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Monday 30th... Home and Loving it...

Initially Ruth seemed disappointed at the news that she would leaving the hospital. In a ward full of tubed (i.e., silent) neonates and infants she had gotten accustomed to grabbing the attention of staff and passing personnel and was thriving on being the centre of attention in the the resulting interaction. Soon, however, she figured out that going home also came with a host of possibilities unattainable within the confines of a hospital cot.

We called into to see her granny on the way home where she proudly showed off her new belly. Not surprisingly, she was exhausted by the time she got home on Thursday evening and slept for about 13 hours that night. Since then she has continued to be tired more frequently during the day - she is also spending much more time on her ventilator. Nonetheless she is eating well and in great form. All of this is to be expected and it may well be a few weeks before she is back to full fitness.

Over the last two weeks she has become very protective and nervous about her belly. While she does not mind showing it off at a distance, she gets quite upset if anyone attempts to go near it. In fairness, she can't be blamed. Her scar may still be quite tender and overall, she has grown tired of of being prodded and poked. Thankfully, this nervousness calmed down a bit and she had her first bath, albeit reluctantly, since her operation at home over the weekend.

Will post another update next Sunday, Sept. 5th here on the Notice Board.

Thurs August 26th... Stitches Out, Trachy Downsized And Home Today...
Well Ruth had half her stitches taken out on Tuesday afternoon. Despite some sedation, she got quite upset with the procedure so in the end the decided to put in an IV line and put her asleap.It was intended to use the line again again to put her asleap for to remove the remaining stiches. Unfortunately the line packed in that evening and had to be removed. Instead of siting another line, it was decided that it would be much kinder to put her asleap with a bit of anaesthic gas, via her trachy. This worked a treat. Her trachy tube was also change and downsized while she was asleap. Last Friday evening (20th) it was downsized from an 6.0mm PDL (Ped Long) to a 5.5mm PED. Yesterday this went to a 5.0mm PED.

The plan at the moment is to discharge her this evening - which will be another amazing performance.... home in 12 days!

Will post another update on Sunday 29th here on the Notice Board.

Friday August 20th... Great Day Yesterday...
We said yesterday that Ruth had perhaps reached a turning point in her recovery last Wednesday evening we were right.

She had a really super day yesterday. Although still very tired, she was in great form all day. She had some yogurts and ice cream in the earlier part of the day and a small bowl of Corn Flakes and some crisps in the evening (which was a real treat). She spent a good deal of the day sitting out of her bed watching television, chatting and benefiting from the occasional long restful nap

She was also migrated to her portable BiPAP ventilator yesterday afternoon. Since her surgery she has had an extra-long 6.0mm trachy tube. This is a much larger tube than she had pre-op (3.5mm) , indeed it is the largest tube she has ever had. This was used to minimise airway leakage to facilitate more accurate/efficient ventilation. Unfortunately it also means that she has been unable to vocalise. Naturally she has found this frustrating during the week. For reason, however, even though the settings are largely the same, she have been able to vocalise again on her portable machine . All of this has combined to really raise her morale.

She had a another good nights sleep last night and was in great form this morning. It is possible the today she will have her urine catheter and central line removed. They are rapidly becoming surplus to requirements. It is also possible/likely that she will have her trachy down-sized - again another possible step. There is take that he surgical wound will be examined tomorrow with a view to possibly removing some of the stitches. We shall wait and see.

More updates tomorrow or Sunday.

Thursday August 19th... More Rest and Finally ...Some Food...
Yesterday (18th) was a good day, perhaps even a turning point. While she was still quite tender and distended which combined with her rash and being hungry made her a little weepy from time to time. That said, however, her overall form was much better, and after a good nights sleep she was looking much better too.

On the positive front, her urine output pick up from early morning and remained high through the day and night. Ruth had a much more restful day. She continued to take a few sips of water and it was decided to let her try eating a yogurt late yesterday even. Don't think I have ever seen a child getting so excited about a tiny tub of yogurt. She practically jumped out of the bed with excitement at the prospect of finally being allow something to eat. In the end she only managed to eat half of the tiny tug, but that was fine and it caused her no problems. Over night her arterial line packed in and was withdrawn. However, this is not an issue.

As of this morning morning (Thrus 18th) she looked very well after a great nights sleep. Her belly is slightly less distended so she is more comfortable. Her urine output continues to be perfect and she enjoyed more yogurt for breakfast and is planning to have some ice cream for lunch. There have been no changes to her ventilation / trachy tube, however, it is quite possible they will migrate her back to her portable BiPAP machine later this evening/tomorrow and see how she gets on.

In summary, everyone continues to be very pleased with her progress, and now that her abdominal distention appears to be settling down a little, her urine output is no longer a concern and she is finally able to take something to eat we are hopeful that things will settle down nicely over the next few days.

More updates tomorrow.

Wednesday August 18th... A Much Needed Restful 24hrs...
Yesterday (17th) Ruth had a much more restful day. We had been a little concerned with amount of rest she enjoyed in the preceding 24hrs (16th). During that period she having woken 0630am, only slept for about 90min in two short naps during the day, did not go to sleep that night until 2300hrs that night and was awake for about 90mins during the night before waking up again at 0630am yesterday morning. To be honest we suspect a lot of this wakefulness in the previous 24hrs was fueled by nervous energy. Yesterday, however, she seemed less apprehensive and very tired. Consequently she had a much more restful day, managing to get about 4/5 hours good quality sleep during the day. Although she did not go to sleep until 2300hrs last night, she slept soundly for the night.

Her abdomen continued to be quite distended. Although generally well covered for pain, it was apparent that her abdomen had become increasingly tender, especially if she coughed/passed wind etc.. She continued to take a few sips of water but these were taking quite some time to be absorbed and she continued to produce reasonable amounts of NG aspirates. In the end the decision to commence oral/NG feeding was abandoned for the day. As usual her upper chest have a nasty, angry looking rash caused by the adhesives/conductive materials from her cardiac dots. She is clearly stable from a pulmonary perspective, so thankfully it was agreed that her SATs probe on her food was adequate and we have dispensed with her dots. This should allow her skin start to heal. All of this combined to make her a little miserable from time-to-time during the day.Urine output remained low enough the earlier part of the day save for a short-live increase following some Lasex, however, output picked up a little in late evening. Ventilation details have remained unchanged.

This morning (18th) she looked well rested after a good nights sleep. Her urine output is also up significantly, which is good news as she is quite positive from a fluid balance perspective. She was in much better form although her abdomen continues to be distended and fragile. Again, the question on starting feeds will be revisited during the day. There have been no changes to her ventilation/trachy tube.

More updates tomorrow.

Tuesday August 17th... Progressing Very Well Post Op...
Ruth continues to do very well post-op. She was wide awake all day yesterday, perhaps even too awake. Her abdomen had become a little distended and her surgeon decided to hold off attempts to commence oral feeding until today. She did take a few sips of water and it would appear that things are kind of tight and so even small sips were taking some time to be absorbed if all all. Morphine weaning was completed this morning and she is being give paracetamol to provide cover for pain. Itchiness is common symptom of Morphine withdrawal and Ruth has been scratching quite a lot over the last 24 hrs. This have been added to by rashes she has developed to the adhesives used on her cardiac monitoring probes. She has been given a drug to try counter act this itch. Urine output remains low and it is likely she will be give a more aggressive diaphoretic to help her shed her excess fluids. It is also likely that she will be put on a moderate course of oral sedatives to allow her get more rest/sleep during day/night.

This morning she was more settle, however, we suspect this as much to do with fatigue as anything else. Her belly continued to be quite distended and as of lunch time the decision to feed was being put on hold. From a ventilation perspective her mandatory rate (initially 23) has been weaned and she is now back to cPAP. They might well downsize her rather large trachy (extra long 6.0mm) tube tomorrow. Downsizing her tube may help with distention as it is possible the she is aspirating air into her gut. In good old form though and continuing to do very well all things considered.

Again I will try to post another update tomorrow.

Monday August 16th... Closure Surgery Completed...
Ruth's closure proceeded as planned late on Saturday (14th) afternoon. The surgery went very well indeed. Her Exomphalus has been completely closed. Except for her surgical scar, Ruth now has a pretty much normal, flat abdomen! They even fashioned a bellybutton at the bottom of her scar. Her surgery required no handling of her bowel, and her closed abdomen is not too tight at all. This has had very positive implications. Most notably, she required significantly less sedation and pain-managemnt drugs post-op when compared to last year. Her paralysing drugs were stopped early this am and he morphine was also weaned - allowing her to wake up and move about a little. In addition it is also hoped to started feeding her again (via NG Tube) at some stage today (~48hrs post-op).

Ventilation wise, she is also fine.

So in summary, the surgery was a great success and this morning less than 48hrs. later she is awake, and although fragile and apprehensive, she is in good spirits and in an entirely appropriate state from a sedation and pain management perspective. He urine output is a little low, but this is not unexpected or overly concerning at the moment.. Other than that there are no real issues and she is doing exceptionally well.

I'll post another update tomorrow.

August 11th... Surgery Scheduled for next weekend!!
Today we got a call from Temple Street seeking to schedule Ruth's next surgical procedure for next weekend (14th). Ruth still has a sizable abdominal hernia and so this latest surgical procedure will be similar to her procedure last year hoping to reduce the hernia as much as possible. Exact details are sketchybut we will be dropping to Temple St. tomorrow Friday 13th for pre-op blood tests with actually admission for surgery targeted for Saturday.

August 9th... Back From Hols !!
Our holidays were a great success. In fact things could hardly have gone any smoother for the whole two week trip. We all have a great time...the weather was fantastic... the food was beter .... and the entire trip was a complete success.

July 24th... Heading To France Tomorrow!!
Well after quite a good deal of preparaiton its D-Day tomorrow as we fly to the south of France on a early morning flight. Hopefully we will not have any probels will all of the carry on luggage (equipment) we need to bring and with a bit of luck by late afternoon we should be sitting by a pool sipping a nice cool drink enjoying the clear skies and sunshine.

May 13th ... Pony Riding!!
Probably one of the greatest benefits Ruth's child care arrangements is that each has different styles and engage in different range of activities bringing great diversity into Ruth's routing and life! As an example, one brings Ruth to riding school near our locality. It is really a wonderful environement and opportunity for her. See gets to spend some time with the animals, meeting other children her own age and has even gotten the chance to go for walk-abouts on one of their ponies. Yesterday, Anne took a camera along with her... Click here to see more.

March 30th ... Weight Check
Ruth was weighed again today. Starting from the week after she was sick her appetite really came on - she was really starting to eat very very well. So, in some respects it was not surprise that at her weight check today her weight was up 0.6kg on the last checkup (15/03). This is great news and we feel very please and encouraged.

March 23rd ... Surgery Deferred
Finally, we got to speak with folks at Temple Streets and it seems likely that it will not be possible schedule Ruth's proposed surgery in the near future, and certainly not before our planned trip to France at the end of July this summer. This is disappointiing news as we were really hoping that we would address both surgery and trachy decanulation in the Spring of 2004. This scheduling difficulty, together with the timing of our trip to France means Ruth's medical plans will have to wait until Autumn. From a logistical point of view, however, we are not sure how practical a two week holiday in the south of France with trachy, ventilation, humidificaiton etc will be. However, logistical challenges are not something we shy away from!

March 16th ... Weight Down
Ruth was weighed today and it was no surpise after being sick last week that her weight was down. That said we we a little surprised to see it down just over 05kg. This was a little disappointing - but we relain committted to her current feeding regime and work hard to regain lost ground.

March 12th ... "On the Mend"
Ruth finally stopped vomiting on Wed and has managed to keeep down most of what little she has taken. Thankfully, by Thursday she was back to herself.

March 9th ... "Still Sick"
Unfortunately Ruth is still not tolorating anything by mouth which is a little concerning as she has have almost noting to eat or drink for two days. We are doing our best to get some maintenance fluids into her in very small quantities, but not a lot is staying own at the moment. We will just have to sit tight and hope this phase passes soon.

March 8th ... "Stomach Bug :( "
Well Ruth's NG is now gone one month and she has continues to do well from a feeding and drinking point of view. Unfortunately she has picked up a gastric bug of some kind and has not been tolorating anything by mouth since early yeserday morning. Hopefully it is just one of the many 24hr bugs that have been doing the rounds.

Feb 24th ... "NG Still Gone...Weight Up!"
Ruth NG tube was out two weeks last Sunday 22nd Feb. The good news is that she is still managing fine. We are not having to struggle quite so hard in terms of coaxing her in to eat and drink her daily targets. However, the real judgement came today with her biweekly weight check - and her weight came-in UP 300g on her last weight. This is great news

Feb 12th ... "NG Still Gone...".
Ruth NG tube has been out since Sunday 8th. Clearly both her overall calorie and fluid intake is down a little but so far so good. So far her oral fluid intake is up significantly, from ~150-200ml to >350mls per day. This is a great improvement. Her oral food intake is not up dall that much but we are supplementing her lost calories with Duocal in her food. It is likely that she may experience a bit of a dip in terms of weight and fluid management, but we are growing confident that with persistance, encouragement and the motivation of saying being able to say "bye bye NG Tube!" after every glass of milk that and the current exercise may well work! More updates anon.

Feb 9th ... "Stretch or Starve - No more NG!"...
Ruth hates her NG tube. Her NG provides her with about 750ml fluids and about a quite significant proportion of her calorie intake while she sleeps at night. This night-time-based NG feeding regime compensates for her limited ability to eat and drink herself. Ruth knows this and accepts that it her NG is an necessity. Nonetheless, she hates everything got to do with it. She hates the way it makes her nose itchy. She hates the marks and irratations the adhesive tape used to secure the tube makes on her checks. She hates when the tape get wet or dirty has has to be pulled off and replaced which is every day or so. And she especially hates the fact that the NG tube has to removed and replaved every week or so. After three one could not blame her.

At the weekend we decided having removed her tube for a routing change to give her a choice. We explained to her that is she was willing to make a big, big effort to eat a good deal more and expecially to drink a great deal more that we would not need to insert a new tube. So the choice was hers, make a big effort to eat and drink as much as possible and say good-bye to the NG tube for good or go upstairs and put in a new tube now. Not surprisingly she choose the no-tube opion and since then has been make gallent and brave attempts to keep her end of the bargain. She was weighted this morning and being realistic we can expect her weight to go down for maybe a few weeks she she learns to eat and drink in sufficient quantities to allow her kiss good-bye to her NG for good.

Jan 26th ... Surgical Review...
Ruth had a further surgical reeve from her surgeon today at Temple Street. He was very pleased with he and has indicated that he would like to perform a further closure procedure in the near future. At present Ruth has an abdominal hernia about the size of a small bread roll. While we are not entirely sure, we understand that there is little fascia and no muscle closure over this area. He believes he can fully close the greater part of this area, leaving only a small area to address at some point in the future.

December 25th... Christmas At Home....
Although Ruth has met Santa Clause and a number of occasions over Christmas in the last few year, this year she had her first proper visit to Santa at his workshop at one of our local shopping canter. She was very excited about the prospect of getting to meet Santa Clause and in the end was quite nervous and apprehensive about the whole affair.

December 21st... First Proper Visit to Santa Clause....
Although Ruth has met Santa Clause and a number of occasions over Christmas in the last few year, this year she had her first proper visit to Santa at his workshop at one of our local shopping canter. She was very excited about the prospect of getting to meet Santa Clause and in the end was quite nervous and apprehensive about the whole affair.

December 17th... Sick to Hospital....
Once again Ruth has another rather bad chest infection and has been under the weather for the last few days. With her new tube it has been difficult to manage her ventilation. There is obviously a large leak around her 3.5mm tube, but we are now unable to go back to the 5.0mm tube as her tracheostomy stoma has closed over somewhat since her tube was down-sized on November 30th last. After a very difficult night last night we decided to seek the judgment of the professionals and so brought her into Temple Street to have her checked out. Naturally enough she was fine.

December 1st ... Trachy Down-Size....
Well Ruth's trachy downsize exercise went very well last weekend. We call into Temple Street on Saturday morning and was let home by Saturday evening. Her new 3.5mm tube is a much (much) smaller than her older 5.0mm tube. In addition, and one thing we did not realise they were intending to do was was that it is intended to entirely block her new 3.5mm tube during the day (or while she is not on her BiPAP). This will to force her to breathe with her nose and mouth.It is obvious that it is taking her a good deal of extra effort to do this. and she sleep quite a good deal of the first few days!

Sometimes we have to remind her to breathe (and cough) through her nose and mouth - if she gets a bit lazy she tries to force the air out around the tube in her neck and gets a bit panicked - so we have to show her what to do. She is getting the hang of it though and no doubt she will soon manage fine. The really wonderful outcome from the weekend has been hearing the whole range of previously hidden nuances in Ruth's voice. The little chuckles when she laughs or giggles even the rather deflated whimpers and cries when she is upset. She has a lot of vocal expressions that we just never heard before and so it is fantastic to listen to her. Her voice is slightly different - a little fuller and a little louder. She is getting a great kick out of that and gets a had a great giggle looking at herself in a mirror roaring out a song at the top of her newly amplified voice.

The plan is to leave the smaller tube in until Spring time and then once the season of nasty winter bugs is over take the tube out. For now we are looking forward to an exciting Christmas

The only downside of the weekend is that she got a nasty stomach bug that she was quite sick with but that seems to be clearing now so she is slowly getting back to herself again.

November 24th ... Trachy Down-Size....
Ruth is having her trachy downsized next Sat (29th) in Temple Street. At present the plan is to simply exchange her existing 5.0mm tube for a smaller tube and keep her in over night for observation. All in all it is the first big step on the final stage of getting her off the machines. Her consultant told us that if it wasn't winter time they would consider taking it out altogether, however, with a high risk of getting chest infections over the winter, he feels the tracheostomy airway remains a valuable therapy route should she need it... and we can look again at decanulation in the Spring of 2004.

We are delighted that this procedure is going ahead even though we were hoping that the trachy would be gone for Christmas. We can see the risk of removing the tube during the winter time is not worth taking for the sake of an extra 3 months of machines.

October 3rd... Sick Again!...
Once again Ruth has another rather bad chest infection. We have had a number of very difficult nights with her.We brought her to the GP once again she is on antibiotics once again.

Sept 18th ... Sick Again!...
Not really sure that Ruth recovered fully from her chest infection the week before last, but she is sick once again.

Sept 12th ... Limerick Bound!...
Today we are heading to the south west to visit the city of Limerick. We are going to attend the conferring ceremony for Ruth uncle who is being conferred with a Ph.D from the Department of Mechanical and Aeronautical engineering. We plan on spending the weekend in the city for a small break.

Sept 12th ... Better!...
After a number of days coughing and spluttering Ruth is back in form once again.

Sept 5th ... Sick !...
Well the milder autumnal weather has arrived and brought with it the early bugs of winter and Ruth is currently quite clapped out with a chest infection.

August 12th ... A Day Out...
Went from Trip to Co. Wicklow for the weekend.

June 21th ... Settling Down Nicely !...
Ruth is quite obviously quite tired and weak, but in otherwise great form at home. This morning she sat up to some tea a toast for breakfast.

June 19th ... Going Home Tomorrow!...
Most of the remainder of Ruth's stitches came out on Tuesday. However, as her belly had stretched a little since surgery, some of the stitches were too difficult to get at without distressing her. These were removed on Wednesday morning after she was given a bolus of oral sedative.

Since the last update, her ventilation pressures were weaned to her pre-op levels (iPAP=16, ePAP=8) and she coped with the weaning in pressures without any issues. This is excellent. As of today all of her meds will be stopped. She is eating like a hungry hound and is in great form! With all of this progress there is no further need for keep Ruth hospitalised and it is planned to discharge her directly from ICU to home tomorrow, Friday, June 20th.

That Ruth has managed to address this major milestone, do so well, and recover so quickly is really quite remarkable. Discharge in just under three weeks weeks is really awesome.

However, these are maneagable issues and we have no doubt that Ruth will address them, one by one, in her own good time.

Looking to the future?

Firstly, Ruth can look forward to a future without the prospect of having to face major surgery. It would be difficult to overstate the magnitude of the relief this brings.

Secondly, and probably and most significantly, her anaesthetic team now feels that thanks for her more normalised anatomy, her respiratory function is significantly more efficient. With this in mind, they have expressed a confidence that Ruth's prospects for being able to completely wean off her BiPAP ventilation are very good. Prior to surgery, the impact of closure surgery on her post-op ventilation requirements (extent and duration) was practically impossibly to quantify. This fresh assessment therefore, has come as significant bonus of very, very encouraging news

Needless to say, Ruth's teams are very pleased - delighted in fact. Our sentiments go far beyond such sentiments into the realm of the inexpressible. We go home once again owing a huge, unpayable debt of gratitude to everybody at Temple Street Hospital - her combined medical teams in particular surgical and anaesthetics, all the nursing staff at the Intensive Care Unit and indeed a host of other staff and personnel.

We'll post an update - from home - over the weekend or early next week.

 

June 17th ... BiPAP Down...
There was liitle to report from yesterday. There was no sign of Ruth surgeon - so no additional stitches were removed. Her sedation was weaned a little futher. While her nighttime sleep is a little more unsettled, it remains appropriately restful. iPAP pressure on her BiPAP is down another two notches to 20cm H2O (20i/9e). Ruth contines to be in great form, it fully of chat, and it has got to be said, a little mischief too!.

June 13th ... Sitting up playing...
Ruth had another session with her physiotherapist yesterday and ended up spending a good deal of time in the afternoon sitting up playing with toys at a miniature desk and chair. She is still quite weak and very fragile, however, she is in great old form. Everything about her is getting better and better every day.

Her central line was removed yesterday as it has been in for nearly a week. Ruth currently has no lines and at the moment it looks like she doesn't need them. Over the course of the day she ate two small tubs of yoghurt and sipped on her beaker of water. It was also decided to give her a bit of a break and so no attempt was made to wean her ventilation. They might look at this again over the weekend or at the beginning of next week

The surgeon should be in today with a plan to remove every second stitch on her wound. The will probably wean her Morphine replacement drug again today. Sleeping really well thank God as she really needs it.

Everything else is just fine.

June 12th ... Another Great Day Yesterday...
After a really good day on Tuesday it was great to see Ruth enjoy another great day, yesterday Wednesday June 11th.

She was put back onto her BiPAP machine on the same pressures and O2 she was on with her servo ventilator. She managed fine. During the early afternoon they wean her Oxygen entirely (from 30% back to room air). She was tending to de-sat more or less immediately when disconnected from her machine, however, that's no big deal for the moment and she managed fine. Verifying that she could manage on room air was more that a sufficiently acceptable milestone/achievement for the day - so we were pleased with that.

She was changed to a two-hourly feeding regime; getting 70ml Progestimil over the first hour and then having a break for the second hour. Again, she managed fine. She also was allowed to eat a small amount of yoghurt and breakfast cereal. Although she remains fluid restricted, she was also allowed to sip water.

We also sat her up into a sitting position. At first she seemed surprisingly immobile and quite obviously very, very tender and fragile. Then you kind of realise that despite the fact that she really has done exceptional well, it is only ten days since she had major abdominal surgery! Having said this a "Bear In The Big Blue House" video and the opportunity to have a good "nosey gawk" at the other babies in the unit provided her with sufficient incentive and distraction to sit up a couple of times during the day and evening.

We were given the all clear to bring her into a bath in the ward next to the ICU yesterday evening. However, given that her rather flaky stability on BiPAP, her fragility versus the amount of handling it would have required. We decided instead to sit her into a baby bath on a trolley beside her bed. It was a good decision as it was all she was really up to.

Bowel and urine output continue to be fine, and indeed now that IV maintenance fluids and drugs have ceased; it looks like she is starting to maintain her own fluid balance a little better by herself. This was expected, but it good to see it happen none the less.

The drug used a Morphine substitue was weaned yesterday without issue. It is intended to wind this down entirely over the next week. She managed to say a few words yesterday which cheered her up quite a bit. She is also managing to sleep much better which is also doing her no harm at all.

Overall, Ruth we feel Ruth really truned a corner on her road to recovery on Monday night and has not looked back since. She is continuing to do exceptionally well.

June 11th ... Surgical Review...
After a difficult weekend and a hard enough day on Monday, Ruth had a very good day on Tuesday.

Her surgical consultant called in at lunchtime to see her and was very pleased. He has given the all clear to allow her start plat feeding with small amounts of yoghourts or whatever she wants.. He also gave the all clear to commence input from her physiotherapist. Ruth's anatomy has changed quite radically as a result of her surgery and she will have to relearn many basic skills. He plans to call in again on Friday to remove every second stitch on her wound.

On Tuesday afternoon, the anaesthetic team down-sized her tracheostomy tube back to the old Size 5 Shiley tube she had pre-op. This means she can once again make sounds - although it would seem that a combination of her new anatomy, perhaps in combination with combined with her increased pressures mean that she is unable to verbalise very well at the moment. It is also planned to put her on her portable BiPAP machine today (Wednesday) and she how she gets one. To be honest we suspect she will manage this transition very well. I don't think there is any plans to wean either pressures or O2 today.

The rate of increase in her hourly feeding has increased over the last 48hrs and Ruth is now on 34ml Progestimil/hr and doing fine. All IV antibiotics and maintenance fluids have stopped and we understand they will probably remove her current central line (infection risk) in favour of a new peripheral line later today.

She is still a little weepy, tender and uncomfortable from time-to-time, however, she is generally speaking in great spirits. IT is worth reminding ourselves that it is just a little over a week since her surgery. She got very little sleep between Sunday and Tuesday, so thankfully she had a very good sleep last night and was in great form this morning.

 

June 6th ... Latest Update...
Ruth's overall status remains good. The last 24hrs has seem a significant improvement in the both Morphine and sedation balance. Over the nigth and again this morning she has woken up and muched about in a much more appropriate manner and head back off to sleep. Her urine output remains lowish but satisfactory - bottom line, she is still producing and her U&E is still fine. This is good because one side addect of the Morphine substitute she has been given is to lower blood pressure. This cound affect perfusion to the kidneys and thereby affect renal functn. This has not happened.

There is talk this morning of starting her on TPN later today or perhaps over the w/e. However, she has no peripheral IV lines left, so they will have to site a line in advance. They are alo persisting with the Albumen/Lasex regime to help her harvest/shed excess fluids.

She has been running a temperature and has been peripherally cold from time to time, which makes us suspect that she may be brewing an infeaction, however, for the moment, her bloods remain fine and she shoudl be well covered with teh three IV antibioticss she is already on. Her Haemoglobin is still quite low, but I am not sure there is any intention to do something about it - I am sure they will probably sit tight for the the moment.

Her ventilation has been weaned slightly - without issue.

Overall status as of mid-day today remains very good.

We'll try keep the updates coming.

 

June 5th ... Hospital Update...
Again the last 24hrs have been a satisfactory 24hrs and Ruth's overall status remains good.

Much of the focus over the last 24hrs has been to try achive a more appropriate balance in both Ruth's Morphine and sedation medication. It has not been easy. At this stage, three days post-op, it will soon become desirable to see Ruth's gut working again. However, not withstanding in addition to the affects of handling the gut in surgery, both the IV antibiotics and especially her Morphine all have a detramental affect on the function and operation of the gut. Ruth as been on very high doses of Morphine, hence the initial desire to wean her dose back.

On the sedation side, it would also be more desirable to wean her doses to a stage where she enjoys a more wakeful, but nonetheless, controlled level of sedation. This would allow her to move about just a little and help manage her fluid retention issues. It also mean that she would be in a position to participate more in the work of breathing, another valuable objective.

Ruth woke again last night in another repeat of her wakeful period earlier in the day. In the end she spent over two hours thrashing about in quite an agitated state. Three bolus of sedation meds failed to completely settle her and in the end it was decided to paralyise he to let the meds take affect. Clearly such trashing about is not in her interest..

More significantly, however, was the determination that despite the fact that her Morphine dose had been reduced, her behaviour was more consistant with Morphine overload, rather than morphne withdrawal symptoms.

So, starting from this morning measures were taken to wean her Morphine as aggressively as possible to a more appropriate or normal 3-day post-op level. However, Morphine cannot simply be withdrawn without unwanted withdrawal symptoms. The plan was to start her on a Morhpine substitute, let its level build up over 12/24 hrs and then cut the Morphine doses at a more significant pace. This course of action is in hand, and we should make progress on this area in the next 24/36 hrs.

ON the sedation side, Ruth's tolerance to IV sedation meds has been been very high and so her levels of meds has been huge. So again, weaning is not straightforward. Her IV sedative has been weaned a little and backup cover is being provide using a less aggressive potent oral sedative. Ruth has been on drug before and it has suited her very well. Over the day since these changes were made she appears to have found a more appropriate balance. She has woken twice, been moderately alert, and gone back pff to sleep a short while later. Again we shall see how this goes over the next 12/24 hrs

On the surgical front, her surgical dressing was changedfor inspection purposes, Her surgical wound and scare is obviouisly is very large but nonetheless impressively tidy given the original size of her exomphalus.

She was given another dose of Lasex (diauretic) today to help her shed excess fluids, however, her urine output remained quit low throughout the day. however, the important thing is both her UE, and cultures remain fine, so nobody is overly worried. Natually with all the excess fluids on boards her lungs lungs were confirmed to be a little wetter today on repeat x-ray, however, it is presenting an issue at present. Her poor chest is very rashy and raw from the adhesives used on her cardiac/resp monitoring dots - but she has always had very sensitive skin.

They have decided to sit tight on feeding - she she will continue on just maintenance fluids IV, however, her only peripheral line packed in today and had to be withdrawn. Her twin lumen femoral central is still sound.

Overall status still good

Again I’ll try post another update tomorrow, if I can get a chance.

June 4th ... Surgery Update...
Overall it has been a very satisfactory 24hrs. Ruth is now past the 48hr mark post-op and her overall status is very good.

Yesterday was quite a nervous day for us as there was some concern about her very low urine output. Even though this persisted throughout the day, her doctors were satisfied that this was due to her complete sedentary state induced by her paralysis medication. Nonetheless from a fluid perspective she was in a significant positive position, i.e., cumulative output was significantly lower than cumulative input. She was given albumen and a diahoretics to harvest and shed excess fluids. By late this morning, this was working well, however she remains in a significant positive position and her periphery is quite puffed and swollen.

Related to the above was the discission to discontinue paralysis medication in favour for sedation meds. I think assumption was that a combination of sedation meds plus her existing levels of Morphine would keep her sleeping and very restful, but would not prohibit movement entirely. Such gentle movement can assist the moderation of fluid retention.

However, after about an hour off the paralysis meds she woke up with a bit of a bang! Although a bit confused, she was quite alert, looked for water. Eventually she become quite agitated and proceeded to make some rather lively attempts to sit up, pull out at her new treacheostomy tube, scratch at IV lines and the surgical dressing over her abdomen. It was great to see that she had not lost any of her gutsy, fighting personality over the last few days. However, her abdomen remains very tense and given the potential fragility of her both her surgical wound and her abdominal contents, it is not in her interest to be moving about so much. Her tolerance for sedation medication appears to be quite high though, as it took quite a while to calm her down to a restful (sleeping) state - not to mention several additional doses of sedation meds!

Ventilation status still fine - very good in fact. Sepsis is not currently and issue - which is remarkable. Her arterial line packed into day but its loss is not overly worrisome at the moment.

Overall status 48hrs post -op - Very Good.

I’ll try post another update tomorrow.

June 3rd ... Surgery Update...
Well its been a few hectic days. We brought Ruth into Temple Street on Sunday evening. Thankfully she did not mind going into the hospital and spent the evening having some great fun with the nurses, many of whom she knows so well. At 9am on Monday morning she was given some sedation to settle her down before heading to theatre to be prepared with lines for surgery. Her surgeon was unsure how much of her Exomphalus he would be able to repair, but said that he would do as much as he could.

She arrived back from theatre at about 2:30 in the afternoon. Her surgeon said that while the surgery was very difficult he managed to achive complete closure. She may well need further surgery at a later date, but for the moment she was in good shape.

And so she was. In fact thus far everybody is rather surprised at how well she is doing. It is actually strange to see her with no Exomphalus. Obviously her abdomen is very tight but so far all her vitals have been satisfactory. Particular attention is being placed on renal function. Therefore maintenance of acceptable measures, e.g., urine output will be key over the coming days. She is being being give a range of pain, sedation and paralysis drugs to keep her completely quiet. This regime is likely to persist for several days. Other issues such circulatory problems, sepsis etc have not presented themselves thus far.

We are staying in the hospital at present with no internet access, however, we will try o post updates whenever we get a chance. It is still early days, but we are very please with how things ahve unfolded so far.

May 30th... Surgery Call...
This evening we had a call from one of the surgical registrars at Temple Street. No the the risk of Chicken Pox has long since passed, and Ruth is currently very well, they have deceided that they would like to do her surgery next Monday, June 2nd. We will being her into the hospital tomorrow for blood tests and the current plan is to admit her on Sunday evening for surgery on Monday morning. At the moment we are not sure if they are planning on doing a partial or complete closure. Hopefully we will know better when we talk with her doctors.

May 7th... Better Again...
Well the Chicken Pox never came after all and thankfully Ruth's chest infection has now cleared up. We are hoping to contact Ruth's team in Temple Street at some stage during the week of May 19th with a view to scheduling a appointment to meet with them shortly thereafter.

April 29th... Another Chest Infection
Starting from last Saturday evening, Ruth became symptomatic of another chest infection. We took her to our family doctor on Monday morning and she has been started on a course of antibiotics. As usual, despite being a reasonably moderate chest infection, she has really been quite miserable and clapped ou. However, hopefully, once she gets a few doses of antibiotics on board she will be on the mend again in no time. So its looks like plans for surgery would have to have been postponed anyway! No sign of any Chicken Pox yet though!

April 22nd... Postponed
Today, April 22nd, we were scheduled to meet with Ruth's surgical team today to discuss the next step towards her surgery. While were were not fully sure of their exact plans, we can say that they had gone as far as provisionally book Saturday April 26th as a date for surgery Unfortunately, however, Ruth had was inadvertent exposed to Chicken Pox over the weekend. Given the potential infection risk ( to both herself and other patients) the entire exercise has been postponed for one month. No doubt Murphy's Law dictates that having postponed everything, Ruth will NOT contract Chicken Pox!, however, we will have to do our best over the coming weeks to ensure that she is fit an well in every other respect....and try not dwell too much on what lies ahead.

April 17th... Hospital Call!
Today we had a call from Temple Street asking to meet with them next week to discuss Ruth's corrective surgery. The have communicated a provisional date of Saturday 26th to bring her to theatre. We have to learn more details when we meet with them next week.

April 15th... Better!
Ruth's chest infection has finally cleared up!

April 8th... Chest Infection - Relapse
It would seem the the tail end of Ruth's chest infection never cleared up fully, and she has relapsed. Quite a miserable bunny really. We have taken back to our doctor and she has been prescribed another course of more potent antibiotics. Hopefully this should clear up her dose!

April 4th... Home Alone!
Today we are heading away for the weekend on our own - without Ruth. It is the first break we have had together since she came home - so needless to say we are really looking forward to it. Ruth will be staying at home with one of our nurses and no doubt she will enjoy the weekend too!

April 2nd... Chest Infection
While Ruth's chest infection is very much improved she is still not yet fully recovered.

March 20th... Chest Infection
Starting the day before yesterday, Ruth presented with chest infection. As usuual her decline from a respiratory point of view was quite dramatic. What started as a moderate coughs from time to time in the morning lead to signicant respiratory compromise by early evening. As usual such evens remind us that despite the fact that Ruth is going exceptionally well that her stability is quite fragile. Bye yesterday evening Ruth although only suffering from a moderate chest infection was unable to tolerate being off her machines at all. Anyway we brough her to the doctors yesterday morning and she has started a course of anitbiotics.

March 10th ... Tummy Bug!
Starting Wednesday 5th, Ruth presented with nasty gastric bug. Poor mite was getting sick every 30 min for about 16 hours was unable to tolerate feeds for a further 24 hours. We have only been able to very gradually re-introduce her oral and NG feeds over the last few days. This is the first gastic infection Ruth has had in quite some time

Feb. 9th ... Big Swim!
Today we brought Ruth to a swimming pool for the first time. Taking Ruth into a swimming pool is a little dangerous to say the least, but despite the fact that she got very cold, she enjoyed it immensely.

Jan 18th ... Bear in the big Blue House!
Today we headed out the to Olympia Theatre to see the Bear in the Big Blue House - show - LIVE! It was great fun getting to meet all the characters from Ruth's favourite TV programme.

Jan 11th ... Happy Happy Happy Happy Birthday... Birthday!
Ruth was two years old yesterday and today she is having her very first kiddies birthday party .... It was a tight squeeze in our small apartment but great nonetheless. We will post some Photos at the end of the month in the Jan Update.

Jan 6th... A little Lighter!
Ruth had her first weight since we started her new feeding regime and not surprisingly she has lost weight, however, at almost .4kg in two weeks it was a little more than we expected. However, as her progress with oral feeding has been very good, we see no reason to stop the current plan of action but will nonetheless take some steps to try and arrest this weight loss.

December 25th ... ...Happy Christmas Everybody...
"Stretch or Starve" is actually going well. We are feeding Ruth via oral plate feeds during the day and supplementing calorie and fluid intake with overnight NG feeds. Anyway today is Christmas Day and Santa Claus brought Ruth a pram for he Dolls and toy cash register to play shop! She is delighted..

December 24th ... ...Night Time Only for NG Feeding...
We we have decided to persist with a strict "Stretch or Starve" policy when it comes to feeding Ruth during the day, and supplement this with NG feeding overnight. Lets see it goes once again.

December 23st ... ...NG Tube Back Down...
We we though it was going to be a question of "Stretch or Starve" and it was - Ruth-Starved! After about 36 of the new regime, Ruth failed to eat anything near an adequate amount of food. More importantly he only dank about 200mls of fluids (water). So we have re-sited her NG tube for now and we shall rethink our position tomorrow.

December 21st ... ...Trial Removal of NG Tube...
Today, December 21st we are going to trial the removal of Ruth's NG tube. The idea is to see how she gets on eating/drinking in the absence of the backup of her tube. Her present level of intake would not be sufficient for maintenance nutrition, however, perhaps hunger will kick in? There is only one way to find out.

December 12th ... ...One year home...
Today, December 12th, Ruth is one year home from hospital. It has been quite a year and we would like to thank all those in Temple Street, the Northern Area Health Board, our home case nursing team and our family and friends for their invaluable support and assistance throughout the year.

November 11th ... ...Meeting With Anaesthetic Consultant...
Today, November 12th we met with Ruth leading Anaesthetic Consultant to discus Ruth's ventilation requirements, specifically in view of the fact that Ruth has now mastered walking. Based on his assessment of Ruth, he was happy to approve giving her breaks off her machine during the day to give her an opportunity to play walk about and explore. This is great news and should make life a good deal more manageable moving forward.

October 3rd ... ...Meeting with Surgeon
Today we met with Ruth's consultant paediatric surgeon. It had been a number of months since we last spoke with him or indeed since he has met with Ruth. In the interim we have conducted a case conference in August and he had be appraised on the content and outcome of that discussion. He has accepted the view of the anaesthetic team that ventilation weaning and decanulation of Ruth Tracheostomy Tube is an unlike option prior to surgery. Having said that he feels that Ruth's abdomen is still very small and has proposed to admit her for a simple procedure in an attempt to assess the feasibility of closure surgery at some stage next year. At this stage he feels it remains likely this will be a staged surgical process.

September 26th... ...Speech and Language Review @ CRC
Yesterday Ruth attended the Central Remedial Clinic (CRC) for a more detailed assessment of her speech and language development. Ruth was referred to the CRC by the Speech & Language Department at Temple Street Hospital. The CRC is a national centre for the care, treatment and development of children (& adults) with physical and multiple disabilities through a very broad range of services and expertise. Ruth's assessment established that for all her progress in the area of communication, there remains a mountain of work to be done. As an intelligent 21 month old toddler, she has oodles and oodles of things she wants and needs to say. Recently it has become clear that her limited verbal and signs skills fall well short of enabling her to achieve her communication needs. Over the last while she is visibly frustrated from time-to-time and this in itself has been creating other problems. An entirely new approach has been suggested moving forward. We'll report more in the October Update

September 6th... ...First Steps Walking!
Ruth's took her first steps on today Friday, September 6th! We were in Temple Street Hospital at a Speech & Language Session when Ruth finally plucked up the courage to take her first steps across the room to get to a toy she wanted to play with. Another few weeks should see her mastering walking and then the fun will really begin - a walking toddler on BiPAP!

September 3rd... ...Rubella Vaccine
As you know we decided quite some time ago to deliver Ruth's MMR vaccinations via single vaccines. She travelled north to Dundalk once again to get her Rubella vaccine. She will receive the last of her vaccines in November.

August 21st... ...Case Conference
Ruth's first case conference since her discharge from hospital took place as scheduled yesterday. As always this was a useful exercise. We will report more on this in the next update.

August 14st... ...Standing Tall
Yesterday evening we got our first phonographs of Ruth's proper attempts to stand unaided. They are posted on the Photos page.

August 2nd... ...Away for the Bank Holiday Weekend
Travelling to Co. Wicklow for a short break over the coming bank holiday weekend.

July 31st ... ...Date for Case Conference Set
A date has been set for Ruth's case conference - August 21st next. At the moment it has not been confirmed which members of he team will be able to attend, however, will try stick to this date.

July 7th... ...Great Hols!
Our trip to Cork was a great success. We will try post some photos soon

June 29th... ...Off On Hols!.
Although Ruth is still a little chest we have decided to go ahead with our plan to travel tomorrow. First stop will be in Douglas in Co. Cork for a wedding. We will then spend the remainder of next week touring the beautiful environs of West Cork.

June 26th... ...Back in Hospital Again..
Starting Monday evening (24th) Ruth's form turned fairly miserable and she began a cycle of coughing and vomiting. Her coughing, not helped by a very distended and painful belly become more persistent and were accompanied by periods of poor SATs and more vomiting by midday Tuesday . Early on Tuesday evening we adjusted her BiPAP pressures and put her on a small amount of oxygen. While it certainly give her a bit of a break and help her relax, it seemed unlikely to use that she would get any better over night so we took her into hospital for assessment and intervention. She was admitted, given Ventalin nebulisers, put on IV antibiotics and maintenance fluids and kept in over night for observation. Although she was in much better form by this morning (Wed, 26th) she is still fairly miserable and it is likely that they will keep her again tonight.

June 12th... ...Surgical Review...
Ruth attended her consultant paediatric surgeon last Monday (10th) for the first time since her discharge from Temple Street last December. He was very pleased with her progress to-date and overall status. On the back of this review, we are now attempting to schedule her first case conference meeting as an outpatient with her combined medical teams in August. We hope that this meeting will help us map objectives and care plans through the remainder of this year early 2003.

June 4th... …Late Again...
Our home computer packed-in last week so the update scheduled for today could not be prepared. We are hope to have a new machine sorted today and will post a update in the next day or so.

May 25th …Ballindaggan Bound...
One of our biggest restrictions when heading out and about with Ruth has been the absence of humidification. Ruth's ventilation setup whilst "on tour" does not include this unit and consequentially, trips are limited to to a max duration of 4-5 hours. The humidification unit is essentially a water heater and operation via a portable battery unit is not an option (I guess because it requires too much power). Recently however, we fitted a DC-AC power inverter in our car. This gives us standard AC mains power while travelling. This effectively allows us to remove travel-time from Ruth's four hour window off humidificaiton. With this in hand, we travelled to Ballindaggan, Co. Wexford to visit Ruth's great Grandmother last weekend. We brought our humidification unit with us and ran it off the power inverter for both of the 2 hour legs of the journey. The trip was a great success. We'll post some photos and stories in the June update.

May 14th …Measles Vaccine...
As mentioned previously we have chosen to immunise Ruth for measles, mumps and rubella via single vaccines, rather than the combined MMR vaccine. As single vaccines are not readily available in Ireland, we travelled to Dundalk north of Dublin today for the administration of Ruth's measles vaccine. The import point, however, it that it is good the Ruth is now immunised.

May 12th …New Photos...
A new page of photos from the last month have been posted on the Photos Page.

May 6th …Pull to Stand...
Furthering her efforts to get mobile, Ruth has now started to pulling herself up to a standing position. She is getting a great kick out of this. Needless to say we have lowered to mattress of her cot!

May 2nd …Running Late...
The update for May was supposed to have been posted on May 1st. Well as you have probably gathered we are running behind scheduled. This will no be posted tomorrow May 3rd. Apologies.

April 24th …Broken Links...
Some of the links on the "GENERAL INFORMATION PAGE - Links to Further Reading" are no longer valid. I will revisit this page over the next while and fix the broken links and add some new ones. Apologies.

April 14th …Doing the Splits & On the Move...
We mentioned that Ruth has been using her suppleness to getting to and from the crawling position. We have posted some photos on the "Latest Update" page to illustrate her antics. Since reporting this last week she has gotten so quick at getting between the sitting and crawling position that it has been difficult to capture on file!. She has also progressed to using her arms once in the crawling position has started to crawl along the floor

April 8th …A Day Out - Further a field... Yesterday, Sunday 7th, we took advantage of the beautiful weather to meet with friends in Powerscourt House & Gardens. Located about an hours drive away from our apartment in Enniskerry, Co. Wicklow, this is the furthest we have travelled away from home, the city and the comfort of readily available emergency services. Although a little dry and exhausted by the time we returned when we returned Ruth got on just fine. It's an important first step towards heading further into the wider World. We'll publish a photos in the next update. To see some of the beauty of Powerscourt House & Gardens, click here.

March 26th …Top Form...
Although it took a while, Ruth is back to top form since late last week. In the last week or so her kisses are getting sloppier and she is learning to shimmy about backwards, on her bum, on the floor. It is no longer safe to leave her unattended on the couch for fear that she will take a tumble! We have resumed our feeding/oral stimulation activities in earnest once again and she is doing real well of late.

March 17th …Nearly Better...
She has had lots and lots of trachy and nasal secretions all week which has made her quite miserable from time to time. However, both her cough and mucky chest have improved slowly during the week. She finished her antibiotics this evening and we hope that she will be fully recovered in the next few days. On a lighter side she has started dishing out kisses. Hilarious and cute.

March 13th … Back in hospital... and out again!
Starting last Friday, Ruth had a few days of lots of coughing and general poor form through the weekend. On the 12th her bouts of coughing had becoming more persistent and were accompanied by periods of poor SATs. She was pretty miserable. As she was not getting any better we took her into hospital for evaluation/intervention. She was admitted, given Ventalin nebulisers, put on IV antibiotics and kept in over night for observation. Although still coughing from time-to-time and still quite chesty she was in much better form by this morning. She was discharged this evening on oral antibiotics to recover at home.

Feb 27th … First Outpatient Review...
Today Ruth had her first outpatient appointment since her discharge from hospital last December. Overall, she received very positive assessments from her various teams which was very encouraging

Jan 21st … Great Birthday party...
Today we had our had to deal with our first emergency at home. Ruth had a complete airway obstruction around midday . Inside thirty seconds she went from playing with her toys to being very cyanotic, unconscious and not breathing. However, Annmarie was swift in her response to resuscitate Ruth and bring the situation under control. Once Ruth started breathing again she stabilised and recovered quite quickly. See update for Feb 4th.

Jan 20th … Great Birthday party...
As it happens Ruth was not is the best of shape to host a birthday party on the day of her birthday, however, today, she made up for it with a great belated birthday bash. You can see some photos on the Photos page.

Jan 12th … Back in hospital... and out again!
Ruth's poor form on the 10th yesterday deteriorated over night. On the 11th after bouts of persistent coughing and poor SATs throughout the morning we decided to take her into hospital for evaluation. Once we brought her in she made a complete liar of us and sat up laughing and chatting to all her old friends!! She was given some meds and kept in over night for observation. She was discharge this evening.

Jan 10th … A Year Old...
Ruth is one year old today, Thursday Jan 10th 2002. That she has reached this milestone is a remarkable testament to firstly the excellence in the medical care and treatment she has received in the Intensive Care Unit at Temple Street Children's Hospital, and secondly, to her tremendous unique character. Happy Birthday Ruth. As it happens she is not is the best of shape for a big party, so will will have to wait until she is a little bit better before celebrating this milestone.

December 30th … Home Again...
Ruth completed her course of IV antibiotics on Thursday. Her IPAP pressures were then weaned back to their original levels before she was admitted to hospital last week. This was achieved by Saturday morning and Ruth was discharged on Sunday afternoon`after just 8 days in hospital.

December 25th … Christmas Day In ICU
Ruth has improved greatly since Saturday. Today, Christmas Day, she had her first meeting with Santa Clause, and getting loads of attention from friends, family and staff in the unit.

December 22nd…
Back In Hospital. She started coughing midmorning on yesterday (Friday, 21st) and continued to deterioriate through to this morning. We brought her back into the hospital and she was immediately admitted back into ICU. Initially it appears that she is suffering from a combination of tonsillitis and bronchitus, both of which we understand are of a viral nature. She also appeared to be a little dry and generally running out of puff coping with the increased effort all of the above brought to her work of breathing. Its been a miserable, rough day.

December 12th… Discharge.
After just over eleven months or 336 days, Ruth has been discharged from Temple Street today.

December 10th… D-Day Minus Two...
After a successful weekend on our own at home, it is now planned to discharge Ruth next Wednesday, December 12th. See today's update for more details.

December 8th… A first night at home...
Today we took Ruth home to our apartment for the remainder of the weekend. This is the first night Ruth will have spend at home.

December 1st … Sitting up...
Ruth's Omphalocele has made learning to sit up quite a difficult balancing act. In addition, given her respiratory compromise, it also represents a more significant aerobic exercise for her than it would for any other baby. Over the last while, however, she has become more and more stable and confident and is now capable of sitting up for a few minutes unaided. It is unlikely that she will crawl, and indeed given the nature of her Omphalocele it is probably is not something that will be encouraged. However, sitting up represents the achievement of another significant developmental milestone along to road to gaining load-bearing capability in her legs and moving towards standing and ultimately walking.

November 24th-25th ...A weekend on Our Own
On the weekend of November 24-25th, we were given the use of a hospital ward to look after Ruth on our own. This exercise went very well and represents another important step along the road to her discharge. See Update of November 26th for more details...

November 18th...Skin Coverage Over Omphalocele Complete!
This morning removal of the gauze has revealed that the task of promoting a growth of skin over Ruth's entire Omphalocele is now complete. From a surgical perspective this has been the primary objective since the decision to adopt a conservative management approach to her case towards was made in January of this year. So, although it has taken over ten months, its completion is nonetheless a major milestone in Ruth's overall treatment.

November 12th ...Teeth, Teeth … Everywhere...
It took Ruth over four months of teething to produce her first two teeth. Well, it seems like they are going through a bit of a growing spurt at the moment. Over the last six weeks or so another six have arrived...two incisors, two back teeth (on one side!) and her two front teeth have finally emerged today!

November 7th ...Outpatient Health Care Funding Approved…
A vital administrative milestone was achieved today when we learned that approval had finally been granted for our application for state funding to cover the costs associated with discharging Ruth to a home environment. This funding will cover the purchase and/or leasing of all her necessary equipment, their associated consumable components, medical supplies, medication, a certain amount of home-based nursing care, not to mention all aspects of her ongoing medical treatment as a hospital outpatient. As both the initial and ongoing costs associated with Ruth's care at home will be substantial, so the fact that approval has been granted is a weight off our minds.

November 4th ...First Solo Excursion…
Our first solo excursion with Ruth tool place late on Sunday afternoon (4th). All of our previous excursions beyond the hospital environment were accompanied by at least one ICU staff nurse. However, late on Sunday afternoon we loaded up and headed off unaccompanied by any hospital personnel on a short shopping trip down town. We got as far as Henry Street in the heart of Dublin city center, perhaps a fifteen minute walk from the hospital. We stopped off in a large shopping mall and two other shops along the way. This represents an exciting important confidence building milestone in the transition to Ruth's ultimate discharge. In total we were out for just over ninety minutes and the exercise was a complete success.

November 1st ...Submit Message to RHB…
Many visitors were having problems with the old "Send an email to Loman & Annmarie" feature that used to be located at the bottom-center of the RHB browser window. To avoid further confusion, this feature was removed altogether from the site a short while ago. It has now been replaced with a form based utility that allows visitors to send us messages by entering the text directly into their Internet Browser (i.e., without having to use their own email client). Apologies to all those who attempted unsuccessfully to send messages in the past. Have fun with the new form!

October 16th...Photos of first outings…
Photos from Saturday's outings have been posted on the photos page.

October 13th...First Outings in her pram…
Yesterday Friday October 12th, Ruth had her first excursion in her pram. This included a visit to the fish tank in the main lobby and and a few minutes in the fresh air at the front door of the hospital. Today, Saturday 13th, she had her her first excurstion beyond the hospital environment when we went for a vrief walk around the block. Ruth got to feel a breeze and sun in her eyes. She also got to see the world that exists beyond the Intensive Care Unit for the first time. Although she was clearly a little overwhelmed, she loved it - "a lamped rabbitt on acid!" was the expression I used. To have Ruth out and about was a trenendous day for us as parents and a proud day for an awful lot of people in Temple Street. There were lots of smiles all round.

October 12th...Doing well with no Oxygen…
Ruth's oxygen has been turned off, without intermission for the last three days. This means that her ventilator is using room air, without added oxygen to support her breathing.

October 10th...Nine Months Old…
Ruth was nine months old today...

October 5th...Revised General Information Page Posted...
A revised version of the General Information Page has now been posted to the site. The revised version, comprising a number sections and pages attempts to present much of the information presented in the original version in the context of Ruth's realities as they have evolved over the last number of months.

October 9th...Revised General Information Page Posted...
A revised version of the General Information Page has now been posted to the site. The revised version, comprising a number sections and pages attempts to present much of the information presented in the original version in the context of Ruth's realities as they have evolved over the last number of months.

October 2nd...First Sign…
Yesterday, without any doubt whatsoever, Ruth said goodbye to Annmarie in sign language. We mentioned before that we tentatively believed that Ruth was slowly coming to understand that there was significance and meaning in the sign language gestures we had been using in our communication with her over the last number of months. The sign for goodbye was one that we have felt she has understood for quite some time. In the last few weeks she has been making more constructive attempts to mimic the hand gesture associated with the sign for “goodbye” It would seem in the last day or so she has mastered the finer movement of her fingers and hand to correctly make this sign. Out of the blue she performed a perfect replica of the sign yesterday afternoon. Just to prove that it was no fluke she repeated her success both last night and this morning!

September 28st...First trip out of ICU
To tie in with Annmarie's birthday, Ruth's first trip out of the Intensive Care Unit took place on Friday afternoon. We were given the use of a parents room for the occasion that is located close to the unit. The trip was actually a birthday surprise for Annmarie, so, as soon as she left the unit for her half hour lunch break, a flurry of activity was initiated to transfer Ruth's menagerie of equipment to the adjacent room. In the interim and during the transfer itself, Ruth's respiration was assisted by bagging her with pure oxygen. As soon as everything was set up, I had the pleasure of taking Ruth in my arms across the unit and out the doors for the first time in her life. To watch her mesmerised face excitedly taking in all the new views on the short trip down the stairs to the awaiting room was something very special. Upon her return, Annmaire was lured to the room on pretense of a meeting and both the surprise and the momentous milestone it represents was successfully achieved. More on Monday's update.

September 21st...Short trip out of ICU a possibility…
Since the beginning of this week (17/Sept/01) Ruth’s oxygen has been delivered into her ventilation airway circuit using a low-flow oxygen regulator. This regulator is capable of very accurately delivering low volumes of oxygen into an airway circuit. This has allowed Ruth’s oxygen requirements to been further weaned from 05Lt./Min to 0.4Lt./min and sometimes down to 0.3Lt./min.

In terms of portability, this is a manageable level of oxygen from both a supply and safety perspective. This combined with the fact that that Ruth’s overall condition at present is very good has made a short trip out of the Intensive Care Unit an imminent possibility. We are hoping that with some minor modifications, our pram will safely be able to accommodate Ruth, her portable BiPAP ventilator machine, a suction machine, battery packs, an oxygen tank and other materials and equipment to make such a trip possible.