From my heart: Another medical week

I remembered to get a photo of her in her
walking ring this time.

On Sunday evening (19th) just as I was going to give Asher her medicine, she had an absence seizure. It only lasted 2 to 3 minutes but her breathing was again not great. We called the ambulance as that was what had been agreed would be our handling of any further seizures. Before they even arrived I got in contact with the hospital and got some advice from them on what to do. We all agreed that she was stable and fine, so we would wait and see what the night would bring. The ambulance staff assured us too that it was no problem for them to head over to us again if needed. If she had another seizure or if we felt unsure about how she was doing, we would head in to the hospital.
The night went well but at 5:30am (just as Brendon was going to leave for work) she had another seizure. I had decided to have her video monitor receptor (if that makes sense) next to my bed. That way, if I heard anything funny during the night, I could just switch the receptor on and have a look at her (even though the room is dark). I did check her whenever I heard movement through the night and in this way managed to not be stressed and get good sleep in between. At 5:30 I did what I had done many times through the night but saw her sitting up and I could see that she was rigid. I quickly put the light on and got to her. Yes, she was having a tonic seizure. Again it only lasted between 2 and 3 minutes but again - her breathing was not great. I managed to quickly call Brendon on his cell so that he could come in (he was already outside and just about to leave) and then we called the ambulance. The first response was with us quickly and the ambulance had been requested (although not urgent at this stage - just wanting to get in when we could). At 6am with the paramedic next to her, she had about a 3 minute grand mal (colic tonic) seizure. The paramedic then called the ambulance and upgraded the call to more urgent.
I was almost packed by then and so sat chatting to the paramedic as we waited. She had gotten a bit emotional after the seizure, saying that it's just not right with such little ones. She says it's fine when she sees a seizure in an older person, but really struggles with babies. She made a comment about how well I handled the seizure. I could give all praise and glory to God who is the one who gives me the peace through these times. I told her about how the bible says He gives a peace that "surpasses understanding" and I am very thankful for that. So we had a good chat. The same type of chat I would have later with another nurse as she witnessed my handling of the seizures that we would face later that day.
Thankfully Asher was fine for the next few hours. By lunch time they were even talking about us heading home and I had called Brendon so he could start making some plans. Those plans all changed when after her extra dose of meds she had another seizure (12:30). She then had another one at 1:30 and so a 2nd lot of meds were started to help break the cycle and allow her long term meds (at the new dose) to build up in her system.
We moved down to the children's ward to spend the night (just in case) and at 4:30 she had another seizure. This one the longest - at almost 4 minutes. It was a little while after this that I was a bit of a wreck. I had not made enough effort to look after myself and had not eaten well through the afternoon. So when the food trolley went right past our room without stopping, I broke. I sent a text to Brendon asking him to call me. This ended up being a blessing as I was in tears by the time he called and the nurse who called me for the phone saw that I needed some care. She held Asher while I had a quick chat to Brendon and then she organized a big plate of food for me, a jug of water (which I had been hoping for the whole afternoon and not bothered to ask for) and even made me a hot cup of milo while I waited for the meal.
It was rather frustrating for me to feel this weakness. Through all that we have been through over the last 3 weeks I had mostly been so calm and collected. It was horrible to feel so frazzled. The nurses were very reassuring and understanding saying that it was more than normal to be emotional as we had been through so much. They were all very kind and I learnt a few more lessons.
I was reminded that I am weak. I have been giving God the glory for the peace that I had been experiencing but I had taken for granted how well I have been coping physically. This was a shocking reminder for me that I do really need to care for myself too (and even a simple thing like getting enough food). It helped me to be thankful for how much the Lord has also helped me physically over the last weeks with broken sleep and all the other changes in routine.
It also helped me to be more understanding and compassionate for people when they are going through a hard time physically. It would have been such a simple thing to ask someone if I could get a bag for my dustbin and a jug of water, but because I was physically struggling, even asking for those simple things was almost too difficult for me - and the lack of having those simple things was upsetting me. Once I had had the good cry and that wall was broken down I just asked for those simple things and people were more than willing to help. So although it may seem really silly that people don't ask for things they need or speak up for themselves, it can be that they are just physically and emotionally not able to handle simple things. It was a humbling and eye opening experience for me.
It had been a very draining day for us both and so just after 8pm Asher and I were fast asleep. I pulled her cot right up to the side of my bed and so even though she was very restless through the night, I could still get good sleep, just putting my arms into the cot and holding her tummy or rubbing her back when she was upset.
We spent as much time as we could at the Activity room while we waited to see the doctor. They came while she was having her morning nap and were happy to leave her sleeping while we chatted. It was good to chat through the whole medicine plan for the week ahead and to understand a bit more about how the medicines work. The doctor said although she was disappointed to see us, she was not surprised. She communicated clearly that we want Asher on "as little medication as possible" and I was really thankful for this.
Asher's AED (Anti Epileptic Drugs) need to build up in her system. So after her first week she had an increase (as the body metabolises the meds and adjusts it stops working as well). We had not increased automatically a week later and so as her body made more adjustments, the meds were not strong enough to stop the seizures and they started up again. So we upped her AED again on Monday and then she was put on a quicker acting booster AED for the week. The plan is to have the booster and this dose for 5 days and then up her AED again. Hopefully then her body will adjust and the meds will reach a stable level. It will be a time of just taking things one week at a time and working out what dose will be the right one to control the seizures.
Brendon had organized a baby sitter for the day and so he came on his own after lunch to pick us up. It was wonderful to be home for dinner and enjoy some of his birthday cake.
Unfortunately Asher's evenings and nights just got worse. She was just very restless on Monday night but on Tuesday and Wednesday night we ended up having to give her 2 doses of pain killers each night to help her sleep. She was crying in pain and had so much wind and stomach discomfort. On Wednesday the pain meds did not really even help that much. We were counting down the hours to be able to give her a 2nd dose at 2am and only got about an hour to two of sleep after that.
I had been chatting with the hospital each evening but on Thursday I decided to phone in the morning (the previous night had been so bad). She was also rather grizzly on Thursday morning and just not her happy self (she had been ok the previous days through the day). They suggested I get her to the local doctor to check her ears and throat and feel her tummy. We managed to get an appointment in the afternoon which I was grateful for.
Although she had no fever she did have a red ear and throat. Thankfully no lymph nodes up so I felt it was still early stages but at least knew why she was grizzly that morning. I had started in the day treating her tummy for colic as I had with her and Hezekiah when they were babies (with an excellent pro-biotic and "Spascupreel" for cramps). After the doctors appointment I got her onto a few other natural products to help her ear and throat. It turns out she likes honey, and so she started getting teaspoons of Manuka Honey as well as Colloidal silver and glyconutrients. God graciously allowed these things to help her so quickly and she had such a good night. By Friday morning she was back to her happy, playing self. I will keep up with all the extra products to make sure she could get over it properly and I will keep her on the probiotics for a while still (or as long as I notice her extra wind).
I thank the Lord for giving me a special friend who reminded me of different things I could try to help Asher. It was a simple question on Thursday morning of "are you giving her a probiotic"? That just got my mind thinking about what I could do during the day to help her before we got to the crying in pain in the evening. We also discussed different natural things that could help Asher's ear and throat and it was such a blessing to get my mind working and thinking about what I had at home that I could use. And she is doing so well.
The Lord has again given me so many things to be thankful for through this time. Family, friends and medical people to help care, support and encourage.
Mostly for keeping Asher safe and helping her through this tough week. It is a huge blessing to have our happy little girl back and with no extra medication in her poor little tummy.