The Official Site of Jono & Shari Hall

After the tumultuous ups and downs of last week, people have been asking me to write an update on how our little man is – well, here’s the scoop

He is doing much better – He was extubated on Monday (ie taken off the vent and put on a nasal canula) – which means he is doing all the breathing on his own with some oxygen support. He is still fighting the infection in his lungs and incision – however both fronts are starting to resolve and the infected holes in his tummy are starting to heal quicker than expected – PTL.

He is slowly being weaned off many of the things that were supporting him last week – today he was weaned off the fentanyl pain killer – which means that the only IV lines that he has now are in his head for the TPN food. Today was also a big day for Josiah as he was taken from the radiant warmer that he has been on and placed in an open crib.

So what does he have to do to get discharged from Children’s Mercy – well obviously the infections have to clear up – but beyond that he is currently receiving all nutrition through TPN and Lipids – IV feeding – At some point in this next week they will start to feed him milk again – slowly at first – but before he is released Josiah must be having all of his feeding through bolus feedings of milk (Not a continuous drip feed). He also needs to continue to wean off his oxygen needs so that he can keep his stats (blood oxygenation) up on room air. Lastly he needs to be putting on weight through his feeding.

So the news is good for Josiah and he is on the upward slope of recovery – but there are still a few things to happen before the great day that we can finally bring him home – I am sitting beside Shari now as she is holding our little boy – He is now 73 days old – but Shari’s due date is not until next Thursday. Let’s pray that his homecoming is sooner rather than later

Jono

Just a quick update to say thank you for all your prayers – they are working. Josiah is today in a much more stable condition than he was a few days ago.

So what has happened and what can you continue to agree with us for in prayer.

He was very swollen so they administered albumin – a protein which pulled the interstitial fluid into the cells then lasix a diuretic AND he had some massive diapers – PTL. He put on 1 1/2 Lb in edema and last night he was back down to his pre-surgery weight. This meant as a side effect he has changed from being acidotic to being alkolodic – but the blood gases that they take every 6 hours are getting much better – PTL.

He is still fighting infection on two fronts – he has chest infection which has meant he still has a very gunky chest – but his oxygen needs are decreasing and today they will change his vent from the oscillator – The vent is still doing all of his breathing for him – but we are believing he will do better soon.

He is also fighting the infection in the incision – but this too is healing – he is being weaned on the pain medication – The great news about the surgery is that last night he had his first poopy diaper – surely a cause for celebration – which means the gut is clear all the way through. They usually expect the gut to move through in 7-10 days – 5 days at best, however, Josiah despite all the stuff he is going through came through in 4 days.

So all in all things are looking a lot brighter for our precious little boy – we know he has a destiny in God and we are fighting for that destiny in prayer.

So what can you pray for

1) The two fronts of infection would clear up – He would be healed in the chest and in the tummy.

2) His breathing would get much stronger – we want to see him come off breathing support.

3) He would have angelic protection around his bed – We have seen some unusual warfare over our son and we want him hidden under the Shadow of the Almighty

Blessings and Thanks

Jono, Shari and Josiah

http://video.google.com/googleplayer.swf?docId=777720980531990997&hl=en

Well, it’s been quite an intense week and we are not out of the woods yet. Josiah has had continued issues with breathing and expelling CO2 from his body – For those medics out there – Respiratory Acidosis. Added to this he has an enormous amount of edema on his body that he is not peeing off.

Yesterday we came in in the evening and he looked so swollen his head was massive. He was also in a considerable amount of pain. During the night his blood gases got worse – (ie decreased pH and elevated CO2) Which is probably all related to the fact that he is so swollen.

This morning the x-rays showed he had a collapsed lung and pneumonia on the lungs, the doc told us yesterday he had a lung infection and also his incision was red and pussy, so he has an infection there.

The doctors here have a plan of action with regard to the medical side

However you can agree with us in prayer for the following

1) The infections in Josiah’s body (lungs and tummy) would clear up – He is on antibiotics for this

2) The swelling in body would go down – (He needs to pee this off)

3) His breathing would be strong and his lungs clear up (currently the oscillating vent is doing all the breathing for him)

4) His pain levels would come down – It is not nice to see our little boy in pain

Thank you, Thank you

Jono

It’s been an eventful few days – we came in yesterday morning in readiness for Josiah’s surgery. Dr. Ostlie was the surgeon who did the initial surgery and he did the reconnect as well. Josiah went into surgery at 3.20 and came out at 5.00 – Dr. Ostlie was confident the op went well.

We went home for a few hours and returned later in the evening – everything seemed to be going well – however at about 11.30 the nurse became concerned about abnormal levels in a blood gas – they changed some settings and by 12.30 things were looking brighter – However Josiah had quite a rough night. We got a call at 6.30 this morning from a very worried sounding Doctor who said we should come in right away – not the nicest of wake up calls.

They had been battling with Josiah all night – he is facing quite a few challenges all related with surgery recovery – His pH levels are low (increased acidity) His CO2 levels are high, his blood pressure was low, his SPO2 levels (blood oxygenation) not great. He’s pretty puffy all around and his urine output has been low.

Every one of his limbs is now feeding some sort of drug or IV (and also his head) and he’s on an oscillator which helps him breathe better – he’s had a few blood transfusions today also.

At the moment he is in a critical, but stable condition – well enough about the medical condition – how can you help us in prayer?

1) Can you pray that the swelling from the surgery would subside and that he would pee off excess edema in his body

2) Can you pray that his O2 and CO2 levels would normalize so that he can be weaned from the vent sooner rather than later

3) Can you pray for the comfort of God for our precious little boy – this is a painful surgery and especially for as small a baby as Josiah is.

Ps 127: 3 Sons are a heritage from the LORD,
children a reward from him.

4 Like arrows in the hands of a warrior
are sons born in one’s youth.

5 Blessed is the man
whose quiver is full of them.
They will not be put to shame
when they contend with their enemies in the gate.

I want to claim my reward!!

Continued thanks for all your prayers, support and love

We love you

Jono, Shari and Josiah

When we went in to see Josiah today he had been taken out of his isolette and put on a warming tray in readiness for his surgery tomorrow. He had also had a PICC Line put in which will give him his IV fluids after the surgery – the disturbing thing is they put it in his head! 😦

Well the surgery that happened when Josiah was 1lb 9oz will tomorrow be reversed – He will be 3lb 11oz. They had hoped to do the surgery when he was around 5lb, however the fact that they made a mistake in the initial surgery and mixed up the ostomy and the mucus fistula has made it difficult for him to put on weight.

Please agree with us for a few things

1) Wisdom and insight for the surgeons – They made a mistake the first time – we don’t want any more mistakes.

2) Angelic Protection for Josiah – We have been told that the surgery will be quite painful for Josiah – so we really want him lifted up and knowing the comfort of God throughout.

3) Quick Recovery – He will have to be intubated – We are asking that this will not be long so that he has no lung damage at having the breathing tube again while so small.

We still don’t know when the surgery will be – Shari and I will have to be in hospital all day just in case as he is an “add on surgery” but there is every indication it will be early afternoon Kansas City time

Thanks for your Prayers

Jono, Shari and Josiah

I’m sitting bedside with Josiah at the moment. Shari is doing Kangaroo Care – skin to skin contact – If you want to see some new photos of Josiah go to http://picasaweb.google.com/ihopemail .

The update on Josiah’s stay at Children’s Mercy is this. He has been putting on weight very slowly as per last email – Last night his weight was up to 3lb 6oz – Which is almost double his birth weight, but small for a 36/37 week baby. After much deliberation it is now clear that Josiah will go into surgery on Monday (we haven’t got a time yet) They will put his intestines back together and also fix a hernia caused by the earlier sugery. Then at a later date they will fix an inguinal hernia that has appeared. The surgery is quite painful and therfore he will be intubated again as well as being put back on TPN.

So how long til he comes home? Well it all depends how well he reacts to the surgery. It should take about 10 days from the surgery for him to start processing food through the digestive tract and besides that he needs to be able to breathe on his own, keep a constant temperature and be on a consistent growth course – I am hoping it will be before June – but who knows

Thank you again for all prayers and support – we certainly appreciate it in this season

Jono

There have been some ups and downs with our little man over the past week. I will start with the praise report and then go on to things you can pray about.

Yesterday they did their usual eye check for ROP and it seems that it is a little less progressed than last week (ie it seems to be resolving itself) they will continue to check his eyes every Tuesday, but this is good news.

Yesterday they also did a head ultrasound on him (they do this for all babies at 36 weeks) It appears at first analysis as if the grade 1 bleed that he had is also beginning to resolve – PTL.

Now things you can pray for – Josiah is putting on weight pretty slowly – he will jump up a few ounces and then lose a few. Added to this it seems in his initial intestinal surgery they were confused over which intestine sticking out was the ileostomy and which was the mucus fistula – I know this is overly medical and virtually noone will know what I am talking about – but the outcome is that it has now become impossible to keep his stoma bag on and it puts the little one in a very messy predicament which he doesn’t enjoy. There has been strong debate today between the surgery team and the neonatologists whether he should go into surgery tomorrow to put him back together. He is only 3lb 1oz – which is really too small for this type of surgery, but they may do it anyway.

Anyway, please pray for skill and wisdom on behalf of the doctors that they will make the right medical decision that will result in Josiah putting on supernatural weight and coming home early!!

Thank you for all your love and support

Jono, Shari and Josiah

It’s a waiting game at the moment with the little man in the isolette – we’ve been going in each evening excited to see what weight gain he has made and tonight he was 2lb 8oz – there seemed to be some edema on different parts of his body, but we have seen a consistent growth in weight over the past 5-6 days. They are playing with his feeding at the moment. Last week he started vomiting after getting calorie fortifiers so they reduced the breast milk and put him back on TPN (Total Parenteral Nutrition) and a Lipids Infusion – all very tasty food I’m sure. But today they tried him back on the fortifiers so we will see how it goes we are really believing that he will continue to have good weight gain.

Josiah had his second eye exam today and we got a stark letter on his isolette tonight with the latest prognosis of the ROP “Zone 2, Stage 2, progressing” which wasn’t the best news. There is still a good chance it can resolve itself – if it does not Josiah will have to have laser eye surgery. One of the things that can cause or make ROP worse is oxygen – Josiah’s oxygen intake has gone up in the last few days – we pray that both his breathing and his sight is restored to normal.

Speaking of surgery – we saw a doctor from the surgery team today who asked us for permission to write an article about Josiah’s abdominal issues – apparently the perforation of the intestines caused by a Meckels Diverticulum is a very rare combination and they want to include it in some medical journals to add to the body of medical knowledge.

Again thanks to everyone for prayers and support

Blessings

Jono, Shari and Josiah