2ja mánaða
[Bjarki is two months old today. It’s kinda freaky how quickly time has passed, but at the same time, time hasn’t passed quickly enough, i.e. he’s still in the hospital and everybody keeps saying “He’ll grow out of (insert issue)”. Today though was the first day he was dressed in a shirt that we’d brought in to the hospital. It was an open (I don’t think they accept closed onesies in the NICU, I should ask) blue/white striped long-sleeved shirt from grandma Ásdís, and I kicked myself for not bringing the camera. Hopefully he’ll still be in it tomorrow!
There’s been quite a lot of action at the hospital though. Mondays are “lab-days” where blood is drawn for all sorts of tests. They found Bjarki to be anemic enough to warrant a transfusion, which he got, so today he was a lot pinker, and quite a bit more energetic. He was also started on regular diuretics to help rid his lungs of extra fluids, but taken off the iron (constipating) and caffeine (reflux-inducing). Today was “eye-exam-day” so his pupils got dilated which he wasn’t all too happy about. They took a picture of the eye, and we’ll know the results tomorrow.
Since the first anti-acid medicine hasn’t worked very well on his reflux (100 episodes in 24 hours = ouch!), they started him on another one, and added a very low dose of antibiotics which apparently speeds up the rate at which food leaves the stomach. They also reduced the oxygen flow he’s getting to 0.1 liter (maxed at 0.5), since they’ve determined that the flow rate does not reduce his “desats”.
At noon I finally managed to complain bitterly to one of the nurse practitioners that the study he’s participating in (investigating the effect oxygen levels in the blood have on ROP, the eye-issue) is making the nurses tune down his oxygen just as soon as he settles into his “happy zone” of 94-96% blood oxygen saturation, thus contributing to his endless “desats”. This is because the study wants him at 88-92%, but Bjarki is an “all or nothing”-guy and if he’s not at 96%, he’s at 80% or below. He just doesn’t “do” 88-92%, except very briefly while moving between 96 and 80 or less.
I think I threatened to take him off the study so they changed the acceptable values back to 85-95% (That’s the norm, they’d been trying 80-92% instead, don’t ask) which hopefully means the nurses will be less inclined to turn his oxygen down quite as low. But this stuff is hard to communicate, so we’ll just have to see how things go. At any rate, when I got to the hospital after a short shopping spree at the Great Mall (baby clothes!), his oxygen setting was such that he’d “desat” ever so briefly and then come right up again. This was a nice improvement over the past few days where he’s “desatted” down to 55-77% and stayed there for a while.
Anyway, they’re trying all sorts of things to make Bjarki’s life better. The only problem is (and they know this) that they’re trying so many things at the same time, that it’s hard to figure out what is doing what. In the mean time we just have to wait until he “grows out of it”…]
Bjarki er 2ja mánaða í dag. Það er hálf ótrúlegt hvað tíminn hefur liðið hratt, en samt hefur hann ekki liðið nógu hratt því Bjarki er ennþá á spítalanum og maður heyrir ekkert annað daglangt en “hann vex upp úr (vandamáli x)”. Dagurinn í dag var samt fyrsti dagurinn þar sem hann var klæddur í föt að heiman. Fyrir valinu varð opin (ég þarf að spyrja hvort hann megi fara í samfellu) blá/hvít röndótt peysa frá ömmu Ásdísi. Ég var því miður ekki með myndavélina, en vonandi verður hann ennþá í henni á morgun.
Það er hins vegar ýmislegt búið að gerast á spítalanum. Á mánudögum eru tekin blóðsýni, og í gær var ljóst að Bjarki var orðinn það blóðlaus að hann þurfti blóðgjöf, sem og hann fékk. Hann var því bleikari og orkumeiri í dag en oft áður. Hann var líka settur á dagleg þvagræsilyfi til að losa vökva úr lungunum, en tekinn af járni (stemmandi) og koffíni (vélindabakflæðis-valdandi). Í dag voru svo teknar myndir af augunum á honum og við fáum að vita stöðuna á morgun.
Þar sem að fyrsta magalyfið virðist ekki hafa virkað nógu vel til að draga úr brjóstsviðanum sem 100 bakflæðis-köst á dag valda, þá var hann settur á nýtt magalyf, og svo fær hann núna örlítið af sýklalyfjum sem eiga víst að valda því að maginn tæmist hraðar. Svo var súrefnisflæðið minnkað niður í 0.1 (var mest 0.5) þar sem það var nokkuð ljóst að meira flæði var ekki að minnka blóð-súrefnis-dýfurnar.
Svo urraði ég loksins á yfir-hjúkkuna í dag varðandi rannsóknina sem Bjarki er þáttakandi í sem á að athuga áhrif blóðsúrefnis á augnvandamál fyrirbura. Rannsóknin segir til um að börnin eigi að fá nægilegt súrefni til að halda þeim á bilinu 88-92% í blóðsúrefnismettun, en gallinn er að þegar Bjarka líður vel þá vill hann helst vera á bilinu 94-96%. Ef honum líður ekki vel (þarf að kúka eða er með brjóstsviða) þá hrynur hann niður í 80% eða neðar. Hann sum sé vill ekkert hafa með þetta 88-92% að gera nema þegar hann er á ferðinni á milli 96% og undir 80%. Og þegar hjúkkurnar sjá hann koma sér þægilega fyrir í 96% þá lækka þær súrefnismagnið og þá hrynur hann enn frekar!
Ég held að ég hafi hótað því að kippa honum úr rannsókninni, en niðurstaðan varð amk sú að ásættanleg súrefnisgildi eru nú 85-95% (í stað 80-92%, löng saga) og vonandi þýðir það að hjúkkurnar séu aðeins minna að draga úr súrefninu. En það er erfitt að koma svona upplýsingum áfram (að vera ekki of spar á súrefnið), og því verðum við að bíða og sjá hvað gerist. En þegar ég kom úr verslunarferðinni í Great Mall í dag, þá var súrefnið ennþá þannig að þegar hann fékk magauppgang þá hrundi hann en kom snögglega upp aftur, sem var mikið betra en um hádegið í dag.
Hvað um það. Það er verið að reyna alls konar hluti til að Bjarka Frey líði betur. Gallinn er bara sá (og þau á spítalanum eru meðvituð um þetta) að það er verið að reyna svo margt í einu að það er erfitt að vita hvað virkar hvernig. Á meðan er lítið hægt að gera nema bíða eftir að hann “vaxi upp úr þessu”…
Archives
- August 2024
- July 2024
- June 2024
- May 2024
- April 2024
- March 2024
- February 2024
- January 2024
- December 2023
- November 2023
- October 2023
- September 2023
- August 2023
- July 2023
- June 2023
- May 2023
- April 2023
- March 2023
- February 2023
- January 2023
- December 2022
- November 2022
- October 2022
- September 2022
- August 2022
- July 2022
- June 2022
- May 2022
- April 2022
- March 2022
- February 2022
- January 2022
- December 2021
- November 2021
- October 2021
- September 2021
- August 2021
- July 2021
- June 2021
- May 2021
- April 2021
- March 2021
- February 2021
- January 2021
- December 2020
- November 2020
- October 2020
- September 2020
- August 2020
- July 2020
- June 2020
- May 2020
- April 2020
- March 2020
- February 2020
- January 2020
- December 2019
- November 2019
- October 2019
- September 2019
- August 2019
- July 2019
- June 2019
- May 2019
- April 2019
- March 2019
- February 2019
- January 2019
- December 2018
- November 2018
- October 2018
- September 2018
- August 2018
- July 2018
- June 2018
- May 2018
- April 2018
- March 2018
- February 2018
- January 2018
- December 2017
- November 2017
- October 2017
- September 2017
- August 2017
- July 2017
- June 2017
- May 2017
- April 2017
- March 2017
- February 2017
- January 2017
- December 2016
- November 2016
- October 2016
- September 2016
- August 2016
- July 2016
- June 2016
- May 2016
- April 2016
- March 2016
- February 2016
- January 2016
- December 2015
- November 2015
- October 2015
- September 2015
- August 2015
- July 2015
- June 2015
- May 2015
- April 2015
- March 2015
- February 2015
- January 2015
- December 2014
- November 2014
- October 2014
- September 2014
- August 2014
- July 2014
- June 2014
- May 2014
- April 2014
- March 2014
- February 2014
- January 2014
- December 2013
- November 2013
- October 2013
- September 2013
- August 2013
- July 2013
- June 2013
- May 2013
- April 2013
- March 2013
- February 2013
- January 2013
- December 2012
- November 2012
- October 2012
- September 2012
- August 2012
- July 2012
- June 2012
- May 2012
- April 2012
- March 2012
- February 2012
- January 2012
- December 2011
- November 2011
- October 2011
- September 2011
- August 2011
- July 2011
- June 2011
- May 2011
- April 2011
- March 2011
- February 2011
- January 2011
- December 2010
- November 2010
- October 2010
- September 2010
- August 2010
- July 2010
- June 2010
- May 2010
- April 2010
- March 2010
- February 2010
- January 2010
- December 2009
- November 2009
- October 2009
- September 2009
- August 2009
- July 2009
- June 2009
- May 2009
- April 2009
- March 2009
- February 2009
- January 2009
- December 2008
- November 2008
- October 2008
- September 2008
- August 2008
- July 2008
- June 2008
- May 2008
- April 2008
- March 2008
- February 2008
- January 2008
- December 2007
- November 2007
- October 2007
- September 2007
- August 2007
- July 2007
- June 2007
- May 2007
- April 2007
- March 2007
- February 2007
- January 2007
- December 2006
- November 2006
- October 2006
- September 2006
- August 2006
- July 2006
- June 2006
- May 2006
- April 2006
- March 2006
- February 2006
- January 2006
- December 2005
- November 2005
- October 2005
- September 2005
- August 2005
- July 2005
- June 2005
- May 2005
- April 2005
- March 2005
- February 2005
- January 2005
- December 2004
- November 2004
- October 2004
- September 2004
- August 2004
- July 2004
- June 2004
- May 2004
- April 2004
- March 2004
- February 2004
- January 2004
- December 2003
- November 2003
- October 2003
- September 2003
- August 2003
- July 2003
- June 2003
- May 2003
- April 2003
- March 2003
- February 2003
- January 2003
- December 2002
- November 2002
- October 2002
- September 2002
- August 2002
- July 2002
- June 2002
- May 2002
- April 2002
- March 2002
- February 2002
- January 2002
- December 2001
- November 2001
- October 2001
Categories
- Akureyri
- Anna
- Belgium
- Birthday
- Bjarki
- Canada
- Christmas
- Concert
- Confirmation
- Denmark
- Easter
- Emma
- Events
- Families
- Family
- FFF
- Finland
- Finnur's family
- France
- Friends
- Germany
- Graduation
- Guitar
- gymnastics
- Hiking
- Holland
- Hrefna
- Hrefna's family
- Iceland
- Ireland
- Italy
- Laugarvatn
- New Year's Eve
- Píanó
- snow
- Sweden
- Tenerife
- Thanksgiving
- Traveling
- UK
- Uncategorized
- Uppskriftir
- Us
- USA
- Visitors
- Weather