Things Are Looking Up

As each day passes, we are seeing Sean's health improve under the watchful eyes of doctors and nurses.

By the time our email to Jonathan's parents was written and sent, Sean was completely free of wires and tubes and lines. The oxygen tube was the first to go, followed closely by the probe to monitor his oxygen saturation levels and his heart rate. Last but not least, the cannula was removed and Sean finally had the use of his left hand again.

I learned a very important lesson yesterday - Wikipedia should not be read at 5am when one is upset. And another - sleep is good.

As we headed towards the weekend, various doctors promised to visit over the next couple of days. We weren't expecting them to visit, so it would be interesting to see if they do drop by. We continued to use the whiteboard in our room as our "work in progress" chart, updating it when we had further questions for our medical team, now comprising the Immunology team headed by Dr Gray, Dr Allen the paediatrician, Megan the social worker, Jennifer the dietitian, Lauren the speech pathologist, Anne from the bone marrow transplant team, Prue the nursing unit manager, a fab team of nurses, as well as consultants from the dermatology and the haematology departments.

We continued to try and wrap our heads around this disease, and I tried to prepare myself for next week, when Jonathan returns to work. We held on to the thought of going home early next week.

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Hi Mum and Dad,

Apologies for the lack of update last night. I was exhausted and once the little man fell asleep, I decided to get some shut eye too.

What started off as a bad day yesterday gradually got better and better. The little man woke at 3.30am yesterday morning, and took almost an hour to fall asleep again. I was totally awake by the time Sean did finally go back to sleep, so I decided, in all my wisdom, to look up information about X-SCID on the internet. Not such a great idea in the end.

The news was very grim, to say the least. The life expectancy of a child with SCID was short, and there really wasn't a good quality of life for SCID kids. The one thing I've always told Jonathan about raising our son is that I don't want him to be a "cotton wool kid" - I really wanted him to explore and do as much as he wanted, and go as far as he can go. The stuff I read on the internet didn't support that way of thinking.

The nurse found me sobbing at one point, and told me I should try and not read too many more things and to get some more sleep. By the time Jonathan arrived at the hospital, I was beside myself. I was heaving crying and had a full list of questions to ask Dr Gray when he arrived.

Thankfully, Dr Gray put us at ease with some reassuring answers. Right now, the focus is to get Sean all better from the pneumonia. Then, we need to get his weight up to what kids his age should be, which would make him stronger for the treatment plan that Dr Gray was devising. We can't go ahead with the "cure" until Sean is stronger and healthier.

The thing is, at present, they are still doing tests to see exactly what Sean has. We are told it is SCID, but they are still narrowing down the exact type of SCID. It will be a little while yet before we know for sure what kind, and then we will have the discussion as to what is the best treatment to cure Sean of this disease.

We have also been warned that, even after extensive treatment, there is still a chance that Sean will require an injection / transfusion for the rest of his life, to maintain the stuff lacking in his immune system. Jonathan and I are OK with that.

One of my main concerns was that this whole thing, from now to "cure" will take a decade, perhaps more. Dr Gray told us the time span is a lot less - it will be more along the lines of 12-18 months. We were thrilled to hear that!

After that discussion, I felt much better and so much more hopeful about everything. 12-18 months is great - a heck of a lot better than 10-15 years. We aren't jumping for joy just yet, but we are doing a little happy dance.

Sean's appetite continues to improve. We fed him so much food yesterday! He has really taken a huge liking to custard, to the point where he cries if the tub is finished and we take the empty container away. The dietitian is happy with the amount of food Sean is consuming, so much so that Sean won't be needing the nasogastric tube for the overnight supplementary feed for the time being. Go little man! Keep eating!!!

All 3 of us had blood drawn yesterday. Jonathan and I had our samples taken for tissue typing in case we do head down the road of a bone marrow transplant, and Sean's blood was to be tested for a whole bunch of other things. Sean has been so brave - here's hoping he doesn't develop an aversion to needles!

My parents came by yesterday, and I had the very difficult task of asking them some very sensitive questions that I knew would upset them, questions surrounding my older brother, who passed away 3 months before I was born. Dad and Mum stoically told me everything - it was quite poignant, and I felt awful having to ask them to recall such sad events, but they talked, openly and honestly, for the first time in 40 years about it. The information was pertinent to Sean's diagnosis, and fortunately for us, Dad and Mum were willing to finally share the information. It helped that our lovely social worker had organised a Cantonese speaking translator to explain Sean's condition to my folks, so they knew why I was asking the questions.

We passed the information to Dr Gray, who said that my brother Vincent most likely had SCID. The illnesses that led to Vincent's passing were classic presentation of SCID, back in 1972. So sad that it's taken 40 years to learn that.

Late yesterday afternoon, Dr Gray paid another visit to our room, when Jonathan had a telephone chat with a doctor in Washington DC in relation to some tests being run to ascertain our compatibility for the gene therapy trial. After the phone call, Dr Gray saw how happy and great Sean was looking and ordered his oxygen to be removed. For the first time in a week, Sean would sleep without the oxygen line stuck to his face, and we were able to give him kisses all over his face.

With the oxygen off, Sean was reclassified from being a "high acuity" patient who needed hourly observations to a patient who had visits from the nurses much less frequently. It was definitely the direction we needed Sean to head towards for us to go home early next week.

Overnight, the nurses thought Sean had improved so much they even took the probe that monitors Sean's oxygen saturation and pulse rate off his foot! I think that's the reason why Sean slept from 9.30pm to 7.30am today!

A bit has happened today too. The biggest thing is the disconnection of his IV drip and the removal of the cannula! Our little man is free!!! Free to roam the room and explore every nook and cranny!

We've had visits today from the dietitian, who was thrilled with the amount of food Sean was eating. We need to keep it up though, or else the NG tube will still have to be inserted. Dr Gray came by as well, and told us that we still need more bloods from Sean on Monday, but by the look of things, we will be able to go home on Tuesday. He even gave us the option of taking a leave pass on Sunday to leave the hospital to celebrate Mum's birthday with her, but we declined the offer, as we would prefer to stay in the hospital and keep well and be able to go home on Tuesday, as opposed to us going out for a few hours on Sunday and Sean getting sick and then having to stay in hospital for an extra few days. I am missing home so much, and Jonathan is hankering for us to be home too.

Sean is still on antibiotics, but they are all oral ones now, and he's gotten used to the flavour so he's not fighting the syringes. Sean continued to eat well today, which is such a great thing to see. Not a lot is going to happen over the weekend - Dr Gray has promised to drop by both tomorrow and Sunday, and he will give us a bunch of literature on SCID so I don't go looking for information on the internet at 5am again. We've had a visit from Megan the social worker as well - she has been quite helpful so far, and we know she will continue to help us where she can.

The little man spent all afternoon moving around the room and exploring every corner. He was friendly and very happy to see and play with everyone who came into the room. Brought tears to my eyes to see my happy boy playing with so much vigour, only to be reminded that he is really sick.

Jonathan went home much earlier tonight - his friend Craig is going to spend the evening with Jonathan - he needs to "debrief" with friends, and I'm glad Craig is able to spend some time with Jonathan. I hope they're having a great night.

Sean is still awake, quietly laying in his cot. I can hear him moving around a little. What I can't hear are the machines that he was connected to. They are all silent and dormant. It's going to be a good night tonight.

I think I might see if I can help the little man fall asleep. We'll write again tomorrow.

Happy birthday, Dad! Hope you had a good day today. It was lovely to talk to you on the phone this morning. Hope the moving truck is much much more reliable than Rena!