Thursday, 27 February 2014

Albert on Day 9

Well, today has been interesting.

Albert is holding at 0.2 litres of oxygen via the low flow, and still digesting well. His nurse said that he was eager and enthusiastic in the oral feed but his enthusiasm seems to have outgrown his skill at feeding. Although he attacked the bottle teat better than before, he barely wrestled 1 ml from it before becoming too tired to continue. The nurse will try changing the teat in an attempt to convince him to suck, not chew. 

Yesterday I had expressed my concern to the doctor that Albert's platelet levels seemed to have dropped dramatically at about three day intervals. He argued that Albert's levels were holding, and I reminded him (in our conversation yesterday) that today would be the next three day mark. The doctor said he was not expecting a drop this time. It is in times such as these that I hate being right. The test we saw today showed that Albert's platelet levels dropped dramatically overnight, from 99 to just over 50. The normal healthy minimum is 150, (see my post yesterday for details), but I found out today that it can take a baby up to three months to reach that level, so the minimum safe level of 100 is realistic for Albert. Unfortunately we cannot simply keep pumping platelets into our son. The doctors are concerned that a constant flow of platelets might teach little Albert's body that he does not have to try to produce platelets. We need Albert to kick start his own natural platelet production as soon as possible.

One slightly silver lining on this dark cloud is that the problem may be related more to the testing method than to Albert's condition. A second manual count of Albert's platelets revealed a count of just above 100. (The manual count involves looking at Albert's blood under a microscope and counting the platelets one by one! I could not help laughing when I saw the advanced medical technology in described under the heading 'hand counter' on the page linked.) It seems that the larger size of Albert's platelets and the slightly increased thickness of his blood may distort the regular testing method. It is also worth noting that low platelet counts are typical in Trisomy 21 babies. Albert seems to be within the safe zone for the moment. They will take some tests again tomorrow, and keep an eye on him for any adverse symptoms.

We are delighted that the Neonatal Emergency Transport Service (NETS) team transferred Albert back to our local hospital this afternoon and we are looking forward to visiting him in his new surrounds in the Special Care Nursery there this evening!

Albert is likely to be in Special Care for some weeks yet, and the Special Nursery is not open to visitors other than family, so we will have to wait patient for the chance to introduce Albert to you all in person.

(I intend to update this post with more details and pics tonight. Stay tuned!)

UPDATE: We are just now back from the hospital. We were told Albert had been transferred and that he was ready to try a feed. Susie went straight to the hospital and arrived in time for his feed. The wonderful news is that he achieved his very first attachment and, although it is impossible to know how much he drank in that feed, it seems a step forward.

I stayed at home and supervised the consumption of another delicious meal provided by a generous friend, and gave the children the news that they would be allowed to see Albert that evening if their chores were complete on time. I have never seen chores completed so efficiently! We drove to the hospital and startled at least two night shift nurses on our way to the Special Care ward. (Can you imagine walking along a silent hall and suddenly noticing seven children silently standing together, holding hands, just looking at you with wide eyes? The staff seemed somewhat unnerved!)

When we arrived at the ward we were asked to wait at the end of a hall for some time, and then I was summoned into the ward alone, leaving the children with a nurse. It seems Albert had not settled well after the transfer and was still struggling to breathe. Further investigation revealed that his liver has swollen a considerable amount and the liquid levels in his poor little body have risen too high. The doctor tells us that he is experiencing a form of heart failure. Because he has two holes in his heart, his heart is pumping hard just to maintain blood flow. There is a build up of fluids which the liver is struggling to cope with, hence the swelling. Some urgent conversations between Cardiologists from the ICU he just left and the duty paediatrician resulted in the decision to reduce feeding and sustain Albert by a minimal fluid via a cannula (a tube into his arm or leg) until the fluid clears enough to begin feeding. The doctors also added some medication (a diuretic) to assist with the liver function. Several attempts to establish a cannula in both of Albert's arms left him with sizeable bruises, but no success in establishing a viable cannula.

The experience of being told my son is experiencing heart failure, and then hearing his pitifully weak but desperate cry as their failed attempts to establish a cannula bruised his tiny arms has to be one of the worst experiences of my life so far.

The doctors moved away to consult with other specialists via phone and we were allowed to bring the children to see Albert for the first time ever. The children were very quiet but, just after this photo was taken, our six year old boy slowly, tentatively, gently touched an exposed foot and murmured a promise that he would share his favourite toy. On cue, all his siblings all reached out to gently touch a foot, or a hand and murmur their own soft promise. I heard none of the promises and I respect the children's privacy, but I suspect that moment will stay with me forever. The experience of such a gloriously sweet family moment encapsulated within a heart-rending helplessness in the face of Albert's failing health is impossible to describe.

We left Albert sleeping in the Special Care ward. The doctor told us that if his condition declines overnight, or fails to stabilise, he will be transferred back to ICU. We just want our boy home where he belongs.

1 comment:

chimakuni said...

Oh Peter, my prayers, my sufferings and my heart are with little Albert and the family. Thank you for sharing with us the trials, triumphs and joy of Albert. I am honored to be able to pray for him. Your children are wonderful...And I love their promises to Albert. You and Susie are doing a great job of parenting.