Posted (Tina) in All Posts on August-6-2008

UPDATE – 1:20AM (MST): Ella is not sleeping well. She is going in and out of sleep with a bit of fogginess. She seems disoriented. This is new. I wonder if it is the steroid that she received at 6pm; she’s never had that drug before tonight (Prednisolone). The nurse stated that they give this med to asthma patients frequently and it can have a restless effect. I know that she is overtired, but something seems different. She was crying like she was in pain and would not take her binky. I hope she isn’t working too hard.

Also, they decided to give her IV lasix at 12:15am; she’s had one diaper weighing in at 115. Anything over 100 is a good output for her.

On a positive note, her heart rate is around 110-115 and she is saturating 100 when she is still and asleep. I have not seen her heartrate that low in several weeks. I just wish I was seeing those numbers while she was on her baseline amount of oxygen, but she is still at 2.5 liters. Please say a prayer that she will go to sleep and rest soundly! She is so tired…and Mommy is too!

UPDATE – 2:40AM (MST):Yep, we’re still up. Ella is continuing this strange behavior, on and off about once every 15-25 minutes. They tried giving Tylenol earlier at 1:20am, but it didn’t seem to do much. The doctor gave her another full examination and thinks that she looks fine. She simply attributes it to a combination of possibly the steroids, but mostly that she is sick, doesn’t feel well and maybe has an overall achy feeling. Please pray that Ella can sleep away her discomfort and that there is not something else going on!

UPDATE – 8:45AM (MST):Ella and I did not sleep well last night. I’m convinced that it is the steroids that kept her up and had her feeling jittery and uncomfortable (look at that hairdo!).

We were woken up at 6am because the night shift team wanted a blood gas and so they wanted to poke her again. Literally, she has been poked 10+ times in the last 48 hours. I guess her potassium was a bit low yesterday and then they gave her lasix, so they want to check the levels again. Since they have used all good veins, they ended up trying in her hand and resorting to a heel prick.

I’m pushing for a plan and strategy today from the day shift team. I don’t feel like we have one central point of contact. And at this time, I’m not clear on what their goals are for her over the coming days. Do they want a clear chest xray? Do they simply want her saturating well with a good heart rate at her baseline of oxygen requirement? Are they going to give her more diuretics? Are they going to want more blood gases? What are our goals for her? All of the above? As you can see, I’ve got lots of questions. I’m hoping the day shift team can help answer them today.

Although we had a rough night, she is looking a lot better this morning. She is down to 1.5 liters of oxygen. She doesn’t seem to be working as hard. Right now, she is watching a video in her crib – her heart rate is 128 and she is saturating at 97-98, with some feet kicking going on. Yesterday, her heart rate when she was awake was around 175 for most of the day.

She still sounds sick – congestion and coughing. But the fact that she is not working as hard makes me feel better.

I feel like the fluid issue is subtly being confirmed. They gave her an extra dose of Bumex yesterday as well as IV lasix. Her urine output on Monday was ~300ml. Her urine output yesterday with the increased diuretics was 535ml. So, she definitely is getting rid of some fluid (normal range for her would be 168 – 336; 1-2mls per kilo, per hour).

The fluid theory is also being confirmed when you look at her weight. She weighed in with the ER at 16 lbs 4 oz (7.47 kilos) and this morning she weighed 15 lbs 6 oz (7.1 kilos). That is a big weight shift between Monday morning and Wednesday morning.

Looking back, she weighed 15 lbs 12 oz at Dr. Perry’s office a week ago on Monday (one week prior to being admitted), so she may have been retaining fluid at that point too.

The night shift resident really rubbed me the wrong way last night. She came off as abrasive and you don’t get the feeling that she respects a parent’s input. For example, Ella was really fussy and it took a long time to get her to sleep. The resident came in and wanted to “listen to her”. That process wakes Ella up. Since she was saturating beautifully and there was nothing clinically to indicate a crises, we asked if she could hold off on listening. We got an attitude and she basically disagreed and said that she was going to listen to her anyway. Sure enough, it woke up Ella.

Fortunately, I’ve really liked the day shift team, so I’m going to focus my efforts in getting a plan in place today.

Please continue to pray that Ella will feel better. Also, that her and I can catch some naps throughout the day so we are not feeling so sleep deprived.

UPDATE – 10:30PM (MST): Thank you for all the prayers. Ella and I did catch a few short naps today and they definitely helped! Also, I think that Ella is so tired that she has actually been sleeping really well this past hour or so. I hope that is indicative of how she will rest for the remainder of the night.

Today was mostly a resting day for the Bun. They have left her on 1.5 liters of oxygen, but she has been stable and saturating beautifully all day long. I am sure that they will wean her at some point this evening or first thing in the morning.

She has gotten dry – this is why she is starting to feel better. The increased dosage of bumex and the shot of IV lasix has helped reduce her fluid. Her BUN on Monday was 14, it was 19 yesterday and this morning, it shot to 28 which is really dry. I think the increased diuretics along with the steroids have done the trick. In the past, we have only used diuretics and it has taken several days for her to dry out. The steroids shortened the life of that real quick, which is great because it means that Ella must be feeling better. She certainly isn’t laboring as hard to breathe.

Her swallow study is scheduled tomorrow. We should also hear back from pulmonology and gastroenterology regarding the next steps that we want to take with her care. Today was a lot of me pushing buttons and becoming a squeaky wheel to get them to understand that we need a plan. I think the pieces of the puzzle will start coming together tomorrow and the picture will be more clear about next steps.

Josh is working late tonight, but will be reliving me at some point. In the meantime, I’m going to shut my eyes and catch some zzzs right now. Later, I will dash home and sleep in our bed to get caught up on sleep and Josh will stay overnight with Ella.

Please pray that Ella sleeps well tonight…that will make for a much happier Daddy. Also, that we can consult with the various departments tomorrow and get the wisdom from all the doctors so that we can come up with a plan for Ella….a plan that we will feel comfortable with implementing.

Thanks again for all the support and prayers.