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.

Kristen on August 6th, 2008 at 7:59 am #

Praying the staff lets you sleep!

Anne on August 6th, 2008 at 8:07 am #

Yea… you’re gonna run into all kinds in a hospital situation, unfortunately, you don’t get to PICK those doctors. Concentrate on the ones who DO listen to you and make that your focus. Hopefully last night’s experience will be “abnormal”… (and maybe there’s a reason that person is on the NIGHT shift!!!) Happy napping!

Kathy on August 6th, 2008 at 9:10 am #

I’m still praying for all of you, and I know that God will work out all things. I’ll pray for ALL the doctors, too. You know, they say all doctors “practice” medicine, but I think the one on the night shift forgot to do her homework!

Take care of yourselves!

John & Estela WIlliams on August 6th, 2008 at 9:29 am #

We are praying for your 3, stay strong and focused in getting Ella better. Love you guys!

Eve Johnson on August 6th, 2008 at 10:06 am #

You just stand your ground, Tina. God has given you the gift of discernment when it comes to what Ella needs.

Jim and Char Jordan on August 6th, 2008 at 11:40 am #

Hang in there with the resident. They are continually sleep deprived. I am never ever reasonable when sleep deprived. We will pray for continued improved stats. LOVE, Jim and Char

Ani on August 6th, 2008 at 12:09 pm #

My gosh Tina…I had not checked for a couple days and had to catch up. I am so sorry for everything that has happened and I am hoping that all of you will feel better soon. Stay strong…I love you!

Kara on August 6th, 2008 at 12:36 pm #

I was put on that same steroid the last time we were in CA. It had horrible effects on me. I would do this weird half sleeping thing and the dreams were wild. She may have been waking up to nightmares on top of everything else she’s dealing with. The drug made me very out of it. I dreaded taking it each of the 6 days I was on it. It was awful.

I sure hope they get this all figured out and they start to respect your need for sleep. Hospitals are so bad about that. You are in our prayers.

LoriAnn & The Gang on August 6th, 2008 at 12:58 pm #

When Tyler (my 12 year old) took steroids for his asthmas (he has since been healed of this) EVERY DAY for 2 years, he would be completely jittery. FREAKY jittery. It would really miss up his sleep patterns. He had a nebulizer to take every morning and every night for 2 years, sometime extra when he was in distress mode. It is hard to be sleep-deprived, and most of us moms, and yes dads, too, know how that is: it can make you grumpy, intolerable to stupid people; all sorts of things. This night nurse is, like stated above, sleep-deprived too. Although, I don’t think that gives her the excuse to be rude; she could have come back. I remember after having each baby that the nurses would come in to check on Baby at all sorts of times. By the time I had my third, I would insist they come back unless I called them. I guess in your situation, they need to check things out on a timely manner and probably need to put numbers and such in charts at certain times, or they might get in “trouble”.
I will pray for good sleep for you and Ella-Bella and that the Day Shift is well rested and for the Night Shift, if you have to stay, is more in tune with your Mother-Love, even if it is the same group.
Thanks for keeping us updated. I can’t believe you have such good grammer and puncuation when you are so tired. LOL
Isaiah (my 2 year old grandbaby) is doing great today, btw, and keeps touching the spot where they glued him back together, saying, “ow”; “no”; “yuck”. I have him in my office/trailer and he is enjoying his one-on-one time with his MeeMaw.
Love to you,
LoriAnn & Isaiah (everyone else is out-and-about)

Kathy on August 6th, 2008 at 1:36 pm #

OH WOW! She looks SO much better in these latest pictures! I am so glad because she has been on my heart and in my prayers! Hopefully now you can get some sleep as well!

Jennifer Harris on August 6th, 2008 at 2:43 pm #

Ella is in our prayers and her mommy and daddy are too. Meds. have strange side effects! GOD WILL heal her and she WILL be stronger soon. We’ll continue to pray, day and night, for her recovery.

Katy Nilsson on August 6th, 2008 at 4:26 pm #

My prayers are with you three. Even when the Bun isn’t feeling great, she is still too cute for words. I hope everyone is able to rest, especially Ella so she can even out her numbers and feel better.

The Riches on August 6th, 2008 at 7:44 pm #

You are in our prayers precious baby!!!!

Laura Marold on August 6th, 2008 at 8:11 pm #

Sending prayers and love to a lovely little lady. Sending courage and love to two very wonderful parents. Laura M.

Joel Snyder on August 6th, 2008 at 9:51 pm #

Ella, Just got home from visiting you and Mom at the hospital. I am glad to see you are doing much better today. I will be back to visit you again tomorrow. Sleep well “BUN”. Love,Grandpa!!!!!!!!!!!!!

Roxie (Adrienne's friend) on August 7th, 2008 at 3:58 am #

Tina, Josh and Baby Bun, We are all out here praying for you in every way that God brings to our hearts and minds. Here’s a note on residents. Even though he/she didn’t not heed your concern about waking Ella up… if Ella had gone into additional distress during the night the resident would have been able to handle the situation better if he had evaluated Ella himself rather than just looking at a chart. His or her bedside manner may need some polish but often that comes with time and experience. Generally the ones that don’t have a polished or softened a bedside manner don’t have children yet. Pray for them as they touch your Ella and you may even help them learn to be ever so gentle. Say, “I know you are just trying to do your job well and have the welfare of my baby at heart so let me help you.” Ella is going to be an interesting “case” to many and you may have to run interferance for her sometimes. I know you are tired. Ask the Spirit to be your guide. I’m praying for your feet not to touch the ground as you are being lifted up in prayer. Love to you, Roxie

Marge (Indiana friend of Keith & Liz Mueller - Chris' parents) on August 7th, 2008 at 8:02 am #

Sweet Baby Ella, please feel better soon. May God restore you and keep you safe and well as you rest in His healing hands. God Bless your mommy and daddy as they travel this journey with you. You are our hero, Ella.

Lisa Richmond on August 7th, 2008 at 8:45 am #

It’s been a long time since my eyes watered up reading your blog…Let’s try to get away from that!!!

So frustrating I’m sure! You can see in Ella’s eyes in the pics you post…that she is just not feeling well..I am sure she is so comforted just having you and Josh by her side when she gets scared and is laboring..You are so amazing!


It’s all we have…BUT…it IS enough. It will all be good.

Trust in His plan for Ella…and I am saying a prayer that she gets better
soon….the beautiful susnset is so much nicer when it’s from the comfort of home!

🙂 Jim and Lisa

the Lizotte family on August 7th, 2008 at 9:42 am #

Ella you are in our prayers. I must add I Love the hair! Get better baby girl!
big xoxox

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