Day of Life #107

Check out this video of Madeline talking!

Anyways-
Madeline had another Nephrology visit. The Nephrologist is concerned that Madeline has not gained enough since her last visit/nor has she increased what she is eating. Therefore they want to put her NG tube(this is the tube that goes in her nose and down her throat)  back in until we can get the GTUBE surgery.  They told us that her not gaining weight is almost as bad as her losing weight at this point. One indicator that there is an issue is the fact that her BUN is way down (even lower than a normal person's level)- and if you remember the BUN was way high at one point and was something we were concerned about . They told us that it is probably so low because she is not getting enough nutrition. If she does not maintain adequate nutrition- her recovery after surgery may be more difficult and her body may not heal well.

So until we can get the surgery (We should have a better idea of when that will be when we talk to her surgeon on Friday)- this is the way it has to be. Although they did teach us how to put the NG tube- her home nurse will retrain us just to be sure. So her schedule will look like this: At night she will be on a continuous feed (which means her NG tube will be hooked up to a feeding pump that will slowly dispense food all night until she gets her required amount of nutrition). In the morning/daytime she will get feeds by bottle- They want her to take 105cc (3.5oz) by bottle at each feed. If she does not finish the full 105cc's we have to put the rest of the milk in the tube using the feeding pump (we have to set the feed to finish over an hour).  We can also give her meds through the NG tube as well.  We are disappointed about this because it is never pleasant to have to shove a tube down your child's throat. I am worried that it will be discomforting to Madeline and may add to an aversion of eating (I have read that they feel discomfort in their throat as they swallow). Granted this is only temporary- but it is still unsettling.It will also require more time and close care. She will use the apnea monitor at night to make sure she does not have any apnic episodes (where she does not breath). This can happen if kids pull out their tubes halfway and start choking on them. This is the same setup as she had at the hospital basically.

Although temporary and necessary- it still feels like steps backwards in her recovery. It is harder now that she is older to have to see her go through all this stuff again.

The doctor also told us her hemoglobin has continued to trend down so now they want her to take iron twice a day - we will have to adjust her medicine schedule accordingly.

We should know more on Friday after meeting with the SurgeIt on. Hopefully she can get her surgery very soon.

The nephrology staff has been very helpful in trying to make things as easy as possible for us despite all the complications. They are very accommodating and caring. For this we are so thankful.

It is a disheartening day but we are trying to remain positive knowing that God has a reason for everything and that this can only make us stronger.

God Bless