This morning was one of those again... first thing when I walked into the NICU I was informed that the shunt operation was postponed again, to next Tuesday instead of Saturday. The unit manager told me that the neurosurgeon was there to see her and he feels that she is too unstable or something or lots of talk but nothing sounded convincing. [If you don't like the technical details you can skip the next paragraph].
None of it made sense because she is pretty stable, except for getting brady's but that is probably because of the discomfort of the growing pressure in her head. If they refer to the infections, it doesn't make sense that they have not ordered fungal tests again since Saturday, and the results showed that her fungal count has decreased from 500 to 160 in 4 days. They need it to be below 100 for the operation, so surely from last Saturday to this coming Saturday the count will go down with another 60 to be below 100, given that she is still on antibiotics. Her platelets also did go down yesterday. The first blood tests came back in the morning and it was 40. (It should be above 150). But the pediatrician said it must be a mistake, so they did blood tests again and it came back as 89. But today they didn't even order blood tests. If the platelets are a concern they need to transfuse, that's always been the solution in the past. I understand that platelets going down is an indication that somewhere the body is sick, so it is concerning but whatever it is it should be fine by Saturday. I'm not a doctor, I know, but I can apply logic!
So I tried to see the pediatrician, but she is not there on Wednesdays (she did do rounds in the morning so she did see Tabitha). Then I tried to go and see the neurosurgeon. I had questions that needed to be answered! I waited in his rooms for almost 2 hours (they had to fit me in between patients, but he was quite busy). To my disappointment I missed out on Tabitha's 11h00 feeding session when I was planning to change her nappy and spend some kangaroo'ing time together. When I finally got to see him I told him that I'm very concerned because the operation is in actual fact not postponed by 3 days but by 3 weeks from the date initially planned (which was day 30). I heard them speaking before about trying to do the operation, the sooner the better. So it turns out the actual reason that the operation is being postponed now is that the anaesthetist and the pediatric nurse can't be there on Saturday. The doctor said that he doesn't want to just get anybody else because these people are brilliant. It would just increase the risk factors, and considering that versus postponing the operation 3 more days, he is more comfortable with postponing it. Fair enough. I know the anaesthetist is key in the success of the operation. I also don't want to take unnecessary chances. Its just a pity that we have to postpone because of outside factors this time. I even said I'll go and speak to the anaesthetist myself, but apparently he is out of town until the weekend. He said if we persist they can do the operation on Saturday, but I think it's unwise to take that responsibility. If something goes wrong, fingers will be pointed to us, the 'crazy parents who goes against the advice of the doctors'.
When I saw the neurologist on doing her rounds in the afternoon, she was quite concerned about the size of Tabitha's head. She was away for a week, so she hasn't seen her in a while. She said waiting until Saturday is a concern, but she'll prescribe a diuretic again to try and stabilize the growth rate. Then I told her that it has been postponed till next Tuesday now. Needless to say, her reaction did not comfort me.
Great. I do understand that babies' heads are flexi so the pressure doesn't build up as much as it would in an adult's head, making timing a little less critical. But her head has grown by 6cm since the first time they wanted to operate. And all the mixed messages... I feel stuck in the middle and there is nothing I can do! But I know I shouldn't be anxious. God is still in control.
Yes, I believe God is sovereign. And yes, I believe that as Christians we need to pray. These are not conflicting thoughts, if we don't believe that God is sovereign, our prayers will be more like wishful thinking. If God is God He can cause things to happen or not happen in a certain way. But I also believe that we need to be prudent, i.e. you can't not study for an exam and then fail and then say it was all in God's plan for it to happen that way. We need to do what we can do, use the means given by God to do what is in our scope. God will work through that as well to accomplish His purpose. With this in mind, I knew I did what I could so I shouldn't be anxious. God, in His infinite wisdom and perfect love, will make all things work together for good. We really can and should trust Him. Its a bad day for you when you think you can judge God if things don't go your way, according to your limited knowledge and wisdom. We don't see clearly.
Back to Tabitha – I tried to make up for lost time by going back again in the evening to hold her. Wessel had to work anyway. He went by to see her quickly after work at 6pm. Did I mention that she's on 10ml of milk now and that she made a big poo at 5pm? First one after she started feeds again yesterday. That's always a good sign, she is tolerating her feeds and managing her waste. AND there was no blood! So the NEC is gone.
They also removed the plasters that covered the operation wounds today. The one on her head and the one on her tummy. From a nursing perspective I'll say that the stitches look neat and the wounds are healthy. From a mother's perspective I'll say, 'It looks terrible, what on earth did you do with my child!!??!' The wounds are pretty big but I'll stay calm. It will heal, but only after they open it up again for the operation on Tuesday. What a strong and brave little girl we've got.
Phil 4:6
Do not be anxious about anything, but in everything, by prayer and petition,with thanksgiving, present your requests to God.
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