Thursday, June 18, 2009

A Grumpy Boy

We arrived at hospital this morning around 9.30, to hear that Sam had had a really rough night - was grumpy and irritable and hard to settle for 6 hours. They weren't sure why but his poor nurse had tried everything to settle him. His heamoglobin count had dropped significantly, which they felt was a combination of his heart/breathing problems so they had given him a blood transfusion.

As he'd been so unsettled, Audrey (his nurse for today) felt it was better to wait until he awoke before doing his routine of wash/care/weigh and a cuddle. Normally we do this by the clock, but today we waited until he awoke so he could rest and recover from his rough night. Whenever he is upset all his vitals go very high (same for us all!), but with his complex condition we are trying to keep him as settled as can be. So about 11.30 he stirred and we washed him, weighed him (he's now about 3.450 kgs) and then he was to have a cuddle with me. Well he wasn't going to play ball and wriggled and grizzled for the duration, which wasn't much fun for either of us! I tried him in various positions, but due to his lines it was just plain hard work. After about 30 mins I gave up and Audrey put him back to bed - and he was silent and sleeping in around 2 mins! So that was a bit frustrating, but we'll try again tomorrow.

We had hoped to meet the cardiac consultant and the gastroenterologist, but they had both been in around 8am, so we just had their notes to decipher (no small feat!). The cardiac team confirmed that Samuel needs a heart procedure to clamp the ductus valve. It's not 'open heart surgery' as the valve is at the top of the heart and the 4 chambers don't need to be disturbed, but is still a 2 hour surgery. We await a time/date for this as it seems a lot of the specialists are in Darwin at a conference. Hopefully tomorrow we will know more about timing for this. Until this procedure happens, and to aid his breathing in the meantime, they had to alter Samuel's fluid intake and add in a diuretic, to try and 'dry him up', which means to lesson the fluid and blood circulating through his lungs, to improve his breathing. This normally is a relatively easy alteration in a healthy baby, but there is a fine balancing act as they monitor his fluid levels to ensure his kidneys don't start to suffer. After only about 6 hours on this diuretic his creatinin levels had started to creep up, so they will be keeping a watchful eye on this and any alterations to his fluids are cleared by the renal team first. He weiged 3.7kg today and should be back to his birthweight of 3.4, so they're prepared to lose 300gms in fluids from the diuretics which should make a big difference to his lungs.

The Urologist popped in and we talked through the procedure that is needed for his urine output. Currently he is cathertarised, but it is not a long term solution as his bags will need changing regularly and the risk of infection is high. The Dr would prefer a procedure called a vesicostomy, where they cut a hole directly into his bladder so his urine just constantly drains out into his nappy. He would prefer to do this procedure a day or 2 either side of his cardiac op, as it would put Sam through less trauma as they could use some of the same intubation lines, rather than having to insert new ones for each op.

The gastroenterologist would like to try him on breast milk in the coming days - 1 ml every 4 hours initially, to see where it ends up. I've been pushing ever since his birth to try him on some as it just makes sense to me that we need to try to see if his gut has any activity or not and how can you tell if you don't try? I have suggested it a couple of times, but it seems that now the time is nearly here. His stoma is still discharging a lot of stomach juices/meconium and they are pleased that it seems the bile (that was coming up through a tube in his mouth) is going down through his stomach. So potentially he does have some minor peristaltic activity they think.... initially they thought he had none. I'm trying to not hang my hopes on this, but it's so hard to not!

GENETICS 101

When Sam was about 3 days old we met with a Dr of genetics. After confirming that Francis & I weren't cousins (!), it was very interesting talking through his condition. It seems that both Francis and I have the same faulty recessive gene - the MMIHS condition is so rare the gene hasn't been identified, but this is what the common thinking is. It seems we have a 1 in 4 chance of our offspring having this condition. Wow - we are so very thankful for our 2 wonderful daughters and for their health and the joy they bring to our lives... and for Samuel and the joy he brings us even now, whilst he holds our hand and we sit with him.

NEXT STEPS

We asked today for clarification on the plan for his treatment, due to it being so complex. They said the heart procedure is now top of the list for treatment, which will in turn hopefully sort out all his breathing issues and mean he can come off diuretics which will help his kidneys remain stable. Then he can hopefully come off CPAP (oxygen support), and the next priority is sorting out his urine output (bladder op), then we will try him on breastmilk to see how he responds.

I have been finding evenings quite tough - the hospital is a constant noise of bells and beepers and human activity, the girls are a constant babble after school til bedtime... then they go to bed and the silence is lovely ... then the tiredness and emotion of the day catches up with me and the tears start - It feels so bad not being able to be with Samuel 24-7 and not being able to help him even when there, and it feels like our family is incomplete now when we are at home and he is not. But it is good to have the evenings to 're-group' and gain strength in the quiet.

Time to leave my ramblings for my nice warm electic blanket in bed. Sleep well and thanks everyone for your thoughts and prayers.

X Shirl

13 comments:

The Heslop Family said...

Shirley, you write such an awesome journal! Thank you for sharing all this with us. Once again I don't know what to say, so I'm off to bed to ask God for his help for Samuel.

Love to you all,
The Heslops xxooxxoo

Anonymous said...

Great to have the info update - and great to see that you haven't lost your sense of humour - cousins! (hehe) You are all in our thoughts and prayers constantly.

Sandra said...

I bet that Specialist was from overseas somewhere where they think NZer's are all cousins lol.

Shirley, I sobbed when I read your comment about feeling like your family is incomplete because Samuel is not at home with you. I truely do hear your pain. I pray that you will all know the joy of being a family together at home in times ahead.

Big hugs
Sandra (Tga)

Raewyn said...

It sure is a balancing act, not only for little Samuel, but for all of you.
Thank you for the Blog. It is so humbling as we go about our day while thinking about your family.
May today be a better day.
Love Raewyn and Andy

Mark and Jo Pelan said...

Hi guys! We wanted to let you know that Samuel, and all of you, are in our thoughts and prayers each day. The first thing we do each morning is log onto this website to check how he's doing. Thanks so much for sharing everything with us - you're doing an amazing job considering everything that's going on right now! It's great to have specific things to be praying for.

Lots of love, the Pelans in Pennsylvania
xoxo

(p.s. We have a little something to send you - can you let us know your address?)

Libbles said...

Oh honey's - this blog is such a great way of keeping up with how Sam (and you!!) are doing!! The problem is my tears well up every time I read it, just feeling for you and what you ware walking through as parents, and for the girls and your little family. Samuel is a fighter - we're fighting with him and want you to know that even though we can't physically be with you.

Gracie has broken her ankle so things are interesting around here these last couple of days - but I've come down with a cold and don't want to risk any spread of any germs to you or Sam - as soon as it's away we'll be up to visit if we still can!

Love you guys and you're in my thoughts every day

Libs and Wayne xxxx

Anonymous said...

Just wanted to ditto Libbys comments. Feeling for you especially Shirley... you write so beautifully. Your strength & faith in such a hard time is beautiful to watch. We are praying & thinking of you all lots...

Sheridan :)

Anita said...

Wow!! Starting on EBM is wonderful! I hope that 1ml finds it's way in there. That is excellent.

It is desperately hard at times. from what we read and understand we feel your pain so much yet at this point we are strangers. We see tons of hope for Sam but at this stage it is a very bumpy ride. There is light at the end of the tunnel though, rest assured.

Always thinking and praying for you, daily, hourly.

Mike & Hilary said...

I too log on each morning and eagerly read updates on Samuel and family but will try to not comment everyday!! (actually Anonymous post no 2 on this was me hitting the wrong choice@! Praying and feeling so far away. Hilary and co.

Lea said...

Thanks for making it easier to comment!

Your blogs are beautiful - you both write so descriptively. Like all of the others on this page, I, too, check Sam's blog each day. He and you are in my thoughts a lot, and I hope with you that this tiny little blob of EBM will do its thing properly in concert with that little gut and bring Sam a nice warm feeling in his tummy. He may be grumpy - but then I think I would be, too!

blessings

lea (Melbourne)

Anonymous said...

big loves to the davy family from the walkers x x x x x

Jolene said...

Wow! So much has happened in a week. We have just finished reading the blog and getting up to date on what little Samuel is up to this week. We praise God for poo's and frozen breast-milk! Bring on the good stuff! Our hearts ache and rejoice with you in all that you are experiencing. You are always in our prayers. Love the Hillier's

David and Jennifer said...

loving the posts and learning of new ways to pray for your family. covering you Shirl is paramount to me as a momma - i am feeling your frustration and pain of not nursing and cuddling Samuel to bits and then wanting sweet time with girls... I think of those things for you. keep writing as its so therapeutic.... its great to hear your heart and Francis as well... we think of you constantly here and miss your families presence. xoxoxox jen