Blog - Archive


The Getaway Day! The last picture in hospital and the first one at home:




We were very lucky to avoid infections during our 14-day hospital stay. Given the fact that hospitalization conditions in Poland are apalling (we were "housed" in a 16 sq.m. room with three other children and three other mums) this is nothing short of a miracle for a CF toddler. Now we can enjoy the comforts of home - Mummy tried to avoid taking days off and on many days went to work after spending the night on the hospital floor.  



The central line was removed this morning! All that is left are two neat holes where the TPN tube was stuck in Adam's jugular (again it makes me think of horror movies - see 31.10 :-))  We can now walk about the room and generally enjoy the newly-acquired freedom. Here's what it looked like "before" and "after":





Today Adaś was allowed to take the first sip of water since the day before the op!


Adam is making quick progress with his sign language - we're teaching him signs so that he can communicate with us before he is able to speak. He can now make about 45 signs, some of which he learned at the hospital. He is fascinated by trams which he can hear from the outside (the room overlooks one of Warsaw's busiest tram routes) and he makes the "tram" sign whenever he sees a tram in his little book or hears one passing by.

The other picture shows him signing "Daddy". Adam has only just heard that Daddy is coming back to Warsaw after a nine-day business trip and will visit him in the hospital shortly! That means that Mummy will be spared the hardships of sleeping on the hospital floor tonight :-)





The recovery is apace, and more often than not, boredom sets in - all that is left to do is chew on Mr Elephant's ear!





A little after noon today little Adam was transferred back to the surgical ward from the post-op room.The tricky thing is he has a tangle of tubes sticking out from all parts of his body, which will be removed one by one, but the one that will stay for about ten days is a TPN catheter stuck in little Adam's jugular. It will be quite a challenge to keep such a lively toddler occupied and prevent his little hands from wrestling with that little tube!  




Yesterday Adaś was admitted to the hospital to have his final stoma reversal op. The operation went ahead this morning as planned and the doctors were pleased with the results. The recovery process will look very much the way it looked after his previous surgery in March (description at the bottom of this page).

Adam came round in the evening and I was able to visit him in the post-op room. Leaving was difficult, as he had to remain there until the following morning and it can't have been nice to be stuck in a strange place with colourful lights, bleeping sounds, with tubes sticking from various parts of his body and having close encounters with green-clad creatures. I hope he soon gets over this unpleasant experience!



I have found this in the website and it made me smile:


You know when you are a cf parent when...

- You have used the phrase... "Never mind the broccoli right now... ice cream is really good for you" or "If you eat a bite of your swiss cake roll you can have another grape".

- You have ever weighed your child more than 3 times in a single day (especially the week before clinic).

- If you have ever glared at another parent for allowing their kid to cough within a mile or so of your CFer.

- If you have ever asked the waitress which item on the kiddie menu has the most calories and sodium?




Twice a week baby Adam has home physiotherapy sessions with a certified NDT therapist, who, for the last nine months, has been helping him build up his muscles and improve his overall strength and balance so that he can finally catch up with his peers in terms of his motor skills. Since there are no underlying neurodevelopmental issues, we can only speculate that baby Adam was so late with sitting upright (12 months), going on all fours (14 months) and walking (first attempts over the last two weeks, at 18 months) because of his extremely low weight and the hospital stays. Some of the exercises also work towards expanding his chest capacity, such as this one, which looks like quite a lot of fun!





Much in the Halloween spirit, last week we acquired our own little zombie — one that was homemade, fully-groomed, and refused to eat his greens.



Since last week’s TV schedule was generously peppered with zombie and Frankenstein-themed movies, and baby Adam has finally assumed an erect position, meaning he totters forward with outstretched arms and emits a “rha-rha-rha-rha” growl, we were quick to redub him “our sweet little zombie” a.k.a. “Frankie” (as in Frankenstein) :-) Anyone who has seen a toddler learning to walk will know what I mean!   







So the date has been set – on the 21st of November we will finally have the stoma closed and get rid of these annoying pouches stuck to baby Adam’s belly. In the meantime, we are making the best of the autumnal weather, we are riding our bicycles and visiting parks and the zoo. We can’t wait for Adam to finally learn to walk so that he can explore these places himself!



Bicycle ride:




During the last month we managed to visit Gdańsk (our beloved district of Jelitkowo) and Sarbinowo (another little seaside town of which we are really fond). This year Sarbinowo welcomed us with a pleasant surprise: a new four-meter wide beachside promenade stretching alongside the entire town and sporting comfortable wheelchair access ramps every 200 meters or so. Older brother Chris was quick to assume the promenade was a scooter racing track and made the best use of his Mini-Micro!










The most important thing is that baby Adam has not had to take any antibiotics since the spring. We believe that apart from our chest physiotherapy efforts, it is the seaside climate (a total of six weeks at the seaside since May) that helped him stay off antibiotics. Way to go Adam!

And now for something completely different – a bit of entertainment – baby Adam administering an inhalation to himself. We wish he were always that cool about his inhalation and CPT as in this little video!





Last month brought us many “firsts”. Actually, it feels more like catching up with the crowd – baby Adam has learned to stand when holding on to some furniture and he has finally mastered chewing and swallowing chunks of food. Until recently, all he was able to down was puréed food (he had a very strong gagging reflex in response to something as small as a grain of rice or a cornflake). This has enabled us to feed him a more varied diet. While Adam’s appetite is far from voracious, he has shown himself as quite a gourmet eater; during our holiday in Spain he even tried fried chorizo, prawns in batter and devilishly salty black olives.

The downside to this is the need to take extra care when adjusting his Creon doses (we have to estimate the fat content in everything that Adam ingests). Or rather estimate his appetite AND the fat content in his potential meal, since Creon needs to be administered before a meal. Take these two unknowns and tea leaf reading looks like a mere trifle! Too small a dose and we risk the onset of diarrhea, whereas if the dose is too big we risk an intestinal obstruction. These little grumbles aside, we are very happy that baby Adam’s weight seems to be on the increase and that we could enjoy so many wonderful holiday experiences.

Adam might not be a voracious eater but he surely has a huge appetite for life. He is an easy-going travel companion and despite the many inconveniences posed by his daily routine, he is a very cheerful child. 




Thanks to our new battery-operated air compressor, Adam can have his inhalation sessions and CPT outdoors!





This week we accompanied Daddy on his business trip to the seaside town of Gdańsk and have been able to inhale the salty seaside air :)




21.03 - 05.04

On 21 March baby Adam underwent a seven-hour partial stoma reversal operation. During the life-saving surgery that he had when he was just three days old he had a bowel resection and a double-barrel stoma was created, which means that the bowel was divided and all intestinal content was making its way to a stoma pouch. Adam’s colon needed to be bypassed to allow it to heal after the surgeons removed the thick and sticky meconium which clogged his intestines and could not be passed naturally after birth.

Now the doctors decided to restore his intestinal continuity and replace his double-barrel ileostomy with a Bishop-Koop stoma. The procedure revealed massive scar tissue within Adam’s abdomen and some badly destroyed bowels, and this meant that a further 30 cm of his intestine needed to be resected along with the ileocecal valve (ICV), which separates the small intestine from the large intestine, prevents the backflow of the content of the colon to the small intestine and optimizes the absorption of nutrients from food. The resection of the ICV is a very significant loss that could in the future give rise to serious digestive issues.




The most important thing, however, was that baby Adam recovered from the operation as planned and was taken off the respirator the following day. He was a very sorry sight, with a tangle of tubes protruding from various parts of his body. As days went by, the tubes were removed one by one, and the last one to stay was a TPN catheter placed in Adam’s jugular vein through which total parenteral nutrition was provided directly into the bloodstream pending the re-introduction of oral intake of food. This was the most difficult aspect of caring for Adam in the hospital because he was hooked up to an IV pump round-the-clock for 10 days and needed to be watched all the time so that he would not tear out the catheter and damage his jugular. Finally, we were allowed to give baby Adam some milk, and were overjoyed when he presented us with his first seriously dirty nappy :)



Adam took to comforting himself by sucking on one of his muslin swaddles and he was hardly ever seen without one in his mouth. The doctors kept jokingly inquiring who prescribed this highly original muslin diet. :-)  [A post scriptum note: it’s exactly the same brand that Prince George, the royal baby, was wrapped in upon leaving the hospital – yay!]





Luckily, all the wounds healed quickly, and after 16 days we were discharged from the hospital. The first thing Adam did upon returning home was to do a thorough stock-taking of the pile of toys belonging to his older brother :) 

Luckily, Chris didn’t mind at all and was very happy to see his baby brother home again.