112 Days...and more

Hi everyone. This post is long overdue. As you can imagine life at Chez Coleman is a little busy and as my brother mentioned in a comment a couple posts ago, typing is not high on the priority list when there are diapers to change, mouths to feed and babies to cuddle. Before I get into Tommy's current status, I want to fill you in on some of the story that got us where we are today.

So, as you may recall, Tom was on his own in the NICU at Memorial as of May 31 when we brought Joey home. The nurses and other staff were very generous with their love and attention for Tom - and we thank them for that. It made it easier to leave him "alone" knowing he would get plenty of lovin' from the folks there. During his solo weeks in the NICU, Tom faced a lot of challenges and toughed it out like the strongest of fighters.

The week Joe came home, Tom had gone back on CPAP - again. The treatment this time: diuretics, steroids & a VERY gradual weaning of his oxygen/air flow support. The diuretics help to get rid of excess fluid in his lungs - which is part of the process with chronic lung disease (or BPD: broncho pulmonary displasia). About a month before, we tried a very low dose, short course of steroids to help stimulate lung growth and development to fight his BPD, but didn't see any remarkable results. This time we increased the dose and the length of treatment - and were fortunate to see some decent results. We were able to very slowly take him from CPAP, to high flow cannula, to "off the wall" oxygen - similar to the system we have for him at home.

During that time, Vitale explained pulmonary hypertension to us, as this is a typical by-product of BPD. If Tom had pulmonary hypertension at the time, it seemed to be mild at most according to the echo of his heart. So they raised his oxygen saturation limits to keep his oxygenation higher. (Oxygen helps dilate blood vessels, which helps with the hypertension.) The docs didn't feel that Tom needed to go on any meds to treat it at this time. Though he did start medication to treat systemic hypertension (your run-of-the-mill high blood pressure).

In the midst of all this, Tom underwent a couple swallow studies. They confirmed that he has reflux and is indeed aspirating when swallowing - meaning, when he swallows, some of his food goes down his windpipe into his lungs. He unfortunately wasn't even coughing to get the milk out. Not a good thing for many reasons, but mostly because his lungs are already at a disadvantage with BPD. We did the study twice 3 weeks apart - and saw the same results both times. When he was finally discharged from the NICU last month, it was still too dangerous for him to take feedings by mouth, so he came home with the nasal gavage (NG) feeding tube as he had in the NICU.

A few days after Tom's second swallow study, we did what Vitale called a "milk study" to check for aspirating during reflux. Tom was given a feeding through his NG tube with some sort of radio active material added to the breast milk. Four hours later, they took a picture that captured all the traces of radioactive particles where the milk had gone in his body. That test did not confirm that he was aspirating when he refluxed and we were happy to hopefully rule out reflux as a contributor to his lung issues. In hindsight, our elation and relief were a bit premature.

Prior to discharge, we had lengthy discussions with Vitale and a handful of the NICU nurses regarding the option to have a couple surgical procedures done on Tom. First would be to put in a "G tube". This feeding tube provides a direct line to the stomach thru his belly, eliminating the need for the somewhat invasive NG tube down his throat. The second procedure would be a nissan - which uses the top of the stomach to sort of cinch-up the valve between the stomach and esophogus. These procedures would help with both reflux and swallowing - 2 issues Tom faces. Knowing he would most likely outgrow these issues, we opted to wait on the surgery for now. The stress of a surgical procedure and the risks involved outweighed the potential benefits...at the time.

After 112 days, we brought Tommy home from the NICU on Thursday, July 9. In addition to his NG tube, and nasal cannula with 3/4 liter of oxygen, he came home with a variety of medications. Needless to say, it was overwhelming to manage Tom and his needs on top of the requirements of his three brothers. The first few days were very stressful, but then we began to find our groove and it began to feel like our "new normal".

The night of July 21 and morning of July 22 Tom was having a rough time with coughing/choking spells at home. We took him to see the pediatrician. She made some changes to his medications and we seemed to see an improvement on the 23rd and 24th. On the 25th, his coughing got worse and the pediatrician decided to admit Tom to the pediatric unit at Memorial. Unfortunately, this cancelled Tim's trip to Indy with our neighbor Dave to the Brickyard NASCAR race. Instead we began a 5-day hospital stay with Tom. The level of care is certainly much different in Peds vs. the NICU. We agreed early on that one of us would stay by Tom's side for his entire stay. At the end of 5 days, Tom's oxygen requirements came down to where he was at home and his coughing fits seemed to be subsiding. There really wasn't much more the docs were prepared to do for him, so Tom was discharged and he continued to hold his own for a couple more days. On Thursday, July 30, Tom had his final appointment with the eye specialist and handled the exam like a champ. But when we got home, I noticed that he was very pale. I chalked it up to the stress of the eye exam and being late for his feeding. So we fed him and waited for his color to improve, but it didn't. I called the pediatrician and made arrangements to take him to the after hours clinic - luckily our doctor was on duty that night.

When we arrived at the clinic, Tom's oxygen saturation was very low - and even after 2 Albuterol breathing treatments it only got into the low 80s (it should be in the high 90s). That, in addition to his poor coloring, encouraged the doctor to admit him. This time we went to the Peds ICU (PICU). Upon admission, the nurses drew blood gases on Tom. His numbers were alarming enough to prompt a 2nd draw. His CO2 should have been in the 50s or even as high as the 60s but was at 128. They put him on 3 liters of high flow support at 100% oxygen. And he stayed at that level of support for a day or 2 before we were able to wean it down at all.

Call us naive - or just ignorant to the ins and outs of BPD - but we still believed that Tom would recover, get back to his 3/4 liter oxygen level and we'd take him home in a few days. Perhaps the doctors' words fell on our deaf (read: optimistic) ears. Or perhaps even they didn't catch on to just how serious Tom's condition was (and still is). We had discussions about BPD, pulmonary hypertension and other issues - but it still never settled in that our little guy was fighting much harder than we thought.

The PICU doctors raised the question again about the surgical procedures to address Tom's reflux problems. Taking reflux and risk of aspiration out of the mix could not only make Tom much more comfortable, but could give his lungs a better chance of "fixing themselves" faster and enable him to grow faster and healthier. By merely looking at the mechanics of it: Tom's NG tube was running thru his throat and down into his stomach. He's got issues with swallowing and keeping the valve between his esophogus and stomach closed. Taking the tube out of the mix would enable better swallowing and lessen reflux. So we agreed to do them both, but we knew the best place to get them done is at Riley Children's Hospital in Indianapolis. Tom's PICU doctor made a couple calls and on Wednesday, August 5 Tom was transported by ambulance from South Bend to Indy. Tim followed behind in our car and I came down the next day.

Tom was admitted to Riley's Infant Unit. On August 6 Tom got an upper GI in prep for his surgeries. Everything looked good, so he was slated for surgery on the 7th. Tim and I stayed in his hospital room the night before surgery and I was able to carry him in my arms to the surgical prep area before the procedure.

Surgery went well - though it took a bit longer than average. They were able to avoid a large incision and instead did the procedure lapriscopically (sp?). Given Tom's lung issues, it took a bit of extra effort on the surgeon's part, but he was able to successfuly perform both procedures without any complications. The complications came up AFTER surgery...

At first, Tom was resistant to waking up from the anesthesia. Then he was showing a marked resistance to weaning off the ventillator used for the procedure. A few hours later, they made room for us in the PICU and set Tom up for the night. We hoped to gradually wean him off the vent and get him back on high flow or regular nasal cannula by the following day...but no such luck. Tim and I were very frustrated, feeling that if these docs would only give our tough guy a chance, he could show them just how strong he is. We'd seen him bounce back so many times before - in the NICU and since discharge - and we honestly believed he could do it again.

Then Monday morning Dr. Ackerman came on duty in the NICU. She is on staff and is the woman in charge this week. She just happens to have 20+ years with kids that have severe BPD and pulmonary hypertension. Days later and with several tests to confirm and frank chats - we now know that's exactly what Tom has. Thanks to Dr. Ackerman's direct approach and years of experience to draw upon, we're now understanding just how tough our little fighter is.

Six days post-surgery, Tom's still on the ventillator. We've discovered that his CO2 has continued to be higher than the acceptable range. We're monitoring his CO2 levels via blood draws thru his PIC line every 4 hours and using that information to determine if we can wean him off the ventillator support gradually. We've introduced meds (the same ingredient in Viagra actually - it's a great blood vessel dilator) to address his hypertension and help with this exchange of CO2 for O2. The doc is hopeful but not optimistic that the meds alone will have much of an impact. We'll discuss it further with the doc tomorrow, but the best option for Tom may be a trachea tube and ventillator. This is the most aggressive approach to managing his BPD, but it would give him the best chance to develop as normally as possible over the next year. No guarantees, but the hope is that he would be off the ventilator and trachea tube in 18 to 24 months. At that point, we would have a healthy little boy. If we decide to go with the trachea tube and ventilator option, Tom would be in the hospital for another month. Needless to say, we got much more than we bargained for when we brought Tom down for a simple acid relux and feeding tube procedure. But, we find comfort in knowing that Riley Children's Hospital is the best place for us. Until we write, and you read, again, please remember - Never give up, don't ever give up!