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Patient and Family-Centered Care for Pediatric Intraluminal Pulmonary Vein Stenosis: Case of a 3 Year Old Patient with Focus on Nurse Practitioner Role

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Patient and Family-Centered Care for Pediatric Intraluminal Pulmonary Vein Stenosis: Case of a 3 Year Old Patient with Focus on Nurse Practitioner Role children Case Report Patient and Family-Centered Care for Pediatric Intraluminal Pulmonary Vein Stenosis: Case of a 3 Year Old Patient with Focus on Nurse Practitioner Role Christina M. Ireland 1,*, Ryan Callahan 1,2 and Kathy J. Jenkins 1,2 1 Department of Cardiology, Boston Children’s Hospital, Boston, MA 02115, USA; [email protected] (R.C.); [email protected] (K.J.J.) 2 Department of Pediatrics, Harvard Medical School, Boston, MA 02115, USA * Correspondence: [email protected] Abstract: A nurse practitioner’s experience in managing children with intraluminal pulmonary vein stenosis. A case study of a 3-year-old patient with multi–vessel intraluminal pulmonary vein stenosis. Keywords: pulmonary vein stenosis; nurse practitioner; management 1. Introduction Intraluminal Pulmonary Vein Stenosis (PVS) is a rare disorder which involves pro- gressive narrowing of the pulmonary veins and can lead to pulmonary hypertension, Citation: Ireland, C.M.; Callahan, R.; right heart failure and death [1]. PVS can occur in young infants independently, in those Jenkins, K.J. Patient and with chronic lung disease and more commonly in conjunction with complex congenital Family-Centered Care for Pediatric heart disease. Managing this disease is unlike other cardiac defects because reoccurrence Intraluminal Pulmonary Vein of the stenosis is expected due to the mechanism of the disease and is not completely Stenosis: Case of a 3 Year Old Patient understood or easily treatable. Although the pathophysiology of PVS is similar among with Focus on Nurse Practitioner patients, each patient and family brings a unique set of circumstances, and no one patient Role. Children 2021, 8, 567. is the same [2]. While our team offers state-of-the-art multimodality treatment, provision https://doi.org/10.3390/children of patient and family-centered care requires much more than medical therapy and inter- 8070567 vention. To highlight the experience of families of PVS, as well as the support provided by and unique perspective of a nurse practitioner with a decade of experience in clinical and Academic Editor: Bibhuti B. Das family support for PVS, we provide an illustrative case report and subsequent discussion of relevant issues. Parental permission was provided, and case reports at our institution Received: 1 May 2021 are not considered research and are exempt from IRB approval. Accepted: 23 June 2021 Published: 1 July 2021 A Case of a 3 Year Old with PVS Publisher’s Note: MDPI stays neutral A 3 year old ex 25 week premature twin with a history of secundum atrial septal with regard to jurisdictional claims in defect was diagnosed with multivessel PVS. published maps and institutional affil- They also had a history of bronchopulmonary dysplasia and anemia of prematurity. iations. They were presented at their local hospital surgical conference at age 5 months upon the newly diagnosed PVS. The hospital deemed them not to be a surgical candidate, and the family sought a second opinion. The lung scan performed pre-catheterization is shown in Figure1. The patient had a cardiac catheterization at 6 months of age at our institution which Copyright: © 2021 by the authors. Licensee MDPI, Basel, Switzerland. showed bilateral upper pulmonary vein involvement. They had repair of their pulmonary This article is an open access article veins which consisted of ostial resection and reimplantation of the left upper pulmonary distributed under the terms and vein (LUPV) to the left atrial appendage with anterior pulmonary homograft patch aug- conditions of the Creative Commons mentation, left atrial enlargement with anterior patch augmentation of the right upper Attribution (CC BY) license (https:// pulmonary vein (RUPV) and right middle pulmonary vein (RMPV) and subtotal ASD clo- creativecommons.org/licenses/by/ sure with a 3 mm fenestration. They were started on imatinib at postoperative day 8, once 4.0/). they had tolerated feeds and their surgical incision was well healed. They also underwent Children 2021, 8, 567. https://doi.org/10.3390/children8070567 https://www.mdpi.com/journal/children Children 2021, 8, x FOR PEER REVIEW 2 of 7 Children 2021, 8, 567 pulmonary vein (RUPV) and right middle pulmonary vein (RMPV) and subtotal ASD2 ofclo- 7 sure with a 3 mm fenestration. They were started on imatinib at postoperative day 8, once they had tolerated feeds and their surgical incision was well healed. They also underwent gastrostomygastrostomy tube tube insertion insertion for for nutritional nutritional supplement. supplement. They They were were discharged discharged back back home home withwith the the plan plan to to obtain obtain an an echocardiogram echocardiogram and and lung lung scan scan monthly. monthly. FigureFigure 1. 1. NuclearNuclear lunglung perfusionperfusion scanscan ofof aa 66month month oldold patientpatient withwith a a history history of of bilateral bilateral upper upper pulmonary vein stenosis. Image is pre-intervention. Differential pulmonary perfusion as quanti- pulmonary vein stenosis. Image is pre-intervention. Differential pulmonary perfusion as quantitated tated based on Tc-99m MAA localization is 56% left and 44% right lung. There is decreased perfu- based on Tc-99m MAA localization is 56% left and 44% right lung. There is decreased perfusion to sion to the right upper lung. Right lung is outlined in red. Left lung is outlined in blue. the right upper lung. Right lung is outlined in red. Left lung is outlined in blue. They had a cardiac catheterization at an outside hospital performed 12 weeks later They had a cardiac catheterization at an outside hospital performed 12 weeks later for for reoccurrence of RUPV, RMPV, LUPV and lingula veins and new disease in the left reoccurrence of RUPV, RMPV, LUPV and lingula veins and new disease in the left lower pulmonarylower pulmonary vein (LLPV). vein (LLPV). Because Because the LLPV the was LLPV unable was to unable be accessed to be ataccessed the local at hospital,the local theyhospital returned, they to returned Boston threeto Boston weeks three later weeks for balloon later for dilation ballo ofon thedilation RUPV of and the LUPVRUPV and and stentLUPV implantation and stent implantation in the lingula in veinthe lingula and LLPV. vein and LLPV. TheyThey continuedcontinued toto requirerequire serialserial cardiaccardiac catheterizationscatheterizations butbut theythey werewere ableable toto bebe spacedspaced out out to to an an average average of of every every 4.5 4.5 months, months, while while continuing continuing imatinib imatinib during during the the next next 22 years. years. They They were were making making developmental developmental strives strives and and nutritional nutritional gains, gains although, although they stillthey werestill were behind behind compared compared to their to fraternaltheir fraternal twin. twin. WhenWhen they they were were 2 21 /½2 years old, inability toto fracturefracture thethe LLPVLLPV stentstent waswas encountered,encountered, andand afterafter 2 2 failed failed attempts attempts in in the the catheterization catheterization lab, lab, they they were were brought brought to to the the operating operating roomroom for for removal removal of of the the stents. stents. The The operation operation consisted consisted of of opening opening of of the the stent stent and and patch patch plastyplasty of of the the LUPV LUPV and and LLPV LLPV along along with with fenestrated fenestrated ASD ASD closure closure with with 2 2 mm mm fenestration fenestration withwith pulmonary pulmonary homograft. homograft. AA plannedplanned 8-week8-week postoperativepostoperative cardiac catheterization was was obtained obtained,, and and the the angi- an- giographicographic findings findings were were significant significant for for recurrent obstruction ofof allall thethe pulmonarypulmonary veins veins includingincluding somesome ofof the the segmental segmental branches branches at at the the end end of of the the surgical surgical patch patch material. material. All All pulmonarypulmonary veins veins were were serially serially dilated dilated using using conventional conventional and and cutting cutting balloons. balloons. TheyThey were were discharged discharged home home the the following following day day with with the planthe plan to continue to continue imatinib imatinib and haveand have monthly monthly surveillance surveillance testing testing conducted conducted locally. locally. They hadThey a plannedhad a planned catheterization catheteri- scheduledzation scheduled for 12 weeks. for 12 weeks. 2. Discussion This case study is an example of a child with a history of prematurity who presented multivessel PVS along with a shunt lesion. They are being treated with multimodal Children 2021, 8, x FOR PEER REVIEW 3 of 7 2. Discussion Children 2021, 8, 567 3 of 7 This case study is an example of a child with a history of prematurity who presented multivessel PVS along with a shunt lesion. They are being treated with multimodal man- management,agement, including including surgical surgical and and catheter catheter-based-based int interventionserventions and and targeted targeted inhibition inhibition of ofmyofibroblast myofibroblast proliferation proliferation with with imatinib. imatinib. They They are are now now an anactive active toddler toddler weaned weaned off offox- oxygenygen and and continue continue on on gastrostomy gastrostomy tube tube supplemental supplemental feeds. They have hadhad ninenine cardiaccardiac catheterizationscatheterizations
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