We are home!

YAY!! we made it home!

WE still have a bit of a read ahead of us, but we are happy to be home :)

Here are a few pics of Alivia's PICC Line and bag/machine

Doing better :)

She seems to be doing better today!! We are getting some smiles out of her :)

She had a barium study done today to see if the clot was allowing liquids to pass through. Unfortunately, it showed that there was just a very small amount of liquid pass through. This was good and bad - Good: we can now take the NG tube out! and they are going to let us go home in a day or two if we are comfortable with it. Bad: we are going home with the PICC line in and will be managing her TPN bags and such from home :(

No good news yet

The last few days have been very stressful! I wish I could say she is feeling better, but she isn't yet. They finally got the PICC Line in her and started nutrition bags Sunday night. Monday much of the same, just a waiting game. We spoke to hematology and immunology about her slow blood clotting times and the yeast in her belly and other tests. There will be more testing over the next few days. Our Tuesday morning ultrasound showed she still had pancreatitus, her bile duct was still enlarger and now her gallbladder is enlarged also. Also, the blood clot has not changed in size at all, still blocking the whole intestine. We are managing the pain still with morphine and phenergan.

Still at Riley

Alivia has a hematoma (blood Clot) blocking her small intestine. This is causing a lot of pain and problems with her other organs. Since her intestine is blocked her pancreas, gulbladder, and liver are all dumping their fluids into her tummy and that is what she has been vomiting.

Friday:

Morning - CT scan - Showed Hematoma
Afternoon - NG Tube put in so she is no longer vomiting the fluids (tube down her nose and into her stomach that is hooked up to a pump, used to pump out the fluid in her belly)
Evening - Still vomiting with NG tube

Info:
Hematoma in duodenum 3x3x6 cm
dilated bile duct (from liver to small intestine)

Plan:
bowel rest (no food or liquid)
NG suction
Pain control (Phenergan - nausea and sedative)
IV antibiotics
ultrasound to see size and make it easy to follow with future ultrasounds
take labs to check clotting of blood
daily labs: white count, hemoglobin (make sure she is not loosing to much blood), liver and pancreas
PICC Line (iv nutrition fed into large vein hear heart)

Guessing 14 days to recover

Saturday

Morning - labs and still vomiting
late morning - meet with peds surgeon (found out NG was coiled in esophagus, they replaced it and flushed it) also talked about case in case of surgical needs
Late morning - meet with GI team

Info -

Her sodium levels are low (not sure why)
She has developed sever pancreatitus
liver is inflamed and bile duct is 2 x its normal size
managing her pain with morphine and the phenergan

Plan:
PICC Line tomorrow for nutrition
manage her pain to try to keep her comfortable

Alivia is back in the hospital

We got re-admitted in the hospital tonight! Alivia is very sick :(

Here is the timeline:

Tuesday - procedure, doing great
Tuesday night - Started running high fever of 102 and in a lot of belly pain (called on-call DR, said to wait it out till morning)
Wed morning - still high fever and lot of pain
Wed afternoon - went to get xrays or belly and chest - checking lungs and for obstruction or tear in her belly from the GI
Wed night - started vomiting (keep in mind she has not eaten since Monday, due to procedure and not feeling well)
Thursday morning - still vomiting and fever
Thursday early afternoon - heading to Riley ER to meet DR
Thursday early evening - Admitted to Riley Hospital

When we got to the hospital Alivia was severely dehydrated and lethargic. They put and IV into her to draw blood but were unable to get any due to the severity of the dehydration. They then pumped 2 bags of liquid into her and then, after a lot of trying and praying, they were finally able to slowly get blood. They decided since she was still vomiting, dehydrated, and in sever pain in her belly when they touched her that they would admit her. After they admitted her she got more chest and abdominal xrays.

She has continued to vomit and be in sever pain all night. She is vomiting stomach acid and bile, as she still has had no food and they are not letting her drink since they do not have a cause yet. She is finally taking a short nap. The anti-nausea med (Zofran) she is on does not seem to help.

What DR said:

1) trying to rule out any tear or complication from the GI
2) may just be a virus
3) in very rare cases a hematoma (blood clot) will develop in the intestine not letting things to pass through causing vomiting.

More test in the morning

Alivia's 1st hospital procedure

Today Alivia had her first hospital procedure done, an Upper GI - they are looking for ulcers, food alergies, or things that would cause her reflux. We got to Riley Hospital for Children at 8:30am to check in. She was taken back for the procedure at 9:15 and was done by 9:45. It was a pretty quick and simple procedure. They scoped from her throat down into the 1st few feet of her small intestine, taking biopsies as they went. The doctor said that for the most part everything looks pretty good. They found a yeast infection in her stomach and were going to run tests to see what caused it, other than that we just wait to see what the biopsies show.

She did very well before and after the procedure! She is such a brave girl! It took her a little time to come out of the anesthetic, she was pretty groggy and nauseous. Now that we are back home her belly is yucky but for the most part doing really well!

Here is a picture of before and after the procedure :)