Updates....

The hospital that we love....
The Doctor we adore!
getting a ticket out of here!
Thanks Ronald McDonald House!!!

crashed at Ted and Danielle's....trying to recover!

Ok.... After blogging several times a day I feel like I am behind! Here is what has happened:

left the hospital last night and took Maddie out for a fun dinner at Max & Ermas. She had a good time but has really no appetite. Maybe ate a quarter of a grilled cheese.... hopefully that will get better as she starts to feel more like herself. Got back to the RMH and let her play in the garden and play yard. It is absolutely beautiful. On of the local landscapers in Cincinnati takes care of it for the house. probably one of the most relaxing play yards i have even been in! What a great break for all of us!

Went to bed at 9! We were all exhausted! Took about a minute before I heard 2 others snoring!! Had a HUGE storm come through and the power went off for 4 hours! I was restless but thankful that Maddie and Jed both slept well.

Got up early this morning so that we could be at the hospital at 7 to get Madison's x-ray before the appointment with Levitt. Had a really good meeting with Dr. Levitt. What an amazing man! He gave us the run down on what is ahead. Said that her xray looked really good. We were kinda surprised as she does not seem to be going as much as we had expected.....suppose that it could just be that she is not eating a ton. Dr. Levitt said that he would like to see her taking no more than half a square of the ex-lax by the end of the month. We were thrilled to hear that. Talked at length about the C Diff. He said that the common denominator in the patients that get it is a slow moving colon.... obviously Mads fits in that category. It is still contagious so we will need to take allot of precautions so that it does not get passed around. they gave us some good tips, so we will take all of those very seriously. We have been instructed that if she begins vomiting or has a fever over 100.5 that she needs to go right to the hospital. We have been informed just how serious this infection is and that the consequences of not keeping it under control can be very extreme. In cases that it can not be controlled, the infected colon is removed. PLEASE pray that these anti-biotic work!!

We arrived at Danielle and Teds this afternoon about 3. We surprised Olivia! She was sooooo excited! Madison has been sleeping for about an hour and will hopefully get caught up a little. She feels warm so we are keeping close tabs on her temp. she is holding right at 99 but is sweating like a pickle..... not sure what that is all about. I am sure that i am a little jumpy after being given all of the risks.

Madison and I will be back in 3 weeks for an exam with Dr. Levitt. That will hopefully be the end of the road for her. Dr. Levitt was so sweet today and said that he was sad that our journey with him was coming to an end. We have really bonded. I am sure that he can see the gratitude that we feel for him and how he has changed our lives. I wish that we could pack him up and bring him with us. I gave him a big hug and thanked him again as we were leaving.... I was looking for the word to express my appreciation for what he has done for us. What do you say to a man that has changed the quality of your child's life forever???? I felt the tears coming so I did not say much....

We plan on crashing her tonight and tomorrow just to make sure that everything is ok with Mads before heading home on Thursday.

Please continue to pray for Madison's full recovery. Her biggest pain right now is related to and awful rash/burn on her bottom from the anti-biotic. We just picked up her prescription for that...hopefully she will get some quick relief.

thank you all for the support these last few weeks..... It has been such a blessing! We will continue to update the blog as we settle back into life at home and get Madison back to full swing!

Nikki

heading to the RMH TOGETHER!

Just talked with Dr. Pena. We have been released from the hospital. We will see Dr. Levitt tomorrow AM at 8 and have another x-ray. They have put her on the oral form of flagyl and she will continue that for 14 days. We also have been put on 1.5 squares of ex-lax because she has not had a BM since Saturday.

We will see how it all goes tomorrow and go from there. We are very anxious to get out of here! It has been 3 weeks since we left home. Hopefully we will get the "all clear" tomorrow and can head on our journey home. We miss Olivia like crazy and can not wait to get her!

We will try to keep you posted as things change. We are not sure what the internet connection is at RMH.

Thank you soooooo much for all of your prayers these last few weeks. They have been extremely difficult. It is good to be on this side if the mountain! Hopefully the days ahead will be easy!

love you all!

Nikki

talked with Dr Pena

Passing time playing "smack the balloon"!!

"I don't want to eat and I don't want you to take my picture"

Talked with Dr. Pena. He said that he is going to be very cautious with her as c-diff is a "very serious and dangerous" bacteria. His concern with her is that she is emptying her colon completely so that the bacteria is being eliminated. That is trickier for us then others as we are not yet sure what it will take to have her empty. They are letting her eat and she is actually hungry and has had 3 meals today. She is not real interested in drinking so they turned off her IV to see if that would encourage her. We will take an xray in the morning to see what it looks like inside.



Jed has as we would say at home "ants in his pants". i sent him away to the movie theater to see the new batman movie. I could tell that he was going crazy! Hopefully that will get it out of his system and he will come back tomorrow minus the ADD!!



Mads and I are going to have a pajama party. The new High School Music talent show starts tonight so we will snuggle in together and watch that.



It has been good to have so much quality time with her....one of the few perks in all of this!



We will let you know what x-ray shows tomorrow!

Nikki

not a whole lot of new news...

Thankful today for my beautiful family!

So here we sit waiting for answers and trying to keep Madison entertained. They allowed Madison to eat this morning. She had a bowl of cereal. She seems to be doing well. They took an x-ray about and hour ago so we are waiting to hear how that looks. I am not sure if we will see a doctor today since it is Sunday. I am thankful that Dr. Levitt returns tomorrow. The resident told us that she has been emailing him to keep him current on her conditions so that is good.

I need to stop reading about c-diff. The internet is a blessing, however, sometimes it gets you all anxious. I am thankful that we were able to spot this bacteria early on as it looks like it can be extremely serious. Hopefully they have it under control with the new anti-biotic and that she is on her way to recovery. I had heard today that they will re-culture and make sure that it is under control before releasing her. If that is true we still have several days here at the Cincinnati Children's Resort! (another nurse just told me that it could definitely be another week or so.... UUUGGGHHH)

I received the sweetest email from my cousin Sonya today. I am so impressed with her unbelievable maturity. Sonya is going to be a Sophomore at the UW this fall. These are the words that she wrote: (hope you do not mind that I shared Sonya... it was just so great and made me cry!)

"I was at a Beth Moore conference in Minneapolis this weekend with my mom and some ladies from our church. I don't know how familiar you are with Beth Moore, but she writes some amazing bible studies and books geared towards women. So needless to say it was an incredible weekend.

Her main focus of the weekend was "Life between a Rock and a Hard Place". Over and over, I couldn't help but think of you guys and the struggles you are enduring. One of the main sections we kept coming back to was Hebrews 12: 5-13. I specifically thought that these verses might give you some encouragement.

Hebrews 12: 11-13 "No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it.Therefore, strengthen your feeble arms and weak knees.Make level paths for your feet,so that the lame may not be disabled, but rather healed."

I just thought that was powerful to be able to have hope and look forward to the "Later On", the other side of this mountain. The point where a harvest of righteousness and peace awaits your amazing family!"

It was so encouraging to read her email this morning. I slept at the RMH last night and woke up this morning with a lot on my mind. I think that God has really been "strengthening my feeble arms and weak knees" these last months. I have been very humbled these last few weeks in particularly. How is it that we get so caught up in things that are not important. I remember feeling this way several times after a missions trip overseas. You come back though and you some how go..."but that is there, we live in America". So I think what has really affected me this time is being here in America and seeing all the hurt. Being made aware of all that I have even in the roughest season of my life.

I have seen woman so rail thin, unable to eat because of the dispare that they are feeling by having a child that may not ever go home again. And I agonize over being 20 pounds overweight.... To be so caught up in how "bad" your child is and then walk into the RMH and see a child that will never eat, talk or walk again. To hear conversations of heart transplants, cancer and death. How can you ask why? We have struggles, no doubt- but, man o man could it be worse. To look out your window and see some of the roughest neighborhoods probably in the country, people with no hope and addictions that paralyze them. To walk through the business sections of the hospital and see signs for "financial counseling". To know that there are parents who had to chose between losing a job, or staying with their child. People with out insurance that will lose everything they had, on top of having a child that is sick.

So we will move on. Thankful at every turn, even when headed in directions that we would rather not go, because we are blessed. Confident that God is getting ready to produce a harvest of righteousness and peace for our family. And you know... I am thankful for the journey, no matter how painful. I have learned lessons that never would have been learned in the comfort of my home with healthy children.

Be careful dear friends when you pray for God to teach you patience and humility. Sometimes we only can learn when placed in the fire.

here is what we have.... c-dif

so...we remain in isolation!!


Clostridium difficile
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Clostridium difficile

C. difficile colonies on a blood agar plate.
Scientific classification
Kingdom:
Bacteria
Phylum:
Firmicutes
Class:
Clostridia
Order:
Clostridiales
Family:
Clostridiaceae
Genus:
Clostridium
Species:
C. difficile
Binomial name
Clostridium difficileHall & O'Toole, 1935
Clostridium difficile (pronounced /klɒsˈtrɪdiəm dɪˈfɪsɪli/, also known as CDF/cdf', or 'C. diff') is a species of bacteria of the genus Clostridium which are Gram-positive, anaerobic, spore-forming rods (bacillus).[1] C. difficile is the most significant cause of pseudomembranous colitis,[2] a severe infection of the colon, often after normal gut flora is eradicated by the use of antibiotics. Treatment is performed by stopping any antibiotics and commencing specific anticlostridial antibiotics, e.g. metronidazole.

some answers....

Just saw Dr. Pena. One of the test did come back and it was positive for the bacteria. We will continue to do the intravenous antibiotics and take it very slow. She will get another x-ray in the morning. She did get a low grade fever again today. Interestingly enough it was about half hour after she had something in her system (sprite) for the first time in 24 hours. It will be very interesting to see how things go as we start to introduce foods back in at some point.

Jed is at the RMH doing a little bit of laundry and resting. He is going stir crazy here. It is much harder since we can not leave the room. The days went much faster before when we could wonder around and use the playroom.

If Maddie stays the same the rest of the evening I am going to head over and sleep at the RMH tonight. We will give you info as we receive it.

todays update...

Mads had a good night sleep last night. Slept from about 9 until 6. Had an xray done this morning and they say that it looks pretty good. some gas still in there. Dr. Pena said that he does not want to start food again yet. Today she will do clear liquids and see how that goes. They expect the stool sample results tonight or tomorrow morning. The resident said that what they are looking for is a bacteria that is a result of the antibiotics that she was on after surgery. Something about your good flora being messed up.

We are assuming that we will be staying at this fine home away from home several more days. If there is no food today then hopefully that will happen tomorrow. I am confident that they will not let her go within 24 hours of eating as they will want to make sure that everything is working. The resident said as she left " see you on Monday". I almost cried!!! Do you think that 5/3rd bank will give us a reduced mortgage this month since we have not been home???!!! The days go much slower with the isolation because we can not go to the playroom or do anything fun. Child life has been good about bringing crafts and games to the room. Trying to keep all of us from going stir crazy!

Madison seems pretty comfortable. She is still not interested in drinking anything. I am wondering if she is fearful that she will get sick. She has only complained about belly pain a few times today. We will keep you posted as we get any new info.

Thanks for the prayers,
nikki