One Year Check-Up

The one year hurdle has been cleared.  No rejection means he has better than average chances of avoiding chronic rejection for a while.   His lungs are perhaps not moving air quite as efficiently as a healthy person but that is alright.  Not that many healthy people are skiing at altitude.  After a 14 year ski drought, Iain got back on to the slopes the weekend of his "lungaversary" Dr.

A Year Today

What a year it has been.  So many life and death events affecting our friends and family from all over the world in just a year.  On January 16th I was awake when the call came in from the transplant team.  I was awake as my close friend from Scotland had just emailed me with the sad news that her brother in Thailand had just died in his fifties leaving a young son.  Then the call came in and I had to abandon my contemplations of death - for at least for a few hours!  All of you know how awful the next few hours and days and weeks were.  I do not have to relive them.  But I have to acknowledge that on this day a year ago another family lost their child but gave our son a new chance of life.  We are incredibly grateful but their sorrow must be terrible on this anniversary for them.  

Nine Months On and Zero Rejection

The further we get from the date of transplant the less likely Iain will suffer from acute rejection.  We just got back from St. Louis where Iain underwent a bronch and biopsy.  Happily it came back all clear with no signs of acute rejection and he did not have to endure one of his famous pneumothoraces either.  (None of you had to look that up did you after Iain's experience?).

Iain is still Rejecting Rejection

Yes, we are happy to report Iain has thus far avoided acute rejection.  On the whole his results are looking decent. I have to admit on Monday evening I was feeling a little concerned because I sat in the nuclear medicine scans where you can see blood flow and air flow in the lungs.  It appeared that the lower left lobe was not moving air and blood.  Not being trained in the medical arts, despite the last 6 months crash course, I naturally jumped to conclusions and had unspoken fears, although Iain did tell me to stop looking worried.  Dr. Blatter put those to rest the next day saying that, in fact, Iain had bronchiectesis.  Essentially, the bronchial tubes in the lower left lobe have been permanently damaged due to his having suffered numerous infections or inflamation in that area.  It is part and parcel of being immunosuppressed in a way.

Sizzling St. Louis

Iain and I are back in St. Louis for his 6 month bronch and biopsy.  He has done very well in the two months since getting back to Boulder.  Iain has been making up for lost time with his gang of very close friends and has been making new pals.  I have to say that I really admire his friends for sticking with him through thick and thin.  At an age where friendships can be transient and capricious these boys have shown incredible loyalty and compassion, not just in the last six months but in the years as Iain's health, energy and wellbeing declined.

Home and Who to Thank First?

Iain and I arrived home last Saturday afternoon to a beautifully redecorated house thanks to our wonderful friend Doug Ryder.  (Just do not tell him I said that because he can be a right tyrant).  The house itself sparkled, the fridge and pantry stocked and the garden was neat and tidy thanks to a crew led by Sarah and Lisa.  Thank you to my mum, Sonia, the Pendergasts, the Mitelhaus', the Berk family, the Ropp-Maringa family, the Aiduns, the Young-Schwemms, the Abrahams, the Dowlings, the Heiser-Diddams family, and the Guild-Douhtit family.  Thank you to those who offered to help and for those care packages we received. If I have forgotten to mention anyone I am sorry.   It was such a pleasure to walk into a house and have a cup of tea with milk and just enjoy the house and garden.

Trach Removal Success

The trach removal was such a non-event that I missed it - so did Iain's nurse.  Day 2 and ENT want him to stay another night.  Everyone is scratching their heads in disbelief as he is absolutely fine.  Look how good he looks in these photos.  Izzy was the dog who visited him hours before the transplant. And Asa below has been in longer than Iain and will be in for another 5 weeks.  He has been home only for a few short weeks in his little life.

Trapped In a Season of Grey's Anatomy

After Iain's bout with neuroleptic malignancy syndrome I had shared with Sarah and Lisa that Iain's trials and tribulations were even more intense than the fiction ER or Grey's Anatomy. could cook up  Now it feels like we are characters in a hospital soap that they just do not want to get rid of.  I admit I pushed for Iain to have a swallow test before we left St. Louis as we were told that if he passed it we could have a "conversation" about removing the trach.  On Thursday he passed. Fantastic but then we had to track down ENT. His own ENT doctor had gone on maternity leave which was rather thoughless of her so we had to find another.  The lovely speech therapist who gave Iain his high marks (he can now eat with his head turned to the left to block off those recalciltrant muscles) did her best to get an answer.  

Missouri May Monsoon

It has rained constantly until today.  But with the deluge came a good week.  Iain is so much better.  John and I have felt guilty as we were not aware of the symptoms of his pneumonia.  His increased secretions and fatigue stealthily crept up and without a fever we did not suspect an infection.  We felt like very poor parents.  Now we know what his baseline is we will be more vigilant.  Iain will get a boost this weekend with Cormac visiting and then we are going to start to pack.  Iain still has to be released from general surgery and there are some issues to be wrapped up but .......

Repeat: Yay No Rejection, Pneumonia Again

Strange this pattern.  Three bronchs, three different pneumonia's.  No, really the bronchs have nothing to do with the pneumonia that was diagnosed yesterday morning but had been developing all week (we know with hindsight).  The bronch did cause the pneumothoraces which thanks to the chest tubes are clearning up.  So the chest tubes will be removed tomorrow and Iain will have to have a pic line placed to continue IV antibiotics when he gets out.  We are not sure when as his O2 is not great.  The funny thing is many moons ago when he was in the ICU, Sandeep wanted to take out the Broviac because of its potential for infection and I involuntarily said "no".  Really because I was a little afraid of removing it as it had been so useful.  CT surgery agreed but for a different reason - that it might be tricky because it had been in for so long.  So here we are almost whistful that the broviac was removed.

Syndicate content