Friday, 18 April 2014

A quick update (#43)

Well, chickenpox has finally gone and the health of the household seems to be on the improve in general. Needless to say, everyone is now wearing masks, and most rooms of the house are sporting a curious cacophony of the smell of at least three brands of disinfectant. We are taking no chances.

Albert has reflux, which is fairly common in babies his age, but it causes a few problems when trying to ensure he gets the correct measure of medication at feed time. We have thoroughly enjoyed fitting him into our family routine and there is no shortage of volunteers to cuddle, pamper or sing to Albert any time he seems restless. Our efforts to create a neat and effective solution to holding his feeding tube in place have ranged widely between neat and effective, but end up being neither.

In spite of our fumbling efforts, and in spite of the fact Albert seems to have caught a mild sniffle, he is doing rather well at home. His latest weigh in was on a different set of scales, which means we must allow a certain margin for error, but even the most conservative estimate has him gaining steadily. Using the same scales next week will give us a better indication of his progress.

We are praying that the medicine is still doing its work, keeping Albert's fluids in check and relieving undue pressure on his liver, and that this weight gain is genuine growth, not fluid build up.

Tuesday, 15 April 2014

Masking the Problem (Albert update #42)

A very brief update for those who are praying for Albert. Our routine has settled into a fairly tight schedule since Albert has come home. Susie has been expressing and feeding him around the clock, and I have been doing my best to give her as much sleep as possible. The meals which are being provided have made a huge difference in this first week he has been home, making it possible for us to tread water rather than feel as if we are drowning.

The doctor has also advised that we should not allow visitors, nor take Albert to any public space for the time being. We have four children home sick, three on antibiotics, with a throat infection of some kind. Anyone who so much as sniffs, coughs or complains of a headache is slapped with a face mask and banned from playing in the same room as Albert.

Albert himself seems to be doing very well. The extra stimulation, attention and love of his many siblings has improved his world immensely. He seems to be healthy and alert but, without the monitors, is difficult to see if he is still progressing well. We will be able to get an idea when he is weighed in each week.

So many of your have given us food, help and encouragement, which has kept us going through some pretty tough months. Someday soon I hope I will be able to express our gratitude more eloquently but, having slept half the night on the tiled floor beside Albert's bouncer, in my befuddled state I cannot put it more eloquently than this; Thank you!

Please keep Albert and his parents in your prayers. There is every reason to be hopeful now, but it is a long way from over.

Thursday, 10 April 2014

The day he came home (Albert update #41)

When Albert was less than a day old, and still fighting for each breath in the Neonatal Intensive Care Unit, I asked the doctor what would need to see before we could bring him home. When he improved enough to be moved to the High Dependency Unit, I asked again. When the doctors believed Albert was improved enough to move back to our local hospital, and he subsequently went into heart and liver failure, I still could not let the day go past without asking about the journey towards home would look like. When I held Albert, talked to the cardiologist, when he survived gastro and chickenpox, took a walk around the block and was moved into the regular children's ward, the last question of the visit was always "what has to happen in order that Albert can come home?"

Today, Albert came home.

He is still under quarantine. Any of our children with a cough must wear a mask. We are under strict orders not to take him into any public space, nor to allow general visitors, so please do not come expecting to see Albert, ... just yet. He still has a long way to go to become strong enough to face the open heart surgery he needs, and then the recovery from that.

For the moment we simply want you all to share in our joy at reaching this small milestone. In the context of his short life, this is big! I will let the photo's do the talking.

Saturday, 5 April 2014

Warding off Albert (Update #40)

As I mentioned yesterday, Albert has been moved to the regular Children's ward and placed in isolation. In practice what this means is a totally different care arrangement. Albert is lying in a child bed/cot big enough for a 4 year old. The nurses run obs (observation of his various life signs and general health indicators) about every four hours and 'check' him about once an hour, on average. Albert is quarantined, so the nurses go through quite an involved routine just to enter the room. When I visited this afternoon the nurse was dressed in a plastic suit stretching over her whole body, plastic gloves, surgical mask and so on. While the children's ward has far less staff per patient than the special care unit, this routine discourages nurses from casually coming and going. It is such a hassle that they only come in when they have to. Fair enough, but that leaves Albert more or less alone in a room for all but the time it takes for someone to tube feed him. In practice he would be left alone for three to four hour stretches. As accustomed as we have become to his hospital surroundings, we cannot abide the thought of that kind of abandonment.

The assumption is, you see, that patients in the children's wards will be accompanied by a parent. There is a chair which is designed to sleep on. That is, when you lay out three of its square cushions, you have a layer of something under you slightly more comfortable than the floor. A few days ago we were concerned that Albert would be sent home before we knew how to care for him as well as the hospital was caring for him. Now we are keen to take him as soon as possible.

So Susan has set up camp in the room with Albert.Susan is supposed to be learning the ropes, (or, rather, the tubes) of Albert's feeding routine, but she has been thrown in the deep end, spending a lot of time supervising the feeding herself. We are now trying to juggle things so that one of us can remain with Albert most of the time, and the other manage things at home. I do have to work and, while my work is flexible, there are some appointments (classes, meetings etc) that are inflexible.

The Paediatrician seems confident that Albert has only a mild case of chickenpox and that the isolation is more to protect other patients from infection. When pressed, he admitted that he hoped to see Albert progress well enough to be home by Easter. It looks like the bulk of the time before then will see one of us staying 24 hours a day at the hospital. Please God Albert comes home soon.

Friday, 4 April 2014

Spotted Albert (Update #39)

I just received a phone call from the resident doctor in Albert's ward. It seems Albert has developed spots on his torso which are consistent with chickenpox. The nurses have moved Albert into isolation in the regular children's ward (to move him away from other newborn babies), and will be kept in strict quarantine and under close observation for some time.

Susan and I were so careful with the quarantine that even the nurses told me, on a few occasions, that were were overdoing it. It is immensely frustrating.

We will, of course, continue with our preparation to bring Albert home, and believe that God will bring him through this. These plans include Susan going in to the hospital this evening and staying with Albert for the entire weekend. She will be trained in all the necessary care of Albert this weekend and I will visit tomorrow to pick up some of the basics myself.

Since my prayers at the moment are limited to "Dear God, make it STOP!" I beg for your continued prayer for Albert's swift recovery.

Anastasia is still symptom free and the remaining children are in various stages of recovery. They should all be fine by the end of this week.

Wednesday, 2 April 2014

Around the block with (Albert Update #38)

It is almost a week since my last post and I finally have some more news to post.

Albert seems quite well, and has been progressing slowly all week. I have been busy with lectures and marking students' papers and so have not actually seen him since my Saturday visit, but Susan has been to sit with him daily this week. She has been delighted to be able to bath, feed, change and play with Albert across the visits.  And, joy of joys, on the day he was six weeks old, she was encouraged to take Albert for a stroll in a pram!

So, for the very first time in his six weeks of life, Albert saw the sky! He has been from hospital to hospital in sealed cribs and ambulances, and in wards constantly, so it was a genuinely beautiful thing that Susan could lay him in a pram and take a walk around the block. Albert stared at the sky, watched the leaves and thrashed his little arms as he felt the wind on his cheeks. (His eyes are closed against the sunlight in the picture.) Those of you who watched the video I posted a week ago will appreciate how Susan felt as she wheeled Albert past a building site where that same song was playing loudly!

Over the past two weeks Albert has been without oxygen without any drama, has even grown a little, and has become more alert and active. We have given up on attempts to breastfeed at this stage and he continues to be hit-and-miss with bottle feeds, so his feeds are still mostly via a nasal gastric tube. The exciting news is that the paediatricians and nurses have been mapping out a formal plan to move us toward that time when Albert can finally come home.

Several conditions still have to be met before he makes that journey. His feeding situation needs to be progressing or, at least, manageable. He could come home next week if he can manage 100% bottle feeds. That is still the ideal, but seems unlikely at this stage. (Who knows? We are praying! It would not be the first miracle in his short life.) If he can manage some bottle feeds, or perhaps even if he cannot manage them at all, the nursing staff will train Susan, myself and the older two children to manage tube feeding at home. This may mean that Albert could come home and remain home until he is strong enough for open heart surgery later this year.

While this is amazing news, spare a thought for Susan. By the time she has expressed milk, fed Albert, changed and comforted Albert and performed the simple cleaning and upkeep of the medical equipment there will be precious little time to spare before the next feeding cycle begins again. While myself and the older children can manage part of this routine when we are home from work and school respectively, this routine will run for 24 hours each day! While it is possible that Albert may eventually take up the bottle, it seems more likely that we will be tube feeding him for the next three to six months.

On top of this, as soon as Albert actually makes it home, all the specialist appointments that we have been putting back week after week will all need to be attended and responded to with therapies, medications and advice.

It is very hopeful and happy news. But, to quote a famous Englishman, "... this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning."

Friday, 28 March 2014

The Nurse's News (Albert update #37)

Albert is quite well and nothing dramatic has happened over the last two days.

All but one of our children are now down with chickenpox. Most of the children are still experiencing only mild symptoms but Isaak seems to be suffering more this time around. He is a big boy, he will get over it.

Albert has not fed well for a few days now, not taking a bottle at all or, even when he does, only taking 20mls or so and vomiting some back. The good news is that he has improved enough to increase his feeds and stretch them out to 4 hourly, taking about 96mls a feed now. This is still well below a normal child of his age and size, but it represents slow progress. Although he has been vomiting a small amount after each feed but, since he shows no other sign of distress, the doctors think it is probably just reflux, which is common at his age. 

The latest blood test showed hi white blood cell count to be much higher than before, which normally indicates that he is fighting an infection of some kind. The doctor's thorough examination confirmed that Albert's heart, lungs and liver are responding as well as they ever have, and he seems just as alert and energetic as before. He does have a small sniffle, so he may be fighting off a simple head cold. In any case, another round of blood tests tomorrow will give us an indication if his white blood cell count is increasing or decreasing and we can go from there.

The nurse I spoke to on Friday was laughing as she told me that Albert had pulled out his feeding tube, as he is in the habit of doing. As she was retrieving the tube, she laughingly scolded him for being so naughty. And he smiled. Having experienced seven babies whose first appearance of smiles turn out to be the grimace of the effort it took them to pass wind, I immediately demanded more details. The nurse claims to have seen enough to tell the difference, and she swears he has responded to her laughing scolding with a smile twice.

I am gladdened that he already seems to be responding to people with genuine emotions, but I confess some sadness at having missed it. I am sure I will get over it. Possibly about a minute after he smiles at me for the first time.

After the usual sterilisation, I was able to get to the hospital today and see Albert. He was alert and interested as I talked and sang, and watched both the nurse and myself each time we spoke. In short he seems to be growing stronger and more aware of his surroundings. He took about 30mls from his bottle and then fell asleep on my shoulder.

One exciting development is that the nurses are starting to make reference to the training Susie and I will have to undertake in order to care for Albert when he comes home. It may yet be weeks, but the fact that they are beginning to prepare us means that there is  alight at the end of this particular tunnel.