It is has been quite a while since I posted an update on Albert's progress. As one friend said, "No news is good news!" While this is generally true, unfortunately there has been plenty of action between home, health professionals and hospitals.
The good news is that there have been no life threatening issues lately. Albert is advancing in motor skills, responses, producing a variety of new sounds and actions over the last month or so, delighting his specialists and therapists with his progress. He is very active when awake, managing to move himself into the most unlikely corners of a room if left on his mat even for a few minutes.
Unfortunately Albert is not making progress in oral feeding. If liquids go into his mouth, they end up in his lungs. He is able to swallows a few mouthfuls of puréed food, but not enough to be called a feed. The specialists finally conceded that it is unlikely that Albert will be feeding orally in the near future, so they initiated a process that moves us towards having a tube placed directly into his stomach through his side. The prospect of a new round of surgery, recovery and learning a new feeding procedure seemed daunting at first, but the advantages of Albert being free of his nasal gastric tube are too good to overlook. Nasal gastric tubes are designed to be used for a few weeks, perhaps a month, while someone is in hospital under careful observation. Having Albert home is great but, as he becomes more and more active, the likelihood of his tube catching on things, tangling around his neck etc is increasing daily. Susie and I have found ourselves in emergency departments (on separate occasions) after his tube has been pulled out. (The pic above is taken in an emergency department just after his tube was pulled out.)
Albert is now waiting for surgery. The line up for surgery involves our paediatrician referring us to a hospital paediatrician, who barely glanced at Albert before she wrote a referral to the outpatients department of the hospital. Outpatients then refer the file to a surgeon's office, and his office calls us in to 'consult' the surgeon and give our consent. In this context, 'consult' seems to mean that he tells us what he intends to do surgically, and recites a long list of things that could go wrong, before asking us to give consent to the operation. We have an appointment to meet the surgeon early next month.
The procedure from there is that the surgeon places Albert in the queue for surgery, which is governed more by priority/urgency than waiting for our turn. We have been told that the wait could be 1-6 months depending on other cases.
Back to the waiting game.
The reason I have not posted is more about mental exhaustion than any lack of news. Susie and I have been plodding along, taking each day as it comes, but the emotional drain has left us flat. Having Albert home is great. It is not great that we do not have the mental or physical energy to rejoice when he smiles, laugh as he gurgles, clap as he rolls over and cry as he coughs his way through a cold again.
Albert is well, he is improving in many ways, but it is still a long exhausting haul.