Zem's progress

Zem's been having a few fevers since we came home. Yesterday (Tuesday) he fevered all afternoon. Today he was fine in the morning and then fevered in the afternoon again. The doctor has told us that we should try to keep him home if we can. We have some antibiotics here at home with us too. We have a GP appointment tomorrow to get some more antibiotics as the stuff that we have will run out tomorrow. Hopefully, he will have progressively better days.
Zem played a game of Snap (using Uno cards) with us this evening. We used the game to teach him the basic colours. He did begin to place his own cards on to the card pile, which we thought was pretty clever.

The switch-on date has been postponed until January 13 and 14.
"Five weeks after the operation!" You say.
Yes, but usually the wait is only two weeks (it seems that nothing is normal for us.)

The following are a list of common questions that we have been asked, along with the common answers that we have given.

Q. "Why is it taking so long?"
A. Firstly because SCIC (Sydney Cochlear Implant Centre) closes down for Christmas...(how dare they!)
Secondly, the Med-El representatives are 'unavailable' until a week after everyone else goes back to work (I reckon they are snow-skiing in Austria).

Q. "Will he be able to hear?"
A. Short answer: Yes.
Long answer: We don't know how much, and we won't know for about a year (until he should be starting to say words). The specialists calculate his 'hearing age' from the date of his switch-on.

Q. "If he can hear, will he catch up to other kids?"
A. Yes. If all goes as hoped, he will catch up to the other kids by the age of five.

Q. "Will he hear like other children?"
A. He will always need to concentrate more in order to listen, and at best, what someone hears through an implant has been described as "hearing under water". Also, he will find it difficult to hear in large groups. He will probably only be able to concentrate on listening to one thing at a time.

Q. "How long will he need to see specialists?"
A. He will need to see someone from the SCIC once a week for a year. After that, he will need to see them every 3 months until he is 5. After that, every six months to a year until he is 21, and then once a year for the rest of his days. (He will need additional schooling until he is 5).

If you have any other questions, please write them as part of your comments and we will answer them on upcoming entries.

Home at last!

We were discharged at 9am today, and after 8 days of sterile environment, Zem couldn't wait to get out and do what he does best...

Going Home

Again, let me sum up the last two days before telling you our plans.

Sunday
The make-shift connection had held through the night and was perhaps even more robust than the previous connection because Zem cannot get to it as easily. I spent the morning at Adrian's place, Adrian did some work, and Sharlene looked after Zem at the hospital. Around 10am Shar had asked for a volunteer to come look after Zem for a while while we all took off to the markets. It was a quick trip, but we did come back with lots of fruit. We got back to hospital a little after 12 and lunched there. Sharlene then went home with Adrian while I took my shift with the boy.
Everything was good until evening, when it was my turn to stay overnight. About midnight, Zem started to cry and whine. He was getting very frustrated with the IV in his foot and the tangle of tubes from the lumbar drain. His foot was particularly tender when anyone touched it. Eventually, a couple of nurses decided to take the IV out and unwrap his foot. This made the situation much more bearable. But Zem was supposed to remain on antibiotics, and he was supposed to get them via IV because of the lumbar drain.

Monday
Our doctors didn't arrive until afternoon, so Shar and I spent the majority of the day watching movies and talking to other parents in the ward. Some of the things we have seen and discussed make us realise how lucky we are to have Zem without any other difficulties besides his hearing. Cathy took off the paper band aid on Zem's left ear and gave instructions for Zem to have his lumbar drain removed. This was done by the nurses a little after. Zem is now tube and needle free! If all continues well, we will be going home tomorrow - after one week and one day at the hospital one full week longer than we expected or intended (or packed for). Still, I hope that our attitude towards all the mishaps and setbacks has been a witness for God. May he bless us as we bring Zemiel home.
Once again, we express our gratitude for the multitude of prayers and wishes that have been sent skyward on our behalf. Sharlene and I believe that we have only remained upbeat over this past week because of your help. Thank you.

Finally, to Adrian...who despite having some serious deadlines for work, has dedicated significant portions of time both morning and evening to Sharlene and myself. You are a champ and we love ya (and so does Zem).
Fingers crossed all goes well for bringing Zem home tomorrow.
Check up next Monday to get the right ear looked at. (Still some swelling from Thursday night). Below are a few pictures from today. The first one is a look behind Zem's left ear after the band-aid had been removed.

Hiccups!

A lot has happened over the past few days, so I will try to sum up the events as neatly as possible. Perhaps the best way will be to give a day by day account of what has transpired. At last note, Zem was due to get looked at again because he was leaking Cerebral Spinal Fluid (CSF) from his nose. This is not a good thing. The leak had not seemed to get better but rather to get worse...

Wednesday:
We were told that Zem's second surgery was booked for 6pm. It would be only to explore his right ear to see if the 'plug' of muscle was leaking. The leak was getting worse as time went by. Zem woke up from his sleeps with large wet patches in his bedding. We fed Zemmy up that morning and then he fasted from lunchtime until evening. However the surgery was postponed. Apparently it was an unusually busy week and there were many emergencies that needed surgery. Eventually, we were told to give Zem food again. We were moved from the 23hr ward (which had been cleared of people twice since we had been there) into a room of our own. Sharlene rented a room in the hospital in order to get some decent sleep and I stayed with Zem. The only real hiccup in all of this was that Zem's IV was taken out that afternoon (expecting to be put back in during surgery) but because the surgery never happened, it had to be put in again. One fellow tried at 9pm to put it in...and after two tries, couldn't find a vein. Another lady tried at 1am...but after a couple of tries, couldn't find a vein. Finally another fellow tried at 4am and got it on his second try. So poor Zem must have been feeling like a pin cushion. The IV went into his foot, so he was not allowed to stand anymore because standing might cause irritation to the vein.

This is Zemiel shortly after the bandage was taken off on Tuesday.




This is Zemiel on Wednesday - his lungs had collapsed a bit during Monday's operation and he still required extra oxygen.


Thursday:
Sharlene had a good night sleep. Zem woke up well too...which is fortunate considering his not-so-nice evening. He was back to his cheerful, bubbly self for most of the day. The evening, however, was full of hiccups. Again, we were promised that Zem would go in for surgery at 6pm. We fed Zem a big breakfast and an early lunch and he fasted from midday onwards. About 4pm we were told that the surgery was postponed until 9pm. At 9pm we were told that the surgery was postponed until midnight. Apparently, an orthopedics operation attempted to take our midnight spot too - but our surgeon (Cathy) was on the phone advocating for ours to be done. She must have won, because at midnight Zem went in for his second surgery to see why CSF was leaking from his nose. Beforehand, we gave permission for a lumber drain to be used only if necessary. The surgery went until 3:30am and the plug was re-sealed, but not without difficulty as the CSF continued to gush out. The pressure of the fluid behind the plug was too much for it to have a good chance of healing properly, so she decided to put in a lumber drain to reduce the pressure of the CSF on the plug while it was healing. We left recovery about 4am and went back to the ward. I rented the same room as Sharlene did the night before so I could grab a few hours shut eye. Sharlene and Zem were moved from the surgical ward up to the neurosurgical ward. (The nurses there had more experience with lumber drains).

This is Zemiel on Thursday




Friday:
No real hiccups today - other than trying to convince Zem that lying down was fun. To keep his head and back at the same height was very difficult. It is hard to tell a 15 month old who doesn't feel sick, to not sit, kneel, or stand. Through all this, Adrian continued to visit us and Zem learned to sign 'A'. He only really signs it when Adrian is around, so Sharlene and I are happy that Zem recognizes him and signs his name. I sent Sharlene to sleep at Adrian's place so she could sleep properly. She was very tired and easily stressed out.

This is Zemiel on Friday



Sabbath
Sharlene and Adrian went to church today. They returned to the hospital about 1:30pm and brought lunch with them, which was a God-send as I was running out of nice food. Gemma came for lunch also. Zem had been better at staying down low but still rolled a lot and had twisted and knotted the IV and the lumber drain tubes several times. So far no CSF had leaked from the nose and the wound in his back was healing. I planned to drive home to get some clean clothes and check our animals. But the hiccup came around evening we noticed that something was leaking. We discovered that the small tube that drained fluid from Zem's back had pulled out from another small connection piece. The tube remained in his back but CSF was again leaking out. Various nurses and doctors scrambled around the hospital looking for a connection piece that matched the one we had already but none could be found. It seems these systems come complete and don't have replaceable parts. Sharlene and I actually felt a part of everything that happened, as it was done in Zem's cot. Shar and I remember the neurosurgery registrar saying something like: "we need a couple of those ice-cream sticks, some super glue and some really good sticky tape."

In any case, the small tube was clamped and a temporary system was jerry-rigged up to keep the flow of CSF happening - at least until Cathy could make a decision about whether to redo the lumber drain or take it out completely. During the 4 hours that the tube had been clamped, we noticed that no CSF had run from Zem's nose. This is great news because the pressure would have been building up behind the plug during that time. It means that the plug may have healed enough to withstand that pressure. I didn't go home as planned. About 10:30pm I left to go to Adrian's house to sleep.

This is Zemiel on Sabbath



This is the small tube and the connector that has caused yet another hiccup.

I can only guess at what Sunday will bring...

Another operation?!?!

Zem has had a pretty tough day. He had a high temp and heart rate earlier in the day, which resulted in him being placed on a drip. He has antibiotics being poured into his body. For the most of today, he has been quite bubbly - signing, talking and finally getting some appetite back.
In yesterday's operation, some Cerebral Spinal Fluid (CSF) flowed out on the right ear - which was supposedly fixed. However, Zem still has some fluid leaking from his nose when he sits up straight. (something that we expected to happen for a couple of days).

CSF coming from Zem's nose is not a good thing however, it increases his chance of meningitis which is dangerous enough on its own.

But, just in case that the amount of fluid coming out doesn't fix itself, he has been booked in for another operation tomorrow evening. It is a bit unexpected and is placing more stress on an already stressful week. But God knows what each of us can deal with...and there will be some purpose to this I am sure.

Still, I hope that the leak has fixed itself by morning so that there will be no need for the extra intrusion. Please continue to pray for us. It allows God to work overtly in our lives. Our gratitude goes to all of you.

Zemiel received his cochlear implants today. In her debrief, the surgeon told us that the operation was a success. The 'Stealth' technology that they had hoped to use to great benefit, failed due to unexplained inaccuracy. However, we have been told that all the implanted electrodes are firing. Zem did have some cerebral fluid flow out of his right ear, however, we are confident that it will not continue to pose a problem. We spent most of the day in the hospital. Sharlene has spent the night with Zem in the hospital. He came out of the general anesthetic pretty well. The result so far is better than we expected. We truly believe that God has poured his blessings into our lives. Here are a few pics of Zem just after the op.

Zemmy's Operation

We will be taking Zemiel to hospital early Monday morning. He will be receiving his cochlear implants. The process will involve him getting a CT scan and then taken into the theatre where both devices will be implanted. The total procedure is expected to take from six to eight hours. Zem is expected to stay in the hospital overnight for recovery. Sharlene will stay with him on Monday night. Hopefully, he will be well enough to be taken home on Tuesday. Thank you for your thoughts and prayers for his safety and the surgery's success.

These are some of the last photos of our family before the operation.