Havi M. Dennis

Havi had her strongest grip ever on my finger today as she entered the surgical suite with the anesthesia team. Tears streaming and repeating, “I’m scared.”

Is this a potentially lethal problem? Infection is hard to manage in uncomplicated situations. Typically you get an infection in an organ such as the skin (cellulitis), lungs (pneumonia), sinuses (sinusitis) and so on. When the infection enters the bone it is called osteomylitis.

The blood supply to a bone is poor. Consequently it is difficult to get antibiotics to the infected bone. As the bacteria eat away at the bone some of the bone dies. This necrotic bone is like a coral reef. The reef provides protection to some of the smaller creatures from some of the larger creatures The bone, especially the necrotic bone, protests the bacteria from the antibiotic. The bacteria can live in a state like suspended animation. They wait for the antibiotics to stop and then they feed and multiply.

This has been happening in Havi’s chest since her open-heart surgery. She has been on several courses of antibiotic therapy and huge doses of steroids. The two weeks prior to this admission was free of antibiotic therapy. The bacteria started eating and multiplying. Havi has been fortunate so far. It looks like her body has been competent in keeping the infection walled off and out of her lungs and heart. If the infection invades her heart it will be difficult for her, for us.

Is this a potentially lethal problem? Yes.

Havi will need a more extensive surgery in the next few days to clean out her sternal wires, pacemaker and associated wires and any bone that isn’t removed today. Dr. Paliotta will need to put new pacer wires in and she will get a new pacer in a different location.

Can she survive without a sternum? Sure. She won’t be a kick boxer. She can do very well if we can contain this to the level we think we are dealing with.

One thing that Havi has taught us this time is that we don’t know what is happening. Just when we think the waters are calm she has a surprise for us. Deborah and I know the words of Winston Churchill: “This is not the end. It is not even the beginning of the end. It is, perhaps, the end of the beginning.”

Please pray for Havi.

Havi is going back to surgery this afternoon. She will have a new sponge put in place. They expect that they can work her into today’s schedule at 14:00 to 15:00.

Please pray.

Havi slept well.  She is starting to get very discouraged.  The wound vac quit working yesterday evening.  You could see a change in Havi’s spirits.  After the ordeal of trouble shooting and then replacing the suction device it didn’t run for very long.  This problem is quite difficult to explain to my daughter.  ”We did all this stuff that hurt you and then turned off the machine.”  That doesn’t really work for her.

We don’t have a plan as of yet.  Waiting is the order of the day.  I’m trying to keep Havi engaged.  Deborah was up until 04:00 with nausea and vomiting.  She says, “Just nerves.”

Please pray for Deborah and Havi.

This morning started early, before 06:00 with an alarm on the Vacuum Assisted Closure, “VAC” system.  The alarm was “Blockage Alarm Therapy Interrupted.”  I spoke with the medical student, the pediatric surgery fellow and a mid-level pediatric surgeon.  I also spoke to the nurses, asking for assistance fixing this issue.  The solution offered was to simply change the canister that collects the suctioned fluid.  After more than an hour spent trying to find someone willing to do the exchange of the canister and trying to find a canister it was finally replaced.  Unfortunately the time delay was too long and the dressing lost the seal around the wound.  Now it is drawing air across the wound, making a sound that is scaring Havi.  I’m still waiting along with Havi.  Her question, “When are they going to come?”

I have asked our nurse to page the resident, fellow or attending.  I’ve lost my patience with these delays.  I don’t know how a non-medical family gets care here on the floor of the hospital.  The “NOT MY JOB” attitude is so far from what their signage would have you believe.  Please just transfer us to the ICU so we can get back to the staff that can make a difference.

Havi is back from surgery and xray. She is resting comfortably in the room. I asked if she is afraid and she said no. She is bored. Pain is not an issue at the moment.

I saw the chest CT with the radiologist. There has been a good deal of damage to her breastbone. I spoke with Dr. Ward after he completed the TEE (trensesophageal echo) and there are not any concerns from a mechanical standpoint. It does not appear that there is any infection on the valve or the area around the heart.

Pacemaker wires may go through the area of infection. If this is true they will, of course, need to be replaced. We have not talked with Havi’s team about this in detail. It is too early to know for sure. We are lucky to have all the great team of doctors, too many to list. Thank you Dr. Ward, Dr. Paliotta and Dr. Overholt. Where would we be without the team?

Thank you to our family and friends. I know that I have not always been on my best behavior. Thank you to those that looked beyond my shortcomings.

Please pray for Havi.

Here we are in recovery, waiting to go to the CT scanner. Havi is awake and alert. She said she is not having any pain.

Dr. Tuggles, a pediatric surgeon, opened her skin over her chest, down to her breastbone, the sternum. Havi has two holes in her sternum and there is infection underneath the bone. He placed a vacuum drain over the incision and we will get a CT scan to define the extent of the infection.

Dr. Ward did a transesophageal echo and Havi’s heart looks really good. If Havi continues to have good fortune she will not have much spread of infection. The vacuum drain and the antibiotics will be successful in clearing this over the next six weeks. If not, it will be time for another, more complicated solution.

Please pray.

Havi is back to the surgical suite.  She is going to have an incision made into the infected area of her chest where the initial surgery was done.  We pray that the infection has stayed away from the bone and the inside of the chest.  We will know more later.

Please pray.

What a complicated day. Havi has developed a skin infection or cellulitis. Given her history of being in the hospital and clinics we mist treat her for the worst bug, Methicillin Resistant Staphyloccus Aureus, MRSA. MRSA is one of the super resistant bacteria. It requires treatment with Vancomycin, a drug that must be given intravenously.

PICC line: A Peripherally Inserted Central Catheter. This is a special IV that is inserted under sterile conditions. It can stay as long as necessary. You can use it to give medicine or draw labs. Once it is in the crying is over.

Havi is getting her first PICC line as I craft this post. She has a cellulitis at her midline incision. We don’t know how or where she got the infection. We don’t like the thought of taking a chance with oral antibiotics. We have learned to go first class the first time with Havi. It is a little bit harder for all involved and it reduces the risk of a bad outcome. The PICC line will facilitate getting the IV antibiotics at home.

There are many good days left in this year. I know that Deborah is exhausted. She has beeline practically living in Havi’s room, doing her nursing care. I help when I can. Havi is still getting better. She is strong. She is in a lot of pain right now.

Please pray.

I’ve not put up a post in a few days. Havi has been making good progress. Yesterday she had a temperature spike, most likely viral. Today she is not feeling well. She has developed some blood streaks in her sputum. I’ve started her on antibiotics.

Havi has made great progress. Two weeks ago we would have taken her to the emergency department. Now we need to keep her focused on staying in bed. She has a school project that she is wanting to complete.

Deborah has continued to do most of not all of the work with Havi. I don’t know what I would do if she were not here to help with Havi. There is so much to do and not much time. Who says thank you at the end of her day? I can see where Havi gets her fight.

I hope to go to a more relaxed schedule with these blog entries. If I can post every 2-3 days I will have more to share. With the daily posts and Havi’s good progress there has not been a lot to add on a daily basis. Deborah has a good routine established. The days bring strength and hope for a complete recovery.

Deborah is getting her tomatoes in the ground today. It is the latest she has been since we moved in, typically she plants on the 15th of April. We will have some good tomatoes this year if all goes well. Deborah has a green thumb.

I’m hopeful that Havi will be ready to travel again by mid-July. Havi loves to go to Washington and we hope to travel there to visit our friends, to get a break from the house and to relax. There has been very little time to relax so far in 2010.

Thank you to all who check the blog, who think about us and who pray for Havi’s recovery.

Please pray.

Havi is starting to ask questions. She is asking Deborah and listening to the information, processing it and asking me the same question again. Deborah and I have been talking and it is amazing how Havi is trying to make sense of what has happened to her.

I was spending time with her yesterday afternoon and she asked about her tracheostomy. “Why did I have this?” On the surface that seems very innocent, inquisitive and appropriate. Once I started thinking about it I could barely contain my tears. Havi explained to me that she does not remember getting sick. She said, “All I remember is holding my arms out.” I have that memory, Feb. 15, 2010, placing her on a stretcher in the emergency department. She reached her arms out to me, I didn’t know if it would be the last time.

Havi remembers holding her arms out, they were all swollen. This must be a memory much later than mine. She didn’t do this until after her surgery, her dialysis and being weaned from her sedation. Why do I not remember? She held her arms out to Deborah. The bond that this child has with her mother is unmeasurable.

Havi does not remember anything about getting sick. When Havi was in the ICU, the second day, Deborah and I had a very difficult talk. Will Havi live? Will she have any brain damage? What responsibility do we have to Havi? These are questions we struggled with for days. We agreed that she should not be allowed to wake up before her surgery. I can remember talking to Dr. Gormley about keeping her sedated between her initial presentation and her surgery. His reply, “You couldn’t pay me enough to wake her up.” Thank you Andy. I’m glad that Havi doesn’t remember.

Deborah has done a fantastic job with Havi since Nanny left. We spoke with Nanny and Larry yesterday. When they left they took the Miss Havi, the river cataraft with them. Larry has been getting it ready to go and as I type this he and Nanny are on the Kalama river in Southwest Washington. They are fishing for Spring Chinook salmon. I am eager to hear how they do, if the boat still floats!

Havi has gained her pre-illness weight and two pounds back. She is looking better than I would have ever dreamed. She is going up and down the stairs with no assistance (we stand with her just in case something goes wrong). Havi is doing well in making up her lost time from school. Thank you Mrs. Heely.

Peter’s dog, Kenzie, was hit by a car yesterday. Hurt, not time to panic. I’m going to help him get her home from the veterinary hospital today. She had some bruising and lacerations, no fractures. She is a good dog. Peter came over for an adult beverage after we left the hospital yesterday afternoon. He stayed for dinner. Thank you Peter for all of your help during this time of Havi’s illness and recovery.

Mother’s Day is approaching. I hope this will be one that Deborah remembers for years to come. What a special gift to have Havi in her life. The opportunity to make so many more memories.  The mind has an keen ability to forget physical pain.  In general we tend to remember events around physical pain, not the actual pain. Emotional pain is, unfortunately, a bit different in that it can stick around for a long time.  Deborah will remember the fear, anger and sadness associated with Havi’s illness and recovery forever.   I only hope that she has time to dilute these memories with many more from future experiences with Havi.  I’ve put aside a nice bottle of wine for this Mother’s Day.

This entry started with questions. Please remember that there are many of Life’s questions that have a right answer. Why did Havi survive? Because she is important.

Please pray.

Wednesday and my girls are doing better. They, per Deborah’s report, are doing very well. They stayed busy with the tasks of the day.

There are many people reading Havi’s recovery blog every day, thank you. We know that many of you have challenges of your own. I am thankful to be a part of Havi’s recovery, to be married to the love of my life and to have so many people caring for my family.

Please pray.

Havi is hungry. These are unusual words to say, she has Debora’s appetite. She said she wants to eat to get better.

Mrs. Heely is pleased with Havi’s progress with school work. She told Deborah that she was not sure how hard to push Havi. Push hard!

Recovery is a slow process. When I look back at the past 64 days it seems like much longer. Recovery is the goal, Havi will accept nothing less. She is stronger today than yesterday. I am looking forward to tomorrow.

Thank you to those who are going to the grocery, the cleaners and sharing your friendship in so many ways.

Please pray.

Havi went to see Dr. Ward this morning. She is doing well, no worse, maybe a bit better. Havi has more strength than I do, very strong young woman.

Havi is doing well with her homework. She keeps Deborah active, running up and down the stairs. I think there is some serious bonding in this recovery!

It promises to be a long week. A lot to do for all involved. I’m already looking forward to the weekend. The rain was a welcomed addition to the past weekend. I’m going to try to get Deborah’s garden planted.

Please pray.