Transplant News & Nasty Surprises

Today is the last day our beautiful boy will be free of tubes and lines for quite some time.

Tomorrow, we will hand over our gorgeous little man to the doctors, who will insert a central line and a nasogastric tube in the lead up to the transplant. Sean will sport these fetching accessories for the next few months; potentially until Christmas time.

Up until last Friday (2 March), we weren't aware that the central line and the NG tube would stay in Sean post-transplant. Up until the Sunday before last (26 February), we didn't have any real idea what would happen with Sean as far as the transplant and the conditioning therapy were concerned. And up until last week, the dates for our hospital admission and the transplant were moving every time we spoke to someone from the Sydney Children's Hospital. Jonathan and I were getting more and more anxious about the whole thing, and every time we spoke to Dr Gray, we were told that "the big talk" with Dr O'Brien would happen around about 13 March, with a view to us being admitted straight after the talk.

On Sunday 26 February, my sister Grace and I had a long chat about Sean's impending transplant. Grace asked if I knew what was going to happen, and I told her that we were still waiting to have "the big talk" with Dr O'Brien. Dr Gray had previously advised me to not look for information on the Internet, as it could be misleading and misinformed, so I had steered clear of doing my own research. Grace, on the other hand, had been busy doing some research of her own, and she told me what she had discovered.

Grace's explanation was more detailed than the "glossed over" piecemeal version we had received from Anne and Dr Gray on Valentine's Day, and it made a lot more sense because Grace's version didn't include "but that will be explained more when you have the big talk with Dr O'Brien" at every twist and turn.

Even with Grace's explanation, we still had a few questions to ask Dr Gray, so when he called us on Tuesday 28 February to check on us, we told him we needed answers now and weren't prepared to wait until 13 March to hear the details from Dr O'Brien. No one had actually told us the whole process and what happened from the moment we were admitted to hospital and beyond. Grace's version had given us a good idea, but we needed Dr Gray to confirm things for us. Neither Jonathan nor I wanted to hear the medical stats - we just wanted the "TV friendly version" from the medical professionals - the "generic" version, if you will, so we had some idea of what will happen to our son. Being repeatedly told "Dr O'Brien will give you all the answers when you have the big talk some time in the near future" was just not flying any more.

Dr Gray did his best to string things together for us. Step 1: Sean will need a central line, which will allow intravenous medications and fluids to be injected, and blood to be taken for various tests. We had been assured that the doctors will need A LOT of blood for tests. Due to Sean's XSCID, Dr Gray was keen to see the insertion of the central line as close to the date of admission as possible to reduce the risk of Sean catching something between the two dates. Step 2: Hospital admission. Step 3: Conditioning therapy begins. Dr Gray had been and continued to be in discussions with a number of his peers to decide the best course of therapy to use on Sean, and hoped to have a definitive answer shortly. Step 4: Transplant. Dr Gray confirmed that Sean will receive an umbilical cord blood transplant. Step 5: We wait for engraftment to take place (i.e. for Sean's body to accept the new cells and grow some more), which could take between 10 to 28 days. Step 6: Discharge from hospital once Sean was well enough to go home. Step 7: The doctors would need to keep a close eye on Sean post-transplant.

Dr Gray then gave us some new dates to put into our diaries. The teams were keen to get a wriggle on with the transplant, so there was a chance we would be admitted on 13 March to start the whole thing. The last potential admission date floated by Dr Gray was 19 March.

Moving things forward was a bit of a shock to us, but once that wore off, we were thrilled with the news. The sooner we got things started, the sooner it would all be over.

On Leap Day (29 February), Sean accidentally pulled out his NG tube, after vomiting his lunch. After a frantic call to Dr Gray, it was decided the tube would stay out for the time being. Sean's weight had plateaued at 9.5kg, and as he was eating relatively well, Dr Gray wasn't too fussed about getting the tube reinserted right away.

Sean was due for another IVIg on Friday 2 March, and we arrived right on time to start the infusion. Dr Percival needed to draw about 30mL of blood from Sean for testing, which was quite traumatic for Sean as Dr Percival had to stick him twice to get the blood. Sean fell asleep shortly afterwards to recover from the trauma, and it was absolutely perfectly timed with the infusion. While he slept, Jennifer the dietitian paid a visit to see how Sean was doing.

Whilst we were having a chat about the NG tube, I received a nasty shock. Up to this point, I always thought that once everything was finished, Sean would be discharged from hospital free of tubes and lines. No one had bothered to tell me that I was wrong. Jennifer told me, in no uncertain terms, that Sean will 100% be discharged from hospital with both the central line and the NG tube still attached, and these lines would likely stay attached to Sean for a few months after the transplant. Yes. MONTHS.

My heart broke. My dream of us returning to a normal life by July was completely shattered. My slim hope of going back to work some time this year flew out the window.

I texted Jonathan straight away, and told him that Sean's recovery period would likely stretch to December. It was a huge kick in the teeth for us, and I made a demand to Dr Percival for the "big talk" with Dr O'Brien to happen on the same day as Sean's central line placement. We needed to know more information straight away, so that we could prepare ourselves for the long haul, explain the situation to our parents, and give the Evil Witch a heads up on the latest news.

The next kick came from Dr Percival. The central line placement required an overnight stay in hospital, meaning we would be admitted on Thursday 8 March and be discharged on Friday 9 March. I asked her twice to confirm this new piece of information, as Dr Gray had previously told us it was a day stay only and we were able to go home that night. Dr Percival confirmed it was hospital policy to observe patients overnight after a central line insertion. Damn it. We had not planned on another overnight stay, and in light of this new information, Jonathan was going to have to take Friday off work.

Megan the social worker paid us a visit, and introduced her team leader Catherine to me. Catherine was going to look after us on Tuesdays if and when we needed to talk to a social worker on the one day Megan didn't work. It was nice to meet Catherine, and Megan and I had a good chat about various things, one of which was my concern that Jonathan and I were not getting enough information about Sean's transplant. Megan undertook to talk to various people to get the "big talk" happening sooner rather than later.

Laura, the clinical nurse consultant for the Cord & Marrow Transplant Programme stopped by with a booklet for me and Jonathan to read. She also gave us a list of dates and directions relating to the central line insertion, including times to call a special number at the hospital to confirm admission and fasting and arrival times. Laura also put all the dates back to the original ones that were floated weeks ago - the "big talk" was to happen on 13 March, with a view to Sean being admitted in the week commencing 19 March.

Sean slept through most of the infusion, and woke just as the Ear Nose & Throat doctor arrived to examine Sean's ears. Poor little guy - after such a nice sleep, he woke to a strange man wanting to poke and prod in his ears, and Mummy holding him down to let the strange man poke and prod in his ears. Thankfully, the examination was over quite quickly, with the ENT doctor prescribing some ear drops and antibiotics to clear the gunk build up in Sean's ears. The ENT doctor wanted to give Sean's ears a good clean out, and was going to try and tack this procedure on to the central line insertion.

The past week had been great, with Sean able to run around and enjoy himself without the NG tube. Jonathan and I were grateful for that little accident, as we didn't need to deal with the overnight feeding and all the things associated with it. I'd been able to go out in public with Sean without stares from strangers. The stares weren't so much from the adults as they were from the children. Adults knew not to stare or ask questions, but kids were so inquisitive, and straight forward. And their questions to their parents would set off a chain reaction of emotions - the parents would become embarrassed and tried to shush the kids, and I would get upset for the parents, and also get teary because my kid had a tube and those other kids were healthy and didn't need a tube.

Earlier today, I needed to call the hospital to confirm everything. The nurse I spoke to told me Sean needed to fast from 6.30am tomorrow and we needed to arrive at Ambulatory Care at 10am. Then she added that we may need to go to C2N to get platelets prior to the central line being inserted. I flew off the handle at this latest piece of news. No one, at any point, at any time, told me that Sean needed to get platelets tomorrow. The nurse was unhelpful, and kept telling me I had to call Sue at C2N to get further details about the platelets. I lost it at this poor nurse, crying and yelling at her, trying to get to the bottom of this latest bit of news about the platelets. I threw in every name I could think of and hoped she was able to tell me who ordered the platelets for Sean. I didn't even know what platelets were! Finally, after about 5 minutes of yelling, the nurse told me she would call everyone to get the story straight, and then contact me again to let me know where we needed to be tomorrow.

I immediately placed a call to Dr Gray, who managed to sort things out for me. It turned out the nurse at the Ambulatory Care unit had mixed up Sean's file with another patient's, and we didn't need to go to C2N to get platelets after all. We also clarified the length of time we were to spend in hospital for the central line insertion - Dr Gray was under the impression it was a day surgery and we would be home by tomorrow night, but Dr Percival confirmed it was an overnight stay. Sean would need to have more blood drawn tomorrow for further testing, especially to check the levels of IgG antibodies in his system. Dr Gray said there was a chance Sean may receive another infusion if the levels are low again.

Dr Gray also confirmed that Sean would require a Glomerular Filtration Rate (GFR) test done on Monday next week to see how well Sean's kidneys worked, and the "big talk" with Dr O'Brien was all set for next Tuesday. Next Tuesday can't come quickly enough for us.

Sean is well and truly asleep now, blissfully unaware of the major event that is to happen tomorrow. By tomorrow afternoon, Sean will have a central line and a new NG tube and squeaky clean ears. I still haven't repacked our "go bag" from our last trip to hospital. It's going to be a long day tomorrow, so I should go and get some sleep. Here's hoping there are no more nasty surprises tomorrow.