HomeAboutPopular PostsE-books Free Printables

Saturday, July 11, 2009

Nothing monumental...

...to report yet. All of Megan's blood tests regarding her organ functions are OK. Her urinalysis was good. Her white blood cell count is double what it should be. I guess this means that she is fighting "something." We do not have her blood culture results to tell us if she has a bacteria growing there yet.

Megan still has no fever. Good. Her oxygenation levels have returned to normal. Good. The medication to stop her vomiting seems to be working. Good. She has not vomited any medications in her g-tube since 9pm last night. Good. She tolerated a small amount of pedialyte in her j-tube last night. Good.

They have started small amounts of her formula in her j-tube today. They are giving her about an ounce an hour and will increase it by an ounce every four hours as long as she keeps tolerating it. She is still taking the anti-vomiting medication. After she gets back up to her regular formula dosage, we will start weaning that to see if she is able to tolerate everything then.

In the meantime, we wait for the cultures to come back and see if that points to the reason why her white blood cell count is elevated. She looks good and is making eye contact and responsive to us. This is good because when she is really sick - she doesn't do that.

That's all for now. Thank you everyone for praying. Boy, do we need it.

Friday, July 10, 2009

Would you believe...

...that Megan is in the hospital again? This has developed so quickly. She was fine until about 8:00pm last night. She started vomiting. That was the only symptom. No fever. She seemed to settle down about midnight and I put her to bed. When I woke to give her 4:00am medicine and catheterize her, she had still been vomiting. Only this time, it didn't look like her normal vomit. I cleaned her up and stayed up with her until this morning.

Megan was already scheduled to see her pediatrician this morning for her previous hospital discharge follow-up visit. So, Ken took her to her appointment. Megan was continuing to vomit for the doctor. The doctor did not like her vomiting, noticed that her weight was lessened again (even though they increased her feeding and she has been tolerating it well for the past two weeks), and decided that Megan needed to be admitted to the hospital.

The doctor ordered blood cultures, urine cultures, a MRSA swab test, complete metabolic panel, liver enzymes, kidney, pancreatic, and spleen functions, an emesis (vomit) test, and x-rays of her abdomen.

All we know right now is that Megan's vomit was positive for blood (We do not know from where at this point. That is why they are looking at all of the tests mentioned). They are giving her medication to try to help stop the vomiting and IV fluids because she is not able to tolerate anything through her g-tube. The good news at this point is that they were able to get a peripheral IV placed and the blood drawn in only one poke (since the PICC line IV was removed on Tuesday of this week). Pray that it stays functional for as long as we need it. We won't put another PICC line in unless the test results warrant the usage of an IV on a long term basis.

Now, we wait and see what we find out and develop a plan depending on the information we get. At best, she may have broken some capillaries in her GI tract from all the vomiting. At worst, they find that something isn't functioning at its best. They may need to do a scope of her GI and intestinal tract. If that is the case we will be going back to Indianapolis. The doctors at this hospital will not perform any surgeries or procedures on Megan. For the time being, we are still in South Bend. I will post more information as I learn of it.

Giving IV Antibiotics at Home

I decided to show this post because we have talked about giving Megan IV antibiotics at home after two hospitalizations. We gave antibiotics from May 14-25, 2009 and from June 26-July 6, 2009.

During the first round of IV antibiotics, we administered vancomycin every 6 hours (4 times per day). During this last round of IV antibiotics, we administered vancomycin every 8 hours (3 times per day) as well as gentamicin every 24 hours (once per day).

I have made a pictoral representation of the process for those who are curious about how giving IV medicine works in the home as opposed to the hospital.

This first picture is of Megan's PICC line-this type of IV is placed in the hospital and is more stable to be used in the home than a peripheral IV (shown in this post), which many of us are more familiar with. PICC lines are typically placed when an IV is needed for usage on a long term basis and when the patient is unable to sustain peripheral IV access (both of these reasons applied to Megan).


The first step in the administration process is to gather your supplies. This picture shows our method of putting all the supplies on a plate. The medication is placed in these "Q-balls" and programmed to infuse automatically for the specified time. Because the medication is refrigerated, it needs to be taken out of the fridge 2-3 hours before it is to be given. (We just refill the plate after each dosage to get it ready for the next one). In addition to the medication, you need sterile alcohol swabs, two or three sterile saline flushes (depending on if you are giving one or two different "Q-balls"), and a heparin flush.


The vancomycin took one hour to infuse each time (larger ball). The gentamicin took 30 minutes to infuse each time (smaller ball).

After the supplies are ready, you need to wash your hands thoroughly. This is important to reduce the spread of germs, especially since the IV exposes the patient's veins to outside elements. Next, you locate the cap of the IV port and hold it upright.


Then, you clean the cap thoroughly with a sterile alcohol swab. And then a second time with another sterile alcohol swab. After the cap is sterilized, make sure that nothing touches it.


Then, you use a sterile saline syringe to flush the IV. Since they come pre-packaged, you just unwrap the syringe, remove the cap (being careful not to touch the sterile tip), and remove any air pockets in the fluid. After the air is removed, the syringe pushes into the tip of the IV cap and turns to lock into place. After the syringe is locked into place, you unclamp the IV and push the saline into the IV until empty.


Next, you unlock and remove the syringe and pick up the connector at the end of the tubing on the medication "que ball" and remove the protective cap before locking the connector into place the same way the syringe locked into place.


Now you are ready to open the clamps on the IV and the medication "Q-ball." Once both of the clamps are open, the medication will automatically infuse for the amount of time the ball has been programmed at the pharmacy. This picture shows the entire ball and tubing with the clamps open.


You can tell the ball is finished infusing by looking at the core. It is a little spongy but will look like a solid line instead of having a clear bulge around it.


After the medication has finished infusing, you disconnect the ball's tubing, clean the cap with a sterile alcohol swab again (because it has been 30 minutes or an hour since you started), and flush the rest of the medication through the IV tubing with another saline-filled syringe.


If you have a second medication to administer, you attach it next. If not, then you flush the IV a second time with a heparin-filled syringe. It comes pre-filled like the saline syringes. The heparin stays in the IV tubing and prevents it from getting clogged with any clots. (If you notice, the saline syringes come with a white cap and label and the heparin comes with a blue cap and label for easier identification. The adult dosages of heparin have a different colored label and cap.)


After the heparin is administered, you just clamp the IV tubing and throw away your empty supplies.

It is an easy process to learn. However, I was nervous in the beginning because I felt a higher level of caution (responsibility) because I was putting something into Megan's blood stream. After a few dosages, I was more comfortable with the process and developed a routine.

Thursday, July 9, 2009

Sunflowers and Roses

Isn't this a beautiful flower?


It came with this beautiful flower.


In this bouquet.


What a way to start our day! Yellow is Megan's favorite color. See her trying to touch the bouquet? What a nice surprise blessing! Thank you, Cathy!



This message is a part of Thankful Thursdays started by Lisa at Welcome to the Nut House. You can visit her blog and also view others who have linked their posts of thankfulness today.



Wednesday, July 8, 2009

To say thank you..

...is not enough. To everyone who helped make this possible...


...we are truly grateful.

And, we can see our basement floor again.

Many thanks also for the person who mowed our lawn last week when we returned home. Whomever you are, we were thrilled to come home to that wonderful surprise.

And, lastly, but not least, thank you everyone for all the dinners and gifts we have received in the past few months. We feel honored and so blessed by your giving.

Saturday, July 4, 2009

Saturday in the park...

I wish it was I'm glad it is the 4th of July!
We're at my parents' trailer and having so much fun!

Playing at the park...




Riding bikes...


Golfing...



Swimming...


Playing games...


Air Jamming...


Did someone forget to give this girl her medicine?


Grilling...


Begging...


Could I please have one of those hot dogs?


Reading American literature...(American what?)...


And, my favorite, Smiling.



Thursday, July 2, 2009

I AM STILL SICK!

Last Tuesday morning (June 23) I went to the emergency room at the local Indianapolis hospital near Megan's children's hospital for the second time. The first time I was diagnosed with mild bronchitis and prescribed an antibiotic, a rescue inhaler, and more of the cough suppressant I had been prescribed from my doctor at home before Megan was hospitalized again. The second time I went to the emergency room, the doctor said that I should be getting better and that sometimes pertussis (aka: whooping cough) is wrongly diagnosed as bronchitis much of the time. He suggested that I may have pertussis, gave me a breathing treatment, and prescribed some steroids for inflammation of the throat and lungs and some pain medication because my ribs and chest had become very sore by then. I have been dealing with this cold, cough, etc. since May 18th.

Last Thursday I came home and had some blood drawn because my doctor at home wanted solid evidence that I had pertussis before he wanted to treat me for it. I got the results today and they said that it is not pertussis. However, my cough is still as prevalent as ever and my back and chest muscles are still very sore. It is hard for me to do anything without coughing. I am having trouble sleeping. And, the pain medication is making me sick to my stomach.

I have gone back and forth from taking different medications, cough suppressants, cough drops, and all of the other medications that I have been prescribed for my condition. I feel very run down, tired, and weepy as of late.

I have no idea what else to do to get any sort of relief from my coughing. I have even resorted to google-ing remedies and such because I feel that I am at a loss for what to do.

I am no longer scared of all the stuff that I am doing for Megan. I just want to feel healthy enough to complete everything that she needs me to do. I do not remember ever having any type of condition such as this before.

I have been very reluctant to say anything this week because I have not been in the best of moods and didn't want to sound like I was complaining. I understand that in trying times (such as everything we are facing with Megan) that I should not be exempt from facing difficulties myself. Yet I have still found myself asking, "If I have to go through all this stuff, why can't I just be well? Why do I have to do all of this stuff and be sick too?" I don't feel strong and empowered anymore. I am tired and weepy. And I can't get rid of it.

Please pray that I will be able to get some relief from this "coughing disease." Whatever it may be. I want to focus on enjoying the extra time that I have been given with my precious daughter.