Homeward Bound

Dustin was moved to the general pediatric floor on Tuesday night!

Yesterday, one antibiotic was dropped from his regimen and the other antibiotic was switched to an oral dose. At this point, the withdrawal medications continue to be administered and were actually tapered again. Dustin's IV and feeding tube were also removed yesterday! So, at this point, Dustin is completely unplugged!

We also saw a much more active Dustin yesterday. He actually crawled around a bit on the floor mat. He also sounded happier--we heard much less of the moaning sounds that he had been making (what a relief for mom and dad)! PT worked with him some more yesterday. However, he was a bit tired from all of the other activities earlier in the day and was fussy for the physical therapist. We will receive a referral for continued physical therapy, once we return to Lexington. I am hoping that this hospital stay will not set him back too much developmentally. Overall, he has made amazing progress physically during the past week. Since he has lost at least 3 pounds and most of his muscle mass during his time here, it will take a little while for Dustin to build up all of his physical strength.

The infectious disease physicians ordered blood work that will be tested to determine if Dustin has an immune system deficiency that may have contributed to his septic state. We will find out the results of these tests in three weeks to a month, when we return to Vanderbilt for a follow-up visit with the surgeons and the infectious disease physicians.

Today, we are preparing for a discharge order. All of Dustin's medications are being administered by us orally (even one at 1:00 a.m.--Aaarrrgghhh); he is eating better and slowly getting his strength back. We believe that we will be spending the weekend at the casa de Anderson in Lexington, Kentucky.

And so, there will likely be a lull in blog entries (at least for a few days (ha)). I'm looking forward to writing boring old entries such as those that includes recipe for the latest dishes enjoyed by my family. Most of all, I am forever grateful that this story has a most happy ending!

The Bottle Holder

If you guessed that the difference in the photographs posted yesterday is the feeding tube, you guessed correctly!

We did have a minor setback after I published my post last night. Dustin had to have an NG tube put in so that the narcotics for his withdrawal protocol could be administered. Unfortunately, there was simply no keeping the antibiotics down when administered orally.

We did have some success today mixing the narcotic with applesauce. Dustin did not know the difference and ate it all up!

This morning, Dustin decided to take his own bottle! This was much to my delight, since I was concerned that he was getting dehydrated. This is just another sign that our little man is a strong willed, independent little boy!

There have been no real changes today. We were able to unhook Dustin from all of his monitors and walk around our pod in the ICU. This was great, since Dustin seems to be very bored with his current surroundings. He has been playing more with us today, as well. Also, his physical therapist brought him a floor mat for some floor time!

We are still waiting for a room on the floor. We're looking forward to a change of scenery! I'm also looking forward to putting Dustin in a wagon and wheeling him outside (for the first time in 22 days)--which we believe is permitted on the floor!

Our Last Full Day in the ICU

Happy Memorial Day!

I hope that you were able to enjoy some great grillins' today and celebrate all of the individuals who have worked hard and risked their lives to protect the freedom that we as Americans are able to enjoy.

I am looking forward to the day when Tim, Dustin and I can enjoy a cook out on the deck, with the patio furniture that is my mothers day and birthday present! My mouth is watering just thinking about it.

Well, before I re-cap the events of today, below are two photos of little man. See if you can tell the difference. It is subtle, but it's a big deal!
























So, if you think that you know the difference between the two photos, email me or leave a comment to the blog and let me know your answer. There's no prize involved. Don't worry, if you're stumped, I'll reveal the answer tomorrow.

Now that I've held you in suspense:

• Dustin remains slow to drink his milk. I had decided to wean him from breastfeeding at this time, since it had been awhile since I'd breastfed him. I believe that we've been engaged in a battle of wills the past few days--Dustin will not drink from a bottle and I was intent on weaning from the breast. Today, Dustin won the battle of the wills. Weaning will be saved for another day.
• Dustin remained afebrile throughout the night and all day today!!
• Dustin was active again today--bearing weight on his legs, sitting on my hip to observe the world and playing in his crib.
• The doses of narcotics were switched to oral medications. Dustin refuses to take the medicine by mouth. He gags himself and gives them right back.

The biggest change today is the change in the photo, above. We are praying that this change will remain a constant, since Dustin is refusing to take a bottle and will not take his medications by mouth.

We believe that Dustin will be moved to the regular pediatric floor tomorrow. This is a good change, since Dustin is well enough not to require intensive care. Tim and I are comfortable with Dustin's progress and agree that he is ready for the floor. This change will be nice for Tim and me. We will have our own bathroom/shower in our room, four solid walls (not glass) and a bed that will accommodate both Tim and me. This is also the next step toward getting us home!

Earlier this evening I spoke with the mother of a 14 year old girl who has been in the ICU for two weeks. The daughter has some type of brain infection (the exact infection is unknown) that has been causing her to have seizures. She has been in a coma for almost two weeks. Yesterday, one of the neurologists asked her father if the parents have considered organ donation. Please pray for a miracle that would end the seizures and infection that this little girl, Taylor is experiencing.

Hearing stories such as Taylor's reminds Tim and me how fortunate and blessed we truly are. We are thankful for your prayers and support that have brought us through this experience. We believe that your prayers have been heard, that God has a plan for Dustin and that this story will ultimately bring Him glory!

Day 20?

Here is our little monkey!




















I think (?) that today marks our 20th day at Vanderbilt Children's Hospital. It's been so long that the days are blurring together and I'm loosing track. We have been at the hospital since May 5.

Today was a good day. Here's a brief re-cap:

• Dustin was afebrile all night and has also been afebrile today as well (so far). He did not have to be given any Tylenol or Motrin and no PRNs of morphine were administered.

• Dustin was playful this morning and tolerated a 25 minute PT session quite well! Dustin's motor skills are less coordinated, but should improve as he continues to gain strength over the next few days and once he is weaned from the narcotics.

• The ID physician believes that Dustin will be sent home with one/several antibiotics to continue to reduce the inflammation in his lungs.

• Dustin's withdrawal treatments were not tapered today (as compared to yesterday). Since Dustin had several fevers yesterday that arose just prior to the time when his medicine was due and the temperature dropped shortly after the administration of the narcotic, it was thought that the continuing fevers from yesterday were withdrawal symptoms.

• Dustin's CRP marker was down this morning (high levels of CRP in the blood means that there is infection in the body somewhere).

• Dustin's chest tube was removed today.

• A chest x-ray shows that Dustin's lungs are okay following the removal of his chest tube.

And so, we continue to see much progress. One big milestone toward our return home was successful extraction of the chest tube. It would appear that we've met this milestone.

After the Memorial Day Holiday, a speech therapist and/or developmental specialist will visit Dustin. This morning during rounds, I expressed some concern that Dustin is not using the "ta", "da", "ma" sounds that he used prior to his surgery. Instead, he is using an "uh" and not too much else. The physicians did not seem terribly concerned about this issue. Since Dustin has been on many different medications and is continuing the withdrawal protocol, his lack of motor coordination and language choices may be due to his medicated state. Nevertheless, we will be able to speak to someone more knowledge regarding the possibilities next week!

Thank you for your continued prayers for Dustin, Tim and I. We know that God has heard your prayers and is demonstrating His faithfulness in a very mighty way!

Saturday Smiles

Look at this smile!

We had a few smiles from our little man today!

Today was pretty much status quo. Dustin did continue to spike a fever and new cultures were drawn to check for the growth of any bacteria that might be causing an infection. Dustin's chest tube was turned to water seal--the first step toward removal of the chest tube (AND US GOING HOME)!! A chest x-ray will be performed in the morning, which will show how Dustin's lungs responded to the water seal.

Dustin's withdrawal taper has been modified today--to bring his dosage of sedatives down. This too, will bring us closer toward going home. There is a delicate balance between administering the withdrawal protocol and reducing the amount of the narcotics administered to Dustin and helping to manage any post-operative pain that Dustin may be experiencing (the nurses have told us that children who are able to identify the source of pain all say that having a chest tube in is very painful).

Dustin continues to take two kinds of antibiotics. There is currently discussion to modify one of the antibiotics to be replaced with a broader medication that is certain to cover a broader scope of bacterias that could be the source of Dustin's continued fevers. The fevers may also be a symptom of withdrawal.

Today, we were able to hold Dustin again and he ate his cereal for the first time since his second surgery. His skin is a beautiful pink color, once again!!

We are praying for continued healing for Dustin, quality rest so that he has strength and no additional infections or other bumps in our journey home!

A bit of Saturday Smiles for you:

The crosswalks in Nashville each have pedestrian signals which light up when it is appropriate for pedestrians to cross the street. In addition to the light, the signals also include a loud annoying chirping noise. Below is a conversation that I had with my husband regarding the pedestrian signals in Nashville:

Me: The noise from the crosswalk signal is loud and noisy. It is annoying and I do not like it.

Me: I suppose the chirping noise is for deaf people.

Me: Oh, deaf people can see.

Hmmm....ICU psychosis?

Surgery Number II

On Wednesday, a CT scan revealed that Dustin has a condition called pleural empyema in the right lung where he had the initial surgery. An empyema is an accumulation of pus in the pleural cavity. Most empyemas arise from an infection in the lung, such as pneumonia. The only treatment for an empyema is to remove the drainage from the infected site. This infection is a secondary infection and is not the same as the one that caused Dustin to enter into septic shock. There remains no known source of the first infection and we will likely not ever be able to determine its origination. Today, the ID physician indicated that it is very unusual for a child to obtain a secondary infection, similar to Dustin's scenario.

And, so, it was determined that Dustin would undergo a second surgery to remove the pus accumulation. This surgery (fortunately) was able to be performed laparascopically. Another hole was made in the side of Dustin's chest and the pus was removed. Another chest tube was inserted, which will continue to drain fluids from Dustin's lung. Some inflamation does remain in Dustin's body, for which the chest tube will help. Dustin's inflamation markers (white blood cell count and CRP) increased again this morning, simply indicating that Dustin continues to fight infection. The physicians are very pleased with Dustin's progress and believe that he is on the right dose/type of antibiotics to heal the infection.

Following this surgery, Dustin looks so much better. Dustin's lungs also sound more clear than they have in a very long time. As the fluid continues to drain from the site, the physicians and nurses have noted that he is sounding more and more clear. The photograph here is of Dustin with his breathing mask. He wore this through the night and was weaned from the oxygen by early morning.


At this point, Dustin will remain on the chest tube until he shows that he is ready for it to be removed (through monitoring output and testing by turning to water seal). He continues to receive methedone and ativan for his pain. The withdrawal taper will likely not begin until the chest tube has been removed. He will also remain on antibiotics for a few days.

It appears that we might finally be on the home stretch!

We continue to pray that we do not experience any set backs and that Dustin fully recovers from his sickness.

We have been in Vanderbilt Children's Hospital for 18 days now. Quite a long time. However, we are so blessed and grateful that our little boy has made it this far. When I was pregnant with Dustin and after Tim and I had chosen his name, I found a book that included all of the meanings behind names. Dustin's name means "brave warrier". Little did I know just how Dustin would prove, at such an early age, what a very brave warrier he truly is.

It has been quite a roller coaster ride the past 18 days. Life in the PCCU is so uncertain. We have learned that no two days are alike and that each day may hold exciting progresses or heartsinking disappointment. We do know that there are many families who are encountering very challenging circumstances. One couple's baby has been in the hospital for 16 of her 22 months of life, enduring a total of 35 surgeries during that time frame. I cannot imagine such a life.

And so, onward we press, enjoying every moment of our little man's life and counting ourselves very blessed indeed.

I just read the following quote on Beth Moore's blog that I believe is quite appropriate for the circumstances--and I certainly intend to try to live out this very good instruction:

"Quit living as if the purpose of life is to arrive safely at death. Grab life by the mane. Set God-sized goals. Pursue God-ordained passions. Go after a dream that is destined to fail without divine intervention. Keep asking questions. Keep making mistakes. Keep seeking God. Stop pointing out problems and become part of the solution. Stop repeating the past and start creating the future. Stop playing it safe and start taking risks. Expand your horizons. Accumulate experiences. Consider the lilies. Enjoy the journey. Find every excuse you can to celebrate everything you can. Live like today is the first day and last day of your life. Don't let what's wrong with you keep you from worshipping what's right with God. Burn sinful bridges. Blaze a new trail. Criticize by creating. Worry less about what people think and more about what God thinks. Don't try to be who you're not. Be yourself. Laugh at yourself. Quit holding out. Quit holding back. Quit running away. Chase the lion."
- Mark Batterson

A Better Day!

Dustin during his PT assessment.





















Dustin playing with Champ.

This morning, daddy and mommy enjoyed the first Dustin smile that we have had since May 7!!!

I was talking to Dustin very close to his face and he smiled big enough for me to see his teeth. Tim came over and joined in our morning fun!

The smile that we received this morning was incredibly encouraging! We have missed our little man and we believe that God gave us this gift to demonstrate that our normal little guy will soon be better and back home, where he belongs!

What’s new since my last post:

• Dustin has been on a withdrawal protocol since Sunday morning. Dustin continued to display discomfort and agitation between the injections of narcotics. The physicians thus ordered morphine as a PRN (low doses administered on an as needed basis) to treat Dustin’s withdrawal symptoms.

• Dustin continues to have fevers. It is unclear if the continued fevers are related to Dustin’s withdrawal or if the fever is evidence that Dustin continues to fight an infection.

• Dustin continues to experience discomfort. This could be related to withdrawal symptoms or the ongoing fever.

• Dustin met his goal of taking one and one-half ounces of breast milk through his feeding tube each hour. Since I’ve not been able to get him to take fluids orally, the feeds were turned off and we will see if little man gets hungry and will then take the fluids orally. As of Tuesday afternoon, Dustin is now drinking his milk through the bottle!! Perhaps we’ll try some cereal this evening.

• On Monday afternoon, Tim and I attempted to feed Dustin some pedialyte. Dustin was not at all interested. Our favorite ICU nurse asked us if we’d ever tried the Pedialyte. He said it is very distasteful. Well, we’d never partaken in a drink of Pedialyte. The nurse proceeded to pour a portion into very small “shot” glasses. Mom, Tim, the nurse and I all had a round. We toasted to Dustin and threw back the Pedialyte. SO NASTY!!!!

• Yesterday, little man rolled to his belly for the first time since May 10. One side effect of morphine is itchiness. Little man experiences this side effect terribly and attempts to scratch his nose and find comfort by rolling around.

• The MRI came back normal. I asked whether the physicians were able to see evidence of the higher intelligence possessed by Dustin. Apparently, they were and, as it turns out (according to the physicians), the intelligence is attributed to mother (me)! (HA!!)

• There has been much discussion about moving Dustin to the general pediatric floor. Since Tim and I have been very expressive about the care that Dustin received on the floor and the concern that we continue to have regarding his febrile state, they have agreed to “wean” us from the PCCU. Essentially, the PCCU nurses are now providing evaluations at the same frequency as would be provided on the floor. Since the PCCU has physician coverage 24/7, we will continue to have access to a physician if there are any questions or concerns relating to Dustin’s care. This provides us with comfort, since there remains some question as to the source of the continued fevers (withdrawal symptom or infection). We are beginning to discuss where Dustin will be moved (which hospital floor) and how his care will be managed. Tim and I would like for Dustin’s medical care to be handled by the medicine doctors, rather than the surgeons. We would still expect the surgeons to round on him daily to exam the surgical site, his respiratory responses and to respond to any questions from nurses/medicine physicians and us.

• Dustin had his first PT/OT session today. Dustin seems to be favoring his right side and we will work with him.
  

And, so, overall we continue to see much progress. The progress is slow. However, we’ll take progress over regression any day. We are hopeful that the PCCU team will soon make a determination regarding the source of Dustin’s fever and that the correct combination of medications will be administered to treat Dustin’s withdrawal symptoms.

We are so very thankful for all of the thoughts and prayers that have been lifted up on behalf of Dustin. We are seeing the evidence of your prayers!! I am saving all of the emails and comments that we are receiving so that when we tell Dustin this story we can show him how much he is loved and the awesome power of prayer!

Dustin resting in his bed in the PCCU.