Learning To Live With SCID

We'd been in hospital for nearly a week, and we were told today that we were unlikely to be home for another week.

There were so many samples to be taken for tests today. Sean had to be "drained" again, by an incompetent doctor who couldn't read, which resulted in Sean being stuck twice in the space of 30 minutes. The poor little man was already so upset with the first needle, and was even more traumatised after the second. Sean was rapidly becoming a pin cushion; we are lucky though that Sean has good veins, both in his arms and in his hands. If Sean had bad / poor veins, the process of drawing blood and administering medications would be that much harder.

Sean was still quite severely underweight, and the doctors talked about inserting a nasogastric (NG) tube into Sean to give him more nutrients. Poor thing - we so didn't want this to happen, me in particular, as I can still vividly recall my own experience with an NG tube. I was 5 years old, having just had emergency surgery to remove my ruptured appendix, and the doctors had to insert an NG tube in to me. The feeling of the cold slithering plastic that snaked up my nose and down my throat has stayed with me all these years. I can also remember, like it was yesterday, the doctors and nurses performing nasogastric aspirations on me during that time, but thankfully, this was something Sean did not require.

On top of all the stress we had been experiencing, we have had to deal with some rather unsympathetic and incredibly insensitive people. One of these people was a dietitian assigned to oversee Sean's food intake and weight gain. The dietitian was 26 weeks pregnant, which she shouted across the room to us as her excuse for not wanting to enter the room any further than the door. She also shouted that while she wanted to get Sean's history, she would not do it in our room, and told me to follow her to another room thus separating Team Hill. For all of our time together, Jonathan and I have always worked together to tackle problems and issues. Two heads were better than one, and we knew we worked well together. To separate us, especially now that we're dealing with our son's health and coupled with sleep deprivation, was not a good move.

I tried my best to give the dietitian all the information she needed. By the time I returned to our room, I felt drained and exhausted. Jonathan and I came to the conclusion that we would ask our lovely Dr Gray for a different dietitian.

We understood her reluctance to enter the room, in case Sean was suffering from an airborne infection. She was, after all, 26 weeks pregnant. But earlier in our stay, we were nursed by a lovely and wonderful carer who was 30 weeks pregnant. And we were in the Infectious Diseases ward at the time! If the dietitian was so paranoid about catching a bug from her patients, then perhaps she should have thought about where she worked, and what her patients and their families have had to go through already, before shouting instructions across the room from the doorway. Our minds boggled at the way the dietitian treated us.

Today, we met a gorgeous nurse called Amy, who would become our nurse for much of the rest of our time in this ward.

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Hi Mum and Dad,

We are getting closer and closer to a definitive diagnosis.

Dr Gray is pretty sure Sean has a form of Severe Combined Immunodeficiency (SCID), and is continuing to run tests to pinpoint which type of SCID he has. From what we've been told so far, Sean appears to have the X-linked type, which means I had the mutant gene that was passed on to Sean.

It's great that we are getting closer to the end of one phase, so we can look towards the start of the next. From what Dr Gray was saying today, it may be some time before life will look and feel "normal" again. We should be prepared for me not returning to work for some time, so that we can adjust to the treatment plan and watch how Sean deals with life outside of the hospital. We have been given quite detailed instructions as to what to look for in case Sean does contract anything, and what to do if Sean gets sick. It looks like we will become very familiar with this hospital in the future.

We've also been given a list of symptoms to look for in other people that we need to avoid being in close proximity to, so we don't accidentally pass anything on to Sean. As a precaution, we have to be very vigilant with any symptoms and germs, as we can't run the risk of Sean being infected by anything that our friends and family may have or had come into contact with.

We've had a pretty big day today, with bloods being drawn at 6.30am by a doctor we hope to never see again, as she made a mistake and had to re-stick Sean for more blood at 7am. Poor little man. We had a dietitian drop by to devise a plan to help Sean gain weight. We didn't like her either, as she refused to enter our room and examine Sean because she is 26 weeks pregnant and paranoid of catching a bug from our ill baby. Um, so why do you work at a hospital??? She made such a huge deal about not wanting to be within 5 metres of Sean, and yet we had previously been looked after by a nurse in the infectious diseases ward who is 30 weeks pregnant. Ding bat. Anyway, she wants to insert a nasogastric tube into Sean to give him a supplementary feed overnight to increase his calorific intake. That was to happen late in the afternoon, but when the time came, the nurses weren't able to get the tube down into Sean, so we will try again tomorrow.

Sean is eating well, and had taken a huge liking to custard. For dinner tonight, he ate 2 tubs and finished off his sweet meal with a jar of jelly. He has put on a little bit of weight, and we hope he continues to do so from now on.

We finally saw our social worker Megan, who was supposed to see us yesterday. Turned out she works part time and yesterday was her day off. We had a large number of questions for Megan, and she was most impressed that we had made a list of things to ask her. We feel a bit better about a few things now that we have spoken with Megan.

One of the lovely mothers from Mothers Group works at the adult hospital next door to where we are, so she came by for a visit. She brought us the most delicious muffins and it was really lovely to see another friendly face. Speaking of Mothers Group, they had some gifts sent to Sean for his birthday this afternoon. Sean is now the proud owner of the most gorgeous blue heeler called Bluey, so soft and fluffy, and Rupert the Frog who makes a noise when you push his back. There was also a book and a green wand that makes a whirring noise when you tip it from end to end. Sean loved his Thomas the tank engine balloon the best, and those wonderful ladies even got chocolates for me and Jonathan. So thoughtful and unexpected. We are so lucky to have great friends.

We had a moment tonight, when we were shovelling our dinners into our mouths while Sean was cruising / walking around in his cot. Sean was laughing and making funny cheeky faces at us, just like he did before he got sick. Jonathan and I looked at each other and both got teary. We were thrilled to see our happy boy again, who looks so well and healthy, but the sadness of knowing he is so sick made it all very bittersweet.

We have a big day tomorrow, with all 3 of us needing to have blood taken for tests. Blood from Jonathan is for the bone marrow compatibility screening, and blood from me will test for the mutant gene as well as the screening. Dr Gray has lined up a special doctor in the US to talk to us about future treatment for Sean, and this doctor will call hopefully tomorrow or Friday at 9am our time.

We have been told we won't be going home before Tuesday next week. I am really missing home, and can't wait to be home with my little family and have a good cuddle in our bed. Jonathan is really missing us at night, but he is at least getting to sleep through the night again.

Until we get definitive results, I've been busy reading up on Sean's condition on the Internet. It all looks quite grim, but we are hopeful that we will be fine and Sean will have a long and happy and full life.

Hope the packing is going well. Can't believe you are finally moving - seems unreal but hip hip hooray! We had wanted to Skype with you before you moved, but alas, we don't have the facility to do that here. Jonathan and I both have Skype on our phones but we don't have wireless Internet connection that will support a call. Oh well, we'll just have to make up for it once we're home and you're settled in at Taieri Mouth.

We'll keep you posted as we get more results.