Another hospital visit

At their six month check up, Zaan was only one kilogram lighter than his brother and half a centimeter shorter.  He couldn’t sit unassisted yet, but was able to turn from his back to his stomach and back again.  He was also very strong.  If he got hold of a toy, nothing Tristan did could get him to let go.

He wasn’t on solids yet.  It seemed like he couldn’t quite grasp the idea of eating.  He was happy to taste the porridge, but swallowing it was still a bit beyond him.  For this reason I started adding a bit of porridge to some of his bottles.  After he turned 7 months old, he started drinking worse.  He didn’t finish his bottles and he just seemed a bit off.  When he only drank two whole bottles on the Monday, I decided to take him to the doctor.

On Tuesday, 11^th of March 2008, the doctor looked at him and explained that Zaan had bronchiolitis.  He showed me how Zaan was breathing faster than normal and that was the reason he wasn’t drinking so well.  Because of Zaan’s medical history the doctor preferred to have him admitted to hospital, to give him support in the form of oxygen and a drip.  Unfortunately the hospital where the doctor normally admitted children was full with gastro cases and Zaan had to be admitted in XXXXXXXXXX hospital again.

After the treatment he had received there over December we weren’t happy with the hospital, but the doctor wouldn’t treat him anywhere else.  I drove to XXXXXXXXXX again, and had to go through the whole admissions procedure again.  Once I was allowed into the children’s ward, Zaan was placed in a room with 4 other children.  When the doctor made his rounds he ordered bloodtests, a chest x-ray, oxygen and drip for Zaan. He also had him placed in high care to get him out of such a crowded situation.

High care turned out to be a mistake.  Day one in hospital and I could already see the difference the oxygen and drip was making for Zaan.  He was a happier little baby.  The bloodtests were negative for RS Virus, one of the tests the doctor had asked for.  The doctor couldn’t believe it and had the test repeated.  Zaan was in the same room with a little girl of about 18 months.  By day two in hospital the high care room had been moved to a 4 bed room.  The little girl’s twin brother was now also in high care as well as a one month old baby that happened to be the same size as Zaan.

I spoke to the mom of the 18 month old twins and she told me that her little boy was also disabled and how difficult it was with one baby sick in hospital and the other sick at home.  After hearing what was wrong with Zaan she told me that there was also respiratory syncytial virus that was waiting for us.  I really didn’t pay much attention to her at that stage.  Zaan was looking a bit worse that morning and had developed a bit of a runny tummy, but he was still happy to sit in his Bumbo chair and play with Tristan.  The repeated blood and sputum tests showed negative again for any viruses.  To me that meant that Zaan had a bacterial infection which would get better with the antibiotics he was getting.

Friday morning and I could see Zaan was now feeling terrible.  He still had diarrhoea.  The next day Tristan was also not feeling well.  He had a fever and runny tummy.  The doctor gave him a quick look over at the hospital.  Zaan was still not feeling well.

Sunday morning he had been moved back to the two bed room with a new child in the other bed.  He wasn’t on oxygen anymore.  Although he was still on the oximeter, the alarms had been switched off and the nurse was nowhere in sight.  Zaan was a sleep, but his oxygen saturation was below 75%.  This upset me a lot.  I may not be qualified, but I had spent enough time with Zaan and learned enough to know that this wasn’t acceptable.  We finally traced the nurse that was supposed to care for him in the tea room on the other end of the ward.  When we complained her reply was that he has beening taken of oxygen and that she would just adjust his mattress so that his oxygen saturation would lift.

We were there during her stats check and saw her monitor his saturation during the adrenaline nebulisation he was getting.  That was even more upsetting.  It meant that the information the doctor was receiving was faulty.  How was he supposed to make the right medical decisions for my son if he didn’t know what was the real situation?  On our way home I phoned the doctor and told him everything we had seen.  He phoned the hospital and had Zaan placed back on oxygen.

We couldn’t leave our son in this kind of care and after a whole day spend trying to get an ambulance to transfer Zaan to another hospital we finally gave up and went to move him ourselves on Monday.  We collected Zaan after borrowing the oxygen cylinder from the helpful neighbour who got it previously.  I broke the double pram when I loaded the oxygen cylinder in the bottom of the pram and the two car seats on top.  The wheel came of and hubby had to carry the front of the pram all the way to the car.

Once we got to the new hospital the difference was so apparent.  Nurses that actually cared about their patients.  An introduction to the ward including a list of ward rules.  Zaan was placed in a room of his own.  The doctor came past and asked for a new chest x-ray.  The results after a week in hospital was the same as the day he was admitted.  Two days later the new x-ray showed that he was now heading for pneumonia.

The children’s ward didn’t have the capability to look after one child on such a dedicated basis, so Zaan was transferred to the NICU.  This huge bed, with little Zaan on it was taken out of the ward, up the lift and into the NICU.  Once inside, the nurse explained everything they were going to do.  Zaan was placed in an isolation room in the NICU.  I got the worst fright ever when she plugged his nasal cannula into the room oxygen, just for this thing to blast out a huge volume of air.  Zaan also got such a fright.  The nurse was calming him and saying how it was just a lot of noise, but I also saw her wipe some blood of his nose.  I really didn’t want to put up a fuss, but that had me so upset.

Thursday afternoon, father in law told us that the nurse had told him when he visited that Zaan had a very contagious disease and that we had to take precautions when we visited him.  Friday was Easter and after going to church we immediately went to visit Zaan.  Rivan was also sick and with the contagious disease running through out minds, we took him to the emergency room.  I was waiting in the emergency room waiting area with Tristan and Rivan while hubby went up to visit Zaan.

That was when we found out that Zaan had the RS Virus.  He must have been infected with it during his stay in XXXXXXXXXX hospital.  Rivan was diagnosed with bronchitis and given medication.  After our trip to the hospital we visited my dad for his birthday.  The next morning the hospital phoned to let us know that they were transferring Zaan to the PICU at Unitas.  The substitute paediatrician decided that although Zaan wasn’t looking worse, he also wasn’t looking better and that Unitas had better equipment to deal with an emergency.

We drove straight to Unitas and arrived there to find the paramedic, doctors and nurses in a panic. Zaan had crashed in the ambulance and had to be bagged with adrenaline to stop the bronchiospasms. He was intubated and sedated before transfer, but the doctor and nurses couldn’t find a vein to place a drip.

We stood there about three meters away and all we could do was look.  These were people that dealt with grave medical emergencies and they were panicking.  The lady paramedic told us we had a very sick little boy as she left.  The thing that kept going through my mind was this is it.  My baby is going to die.  One nurse phoned for the emergency anaesthetist.  He was busy and could only get to the hospital in an hour’s time.

In the meantime the doctor was trying to get a vein that would hold the drip.  Both arms and both feet were already stuck so many times that a drip wouldn’t take.  The doctor tried to place a drip in his head, but the three places she tried, the drip refused to work.  Eventually a doctor from the emergency rooms was able to place a drip in his knee.  But the moment he let go, the drip would stop flowing and Zaan was waking up from the sedation.

During this time I was standing there and I knew that I had to do something.  That day was the hardest I’ve ever prayed.  But I felt guilty for praying to the Lord to save my baby.  So I just prayed and asked Him to do what he thought was right.  The feeling of calm that came over me, kept me through that whole day.

The emergency room doctor stood there for a quarter of an hour waiting for the anaesthetist to arrive.  The anaesthetist put a direct line into his main artery with an arterial line in his arm.  Finally Zaan was stabilised on the ventilator.

The next day while we were visiting Zaan, his colour turned all splotchy. The nurse did a blood gas panel and immediately called a doctor. Again we stood out of the way watching the doctors struggling to save Zaan’s life.

Zaan was bagged again with adrenaline. It was obvious that every time he was bagged his lungs were taking strain. At the end of this crisis Zaan had only 20% lung function and his oxygen level was at 47 when normal is above 90.  He had made it through another day.  The next day when I went to visit him, Zaan was lying on his stomach.  The nurses explained that it is easier to breath in the prone position and that helped Zaan during this time.  His nappies were being put on back to front, but he was so floppy that it really didn’t make much of a difference.

The next few days Zaan slowly but surely started getting better.  First his saturation got better, then they started weaning him of the ventilator.  On Monday his saturation was above 50% and by Saturday 29^th of March they could start the weaning.  During this time he had a driplike bottle on that was prepared with very high fat content isotrope.  It flowed through a tube into his stomach.  The preparation of this was done so precisely that I had to ask exactly what it was.  The nurse explained that because of the high fat and sugar content it could easily pickup a bug and that’s why it was prepared and handled in a theatre type setting.

By the next Wednesday he was off the ventilator. On Thursday 3^rd of April Zaan had been placed under the oxygen box again.  For the first time in two weeks I could hold my baby again.  Friday he had nasal cannules on again and for the first time he laughed at me while I was playing with him.

He was looking a lot better, but he was so thin.  On Saturday 5^th of April, he managed to eat 5 spoons of porridge, something that I had been unable to get him to do before he got sick.  He could drink his whole bottle and he was back on Infantrini to help him gain weight.  On Monday he had been moved to one of the isolation rooms.  He was very unhappy when I had to lay him down again.  I had to go back to work and couldn’t hold him for longer. He was getting tired of just lying there.

On Tuesday the 8th of April when I went to visit Zaan I took his car seat and bumbo chair with.  The nurses told me to take the Bumbo chair home, since they had some there and would put him in it.  Zaan was doing so well that the doctor started talking about discharging him before he picked up another virus.  He was very tired that day and quickly fell asleep in my arms after he had his bottle.  We arranged for take-home oxygen to be delivered the next morning.

The last picture taken of Zaan

Chapter 12

Life after the surgery

Zaan was doing so well after he came home.  We saw the doctor again on Thursday, 29 November 2007 for a follow up visit after his operation.  She was so happy with his recovery that she decided to only see him again on the 7^th of January.  She told me to stop all the medication except for one that I had to stop at the end of December.  To still let him sleep with the oximeter on, but that I could switch off all the machines when he was awake.

It was such a freeing time.  Zaan was drinking his bottles and there was no need to schedule him anymore.  I could feed on demand like I did with all my other kids.  For the first time I could enjoy Zaan as my little baby instead of managing him as his nurse.  For the first time I could spend time with my baby and just love him.  After all those hateful thoughts and feelings I had for him, I finally realised that I loved him as much as I loved the others.  It had just taken time and close contact to get used to the idea.

Zaan was growing stronger everyday.  He started smiling and catching up with his milestones.

Then on the 23^rd of December I decided to try NAN again.  Wow, hubby was upset with me for doing it just before Christmas.  To tell you the truth I hadn’t even thought of how close Christmas was.  I had given Zaan two cans of Isomil and the doctor’s orders were to try him on NAN after one.  So I gave him a bottle of NAN.  We had exactly the same result as before.  He puckered up his lips, stuck out his tongue and vomited up every single millilitre he’d drunk.  And of course that wasn’t where it ended.  Again he had diarrhea.  This close to Christmas we were stuck with the relieve paediatrician again, who told us to have him admitted to XXXXXXX Hospital.

Unfortunately this doctor was one of the old school who didn’t believe that a mother without medical training could have any idea of what ails her child.  He decided that Zaan had gastro and treated him accordingly. That meant more antibiotics and a hospital stay for just over a week, including Christmas.  The paediatric ward in XXXXXXX Hospital was almost empty and working on skeleton staff. Which did make visiting with the kids a lot easier.

One very memorable morning the whole lot of us went to visit Zaan.  As we walked into his room, the nurse was sitting next to his bed with her back to him. He was inside his carseat and sweaty. The air conditioning was switched off, the curtains and windows closed.  So that she could watch her soapie on the TV.  In the middle of one of the hottest Decembers. My husband took one look, opened the curtains and windows, changed the TV channel to cricket and told Zaan that it was better to watch cricket than soapies.  I had already picked him up out of the hot carseat. When I told the nurse that he was over heated from the car seat I was told that he was tired of lying down.

Just before new year, we got so fed up with the hospital service and this doctor’s attitude that we requested a second opinion.  The doctor we managed to get hold of, told us that she was unable to look at Zaan in XXXXXXX hospital, but if we took him out, she would be happy to look at him at her own practice.

Suddenly the doctor treating Zaan, decided that he was well enough to discharge him and Zaan came home.  When I discussed everything that happened with the cardiologist when Zaan went for his follow up visit, she confirmed that it was the NAN that had affected him.  His latest hospital stay meant that he was allergic to baby formula made from cow milk and had to have soya based formula.

She was very impressed with his stats and only wanted to see him again in six months time.  He still had a slight leak in his heart, but she was happy that it would disappear over time.  He was off all medication and oxygen now.  His next check up scheduled for June.

Belated christmas gifts for Zaan

Chapter 11

Open heart surgery

Tuesday morning we left home at 06:00.  We dropped off Rivan at my in laws and left for the hospital with Tristan.  07:00 we were at his bed.  We spoke to the surgeon briefly, spoke to the anaesthesiologist more thoroughly.  Shortly after that we walked with him to the theater.  We were allowed to go in with him to where they were going to start the drip for the anaesthesia.  They were hooking him up to various monitors and we were allowed to kiss him goodbye.  Then we were asked to please wait outside.

We were given a booklet, made by a mother whose son had undergone the same operation, with photographs of what to expect afterwards. We were also told not to get a fright if our baby was blue. The procedure was explained by the cardiologist, as well as the recovery.

That was one of the hardest moments for me.  I knew my baby was going in for a very serious operation and I couldn’t be there with him.  He had to go through this on his own.  It really didn’t matter that he would not even be aware that I wasn’t there.  Zaan was two and a half months old and weighed 3.5kg the day before when he was admitted.  Not the smallest baby this operation was ever done on, but one of the smallest.  That added to the fact that he was oxygen dependent, meant that there was a greater chance of something going wrong during surgery.  It also meant that his recovery period would be longer than normal.  And there was also the fact that with an operation of this magnitude the possibility that he might not even survive the operation was greater.

The waiting room opposite the theater was a small little room.  I’d guess about two by four meters in total.  There were only four chairs inside.  I couldn’t enter it.  Claustrophobia got hold of me just at the thought of spending the next 5 hours inside that little room.  We left the hospital.

Some people might crucify us for leaving our baby boy in theater at the hospital and going to a nearby shopping centre.  We walked around Menlyn for hours window shopping.  Finally I started getting anxious and we went back.  We got back at the hospital fifteen minutes after Zaan had been wheeled back into the PICU.

Almost immediately I thought that I should have taken my camera with.  Zaan was blue.  Swollen to almost double his normal size, his head, body and limbs were all a startling blue.  The colour of a deep bruise.  As we walked in, the matron stopped us and told us that there was a slight complication with his operation.  With the bypass he had swollen a lot and the surgeon was unable to close the wound.  There was a piece of artificial skin stitched over his open chest.

You could feel the air buzz, while two dedicated nurses were setting up various medications on the machines.  His stats were monitored and written up every fifteen minutes.  The biggest machine was standing next to the bed, the N₂O ventilator.  I’m still not sure exactly what the N₂O gas does that is different.  All I know is that it was crucial for the first few days.  Then there were the monitoring machines that measured his heart rate, his temperature and his oxygen levels.  He had an external pacemaker setup, ready to use if his heart needed it.  There were the machines that were giving him his medication.  These machines all had built in alarms for when the medication was finished.  The medicine was loaded in giant syringes that were fitted into these machines that slowly pushed the medicine via tube that fed into his main artery.  Then there was the catheter and the arterial line in his arm.

By Friday the swelling had finally gone down enough for the surgeon to attempt closing his chest.  He didn’t want to move Zaan and the “small” operation was done in the PICU.  We arrived just after the surgeon had left.  Zaan was obviously in a deeper sleep than before and his whole body was that dreadful yellow of the iodine they used.

Finally on Monday the 29^th of October 2007 Zaan was starting to look better.  Even though he was still on the ventilator, he was now allowed to wake up normally.  He was getting feeds via feeding tube again and slowly weaned from the ventilator.  By Friday the 2^nd of November he was taken off the ventilator.  Instead of the ventilation tube stuck in his nose, he had a clear plastic box covering his head.  He was starting to move around and could turn his head from side to side if he wanted to.  Both the surgeon and the cardiologist were extremely happy that he was recovering so well.

During his third week in hospital he picked up a stomach bug and had to be placed on a drip again.  The cardiologist preferred placing the drip in the head and joked with Tristan about how nice the veins on his head were for drip placement.

During the very first stay when Zaan was stabilised I used to take Tristan to Zaan for a visit everyday.  The PICU staff allowed that, but warned us that once Zaan’s operation was done, I would not be able to do that anymore.  It was just too risky for Zaan’s recovery.  During his second stay after the operation, I’d take Tristan with me to the PICU, but park his pram just inside the door.  If he was awake, the nurses loved to play with him in their tea room.  He had all the nurses wrapped around his little finger.  I think the fact that he could give a belly laugh at the age of 2 and a half months had quite a bit to do with that.  Plus he was such a happy fellow that never really complained, with smiles for everyone.

Day 27 in hospital, 17 November, and Zaan looked like he might be coming home soon.  The prediction originally was 30 to 40 days in hospital for recovery.  He still had fluid around his heart and was almost off the oxygen.  As soon as the fluid around his heart had been reduced and his blood work showed no infection, he’d be allowed to go home.  Most of his feeds were still via feeding tube as he struggled drinking from a bottle.

But on Day 28 he was back on a drip for an infection.  Finally on Thursday the 22^nd of November Zaan came home late the afternoon.  We had a new medicine routine, new instructions to follow and after care that had to be done.  Back home, I gave Zaan NAN for his first feed.  Within minutes he vomited out all the milk he’d received.  Then the diarrhoea started.  At one point I switched to water with a bit of rehydrate treatment added.  I was worried that he would dehydrate.  It was obvious from his nappies that the water and everything he was taking in was flowing straight through his little body.   At least the vomiting stopped once I stopped giving him milk.  We carried on through the night with hardly any sleep.  Very early the next morning I phoned the doctor while I was driving back to the hospital with him.

At the hospital the doctor took a stool sample, declared him 10% dehydrated and put a new drip on him.  She was particularly interested in my description of his stool being an almost blue white colour.  Her prognosis was that Zaan had “oorgroei bakterie” in his stomach and to put him on soya milk for a while.  He was released again the next morning.  New instructions were to feed him Isomil milk until one can of it was finished, then to try NAN again.

Chapter 10