Hospital Updates from Facebook

I wanted to compile all the hospital updates from Facebook into one place for ease of reference looking back. Thank you all for loving McLaine and following my updates on her.

7/21/13

 

When your child is an aspiration risk and has had chronic vomiting on and off for weeks and you've already been to her nutritionist and pediatrician twice, you drive an hour and a half to the best children's hospital in the area and cross your fingers that someone is able to help. Prayers please!

After IV fluids, zofran, an enema and then promptly vomiting back up the 20 mL of pedialyte with rice cereal that was given to her, McLaine is being admitted. This is actually exactly what I was hoping for by coming to the ER. Hoping GI is going to address her chronic reflux in a more permanent and serious way than they have in the past because I'm not leaving without a solid plan of action for her.

7/22/13

Well, not exactly the news we were hoping for. They feel that McLaine is too unstable to undergo testing and that it might skew the results and cause more trauma on her body which is already failing her right now. So, for now, we just try to boost her calories and get her weight back up when she can tolerate feeds again. They also feel we need to start pursuing testing for a mitochondrial disorder. Not good news...

7/23/13

Alright, this morning we pray that McLaine is able to take nutrition through her G-tube. We will be trialing that here in the next few hours. She has now lost a total of 3 lbs In a child with low weight anyway, this is not good. If she is unable to hold down g-tube feeds, she will be put on total parenteral nutrition (basically, total nutrition run intravenously).

Well, the g-tube feeding didn't go well. She didn't even make it 10 mL of thickened pedialyte run over an hour without spitting it up (that's basically 2 tsp of liquid). They officially said nothing else to eat or drink overnight. Tomorrow I'm planning to ask that they just go ahead and place a J-tube. It's something that's been discussed as a possible next step in the past due to the reflux and at this point, I feel like it's a better long term option and less risky than placing a central line for TPN. As always, continued prayers that my wishes will be accepted by the doctors tomorrow and McLaine will improve.

7/24/13

Well McLaine's temp has dropped to 94 totally unexpectedly and seemingly for no reason. Pray that she is about to regulate her own body temperature and that the measures they are taking bring her back up to normal temp. This seems even more indicative of a mitochondrial disorder and perhaps we can go ahead and get them to begin some testing while we are here inpatient.

Alright, tomorrow McLaine has her GJ tube placed A new chapter and hopefully better digestive and overall health to follow.

7/25/13

Baby girl's temp dropped to around 94 again at the same time as yesterday (around 4 am). She is snuggled up under her warm air blanket and I'm waiting to hear if anesthesiology will still accept her this morning for her procedure after the temperature drop.

 

As far as I know right now, McLaine will be having her GJ tube placement as soon as the transport people get here. Prayers for a safe procedure please.

 

A pre-procedure hair check. we are on our way down.

 

Just want to give a big thank you to everyone for covering my baby in prayer and sending all of your good thoughts. Her GJ placement went beautifully and She came out of anesthesia better than I've ever seen her do before. She's not even lethargic or out of it. Also, the surgeon said the inside of her stomach looked good and, best of all, that her esophagus shows no redness or damage despite such a history of chronic vomiting. I know it's due to the abundance of love and prayers sent her way. God is good

 

More prayers please- McLaine is not holding down the GJ-tube feeds which is really next to impossible... Waiting to hear from the doctor on what happens next.

 

7/26/13

 

So they gave McLaine a break until midnight on her feedings and started her off at 5 mL per hour overnight. This morning they've bumped her up to 10 and so far so good. No spit up yet! They think maybe they were just a little ambitious with the starting rates and McLaine just needed to take it slower. So they are going to increase feeds slower throughout the day today. Thank you for all who prayed for her last night

 

They're getting ready to start McLaine on some TPN feeds through her IV. No central line needed since it should be very temporary just because it's taking so long to increase her feeds and get her on formula. Another big worry off my chest since she's been on fluids only since Sunday.

 

Anyone who knows me knows that I love TV and movies. At this point, even I am "tved out!" I am so stinkin bored in here and I don't even want to watch more TV. In fact, I want to go running or something. I feel like a caged animal and I imagine McLaine must feel the same! So, I will take this moment and be grateful that I am only feeling bored now and not so much stressed now that things have settled down. Clearly, for those of you who have been praying for my peace and strength, it's working! LOL Looks like they will be keeping us through the weekend as they told me to go ahead and cancel a doctor's appointment McLaine was supposed to have Monday morning.

 

7/27/13

 

Sooo supposedly we are getting a genetic consult today! Totally unexpected and awesome news Not sure what will come of it, but being able to talk to a geneticist will be a good thing either way. So, we'll see if they actually come on a Saturday...

In other news, McLaine's temp dropped again last night. I'm personally sure it's due to lack of nutrition and hopefully with the TPN going now that wi...ll stop happening. There is also concern that she's spitting up her own secretions (with her being an aspiration risk, anything coming up is a concern) and she's also spitting up on her medications (which have to be put through the G port of her button). Still slowly increasing her j-tube feeds, which is going very well. So, now, we wait and wait some more Continued prayers for her doctor's wisdom as I feel they've done a good job with her here and I fully trust their plan for her whatever may come.

 

We went on a little walk to the playroom today. McLaine really enjoyed it. The end of every hallway is made of floor to ceiling windows and looks like we are on a beach vacation rather than in a children's hospital lol. I wish it were the former ha

 

So, I know I've become a complete over-sharer since we've been in the hospital and I'm so bored, but I HAD to share this one. The nurse just came in to tell me that a little boy saw McLaine on her walk through the hallways with the IV pole and all the wires. He has been scared to leave his room being connected to all the wires/tubing and seeing McLaine made him ask his mom if he could go out too. So, I may or may not have started crying in front of the nurse. My baby just has a way about her that inspires others and it makes me SO proud!

 

Well, little Claine just can't win this week! They tried a new med (robinul) to try and help her make less saliva/secretions hoping that would help with her spit up and she's allergic to it! Hives all over her face, neck, chest and back. She is one tough chick though and only cried and scratched just a little.

 

7/28/13

 

My little princess was so worn out from the allergic reaction, Benadryl and probably just overall hospital living that she didn't even bat an eye until 10 am. They took vitals several times and two doctors came to see her and she had blood drawn and didn't even stir lol! One of her arms is a little swollen today and she is still struggling a bit with spitting up on her own saliva. Motility drugs w...ere discussed but since she is allergic to erythromycin and reglan is questionable for her due to it's neurological side effects and her already having some neurological components to her overall undiagnosed condition, and domperidone has had limited testing in children, I don't know where we'll end up with that. So, I'm not sure what's going to happen with her still spitting up as she cannot clear her own mouth when it happens and basically drowns on even that small amount she's spitting up. We haven't seen GI yet today, so I'm sure we will discuss more with her.
Feeds are going well. She is up to 50 mL per hour with the goal being 55 and then we'll switch to formula. There is talk of discharge tomorrow after genetics comes to consult, but I'm unsure on that with the spitting up situation we have going on. I'm so ready to be out of her, but I certainly don't want to take her home until we've got all the GI stuff at a manageable and safe level.