characterized by an accumulation of fluid, or edema, in at least two fetal compartments. By comparison, hydrops allantois or hydrops amnion is an accumulation of excessive fluid in the allantoic or amniotic space, respectively. If Hydrops is not detected early, it can be fatal to the fetus & even the mother.
Fortunately, Joel was one of the lucky ones & developed zero complications whilst in utero & came into the world via emergency c-section when I was 2 days overdue! Almost immediately after Joel was born & we'd had a very brief cuddle, he was rushed off for x-rays & placed on a heart monitor for 24 hours. Thankfully Joel's x-rays came back good, & with the heart monitor being a portable machine, that meant he was able to remain with me & didn't need a cot in NICU, but we were put on the Maternal Transitional Ward - which is a ward for mothers & sick babies.
The first 11 months of Joel's life, ignorance was bliss! We just got on with things like any normal first time parents, enjoying our first baby! Joel had his first check-up at 4 months old & after more x-rays we were told that because Joel's CCAM was only small Mr Crabbe didn't see any problems as to why Joel couldn't live a normal life with ccam & not having to go through any surgery.... We were so thrilled. We went home 2 very happy parents, but it didn't last long... Over the following 5 months, Joel started to develop chest infection after chest infection, sometimes he would get one straight after the other & was always on antibiotics, so when we saw Mr Crabbe again when Joel was 11 months old, he decided to book Joel in for a CT scan so that he could get a much more detiled look at Joel's CCAM & see what it was up too. So on 31st August 2011 Joel was put under general anesthetic & his CT scan went ahead. It took 30 minutes altogether for the scan to be completed, but 30 minutes to me, felt like 30 hours!! After the scan, Joel was then taken to the Children's Day Ward in LGI to come round. Once he had come round & the nurses were happy that he was well enough to go home, off we went & life carried on as normal again for a few months before our next appointment.
A few months past & we celebrated Joel's first birthday, then in October 2011 we received our appointment through the post to see Mr Crabbe again. On the morning of our appointment, I was a total wreck, in instincts were going wild & thinking back now, I was right to be so worried. When we saw Mr Crabbe, he confirmed our worst fears, Joel's CCAM had continued to grow after birth (which is very rare) & it was once again pushing his heart over into his left lung & it was why he was developing so many chest infections. Mr Crabbe was so lovely, he explained that he wanted to do surgery to remove Joel's CCAM as soon as possible before the bad weather came so that he didn't get really ill & end up in hospital. I fo course, broke down into tears, but Mr Crabbe gave me the biggest of cuddles & told me not to worry & that the surgery was a doddle - to him! He explained a lot more things to us about what he was going to do & what would happen, & it's safe to say that both myself & Neil went home with our heads swimming! A few days after our appointment, we received a letter in the post with Joel's surgery date - Mr Crabbe wasn't messing around! Joel's operation was to be done on 14th November 2011, just 4 weeks after our appointment. I vaguely remember looking at the letter, seeing the date & then completely losing the plot & bawling my eyes out in sheer fear. What mum wouldn't right? The next couple of weeks kind of passed in a blur as we made sure we had everything ready for our boy going in for his surgery, & then on 13th November 2011, Neil's dads birthday, Joel was admitted into hospital on the evening before his operation & when we saw Mr Crabbe on the ward, he told us that Joel's surgery would be at 8.30am the next morning & would take around 4 hours.
I didn't sleep that night, not one wink.
At 8.30am the next morning, my stomach was churning & I felt physically sick as I walked down to theatre with my baby in my arms. Watching your child be put under has got to be one of the worst things I have ever seen in my life, they had to kick me out so that they could do their thing & get him to sleep, because I started to stress, which made him stress! so once he was asleep, Mr Crabbe popped his head out & assured me that Joel was in safe hands & that I could quickly come in to give him a quick kiss & cuddle, then afterwards, I was escorted back to the ward by a lovely nurse, absolutely breaking my heart where I then sat in the reltives room trying to pull myself together whilst I awaited the arrival of Neil & his mum, although, as soon as I saw them, I burst into tears again! We then planned to leave the hospital & go out for some breakfast, as it was going to be a long wait, although I wasn't really that hungry.
5 horrible hours later, which was one hour longer than Mr Crabbe had said so I was hysterical, practically wearing a hole in the floor from my pacing & worrying, a call finally came at the nurses station to say that Joel was finally in recovery & awaiting to see his mummy & daddy. I couldn't help myself, I bolted out of the ward & ran all the way to recovery leaving poor Neil to try & catch up with me.. (oops) When I got there, I didn't need them to tell me where he was, my ears instantly picked up his cries & I followed his voice to his bedside, it was like some crazy radar! I wasn't prepared for what I saw though, Joel was covered in tubes, wires & bandages! He was crying & very groggy. The nurse tending to him then pulled me up a chair & placed my boy gently in my arms so I could hold him, whilst they upped his morphine & attached his chest drain to a bucket, ready for transporting him back to the ward.
The next week spent in hospital was the most heartbreaking & frustrating time of my life. I had to watch my son in pain & there was absolutely nothing I could do to take any of it away. I couldn't even really cuddle him due to his chest drain stuck in his side! I did absolutely everything for Joel, even pain relief, as he wouldn't let the nurses near him, so instead, the nurse would sit with me whilst I gave it to him because he would only take it from me. When family came, I got him out of his bed for cuddles so that I could change it his chest drain would sometimes leak. Thankfully by day 3 in hospital Joel started to pick up a little bit, he was more awake & finally he started to eat - it was nanna who fed him his first meal, shepards pie, followed by two helpings of ice cream! I won't ever forget it because I remember the sheer enjoyment in his face as he was eating it.
On day 5, Joel seem to want to get out of bed, so we sat him on the chair next to his bed with pillows to watch some tv, or we'd carry him down to the playroom for an hour, just for a change of scenery, but he'd still get tired & sore very quickly so these energy bursts never lasted long before he was crying to go back to bed & sleep.
On day 6, Joel's chest drain was cleaned & he was given an x-ray to see if his lung had inflated enough for the drain to be removed. The results came back the next morning & the answer was yes, he was able to have his drain removed & we were one step closer to be able to go home! Later that afternoon Mr Crabbe came to remove Joel's chest drain & because I had heard a young boy having his removed earlier that morning I was a total nervous wreck. I expected crying I screaming from Joel too, but he didn't make a peep, he winced slightly when the dressing were removed, but he was so calm, it's like he was so ready for it to come out. He was so brave.
Day 7 came & we FINALLY got the all clear to go home!!!
It was like magic.. the second we walked through our own front door, he seem to muster up some energy out of nowhere & that night he was up rather late playing with his daddy & all his toys like this last week hadn't even happened.
Joel will be 9 years old this year & he will hopefully at some point this year, be getting his last appointment with Mr Crabbe to be discharged as the lungs stop growing at the age of 9.
He is & always will be my little warrior.
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