We started off today with two cath kits. Two. I made the decision late yesterday to stop giving Anna her meds hoping that it would make it easier for her to pee on her own. She woke up with a wet pull-up, which is normal. And then Rich cathed her. One cath kit left.
When my sister-in-law, Molly, arrived this morning to watch the girls, I told her that we needed to save that last cath kit. I asked her to watch for wet pull-ups on Anna so that we could have some reassurance that her bladder was emptying and not backing up into her kidneys.
Molly called me right before 1:00 to say that the 30 cath kits we had so desperately been waiting for had finally arrived. Thank God! Another shipment of 120 kits is scheduled to arrive within the next two to four business days but we need to watch our current supply in case there is some issue with these new kits. I no longer trust that company.
I have mentioned before how Anna stumbles and trips a lot. All of her big falls (like when she split her head open) seem to happen at night, most likely because her little body is tired out. Well, last night she fell again right before bedtime. It was borderline me wanting to take her to the ER. She hit the back of her head on a table in the family room, which resulted in this long, thin raised bump. Very raised.
She cried for a long time while I applied ice to see if the swelling would go down. She was acting normal during the bedtime process and the swelling had gone down a bit. I did sleep in her bed with her overnight to keep an eye on her though.
I know she does so well for having spina bifida but this week was really difficult for me. I keep waiting for this miracle to happen. I want her to sit on the potty and pee on her own. I want her to be able to catch herself before she falls.
When my sister-in-law, Molly, arrived this morning to watch the girls, I told her that we needed to save that last cath kit. I asked her to watch for wet pull-ups on Anna so that we could have some reassurance that her bladder was emptying and not backing up into her kidneys.
Molly called me right before 1:00 to say that the 30 cath kits we had so desperately been waiting for had finally arrived. Thank God! Another shipment of 120 kits is scheduled to arrive within the next two to four business days but we need to watch our current supply in case there is some issue with these new kits. I no longer trust that company.
I have mentioned before how Anna stumbles and trips a lot. All of her big falls (like when she split her head open) seem to happen at night, most likely because her little body is tired out. Well, last night she fell again right before bedtime. It was borderline me wanting to take her to the ER. She hit the back of her head on a table in the family room, which resulted in this long, thin raised bump. Very raised.
She cried for a long time while I applied ice to see if the swelling would go down. She was acting normal during the bedtime process and the swelling had gone down a bit. I did sleep in her bed with her overnight to keep an eye on her though.
I know she does so well for having spina bifida but this week was really difficult for me. I keep waiting for this miracle to happen. I want her to sit on the potty and pee on her own. I want her to be able to catch herself before she falls.
She's such a brave little girl. Anna, one day you will read this. Please don't ever forgot how brave you are!
The girls, Emily in particular, have slowly crept back into the land of bad sleep habits. Unfortunately, being sick for so long sort of ruined things. Because there was puke involved here and there, I would sleep with the vomiter to ensure that she wouldn't choke. And other nights when I knew that they were feeling crummy, I would climb into their beds if someone came and woke me up in the middle of the night. If they were not puking, I would sneak out as soon as they were in a deep sleep.
The girls, Emily in particular, have slowly crept back into the land of bad sleep habits. Unfortunately, being sick for so long sort of ruined things. Because there was puke involved here and there, I would sleep with the vomiter to ensure that she wouldn't choke. And other nights when I knew that they were feeling crummy, I would climb into their beds if someone came and woke me up in the middle of the night. If they were not puking, I would sneak out as soon as they were in a deep sleep.
The night before last, I woke up between midnight and 1:00 and decided to get up to use the bathroom. I had been sleeping on my side facing the outside of the bed. On my way back to bed, I discovered Emily sound asleep in the middle of the bed. What the WHAT?
I had absolutely no recollection of putting her in the bed. Rich can neither confirm nor deny that he was the one who placed her there. She ALWAYS comes to my side of the bed first so I was a bit shocked that I slept through her getting into the bed. Although, sleep deprivation causes you to do things you never thought you could do. Like sleep through stuff. Like alarms.
This morning, I asked Em how she got into the middle of the bed. At first, she said that I placed her there but then the she backpedaled and said that she crawled in herself. Hmmmm? I don't think she even remembers.
I work in Boston's financial district, which is extremely close to Boston's waterfront. This means that the weather at work can be that of a different season from the weather at home. I had a very chilly 60 degree walk to the train station last night only to arrive home to 80 degrees! I have been delaying updating the girls' closet because of the cold weather but it appears that the time has arrived.
Because the girls insist on selecting their own outfits, I have devised a new way of organizing their closet. I'll explain more when that little project is complete, which needs to be soon because they keep pulling out velour, corduroy or turtleneck dresses to wear.
Em is still wearing her pink fuzzy boots with everything. It's cute.
Em is still wearing her pink fuzzy boots with everything. It's cute.
(Picture from 2 weeks ago. Must. Take. More. Pictures.)
4 comments:
I can't begin to imagine how stressful it's been for you all to have to ration those kits. I am so thankful to hear that you finally got some in...
When I first found out Liam had Spina Bifida and the chance that he might one day need to be cathed was one of my biggest concerns next to needing a shunt. Although we never got to that point since he died in surgery, I have somewhat of an understanding of what you are going through.
I think Anna she sounds like a pretty brave and strong little girl.
I think it's interesting that you said she falls more at night, in general I think Peyton falls more towards the evening as well, especially on a bad day. I guess it's just muscle/tone related, that they are tired?
I know Peyton doesn't have spina bifida but she has some of the same issues that your little one has.
I totally relate about sleeping through the alarm, normally the drop of a coin will wake me up, but i've been sooo sleepy i've slept through an alarm lately & not even heard DH's which NEVER happens.
Do you think you could explain to me why the SB (can I use that abbreviation?) causes her to have trouble peeing? Peyton has frequent UTI's ( no reflux, low low grade fever, if any) but now has been having negative cultures/lap but the same symptoms. She will start soaking through diapers..and then just stop and go almost a whole day without peeing. Then she starts screaming & will finally pee and you can feel her diaper get wet and she slowly stops crying. The urologist thinks it may have something to do with her bowel habits or her sacral lypoma.
SIGH.
OK - I must admit that this part of your post "Anna, one day you will read this. Please don't ever forgot how brave you are!" made me cry at work. She is so brave and amazing and so are you! Sorry about the cath kits issue - that's got to be stressful.
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