It needs to come down to below 10.
Lilyana is at 11.1 :-)
Tuesday June 17 - Came to hospital Monday morning for the day and still haven't left. Lilyana has been getting some real high temperature's and a number of other issues. Looks like she may have a bug in her Hickman line. They may need to remove her line tomorrow. Not sure how day 3 of chemotherapy is going to happen.
Wednesday June 18 - This morning Lilyana was nil by mouth (no food or liquid) just in case they had to remove her line (with surgery). She was not happy about that. But thanks be to God Lilyana's latest blood culture didn't grow anything, so no surgery needed. She was real happy when she could have a breastfeed again :-). Her temperature has been good and she even ate a little breakfast, which is pleasing because she has refused food since Monday morning. Bloods not great, will be doing a blood transfusion this afternoon. Antibiotics has continued and so has chemotherapy. Praying she will continue to improve and that we can go home today/tomorrow.
What a long day. Lilyana had a high temperature again this afternoon. Chemotherapy is all finished for this round. Still in starship. Praying she has a good night. No idea what the plan is for tomorrow apart from antibiotics and fluids. My plan for tonight is sleep :-).
Praise God. The cancer is almost gone.
Tuesday June 17 - Came to hospital Monday morning for the day and still haven't left. Lilyana has been getting some real high temperature's and a number of other issues. Looks like she may have a bug in her Hickman line. They may need to remove her line tomorrow. Not sure how day 3 of chemotherapy is going to happen.
Wednesday June 18 - This morning Lilyana was nil by mouth (no food or liquid) just in case they had to remove her line (with surgery). She was not happy about that. But thanks be to God Lilyana's latest blood culture didn't grow anything, so no surgery needed. She was real happy when she could have a breastfeed again :-). Her temperature has been good and she even ate a little breakfast, which is pleasing because she has refused food since Monday morning. Bloods not great, will be doing a blood transfusion this afternoon. Antibiotics has continued and so has chemotherapy. Praying she will continue to improve and that we can go home today/tomorrow.
What a long day. Lilyana had a high temperature again this afternoon. Chemotherapy is all finished for this round. Still in starship. Praying she has a good night. No idea what the plan is for tomorrow apart from antibiotics and fluids. My plan for tonight is sleep :-).
 |
| Feeling a lot better today :-) |
Thursday June 19 - Lilyana will go have surgery this afternoon to remove her Hickman line. It is currently blocked so they have had to switch to oral antibiotics. Last dose of oral was 10 ml, think we got less than half of it into her, tastes yucky. So another night at our favourite hospital :-). Removal of Lilyana's infected line went well. She is so much happier and looks so much better. However she is not impressed about the 'thing' in her foot, for the antibiotics to go through, (can't think what it is called). Not sure when we can go home, doctors want her to have 48 hours of iv antibiotics, now that the infected line has been removed. About 6 hours down. We will see what tomorrow brings.
Saturday June 21 - Well where to begin :-). I'm so tired. So Friday came, and the 11 am antibiotics doctor came and said we had to stay till Saturday morning to get as many rounds of antibiotics in as possible. They let us leave in the early morning to go the airport for Christchurch (to see my Daddy, Lilyana's Grandad). They let us out at lunchtime to go home and pack with instructions to be back before 5pm. Well, we returned back to starship only to find that Lilyana's iv thing in her foot was 'broken'.
tick tick tick.
Doctor tried to put one in another place.
FAIL.
tick tick tick.
More experienced doctor tired to put one in.
FAIL.
tick tick tick.
An even more experienced doctor tired to put one in.
FAIL.
tick tick
New plan
tick tick.
10pm decided an antibiotic would be injected into her muscles (in her legs) and then we could continue with oral antibiotics while in Christchurch. 10:40pm doctors and nurses arrived to administer the injection. 11pm we left hospital . 11:45 arrived at home .
 |
| Walking the corridors |
 |
| Wheel chair rides to pass the time, tick tick tick. |
Saturday June 21 - Well where to begin :-). I'm so tired. So Friday came, and the 11 am antibiotics doctor came and said we had to stay till Saturday morning to get as many rounds of antibiotics in as possible. They let us leave in the early morning to go the airport for Christchurch (to see my Daddy, Lilyana's Grandad). They let us out at lunchtime to go home and pack with instructions to be back before 5pm. Well, we returned back to starship only to find that Lilyana's iv thing in her foot was 'broken'.
tick tick tick.
Doctor tried to put one in another place.
FAIL.
tick tick tick.
More experienced doctor tired to put one in.
FAIL.
tick tick tick.
An even more experienced doctor tired to put one in.
FAIL.
tick tick
New plan
tick tick.
10pm decided an antibiotic would be injected into her muscles (in her legs) and then we could continue with oral antibiotics while in Christchurch. 10:40pm doctors and nurses arrived to administer the injection. 11pm we left hospital . 11:45 arrived at home .
Both children had bad nights. 5:45am get up, 6:40am leave for airport.
Monday June 23 - Lilyana's bloods were mainly good except for her neutrophils which were down to 0.1 :-(. Her eczema is bad because her immunity is down. But got the all clear from CHOC that we don't need to go back again while we are in Christchurch, great news because Dad got transferred to Burwood hospital, Spinal Unit this afternoon. Dad also had a meeting with on Oncologist today, didn't have great news.
We had a great flight, children were great. Flight even arrived early
Now in Christchurch. Was great to see my Daddy. Lots of tears . Love you Dad. Been twice today to visit him at Christchurch Hospital. Soon he will be moved to Burwood hospital. Finding it hard to see my very active Dad only moving his left arm and his head a little.
Lilyana is doing great. But we are all tired.
Sunday June 22 - Big confusion between Starship and CHOC (Children's Haematology Oncology Centre) in Christchurch hospital. Spent sometime there trying to convince that Lilyana didn't need any medical attention. Told to return Monday for some bloods. Did manage to visit Dad at Christchurch hospital.
Now in Christchurch. Was great to see my Daddy. Lots of tears . Love you Dad. Been twice today to visit him at Christchurch Hospital. Soon he will be moved to Burwood hospital. Finding it hard to see my very active Dad only moving his left arm and his head a little.
Lilyana is doing great. But we are all tired.
Sunday June 22 - Big confusion between Starship and CHOC (Children's Haematology Oncology Centre) in Christchurch hospital. Spent sometime there trying to convince that Lilyana didn't need any medical attention. Told to return Monday for some bloods. Did manage to visit Dad at Christchurch hospital.
 |
| Cuddles with Great Uncle Winston |
 |
| Waiting at CHOC |
If you are in Christchurch or going to Christchurch please visit him, helps the time go faster :-).
 |
| Dad (Grandad) in his wheel chair eating lunch |
 |
| Dad and I |
 |
| Dad and Nathan |
 |
| Dad and Joanna |
Tuesday, Wednesday - Visited Dad as often as we could, between Derek and Lilyana's sleeps
Thursday June 26 - No place like home.
Thursday June 26 - No place like home.
No comments:
Post a Comment