Friday, January 10, 2014

From my heart: A long hospital stay

We had an unpleasant start to 2014 with Asher having a seizure at 7:20 on Wednesday morning. It was rather disappointing to have her restart with these. There was no bump on the head to cause this one. The seizure itself lasted the normal 12 minutes but because it was so much later perhaps and she was due to wake up, she did not sleep after it. So for the first time I got to see Todd's Paralysis where her left side (where the jerking started this time) was paralysed for about an hour. We had not known anything about it before and so we were thrilled (and I was in tears) when within an hour or so she started using her left hand and then was able to crawl. It can last up to 36 hours (now that I know more about it) so it was a blessing that it was for such a short period. It was rather emotional seeing her awake and just unable to use that side. It must have been so strange for her, so I am glad she was not distressed by it. We don't know if this is the first time it has happened as with most of the others she has had a good sleep afterwards.
She bounced back quickly as she always has done and even Nana was surprised to see her that evening when we chatted on Skype as she could see for herself that she really was back to her "normal" busy self.

Then just 4 days later, on Sunday morning, she had another seizure at around 6:30am. It was very similar to her others and she seemed fine after a little nap with me. At 9am she had a little "episode" where she was blank and not responding to us. It only lasted a couple of minutes and as we had made plans to visit a church in Amberley we decided to stick to the plan as she normally has a very uneventful day after a seizure. Today was not going to be normal.
Through the service she had two more little seizures (looking back I realize they were seizures - just different to her normal ones). She had played a while and been fine and then fallen asleep in my arms. The first one she just woke up and I could see in her eyes that something was happening. Her breathing was not great either but then she got over it quickly and went back to sleep. The 2nd one was more serious and I called Brendon over. We had her on the floor in recovery position and were trying to get her to take good breaths (blowing into her face to try and get her to take a deeper breath). It again did not last long and she went back to sleep. A friend was dishing up lunch for me and I was chatting to her and some of the other mothers about Asher's epilepsy and I was rather emotional by this stage and it was so good to have these ladies to chat to. Just as I was about to sit down to eat, Asher started having a much bigger seizure. I quickly got to the play area to put her on the carpet in recovery position and it was very traumatic for me to see her in a total Tonic seizure (her whole body stiff). I immediately got her seizure medication out and gave her a dose. I was not going to even wait 5 minutes (and it did not last that long) as it had only been about 45 minutes from the previous one and I knew a little bit about Status Epilepticus where the body just gets too used to a seizure state and can get into a non-stop seizure. At the same time Brendon called the ambulance.
Her breathing was not great through the seizure and she went a bit pale (not grey / blue yet). Thankfully it was really short and she was quickly in a quiet, postictal state, breathing steadily. I knew I would be heading off with Asher so I ate my lunch while we waited for the ambulance to come. It was such a blessing for me to have a few ladies come over and chat and encourage me. The Pastor also came over and we chatted about a few things and I shared my fear about having to start Asher on Anti-Epileptic Drugs (AEDs). I did not have peace about it and asked for their prayers for wisdom to know the right thing to do for Asher. Just before we left the Pastor prayed for me and I really appreciated his understanding of my longing for that wisdom from the Lord.
The seriousness of Asher's morning was emphasised for me when the ambulance staff called to chat about things with the hospital. They ended up getting an ambulance to come and meet us on our way in (they were even travelling with their siren on to get to us asap - something that rarely happens here). They wanted to have stronger medication available if Asher had another seizure (the same medication that I gave her but in an injectable form and stronger). So we met them on the road and ended up just switching ambulances.
We arrived and headed to Children's Acute Assessment where we have been before. I chatted to the doctor about the possibility of starting medication, knowing that it was something we seriously needed to consider. She said Brendon and I could chat about it and make a decision within the next couple of days. I appreciated her understanding of my concerns with the AEDs and we were starting to make plans to head home (I had even phoned Brendon to tell him he could come and pick us up).
Those plans all changed when she had another seizure at around 5pm. Thankfully Brendon was only minutes from home when I got hold of him to change plans. The doctor suggested getting a quick acting AED into Asher through a drip which I agreed to. She had her line put in and the drip was planned for just after 7pm. Before she managed to get the drip however - she had yet another seizure. We moved to the Paediatric High Dependency Unit and she got the medication. Within minutes she had yet another bringing the total up to 8 for the day. It was great having the nursing staff there and ready as soon as I noticed one starting. I could ring the bell and they quickly came and helped get her oxygen and give me a bit of comfort and support. They were all relatively short compared to her "normal" morning ones, ranging between 90 seconds and 3 minutes. The evening ones were more of a concern as she started going "grey" quite quickly. It was a huge blessing to have the oxygen right there and get her saturation levels back up so quickly. What a blessing we had not headed home.
This above photo was taken at 10pm, sleeping peacefully with all her monitors on. She had a heart monitor which also kept track of her breathing (3 little stickers on her chest) as well as an oxygen saturation monitor (on her big toe). For a little while she also had a blood pressure cuff on so that they could check that her blood pressure had not dropped from the drip. God graciously allowed her to have a totally uneventful night and allowed me to get good rest when I did sleep.
Half way through the night I had to move from the bed I was using onto a lazy boy as an extra patient came in and needed that bed (I knew this was what might have to happen but wanted to use the bed while it was available).
Before going to bed I was able to chat to Brendon and we agreed that we had to get Asher started on the long term AEDs. It was really helpful having the doctor chatting to me about it all again in the evening and saying that she understood it was a matter of deciding the "lesser of two evils". It was helpful having her acknowledge that the medication was not our first choice, but with the severity of the pattern of Asher's seizures, something more drastic needed to be considered. She did not make me feel pushed and I think that was just what I needed. That little bit of space (and loads of prayer) to get me to have peace about that decision. The Lord had answered my prayer for wisdom from Him to be confident in what decision to make. He is so faithful and I praise and thank Him for his compassion, care and guidance through this trial.

Unfortunately we did not have an uneventful Monday with Asher having 3 more seizures. The first at 10am at which time they decided to give her an extra bit of the medication she got through the drip the night before. It was again very uncomfortable for her when the drip was put up and again she had another seizure soon after the medication was finished (around midday). She also had another EEG before lunch. She was not happy when they put the cap on (as they have to scratch the head a bit to make sure the connections are good) but once it was on I sang to her and she fell asleep for most of test. She just woke for the flickering lights bit at the end.
Things were nice and quiet for a few hours after lunch and then she had another seizure at 5pm. After this seizure she had a bit of a raised temperature and so questions started being asked about where that was coming from and if the fever was in any way related to the cause of the seizures.
It was lovely to have our homoeopath, Christine, visit us on Monday evening. She brought me a charger for my phone (which had gone flat on Sunday already) as well as sushi and wonderful encouragement and friendship. We did get to chat about Asher but also about other things and just enjoy a nice visit. It was a real blessing to me.
Thankfully I had a bed for the whole night and it was a nice and quiet night in the ward. The previous night the girl with pneumonia had struggled terribly, so I was thankful she also had such a good night.

She slept really late on Tuesday morning. I took this photo at 8am. When she woke she did have a good breakfast which I was so pleased about. She had not had any food since Sunday morning. I am glad she is still breastfed as I could just feed her more and know that she was getting good "food" in even if she was not eating.
She is very popular with the nurses and they all just love her cute bottoms up sleeping position.
It was great to have Holly pop in for a quick visit and also bring me a bag of things from home. It was lovely to get to shower and put fresh clean clothes on.
Tuesday also saw Asher having blood tests done as well as a lumbar puncture. The main reason for the lumbar puncture was to make sure there was no infection on her brain or in her spinal fluid (causing the fever). At the same time they could then get a whole range of other tests done to rule out any other obscure reasons for the seizures. These tests had been mentioned to me before and so this was an opportunity to just get it all done in one.
The decision was made to slightly sedate Asher for the lumbar puncture so that she would be nice and still. Not putting her out fully as she had already gotten so much put into her little body. So they gave her some Midazolam - the same medication I have given her during seizures. It was supposed to help relax her and allow her to not remember anything of the test. It had the opposite effect though and she ended up a bit high. It was rather funny as she crawled around the bed, talking to everyone and pointing to things. She had not spoken since Sunday morning, so it was lovely to hear her voice and so very funny to see her on "cloud 9". The nurses and doctors were all patiently waiting for it to make her quiet but we all ended up laughing at her. The blessing in all of that was that it was good for me to laugh.
They had to however end up giving her another sedative which thankfully worked very well and she slept through the procedure and they were able to set up another line and draw blood.
He had a horrible evening though. Who knows if it was the medication or the procedure - she was just feeling horrible. From 6 till after 9 I just kept trying to comfort her. She would listen to my singing and fall asleep on my chest, only to wake crying and distressed within minutes. Eventually her temperature went up and I decided paracetamol was probably a good idea. That helped with her pain and she had a good nights sleep. It took me a few more hours to get to sleep though as a new young patient and his little sister sat chatting to well after 11pm. I was again thankful for a bed though and could at least get good rest.

Wednesday was wonderful. Asher was able to stay up for 2 hours (previously she would not manage more than 15 minutes and she would be exhausted and sleep again). She had a good breakfast and enjoyed playing with the toys in her cot. These little blocks were a favourite as they had little bells in them that would ring when she knocked them around. I even got a small smile which was just wonderful.
On Tuesday after lunch I had managed to get a hair cut. I had left my cell number but when I got back she was awake and in a lady's arms. She had woken on her own and was happily just enjoying a cuddle - so they had not worried about calling me. It had only been 10 minutes. The lady works at the Activity Room and helps wherever she can. So after meeting Asher she went off and came back with all these lovely things for her cot. It was so nice for her to have colour around her and soft toys to play with.
That crochet blanket was given to her at the CAA ward on Sunday for her to keep. Ladies make them and donate them for the children. It was so nice for her to have something special and colourful that stayed with her as we moved from ward to ward. I could also see the improvement in Asher as she started moving around her bed before finding the right spot to nest in for her nap.
Asher's blood results showed a possible viral infection as the likely cause of the fever, but as she was doing so much better and seizure free for almost 2 days, she was able to move out of HDU in afternoon.
The nurses had waited till a room with a bed became available in the general ward (rather than a fold out chair / bed) as they wanted to make sure I could get good rest at night. I really appreciated their kindness and concern.
They did not have as many people leaving as they thought and so I had a choice of two. A window and a fold out chair, or a bed but no window. I chose the bed. I had to smile when the doctor visited and said "I see you have the cupboard room". I assured him the bed was my first choice. We can always walk to get a view. :-)
Christine came for another visit in the evening and brought me loads of lovely treats. Asher was a bit agitated and Christine had some remedies on hand so we gave her some Chamomilla which helped calm her down and she had a good sleep. I then had a wonderful visit with Christine. I had been rather emotional with our move to this ward in the afternoon. The nurses had been really encouraging though saying that often when there has been an improvement the parents then get to relax a little and you finally feel a bit of the strain you have been under. The nurse gave me a box of tissues and I had a good cry while Asher napped. Then I got a bit of a nap myself. So the timing of Christine's visit was perfect. I need to just visit with a friend. Chat about a whole lot of different things and enjoy a good laugh.

Thursday saw yet more improvements. It was Asher's first day back to normal routine even though half of her afternoon nap was on my chest. We managed short visits to the Activity room (due to most of their open hours being during her nap times) and even though there was still no sparkle in her eye, it was a huge blessing to just see her playing.
The social worker who I had been chatting with over the week had asked if the family would want to stay over at Ronald MacDonald house for a night and I knew that would just be loads of extra work for Brendon. It gave me the idea though of asking if we could at least just use their facilities for dinner. The social worker called and they said they were happy for us to come and eat our dinner there.
Right from the time they arrived it was a blessing for Asher. Just to see more faces that she knew and get that extra bit of love. Hezekiah wanted to give her a hug straight away. I never realized how much he would miss her.
After some food the children headed off to play. Again Hezekiah was the one that wanted to be with Asher and asked me to put her in the car with him.
A bit later he asked me to put Asher into a car as he wanted to push her around. What a sweet and loving big brother. And what a blessing to see her enjoying it (holding on and steering).
It was wonderful for all of us to get this time together. The hardest thing for me was hugging Brendon goodbye. I did not want to let go.
Once we got back to the room and had Asher on the potty, I noticed she had a rash starting on her abdomen and head. The nurses organized for a doctor to pop down and check her out. The rash was not a concern but she noticed that she had a very swollen lymph node in her neck as well as a red throat. So the fever from a couple of days ago finally revealed where it was coming from. Poor Asher felt horrible that evening and eventually paracetamol was the help that gave her a break from the pain so she could get some sleep. Once she was asleep she had another good nights rest which I was very thankful for every night.
One thing that did help through the earlier part of the evening (8:40pm) was her JAM (Jesus And Me) DVD that Brendon had brought from home. It gave her something enjoyable to distract her from her discomfort. And it gave me a much needed break from holding and comforting her through those times of crying.

On Friday morning she slept in again (as expected when you only go to bed after 10pm) and did seem to be feeling better although I think her throat was still sore as she was not really interested in eating. Again it was such a blessing that she got so much breast-milk in through the day. She had a good morning nap and almost laughed for me which brought me so much joy. When we visited the Activity room they said they can see the improvement every time she comes. It was lovely to see her start exploring the room and interacting more with other people.
She even laughed for me which made my heart so glad.
Another item Brendon had brought through on Thursday was her walking ring. I had sent the camera home with them and took these photos on the iPad. It's a bit bulky to carry around - so didn't get a photo of her which is a pity. She just loved walking up and down the corridors - holding her hand out to people in greeting. With most of our home carpeted she has not really been able to use the walking ring to it's full potential. She made up for it in the 24 hours use in hospital though and learnt so quickly how to get going with it.
Blood tests again after lunch. I used JAM again to keep her distracted while we took her line out and used that hole to collect some blood (they had planned to make a prick on her heel - so this was a much better option). I took this photo specifically to show Hannah what it looked like under the bandage.
One of the doctors was kind enough to let me know that if the blood results were good they would be happy for us to head home. Up till this point we really had no idea how long they wanted us to stay. She was having a change of medication on Saturday and I was not sure if they wanted to keep her until that had happened. We got blood results in the afternoon and were very pleased to hear that her white cell count had improved (although still low) so we could head home.
Brendon had already gotten dinner planned (I was thankful there were so many meals in the freezer that he could use) so he got them all fed and headed in - leaving the children at friends on the way. It was nice for Brendon to have a quiet drive in and it was lovely for us to be able to chat on the way home. The children had a great visit which was a real blessing too.

Looking back over the week I thank and praise God for all His love, care, provision, guidance and above all peace. Sunday had started with me feeling very emotional and unsure of what we needed to do for Asher but He made it all so clear and gave me peace with each decision.
There were again so many people who showed such kindness and I thank the Lord for them.
I thank the Lord that I could even have a peace about how long we would stay in hospital. Yes, I wanted to get home, but I also knew we would be there for every day that He had planned, and that was a good plan. Firstly for Asher's safety (which was shown on Sunday evening as we almost headed home) but also for any spiritual plans that God may have had for us. I was thankful for each person I got to meet and each conversation I got to have. Especially when I could talk about God's wonderful provision and guidance and give Him the glory for His goodness and faithfulness through this hard time. I thank Him for the opportunity to be a light for Him - as it is only by His grace that I could get through the week.

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