Monthly Archives: September 2014

A Nice Nurse. Originally Posted January 17, 2010

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First of all I want to thank eveyone who has posted messages. I really enjoy reading them!

On Friday night Ali got to try life without a feeding tube for the first time. She loved it but the tube had to go back in. The hope was that without the NG tube she would be able to suck and swallow more effectively but unfortunately she wasn’t able to.

Yesterday was a good day for Ali. She was a little agitated on and off but overall she seemed to be comfortable. She was pretty sleepy but she had some times where she was awake and alert and she was looking around and trying to hold her head up.  We’ve noticed over the past couple of days that her tone is improving which is a pretty good indication that the Digoxin levels are coming down and that she is starting to feel better.

Same thing today so far. She is a little agitated at times but generally she is just cuddling and sleeping comfortably.

Ali got a calorie increase in her tube feed yesterday so that could account for the agitation but she seems to be tolerating it well and I am happy to report that I haven’t been puked on in almost 48 hours! That is definetely a step in the right direction for us!!!!

Today we had some excitement. Ali got moved to an isolation room because she may have a cold. She has been coughing and sneezing a bit and she’s been pretty congested. So now we’ll have a private room for a few days…who can complain about that?????

Tonight, as we usually do we waited for the night nurse to start her shift before we left the hospital. I like to check with the night nurse before leaving because I want to know who is taking care of Ali and whether or not it’s someone that I really, really trust before I leave for the night.

The nurse tonight is a great lady who is wonderful with Ali. She really knows Ali and I think that Ali really likes her. When we were leaving she told us that she actually takes her breaks in Ali’s room and either holds her or just sits next to her and reads her book. Apparently there’s another nurse that does this too! She said that they come in and play with her at night and they try to get her to look at them and respond to her name. She ended the conversation by saying that Ali isn’t just a little baby now, she’s one of their favourites! That really made me feel good knowing that my little girl has people to love her even when I’m not around!

So I can sleep well tonight knowing that my girl is well cared for and safe!

A Step Back. Originally Posted January 15, 2010

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Ali is not tolerating her increased feed volume (she’s back to vomiting violently) so it’s back to the drawing board to come up with a new plan. GI will be in later to talk to me about a bunch more tests that we may need to do.

At the advice of the Speech Pathologist we are no longer going to be attempting to give Ali any bottles. She is just not ready I guess and the chance exists that she may aspirate the formula into her lungs. So we are going to go back to working on sucking her soother and we’ll take it from there.

I feel really discouraged today! Some days are really tough!

Trying to Eat? Originally Posted January 14, 2010

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Not much new to report today. All of Ali’s metabolic tests and her GI scans from this week were normal.

We have talked with the pediatricians about trying to push Ali a bit in terms of her tube feeds. She is not getting nearly enough nutrition so we need to increase the volume of her feeds to get her the calories that she needs to grow (Ali has not grown in length since birth and is still under her birth weight). We also need to condense her feeds because she is pretty much feeding continuously right now and eating all the time may be affecting her desire to bottle feed because she is always full. In short we need to feed her more food in less time. We have attempted to do this before and she didn’t tolerate it well but hopefully as the Digoxin leaves her system, her ability to tolerate food will increase.

We have been trying to give her a small bottle (5 ml) every three hours and will continue to do that. If she learns to bottle feed then we don’t have to worry about her tolerating her tube feeds. She is not really able to suck or swallow effectively yet so we will continue to attempt to bottle feed her and hopefully soon she will learn to bottle effectively.

Ali went into SVT this morning which is a good indication that the Digoxin is leaving her system. The SVT was short and she remained stable throughout the episode so no worries! We may have to look at putting her on a different class of heart medications before she is discharged from the hospital. Her cardiologist is consulting with some cardiologists in Boston about her episodes of SVT because the appear atypical in some ways. We’ll be waiting a few days to decide if we need to medicate her or not.

Today, Ali had her first bath!

Moving Forward. Originally Posted January 13, 2010

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Sorry for being so late starting this page for Ali but there’s been a lot going on. She has now been in the hospital for over three weeks so I guess it’s time to get started on a web page for her!

This week has had many ups and downs. Ali is still not tolerating her tube feeds very well but we have made the decision to attempt to increase the volume of her feed very slightly anyways because she hasn’t grown since she was born (in length or mass). Not growing could affect her neurological development so it’s crucial that we make some changes to ensure that she is getting proper nutrition. The other option would be to increase the calorie value of her formula but that hasn’t been overly successful in the past. Today she seems a little uncomfortable on the increased volume of the feed but so far she’s kept it all down.

Yesterday the decision was made to discontinue Ali’s Digoxin. This is the medication that she was overdosed on earlier in our time here.   This overdose left her very ill and thanks to this medication we went through what was absolutely the most terrifying experience of our lives.  Once the medication left her system initially, it was restarted but unfortunately even on a very conservative dose, the concentration of Dig in her blood stream got really high again. We (Jason and I and the pediatrician) felt that she was going downhill again on this medication so after consulting with the cardiology team we all agreed to take her off the med and leave her without cardiac medication and just see how her heart reacts. We will probably be looking at a new medication for her next week but for now she is in a safe place and if she goes into SVT there are trained professionals around to intervene if necessary so we’re comfortable seeing how things go without so many meds in her system.

We have been attempting to give her bottles. She hasn’t been overly successful yet. Her ability to swallow seems to have been slow to develop which is why she is primarly tube fed. Sometimes she is able to take in 5-10 ml of formula by bottle and at other times she chokes or gags. It’s going to be a slow process but it’s my hope that eventually she’ll learn to bottle feed.

We are very hopeful that once the dig clears her system she will begin to improve in all areas. Jason and I feel very strongly that after being OD’ed on Dig, it is not a medication that is good for Ali and we’re very happy that she’s not taking it anymore.

This morning Ali went for a “Gastric Emptying Scan”, no results yet. There were also some metabolic tests done and we are awaiting those results as well!

I will update again as soon as I have the chance to!