Day +17: Light & Hope on Black Friday

FREEDOM!!!

For the first time in 24 days, Sean enjoyed the freedom of being able to run around on the ground and climb on and off couches without being attached to multitudes of machines and pumps.

For one hour today, we saw our little boy explore every corner of the "teenagers' retreat room", which was set aside for our exclusive use. We saw Sean walk around and around and around, back and forth between Jonathan and me, with the biggest smile on his face. We saw our little man climb on and off the big leather couch in the room, and run from one end of the couch to the other. Back and forth, up and down, back and forth, and up and down again. All the while, Sean's little face was split by the biggest smile in the world.

We took the opportunity to Skype with Jonathan's parents. We didn't tell them that Sean was disconnected from the pumps - we just sent a text message to ask them if they would like to Skype with us. Luckily, they were available, and when we called them, I pointed my iPhone at Sean running around the room. I think they enjoyed seeing Sean so active and mobile!

It was lovely, as always, chatting with Mum and Dad. We updated them on everything from our end, and they were quite relieved to hear how well everything was going, and to see their grandson running around the room, just as he did 4 weeks ago. As we had been prepared for the worst, we had prepared our families and friends for the worst, so seeing Sean so active and mobile today would have been a lovely and pleasant surprise for Mum and Dad.

I took plenty of video of Sean being Action Man, so that I could forward them on to my family who are all holidaying in Hong Kong, and to my HK based cousin Carolyn, as well as to Lissy and Penny. They were all thrilled to see Sean's moments of freedom.

The reason Sean was disconnected from all the pumps and machines was because he was doing so well. On paper, Sean was hitting all the right marks - his white cell count continues to increase, as are his neutrophils. The mucositis seemed to be under control, and generally speaking, Sean was doing great. Physically, he was also fine - there were no skin rashes, and the medications that the doctors were giving him to help alleviate the fluid retention were making him less puffy. Sean's energy levels seemed to be on the rise, and he was certainly very aware of everything that was going on around him.

Sean had one upset stomach today - it was almost first thing in the morning and his stomach reacted to the nystatin. According to Dr Trahair, vomiting first thing in the morning was common amongst transplant kids, especially those who were receiving overnight tube feeding. We hoped this was the only vomit for the day.

Based on these points, Dr Trahair was keen to see the volume of Sean's tube feeding increase and for Sean to be fed through the tube for a shorter period of time. The talk was to increase the volume to 50mL per hour for 20 hours, allowing Sean to be disconnected from the milk pump for 4 hours. The target was to get Sean up to 60mL per hour for 16 hours, allowing 8 hours without any milk going into Sean's stomach. This was the first step to Sean relearning what it felt like to be hungry.

Sean's morphine was also disconnected today. Dr Trahair felt Sean was coping with all his pain well enough to go it alone without the faint trace of morphine dripping in the background, and off came that line.

Jonathan and I voiced our concerns with Dr Trahair about the swiftness of switching all the IV medications to be taken orally or down the NG tube, and he said that whilst he understood our concerns, he was following standard practice with the switch, as Sean was doing really well and should not have any problems tolerating the drugs in their oral intake form. Our concern was that Sean didn't seem to be handling the medication down his tube as well as we would like - there had been some vomiting and we wanted to avoid that as much as possible. Dr Trahair was firm about his plans, to push on with getting Sean ready to go home, so we had no choice but to accept the plan of attack.

Throughout the day, Sean had no problems with the medications being pushed down his NG tube. We had to make sure the drugs were pushed very slowly, as as to not upset Sean when the drugs hit his stomach. Sean had been known to vomit if he felt something hit his stomach through the NG tube, and we really did not want to have to deal with any more vomits today.

The chatter about us going home soon, as soon as late next week, was getting louder and louder. Everyone seemed confident that Sean was going to be well enough to be formally discharged by the end of next week, so much so that our clinical nurse consultant Laura brought us some information about our formal discharge, the "what next", the "what to avoid', and the "what to look for that may bring us back to hospital".

Laura again drove home the importance of being in isolation (AKA under house arrest) between when we get home to at least Day +100. Sean is to wear a mask when coming to the hospital, which for the first few weeks will be 3 times a week, for an 8am blood test. Sean should not be exposed to areas such as shopping centres and crowded indoor places such as restaurants and cinemas. We are encouraged to go outside for fresh air, and open parks and beaches are good places for Sean. However, we have to be careful not to be anywhere near building sites, as a certain dust from house bricks can cause lung infections. Our small back garden is fine for Sean, but he should not go near the sugar cane mulch as they harbour fungus that can also cause lung infections.

During our isolation period. we have to be very careful about who Sean comes into contact with. Just like before we came to hospital, and even more important now than before transplant, anyone who were or had been suffering from coughs, colds, rashes, symptoms of gastro, etc, or had been in contact with people suffering from any of the above, should not be allowed in our home. If either Jonathan or I were suffering from these symptoms, the sick parent would have to be quarantined from Sean.

We will need to clean our house more regularly to decrease dust, but ensure that Sean is not in the same room as us when we are doing the dusting and vacuuming. I think we need to engage a professional cleaner to come and give the house a once over - it will make life a lot easier for us and it will make maintaining the cleanliness a lot easier.

I'm being forced to become a "morning" person. In all my 39 years, I have never been a morning person. With the exception of a few times where my body has poorly handled the previous night's over-indulgence, any time I've gotten out of bed at 6am has been by choice, such as going to the airport for a long awaited holiday, or starting a day of volunteering at a charity function. With Sean needing to attend Clinic 3 times a week for 8am starts (Sean will need to have his Cyclosporin A levels checked every couple of days, to make sure he was getting the right dosage of this immuno-suppressant, and the bloods need to be taken by 8am for the labs to analyse the sample and return the results by lunch time), this will mean us getting up at 6am to shower and have breakfast, before heading out the door at 7am to battle peak hour traffic to get to the hospital. Grrr... me no likey; me no likey a lot.

I shouldn't complain. With Sean stuck in isolation until at least 5 July, these visits to Clinic will serve as our outings and our social interactions with the outside world. I should also see this as practice for the future, when Sean will hopefully be involved with sports that will require me to get out of bed at some ungodly hour to shepherd him to a sports field somewhere in Sydney.

The fact that Sean was doing so well had reignited some hope for Jonathan and I to add to our family, and we had asked our social worker Megan to track down the right people to talk to us. We asked her again about this today, and she said that she had found someone, but upon speaking to Dr Gray about the matter, it turned out Dr Gray had someone else in mind that he wanted to introduce to us. We don't mind who we talked to; we were just keen to get the ball rolling, so that if we needed to do something now to make sure we had options when we were ready to explore the issue further, then we still had time to do something right now. We wanted to have as many options available to us as possible, and if we held off and did nothing now, I feared we may not have as many options when we were ready to talk about having another baby further down the track.

For instance, if we needed to harvest eggs and sperm now to grow embryos and keep them on ice, then I felt the sooner we moved on the harvesting, the better it would be for us. I'm not getting any younger, and I was born with only so many eggs, so I wanted to make sure we were able to have as many eggs harvested as possible. If we were to leave this for another 12 months, there would definitely be fewer eggs, if any left.

Jonathan and I had had some discussions about Baby No. 2. We had been preparing ourselves for a "No, no way, it's not going to happen" scenario, but we didn't want to write it off all together without talking to someone. There was some talk about some genetic screening, and Dr Gray's contact (a geneticist working at another hospital) is said to have a special and keen interest in SCID, so we are keen to talk to him. Megan's contact, Jacqui, is a counsellor with the genetics team here at the Sydney Children's Hospital, and since we were here already, Megan felt Jacqui would be a good point to start.

We made the point to Megan that we just wanted to have the options available to us. We didn't want to charge ahead and incur costs relating to the creation and storage of our very own Frosty if there was no way to genetically screen the embryos for SCID. But if there was a way to screen for this disease at the embryo stage, and it was possible for us to add to our family with a guarantee that the next child will NOT have the mutant gene, then we wanted every option possible being available when the time is right.

Megan said she would chase Dr Gray for a follow up to our questions. We hope we would hear back from Megan and/or Dr Gray next week. In the meantime, I need to contact our private health insurance to find out what coverage we have under reproductive medicine.

Sean was so worn out from his hour of freedom that he had to have an afternoon nap. This was the first afternoon nap in a week. So deep was his slumber that Sean was quite upset when we woke him at the one hour mark - we had to wake him for fear he would not sleep tonight.

We didn't need to worry. Sean fell asleep just after 8.30pm, and is currently sound asleep. I have some washing up to do, so I'm going to take this opportunity to go to the kitchen to clean our dishes. The way things are going, we might just be home by the end of next week. That little light of hope at the end of our tunnel is getting brighter and brighter by the day.

Updated at 11:12PM

Vomit count today = 3

While I was in the kitchen washing up, Kate came in to give Sean his mycophenolate down the NG tube. Sean was sleeping soundly until he felt Kate's presence, and became quite upset after the drug went down the tube. He was crying almost hysterically by the time I came back into the room, so I picked him up to comfort him.

Feeling the convulsion, I grabbed the vomit bag and caught every drop. Sean seemed to be better after getting rid of that lot of stuff from his stomach, and was tired enough to close his eyes and doze off.

The dozing didn't last long. Sean became upset again, so I picked him up and sat down with him in my arms in the big chair to comfort him. There was no warning - this time, Sean just coughed and we both wore the next vomit. Nice.

After cleaning off the vomit on both of us, it took another 20 minutes to settle Sean. He's asleep now, and hopefully, he will stay asleep tonight. Poor baby. He was doing so well too.