Day +44: I'm Melting... Fast

The meltdown continued into a 3rd day, with no sign of subsiding.

I was pretty sure I knew why I was going through my latest roller coaster ride. But there wasn't anything I could do to stop this train wreck that was crashing into everything in sight.

By crying only on and off yesterday, the flood gates opened with a vengeance today to alleviate the build up over the past 48 hours. I spent most of the day crying, and pretty much everyone I spoke to today were privvied to my tears.

Today, I felt overwhelmed. Normally a rational, capable person, today, I found everything in the "too hard" basket. And my muddled head couldn't seem to find a way out of this hole.

At the risk of over-sharing, I was pretty sure I was going to start menstruating any day now.

It was hard getting out of bed again, but I did it, and even had a shower before we left the house. My stomach was in knots for most of the journey, churning with anxiety at the thought of having to deal with Luke the obstinate nurse again. I somehow sensed that Luke had been assigned to us again, and I really didn't want him to look after Sean, ever again, if I had my way. By the time we got to the hospital, I was on the very brink of tears, and it took one little smile from Anne to set me off.

Anne was the nurse consultant who coordinated the worldwide search for the compatible cord blood for Sean, and we had gotten to know Anne well over the past few months. Anne saw me and Sean walk past C2 West, and called out to ask how we were doing. That was enough for me to start bawling my eyes out, and for the next 20 minutes, I whinged and complained about how hard everything was, and how unfair life was.

I complained about not having any help at home, and wished I had more cooperation from Jonathan with the cleaning and tidying at home. I moaned about how hard it was to get the right amount of food and fluids into Sean, and how trapped I was feeling at home. I groaned about how I was never fully prepared for how hard life was going to be once we got home, and that the hospital should have given us a better picture about how we could feel so claustrophobic once we were home to see out the isolation period. I bleated about everything and anything, and at one point, I stopped making sense to me.

I felt like I was whinging for the sake of whinging. I didn't like the sound of my own voice much any more, but my whinging left me wondering why I was whinging about things, when Sean was doing so well and I should be thankful and grateful for Sean's progress.

I was feeling a bit spent by the time I pulled myself together to let Ally know we were here. We were shown to Isolation Room 2 again, and just as Ally was getting up to show us through, I asked her who had been assigned to look after us today. She replied that Luke would be our nurse, and I very quickly asked her for a different nurse. What Ally said made me wonder who else had already asked the same thing today - she said "I understand, I'll just go and find you another nurse". Hmmm...

When we got to our room, we met the lovely Kerrina who was to be looking after us today. She got us all settled before going to get her trolley prepped for all the things that she needed to do. I put Sean into the cot and started feeding him his breakfast, before remembering that he hadn't been weighed. Oh well. They will just have to weigh him next week.

Tina, the Nursing Unit Manager for C2 North, came in to introduce herself, and to have a chat about why we asked for a change of nursing personnel. I explained to her that I had a personality clash with Luke, and whilst I had no problems with his nursing skills, as he was very professional and proficient in what he did, I just didn't find him to be at all collaborative, and if anything, very stand-offish when it came to dealing with me. I told Tina what had happened last week, and how Luke did not take anything I had to say into consideration when it came to treating my son. I told her that my stomach was in knots during our drive to the hospital, because I was dreading having to deal with Luke again today, and I felt that for my sanity and well being, I was not going to let Luke near Sean again.

Tina was most understanding, and took in everything I had to say about Luke. She said a few things that made me wonder how many other people had had the same conversation with Tina about Luke. In any case, I assured Tina that I didn't have an issue with his nursing skills - his people skills, however, left a lot to be desired. Tina assured me that she will take the matter up with Luke, "along with several other issues".

I felt a little bit guilty about getting Luke into trouble, but I had to say something to someone. Tina apologised for my feelings of anxiety, and promised to try her best to make sure we didn't have to deal with Luke again.

Kerrina was wonderful. She did her job quickly and was lovely and friendly towards me. She could see I was feeling a bit fragile, and let me talk when I was feeling chatty. Kerrina used to work in C2 West, but she was now a part-timer as she lived on the central coast. Such a shame to hear that - I'd hoped we would be getting her to look after us on a regular basis. Never mind. As long as we didn't get Luke again, I'll be one happy mummy.

Megan paid us a visit - she'd heard about the start of my meltdown on Tuesday, and was keen to see how I was going. I spent a very good chunk of the morning crying to Megan, repeating to her everything that I'd told Anne. I was feeling so overwhelmed by everything, much more so this week than recent times. I had coped so well up to this point, but this week, today (and yesterday and the day before), I just felt like everything was getting on top of me and I was not swimming any more. I felt like I was drowning.

I was worried about everything. Worried about money. Worried about whether I will have job to go back to. Worried about keeping the roof over our heads. Worried about Sean's recovery. Worried about the amount of food and fluids Sean was taking per day. Worried about keeping my marriage alive and happy. Worried about whether or not I was being a good wife, a good mother, a good daughter, and a good friend.

Megan thought I could benefit from some counselling, and said she would see about organising something for me. I thanked her, but I didn't know when I would find the time to talk to someone.

Dr Trahair and Steph came to see us as well. As usual, Steph examined Sean before Dr Trahair came by, and Sean was asleep in his pram by the time Dr Trahair was able to see us. We went through the blood test results, and again, Sean's urea levels were still a little bit high. Dr Trahair was very quick to let me know that it wasn't of great concern, but like Dr Barbaric, he suggested that we tried to give Sean a little more fluids during the day. Again, I cried and wondered out loud how on earth I was going to try and do this, on top of everything else during the day. It just felt too hard.

Two things came out of today - Dr Trahair was happy with Sean's progress, and we were able to stop giving Sean the Mycophenolate Mofetil. Yay! 2 drugs down. A few more to go. Our Clinic visits were also dropped from 2 per week to once a week, and our next appointment is scheduled for next Thursday. I was a bit happier about this news - I could handle getting up and at it by 6am once a week.

On our way home, I received a call from Margot from Camellia Care Cottage, asking if it was still OK for her to drop around to our house this afternoon to see how we were going. I had hoped she would still be able to come, after our unexpected cancelled visit just before we went into hospital. I readily confirmed that we were home for the afternoon and looked forward to her visit at 3pm.

Margot is our guardian angel. If it wasn't for Margot, Sean would have gotten a lot sicker before the doctors did anything to help him. Margot was the person who agreed with my concerns about Sean and his poor health, and forced our paediatrician into action on 5 January, by telling him in no uncertain terms that Sean was ill, and Sean needed to be examined by a doctor immediately. We are forever indebted to Margot for making the doctors sit up and notice how sick Sean was.

Margot arrived promptly at 3pm, and was pleased to see Sean so well and mobile. She remembered the skinny little monkey from January, and Sean did his best to show off all his skills and abundant personality to Margot. Sean was running around the house, playing with things, climbing on chairs and couches, bringing Margot toys and cheeky smiles, and totally delighted and entranced her.

We sat and chatted for a couple of hours. Over a pot of tea, I updated Margot on what had happened with Sean. I had given her a call while we were in hospital during transplant to let her know where we were, and she was pleased I kept her up to date with the details, as she had been worried about Sean since our last meeting in January. Margot listened intently and offered gentle advice and warm words of encouragement and comfort, especially when I told her about my unease with Luke the obstinate nurse and my discussions with the nursing unit manager earlier today. Margot reminded me that I was Sean's advocate and voice, and it was only fair that if Sean wasn't receiving the best care in my opinion, then I should speak up.

Before I knew it, the skies had turned dark and it was well past 5pm. Margot got up to leave, and asked me if I would like her to speak to the counsellor she worked with, and have her call me to set up a time for a home visit. For a moment, I thought about declining the offer, but if the counsellor was able to pay us a home visit, then that changed the ball game. Sean could run around at home and play with his toys, and I could sit and chat with the counsellor. I agreed to Margot speaking with the counsellor, and thanked her for paying us a visit.

I felt all cried out, yet I was still feeling teary. I was rapidly becoming tired of feeling like this. I wonder how many more days before I finally shake this thing off. Maybe an early night would help.